Divorce and Childhood Chronic Illness: A Grounded Theory of Trust, Gender, and Third-Party Care Providers.

PubMed

Russell, Luke T; Coleman, Marilyn; Ganong, Lawrence H; Gayer, Debra

2016-05-01

Divorced parents face distinct challenges in providing care for chronically ill children. Children's residence in two households necessitates the development of family-specific strategies to ensure coparents' supervision of regimen adherence and the management of children's health care. Utilizing a risk and resilience perspective, a grounded theory study was conducted with 14 divorced parents of children with chronic illnesses. The importance of trust, gender, and relationships with third-party care providers emerged as key themes related to the development of effective coparenting relationships for maintaining children's health. Divorced parents were best able to support the management of their children's chronic conditions when care providers operated as neutral third parties and intermediaries. Collaborative family care may require health care practitioners to avoid being drawn into contentious inter-parental conflicts. © The Author(s) 2016.

A review of factors associated with mental health in siblings of children with chronic illness.

PubMed

Incledon, Emily; Williams, Lauren; Hazell, Trevor; Heard, Todd R; Flowers, Alexandra; Hiscock, Harriet

2015-06-01

This article reviews the literature on modifiable factors associated with mental health in siblings of children with chronic illness. Three clinical databases were searched. A total of 17 studies met the inclusion criteria. Several key themes emerged from the review. Better sibling mental health was associated with camp attendance, perceived parent/peer support, illness education and enhancing control through cognitive coping strategies and routine. Parental and sibling psychoeducation interventions and social support may enhance children's mental health when their sibling has a chronic illness. © The Author(s) 2013.

From Controlling to Letting Go: What Are the Psychosocial Needs of Parents of Adolescents with a Chronic Illness?

ERIC Educational Resources Information Center

Akre, Christina; Suris, Joan-Carles

2014-01-01

While one of the main objectives of adolescence is to achieve autonomy, for the specific population of adolescents with a chronic illness (CI), the struggle for autonomy is accentuated by the limits implied by their illness. However, little is known concerning the way their parents manage and cope with their children's autonomy acquisition.…

Impact of chronic illness on child and family: an overview based on five surveys with implications for management.

PubMed

Satterwhite, B B

1978-01-01

For the past eight years the Rochester Child Health Group has systematically investigated chronic illness in childhood with the goal of minimizing the psychosocial sequelae of chronic illness through more optimal management. This overview examines the impact of chronic illness on 404 children and their families in five separate studies: 1) 209 children in a follow-up of all children with chronic symptoms in a previous random sampling of children; 2) 42 children with juvenile arthritis; 3) 44 nephrotic children; 4) 54 asthmatic children; 5) 55 chronically ill children living in rural areas of Western New York. Information was obtained through parental interviews, school reports, and psychological testing of the child. The percentage of parents reporting impact of the child's illness on family differed according to study population. The percentage reporting areas of impact according to severity of the illness is as follows: worry, 75--97; financial, 46--60; fatigue of parent, 31--65; change in sleep arrangements, 17--31; change in furnishings, 15--40; less social life for parents, 12--35; restrictions on travel, 13--40; parental friction, 9--20; sibling neglect, 10--20; sibling resentment, 10--25; embarrassment, 12--20; interference from relatives, 5--17. Over half the parents felt their child's future education, job chances, and social life would be affected. One third reported activity limitations. Compared to a control group of children, a significantly greater percentage of parents of the chronically ill reported teacher concern about their child's effort and behavior, and showed concern about the child having too few friends. Two of the three studies in which psychological appraisals were obtained suggested that more of the ill children than controls showed indices of maladjustment. School information from two studies showed more of the ill children than controls underachieving and being referred to a school psychologist. Work by the Rochester Child Health Group has pointed up several ways in which providers of care can more optimally assist families in order to minimize these problems: 1) identifying families at risk at the onset to find which families may require special support; 2) Assuring that family and all care providers know who is orchestrating care, and that all areas of care are being provided; 3) Assuring that where necessary, an outreach person is meeting the needs of the family and child on an intensive, sustained, caring and creative basis.

The Relationship between Parental Depressive Symptoms, Family Type, and Adolescent Functioning

PubMed Central

Sieh, Dominik Sebstian; Visser-Meily, Johanna Maria Augusta; Meijer, Anne Marie

2013-01-01

It is evident that parental depressive symptoms negatively influence adolescent behavior and various psychosocial outcomes. Certain family types like families with a chronically ill parent and single parent families are more vulnerable to parental depressive symptoms. However, the relationship between these symptoms, family type, and adolescent functioning remains largely unclear. This study examined relations between self-report of parental depressive symptoms and adolescent functioning in 86 two-parent families including a parent with a chronic medical condition, 94 families with healthy single parents, and 69 families with 2 healthy parents (comparison group). Parents completed the Beck Depression Inventory. Adolescents filled in the Youth Self-Report measuring problem behavior, and other instruments measuring psychosocial outcomes (stress, grade point average, school problems, and self-esteem). Multilevel analyses were used to examine the effects of family type, parental depressive symptoms, adolescents' gender and age, and interaction effects on adolescent functioning. The results indicated that adolescents with chronically ill and single parents had a lower grade point average (p<.01) than the comparison group. Adolescents of single parents reported more internalizing problems (p<.01) and externalizing problems (p<.05) than children from the other family types. Parental depressive symptoms were strongly related to child report of stress (p<.001). Adolescents of depressed chronically ill parents were particularly vulnerable to internalizing problems (interaction effect, p<.05). Older children and girls, and especially older girls, displayed more internalizing problems and stress. It can be concluded that growing up with a chronically ill parent in a family with 2 parents may have less impact on adolescent problem behavior than growing up in a single parent family. Health practitioners are encouraged to be attentive to the unique and combined influence of family type and parental depressive symptoms on adolescent functioning. Older and female adolescents deserve particular attention. PMID:24260457

Psychological interventions for parents of children and adolescents with chronic illness

PubMed Central

Eccleston, Christopher; Palermo, Tonya M; Fisher, Emma; Law, Emily

2012-01-01

Background Psychological therapies have been developed for parents of children and adolescents with a chronic illness. Such therapies include parent only or parent and child/adolescent, and are designed to treat parent behaviour, parent mental health, child behaviour/disability, child mental health, child symptoms and/or family functioning. No comprehensive, meta-analytic reviews have been published in this area. Objectives To evaluate the effectiveness of psychological therapies that include coping strategies for parents of children/adolescents with chronic illnesses (painful conditions, cancer, diabetes mellitus, asthma, traumatic brain injury, inflammatory bowel diseases, skin diseases or gynaecological disorders). The therapy will aim to improve parent behaviour, parent mental health, child behaviour/disability, child mental health, child symptoms and family functioning. Search methods We searched CENTRAL, MEDLINE, EMBASE and PsyclNFO for randomised controlled trials (RCTs) of psychological interventions that included parents of children and adolescents with a chronic illness. The initial search was from inception of these databases to June 2011 and we conducted a follow-up search from June 2011 to March 2012. We identified additional studies from the reference list of retrieved papers and from discussion with investigators. Selection criteria Included studies were RCTs of psychological interventions that delivered treatment to parents of children and adolescents (under 19 years of age) with a chronic illness compared to active control, wait list control or treatment as usual. We excluded studies if the parent component was a coaching intervention, the aim of the intervention was health prevention/promotion, the comparator was a pharmacological treatment, the child/adolescent had an illness not listed above or the study included children with more than one type of chronic illness. Further to this, we excluded studies when the sample size of either comparator group was fewer than 10 at post-treatment. Data collection and analysis We included 35 RCTs involving a total of 2723 primary trial participants. Two review authors extracted data from 26 studies. We analysed data using two categories. First, we analysed data by each medical condition across all treatment classes at two time points (immediately post-treatment and the first available follow-up). Second, we analysed data by each treatment class (cognitive behavioural therapy (CBT), family therapy (FT), problem solving therapy (PST) and multisystemic therapy (MST)) across all medical conditions at two time points (immediately post-treatment and the first available follow-up). We assessed treatment effectiveness on six possible outcomes: parent behaviour, parent mental health, child behaviour/disability, child mental health, child symptoms and family functioning. Main results Across all treatment types, psychological therapies that included parents significantly improved child symptoms for painful conditions immediately post-treatment. Across all medical conditions, cognitive behavioural therapy (CBT) significantly improved child symptoms and problem solving therapy significantly improved parent behaviour and parent mental health immediately post-treatment. There were no other effects at post-treatment or follow-up. The risk of bias of included studies is described. Authors' conclusions There is no evidence on the effectiveness of psychological therapies that include parents in most outcome domains of functioning, for a large number of common chronic illnesses in children. There is good evidence for the effectiveness of including parents in psychological therapies that reduce pain in children with painful conditions. There is also good evidence for the effectiveness of CBT that includes parents for improving the primary symptom complaints when available data were included from chronic illness conditions. Finally, there is good evidence for the effectiveness of problem solving therapy delivered to parents on improving parent problem solving skills and parent mental health. All effects are immediately post-treatment. There are no significant findings for any treatment effects in any condition at follow-up. PMID:22895990

[Children of mentally ill parents: the impact of parental psychiatric diagnosis, comorbidity, severity and chronicity on the well-being of children].

PubMed

Wiegand-Grefe, S; Geers, P; Petermann, F; Plass, A

2011-01-01

Children of mentally ill parents are known as a high-risk population for the development of psychological disturbances. In this study, the psychiatric diagnoses, the severity and chronicity and the comorbidity of a parental mental illness as well as the non-specific parameters were examined in terms of their influence on the children's mental health. n = 62 children of psychiatric inpatients were examined regarding their psychic symptomatology, assessed with the CBCL-Parent Report Form. The psychiatric ICD-10 diagnoses and comorbidities as well as the severity (CGI) of the mentally ill parents were collected from psychiatric assessment forms. Children of parents with personality disorders (PD) are evaluated as highly affected by their parents, regardless of whether the PD is the primary or the comorbid diagnosis. Children of parents suffering from addictive disorders are seen as the least affected by their parents. Overall, children of parents with multiple diagnoses tend to be rated as more affected. Severity of illness and chronicity do not have a considerable impact on the children's development of mental health problems. Strikingly, children with a high length of exposure to a parental illness are psychologically less affected than children with shorter times of exposure. Thus, children possibly acquire effective coping mechanisms with increasing time of exposure. The results reveal the necessity of preventive programmes, especially in case of personality disorders. In addition the necessity for external assessment of the children becomes clear, especially in those cases where the parents exhibit a poor acceptance of their disease. © Georg Thieme Verlag KG Stuttgart · New York.

Children Coping with Chronic Illness.

ERIC Educational Resources Information Center

Perez, Lissette M.

Children who live with chronic illness are confronted with challenges that frequently force them to cope in myriad ways. The ways in which children face chronic illness are summarized in this literature review. Also covered, are how the effects of family can influence coping strategies and how family members, especially parents, cope with their…

Perfectionism and depression among low-income chronically ill African American and White adolescents and their maternal parent.

PubMed

Rice, Kenneth G; Tucker, Carolyn M; Desmond, Frederic F

2008-09-01

Most research on perfectionism is based on convenience samples of university students or clinically distressed samples, and therefore relatively less is known about the development and implications of perfectionism for other groups. In this study, we examined perfectionism and depression in low-income African American (n = 39) and White (n = 55) adolescents with chronic illnesses (most with diabetes, asthma, and/or hypertension) and their primary parents. We specifically examined the association between parent and child perfectionism, and the link between perfectionism and depression in both groups. The African American adolescents reported significantly more maladaptive perfectionism than did the White adolescents, and the African American parents reported significantly higher scores on depression than did the White parents. Correlations and regression analyses revealed similarities and differences in perfectionism-depression associations that might be explained in light of cultural differences and the unique physical and emotional challenges faced by youth with chronic illnesses.

Pediatric advance directives: parents' knowledge, experience, and preferences.

PubMed

Liberman, Danica B; Pham, Phung K; Nager, Alan L

2014-08-01

To explore parents' and caregivers' experience, knowledge, and preferences regarding advance directives (ADs) for children who have chronic illness. We conducted a prospective, cross-sectional survey of parents and caregivers of children who have chronic illness. During ambulatory medical visits, participants were asked about previous AD experience and knowledge, future preferences regarding AD discussions, their child's past and current health status, and family demographics. Among 307 participants surveyed, previous AD experience was low, with 117 (38.1%) having heard of an AD, 54 (17.6%) having discussed one, and 77 (25.1%) having known someone who had an AD. Furthermore, 27 (8.8%) participants had an AD or living will of their own, and 8 (2.6%) reported that their chronically ill child had an AD. Previous AD knowledge was significantly more likely among parents and caregivers who had a college degree than those who did not have a high school diploma, yet significantly less likely among primarily Spanish-speaking parents and caregivers than those primarily English-speaking. Interest in creating an AD for the child was reported by 151 (49.2%) participants, and was significantly more likely among families who had more frequent emergency department visits over the previous year. The limited AD experience and knowledge of parents and caregivers of children who have chronic illness and their interest in creating an AD suggest an unmet need among families of children who have chronic illness, and an opportunity to enhance communication between families and medical teams regarding ADs and end-of-life care. Copyright © 2014 by the American Academy of Pediatrics.

Understanding Parental Grief as a Response to Mental Illness: Implications for Practice

ERIC Educational Resources Information Center

Penzo, Jeanine A.; Harvey, Pat

2008-01-01

Parents who are raising children with mental illness struggle with feelings of grief and loss. Kubler-Ross' (1969) stages of grieving (denial, anger, bargaining, depression, and acceptance) are examined as experienced by parents raising children with chronic mental illness. Practice implications for social workers who are working with children and…

Effectiveness of a family-oriented rehabilitation program on the quality of life of parents of chronically ill children.

PubMed

West, C A; Besier, T; Borth-Bruhns, T; Goldbeck, L

2009-01-01

Parents of chronically ill children face numerous burdens in daily life, which can impair their quality of life (QoL) significantly. Therefore in family-oriented rehabilitation, not only the children themselves, but also their parents receive interventions. These aim at stabilizing parents both mentally and physically to enable them to support their children in the best possible way. This study investigates the effects of an inpatient family-oriented rehabilitation program on the QoL of parents of chronically ill children. A consecutive sample of 231 mothers and 155 fathers of children suffering from cancer, cardiac diseases or cystic fibrosis participated in the study. In a prospective longitudinal study, parental QoL was repeatedly assessed using the Ulm Quality of Life Inventory for Parents (ULQIE) at three different time points: admission to the rehabilitation clinic, discharge after four weeks of inpatient treatment, and at a six-month follow-up. Parental QoL increased markedly during rehabilitation treatment (mothers eta (2)=.326, fathers eta (2)=.249). Moreover, six months after the intervention, parental quality of life was still markedly improved compared to baseline assessment (mothers eta (2)=.259, fathers eta (2)=.069). The child's diagnosis had no effect on the level and course of parental QoL. Taking part in family-oriented rehabilitation can improve the QoL of parents of children suffering from cancer, cardiac diseases or cystic fibrosis. Such programs could be expected to affect the way chronically ill children cope with their condition and this should be examined in future studies.

Religious faith in Mexican-American families dealing with chronic childhood illness.

PubMed

Rehm, R S

1999-01-01

To explore Mexican-American family experiences with chronic childhood illness, from the perspective of parents, and report findings about the influence of religious faith on families' spiritual and secular responses to illness. Mexican-Americans are often characterized as religious, fatalistic, and passive, but families' perceptions of the consequences of their daily faith and its meaning in the face of chronic childhood illness is not well understood. Descriptive. The sample included 25 parents from 19 families living with children with a variety of chronic conditions. Data were collected in 1995-1996. Interpretive, using symbolic interaction as the framework, and in-depth interviewing for data collection. Parents professed a variety of beliefs and devotional practices. Six unifying dimensions of religious faith were related to parental caretaking and decision making for the family: (a) God determined the outcome of the child's illness, (b) God and health care for the child were closely linked, (c) parents took an active role in facilitating God's will, (d) families had obligations to God, (e) intercession with God by others was often sought by or offered to the family, and (f) faith encouraged optimism. Families were not fatalistic in the sense of feeling outcomes were predetermined and unalterable. Family members took spiritual and secular actions to assure the best possible familial and professional care for their child and sought to influence God's good will on behalf of the child and family.

Educational Functioning of Children of Parents with Chronic Physical Illness: A Systematic Review

ERIC Educational Resources Information Center

Chen, Cliff Yung-Chi

2016-01-01

A systematic review of the literature was performed to answer the question: What are the effects of parental chronic physical illness on children's educational functioning? Thirteen studies that met the inclusion criteria for the purpose of this review were identified, indicating the paucity of research on the topic. The results found that…

Adult attachment and early parental experiences in patients with Crohn's disease.

PubMed

Agostini, Alessandro; Rizzello, Fernando; Ravegnani, Gianni; Gionchetti, Paolo; Tambasco, Rosy; Straforini, Giulia; Ercolani, Mauro; Campieri, Massimo

2010-01-01

Crohn's disease (CD) is a chronic, relapsing and remitting inflammatory bowel disease. The relationship of attachment to the illness is considered to be bidirectional. The authors investigated aspects of this bidirectional relationship. A group of 102 patients with CD and 306 healthy subjects filled out the Attachment Style Questionnaire and the Parental Bonding Instrument. Patients with CD exhibit a predominantly insecure attachment and perceived their parents' behaviors as characterized by low maternal care and high paternal overprotection. The evaluation of attachment style and early parental experiences in patients with CD may shed light on the bidirectional relationship between attachment and illness. These findings may confirm the bidirectional relationship between insecure attachment and chronic illness.

Growing up with a chronic illness: social success, educational/vocational distress.

PubMed

Maslow, Gary R; Haydon, Abigail; McRee, Annie-Laurie; Ford, Carol A; Halpern, Carolyn T

2011-08-01

We compared adult educational, vocational, and social outcomes among young adults with and without childhood-onset chronic illness in a nationally representative U.S. sample. We used data from Wave IV (2008) of the National Longitudinal Study of Adolescent Health. We compared respondents who reported childhood-onset cancer, heart disease, diabetes, or epilepsy with young adults without these chronic illnesses in terms of marriage, having children, living with parents, romantic relationship quality, educational attainment, income, and employment. Multivariate models controlled for sociodemographic factors and adult-onset chronic illness. As compared with those without childhood chronic illness, respondents with childhood chronic illness had similar odds of marriage (odds ratios [OR] = .89, 95% CI: .65-1.24), having children (OR = .99, 95% CI: .70-1.42), and living with parents (OR = 1.49, 95% CI .94-2.33), and similar reports of romantic relationship quality. However, the chronic illness group had lower odds of graduating college (OR = .49, 95% CI: .31-.78) and being employed (OR = .56, 95% CI: .39-.80), and higher odds of receiving public assistance (OR = 2.13, 95% CI: 1.39-3.25), and lower mean income. Young adults growing up with chronic illness succeed socially, but are at increased risk of poorer educational and vocational outcomes. Copyright © 2011 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.

Growing Up With a Chronic Illness: Social Success, Educational/Vocational Distress

PubMed Central

Maslow, Gary R.; Haydon, Abigail; McRee, Annie-Laurie; Ford, Carol Ann; Halpern, Carolyn Tucker

2012-01-01

OBJECTIVES We compared adult educational, vocational, and social outcomes among young adults with and without childhood-onset chronic illness in a nationally representative US sample. METHODS We used data from Wave IV (2008) of the National Longitudinal Study of Adolescent Health. We compared respondents who reported childhood onset cancer, heart disease, diabetes, or epilepsy to young adults without these chronic illnesses in terms of marriage, having children, living with parents, romantic relationship quality, educational attainment, income and employment. Multivariate models controlled for socio-demographic factors and adult-onset chronic illness. RESULTS Compared to those without childhood chronic illness, respondents with childhood chronic illness had similar odds of marriage (OR=0.89, 95%CI: 0.65–1.24), having children (OR=0.99, 95%CI: 0.70–1.42), and living with parents (OR=1.49, 95%CI 0.94–2.33), and similar reports of romantic relationship quality. However, the chronic illness group had lower odds of graduating college (OR=0.49, 95%CI: 0.31–0.78) and being employed (OR=0.56, 95%CI: 0.39–0.80), and higher odds of receiving public assistance (OR=2.13, 95%CI: 1.39–3.25), and lower mean income. CONCLUSIONS Young adults growing up with chronic illness succeed socially, but are at increased risk of poorer educational and vocational outcomes. PMID:21783055

The Role of Parental and Extrafamilial Social Support in the Psychosocial Adjustment of Children with a Chronically Ill Father.

ERIC Educational Resources Information Center

Kotchick, Beth A.; Summers, Peter; Forehand, Rex; Steele, Ric G.

1997-01-01

Examines the relation between social support and psychosocial adjustment in children of men with hemophilia. Results, based on 53 families, indicate that the impact of illness, not the severity of illness itself, related to children's psychosocial adjustment. Main effects were observed for parental support on child- and parent-reported…

Loving your child to death: Considerations of the care of chronically ill children and euthanasia in Emil Sher’s Mourning Dove

PubMed Central

Mukhida, Karim

2007-01-01

How do parents cope when their child is ill or dying, and when he or she is experiencing constant pain or suffering? What do parents think of the contributions that medical professionals make to the care of their chronically or terminally ill child? Is it possible for a parent to love a child so much that they wish their child to be dead? The purpose of the present paper is to explore these questions and aspects of the care of chronically or terminally ill children using Mourning Dove’s portrayal of one family’s attempt to care for their ill daughter. Mourning Dove, a play written by Canadian playwright Emil Sher, was inspired by the case of Saskatchewan wheat farmer Robert Latimer who killed his 12-year-old daughter, Tracy, who suffered with cerebral palsy and had begun to experience tremendous pain. Rather than focusing on the medical or legal aspects of the care of a chronically ill child, the play offers a glimpse into how a family copes with the care of such a child and the effect the child’s illness has on the family. The reading and examination of nonmedical literature, such as Mourning Dove, serves as a useful means for medical professionals to better understand how illness affects and is responded to by patients and their families. This understanding is a prerequisite for them to be able to provide complete care of children with chronic or terminal illnesses and their families. PMID:19043501

Ways of understanding parental chronic pain: a typology.

PubMed

Umberger, Wendy; Martsolf, Donna; Jacobson, Ann; Risko, Judy; Calabro, Mary; Patterson, Mary

2014-12-01

Chronic non-cancer pain (CNCP) is a prevalent occurrence and is experienced by adults in their child-rearing years. Communication within the family about parental illness can be formidable, and family members are often uninformed about illness details. To date, there is no research exploring how children and adolescents understand parental chronic pain, a very complex phenomenon, and its related disability. The aim of this study was to develop a substantive theory that describes how adolescents manage the experience of living with a parent suffering with CNCP and environmental factors that help or hinder this process. Grounded theory was used, the focus of which was adolescents' processes of dealing with parental illness in the interpersonal and environmental contexts of their daily lives. A sample of 30 young adults was recruited in northeastern Ohio using theoretical sampling. During open-ended interviews, participants were asked to look back on their adolescence and talk about how they managed living with parental chronic pain. Interview transcripts and field notes were analyzed using constant comparative methods. Six ways of understanding parental chronic pain emerged from the data: noticing something is different, wrestling with not knowing, searching for answers, questioning the validity of pain, developing insight into the complexity of pain, and learning important life lessons. Findings shed light on how adolescents understand and attach meaning and significance to parental chronic pain and disability and serve as the basis for the development of personalized family interventions. Copyright © 2014 American Society for Pain Management Nursing. Published by Elsevier Inc. All rights reserved.

Family Impact and Infant Emotional Outcomes Following Diagnosis of Serious Liver Disease or Transplantation in Infancy.

PubMed

Bowden, Michael R; Ee, Looi C; Krishnan, Usha; O'Loughlin, Edward V; Hardikar, Winita; Carmody, Diana; Hainsworth, Cassandra; Jermyn, Vicki; Lee, Mee-Mee; Sawyer, Janine; Stormon, Michael; Holmes, Kathe; Lemberg, Daniel A; Day, Andrew S; Paul, Campbell; Hazell, Philip

2017-04-01

Research is lacking into the emotional effects on families of serious chronic illness in infants. We examined the effect of the diagnosis of serious liver disease in infants upon parent psychological symptoms and family functioning. We hypothesized that parent psychological symptoms, family functioning, and father engagement will predict infant emotional outcomes. Parents of infants recently diagnosed with serious liver disease completed validated questionnaires about parent stress, family function, impact of the illness on the family, and father engagement. The measures were repeated after 1 year, with the addition of the Child Behavior Checklist (CBCL). Parents of 37 infants participated. Parent stress and family functioning scores were not elevated. Parent psychological symptoms, family function, and father engagement did not predict infant outcome. For mothers, infant diagnosis other than biliary atresia, number of outpatient visits, and impact of the illness on the family explained 32% of the variation in CBCL (P = 0.001). For fathers, socioeconomic status, infant diagnosis other than biliary atresia, whether the infant had had a transplant, and impact of the illness on the family explained 44% of the variation in CBCL (P < 0.001). Parents and families appear to be resilient in coping with serious infant illness. Infant diagnosis other than biliary atresia and parental perceptions of high impact of the illness on the family are indicators of negative emotional outcomes for infants with serious liver disease. Psychosocial interventions for infants with chronic illness should target reducing the impact of illness on the family.

Group treatment for parents of the adult mentally ill.

PubMed

McLean, C S; Greer, K; Scott, J; Beck, J C

1982-07-01

Support and education groups for the families of the mentally ill have been in existence for at least 20 years. The authors describe a group treatment program established in 1979 for parents of chronically mentally ill individuals living in the community. The goal was to help parents become less overprotective, critical, and hostile so that clients would relapse less frequently and improve their social functioning during their time in the community. The groups provided parents with information and support. Some of the results of the groups include the implementation of new hospital procedures, more effective parenting, and a parent-initiated alliance on behalf of the mentally ill in the locality.

An Analysis of a Novel, Short-Term Therapeutic Psychoeducational Program for Children and Adolescents with Chronic Neurological Illness and Their Parents; Feasibility and Efficacy.

PubMed

Joo, Bonglim; Lee, Young-Mock; Kim, Heung Dong; Eom, Soyong

2017-01-01

The purpose of this intervention was to develop a therapeutic psycho-educational program that improves quality of life in children and adolescents who are experiencing chronic neurological illness, including epilepsy, and their parents, and to analyze the intervention's feasibility and efficacy and participants' satisfaction. Participants were eight children ( n = 8) and adolescents and their parents; participating children were experiencing chronic neurological illness with psychological comorbidity; children with intellectual impairment were excluded (IQ < 80). The program was carried out weekly for four sessions. In each of the 4 weeks, children's session content addressed self, emotion, coping skills, and finishing up, respectively; and parents' session content targeted family dynamic and emotional intervention, coping skills, childcare and education, and finishing up, respectively. Clinical psychologists administered psychological assessments (viz., Child Behavior Checklist, Pediatric Quality of Life Inventory, Parenting Stress Index, Beck Depression Inventory, Children's Depression Inventory, and Revised Children's Manifest Anxiety Scale) at pre- and post-intervention, and administered satisfaction surveys following the intervention. Participants' opinions about the program's necessity, contents, and process, and participants' overall program satisfaction were analyzed. Parents and children reported high levels of satisfaction with the program. Externalizing behavioral problems, anxiety/depression, and emotional functioning from quality of life showed improvement after the intervention. Although not statistically significant, total child stress trended downward from pre- to post-intervention. A four-session structured therapeutic psycho-educational program for children and adolescents with chronic neurological illness and their parents was successfully implemented, showing good compliance and high satisfaction and efficacy.

Health-related quality of life of youth with inflammatory bowel disease: a comparison with published data using the PedsQL 4.0 generic core scales.

PubMed

Kunz, Jennifer Hauser; Hommel, Kevin A; Greenley, Rachel Neff

2010-06-01

This study compared youth and parent-proxy reports of health-related quality of life (HRQoL) among youth with inflammatory bowel disease (IBD) to published comparison group data and examined concordance between youth and parent-proxy reports of HRQoL. One hundred thirty-six youth and parent-proxy reports on the PedsQL 4.0 Generic Core Scales were compared to published data from chronically ill, acutely ill, and healthy comparison groups using independent samples t-tests. Reporter agreement was examined using paired samples t-tests and intraclass correlations (ICCs). Youth with IBD reported lower psychosocial functioning than the healthy comparison group, higher physical and social functioning than the chronically ill group, and lower school functioning than all published comparison groups. Parent-proxy reports of youth HRQoL were higher than the chronically ill group, but lower than the healthy group on all scales except psychosocial functioning. Youth with active IBD reported lower physical health domain scores than youth with inactive disease. Concordance between youth and parent-proxy reports was moderate, with the lowest agreement in school and social functioning. Youth with IBD and their parents rate HRQoL as lower than healthy youth but do not perceive the impact of IBD to be as limiting as in other chronic conditions. Youth report suggests that IBD may be particularly detrimental to HRQoL in the school functioning domain. Moderate agreement between parent and youth reports substantiates continued use of multiple informants in studies of pediatric HRQoL.

Toward Conceptual Clarity in a Critical Parenting Construct: Parental Monitoring in Youth with Chronic Illness

PubMed Central

Templin, Thomas N.; Naar-King, Sylvie; Frey, Maureen A.

2008-01-01

Parental monitoring has been defined as “a set of correlated parenting behaviors involving attention to and tracking of the child's whereabouts, activities, and adaptations.” This construct is of significant interest due to its relatedness to a broad range of youth risk behaviors, including risky sexual behavior, substance abuse, and poor adherence. However, to date, measures of parental monitoring are largely absent from the chronic illness literature. The present article focuses upon two key problems in the operationalization of the monitoring construct to date: (a) poor conceptual specificity in parenting constructs such as monitoring, overprotection, and over-involvement when used to date among youth with chronic conditions and (b) the confounding of existing measures of parental monitoring with items evaluating parental knowledge of youth activities, which has resulted in a lack of data regarding the mechanisms by which parents obtain their information. Recommendations for the future development of monitoring measures are discussed. PMID:18467352

Variation in the spillover effects of illness on parents, spouses, and children of the chronically ill.

PubMed

Lavelle, Tara A; Wittenberg, Eve; Lamarand, Kara; Prosser, Lisa A

2014-04-01

Given the broad scope of the spillover effects of illness, it is important to characterize the variability in these outcomes to identify relationship types in which secondary impacts of illness are particularly important to include in health economic evaluations. To examine heterogeneity in spillover effects of chronic conditions on family members by type of familial relationship with patient. Adults (aged ≥18 years) and adolescents (aged 13-17 years) who had a parent, spouse, or child in their household with a chronic condition (Alzheimer's disease/dementia, arthritis, cancer, or depression) were recruited from a US national panel to participate in an on-line survey. Respondents were asked to rate the spillover effect of their family member's illness on their own health on a 0-100 scale, with lower scores indicating greater spillover. Regression analysis was used to evaluate the association between rating scale scores and relationship with an ill family member (ill parent, child, or spouse) for each illness separately, controlling for caregiving responsibility and the health status of the ill family member. 1,267 adults and 102 adolescents met inclusion criteria. In adjusted analyses, having a sick child was significantly (p < 0.05) associated with lower rating scale scores compared with having a spouse with the same condition (cancer: -24.2; depression -9.7). Having a non-elderly or elderly adult parent with a condition, compared with a spouse, was significantly associated with lower rating scale scores for arthritis (-3.8) and depression (-5.3), but not for Alzheimer's disease/dementia or cancer. The impact of illness on family members, measured with a rating scale, varies by relationship type for certain illnesses. Having a child with cancer, a parent with arthritis, or either with depression, is significantly associated with greater spillover, compared with having a spouse with one of these conditions.

Variation in the spillover effects of illness on parents, spouses and children of the chronically ill

PubMed Central

Lavelle, Tara A.; Wittenberg, Eve; Lamarand, Kara; Prosser, Lisa A.

2015-01-01

Background Given the broad scope of the spillover effects of illness, it is important to characterize the variability in these outcomes in order to identify relationship types in which secondary impacts of illness are particularly important to include in health economic evaluations. Purpose To examine heterogeneity in spillover effects of chronic conditions on family members by type of familial relationship with patient. Methods Adults (≥18 years) and adolescents (13-17 years) who had a parent, spouse or child in their household with a chronic condition (including Alzheimer's disease/dementia, arthritis, cancer and depression) were recruited from a U.S. national panel to participate in an on-line survey. Respondents were asked to rate the spillover effect of their family member's illness on their own health on a 0-100 scale, with lower scores indicating greater spillover. Regression analysis was used to evaluate the association between rating scale scores and relationship with ill family member (ill parent, child, or spouse) for each illness separately, controlling for caregiving responsibility and the health status of the ill family member. Results 1267 adults and 102 adolescents met inclusion criteria. In adjusted analyses, having a sick child was significantly (p<0.05) associated with lower rating scale scores compared to having a spouse with the same condition (cancer: -24.2; depression -9.7). Having a non-elderly or elderly adult parent with a condition, compared to a spouse, was significantly associated with lower rating scale scores for arthritis (-3.8) and depression (-5.3), but not for Alzheimer's disease/dementia or cancer. Conclusions The impact of illness on family members, measured with a rating scale, varies by relationship type for certain illnesses. Having a child with cancer, a parent with arthritis, or either with depression, is significantly associated with greater spillover, compared to having a spouse with one of these conditions. PMID:24590611

Siblings of children with a chronic illness: a meta-analysis.

PubMed

Sharpe, Donald; Rossiter, Lucille

2002-12-01

To review the literature pertaining to the siblings of children with a chronic illness. Fifty-one published studies and 103 effect sizes were identified and examined through meta-analysis. We found (1) a modest, negative effect size statistic existed for siblings of children with a chronic illness relative to comparison participants or normative data; (2) heterogeneity existed for those effect sizes; (3) parent reports were more negative than child self-reports; (4) psychological functioning (i.e., depression, anxiety), peer activities, and cognitive development scores were lower for siblings of children with a chronic illness compared to controls; and (5) a cluster of chronic illnesses with daily treatment regimes was associated with negative effect statistics compared to chronic illnesses that did not affect daily functioning. More methodologically sound studies investigating the psychological functioning of siblings of children with a chronic illness are needed. Clinicians need to know that siblings of children with a chronic illness are at risk for negative psychological effects. Intervention programs for the siblings and families of children with a chronic illness should be developed.

Working and caring for a child with chronic illness: A review of current literature.

PubMed

Kish, A M; Newcombe, P A; Haslam, D M

2018-05-01

Advances in medical knowledge have contributed to the increase in the number of children living with some form of long-term chronic illness or condition. As a consequence of these advancements, treatments that are more accessible and easier to administer, usually within a child's home, have been developed. However, this may mean that parents take on greater treatment responsibility and require extra time and energy to meet these tasks, additional to other responsibilities. This review paper aims to summarize and critique existing literature on working parents of children with a chronic condition, by focusing on patterns of parent work, the challenges experienced, and the flow-on consequences to well-being. Employing a narrative, meta-synthesis of the current literature, this review identified 3 key themes related to working parents of children with chronic illness. The paper first identifies that although employment is less common, these parents are not necessarily nonworking. Second, these parents experience numerous challenges including balancing work and family, time constraints, stress, and feelings of "doing it all." And third, the above challenges lead to additional impacts on parental quality of life. This review summarizes what is currently known about work patterns, challenges, and consequences in parents of children with chronic conditions. Employment is clearly impacted for these parents. Although workplace challenges have been extensively researched, other challenges (eg, personal and family) and impacts on their well-being have not. This review discusses the present standing of this research. It outlines the strengths and limitations of the current literature, makes recommendations for future research, and suggests theoretical and practical implications of the further findings. © 2018 John Wiley & Sons Ltd.

The relationship of parental overprotection, perceived child vulnerability, and parenting stress to uncertainty in youth with chronic illness.

PubMed

Mullins, Larry L; Wolfe-Christensen, Cortney; Pai, Ahna L Hoff; Carpentier, Melissa Y; Gillaspy, Stephen; Cheek, Jeff; Page, Melanie

2007-09-01

To examine the relationship of parent-reported overprotection (OP), perceived child vulnerability (PCV), and parenting stress (PS) to youth-reported illness uncertainty, and to explore potential developmental differences. Eighty-two children and 82 adolescents (n = 164) diagnosed with Type 1 diabetes mellitus (DM1) or asthma, completed a measure of illness uncertainty, while their parents completed measures of OP, PCV, and PS. After controlling for demographic and illness parameters, both PCV and PS significantly predicted youth illness uncertainty in the combined sample. Within the child group, only PS significantly predicted illness uncertainty, whereas only PCV significantly predicted uncertainty for adolescents. Specific parenting variables are associated with youth-reported illness uncertainty; however, their relationship varies according to developmental level. Although OP has been identified as a predictor of child psychological outcomes in other studies, it does not appear to be associated with illness uncertainty in youth with DM1 or asthma.

Anxiety and depression in mothers and fathers of a chronically ill child.

PubMed

van Oers, H A; Haverman, L; Limperg, P F; van Dijk-Lokkart, E M; Maurice-Stam, H; Grootenhuis, M A

2014-10-01

We aimed to determine the levels of anxiety and depression in mothers and fathers of a chronically ill child (0-18 years) and to study which parental and child variables are associated with anxiety and depression. In a cross-sectional design, anxiety and depression were assessed with the Hospital Anxiety and Depression Scale. Scores were compared to a Dutch reference group by analysis of variance and logistic regression analysis. Linear regression analyses were performed to examine which variables were associated with anxiety and depression. Mothers of a chronically ill child (n = 566) scored significantly higher than the reference group (p < .001) on anxiety (Mean 5.9 vs 4.8) and depression (Mean 4.5 vs 3.1). Fathers (n = 123) had higher depression scores (Mean 4.5 vs 3.6; p < .05), but fathers' anxiety scores were comparable to the reference group. The percentages of mothers in the clinical range of anxiety (31.8 vs 20.7 %, OR 2.03, 95 % CI 1.46-2.83) and depression (23.0 vs 12.0 %, OR 2.76, 95 % CI 1.84-4.13) were higher (p < .001) than in the reference group. No differences were found for fathers in the clinical range for anxiety and depression. Practical problems in daily life (a: β = .33, d: β = .25) and parenting stress (a: β = .30, d: β = .32) showed the strongest association with anxiety and depression for parents as a group. Illness-related characteristics of the child were not related. Parents of a chronically ill child, especially mothers, reported high levels of anxiety and depression. Awareness about parental anxiety and depression in pediatrics is important as well as targeted interventions.

Parenting and Childhood Chronicity: making visible the invisible work.

PubMed

Ray, Lynne D

2002-12-01

The work required to raise a child with a chronic illness or disability is above and beyond that of raising a typical child. This article presents a model, Parenting and Childhood Chronicity (PACC), that was developed during an interpretive study with 43 parents of 34 children (aged 15 months to 16 years) with various chronic conditions, is presented. "Special needs parenting" describes the additional care that a child needs and includes medical care, parenting plus, and working the systems. "Minimizing consequences" reflects the struggle to balance the rest of family life and includes parenting siblings, maintaining relationships, and keeping yourself going. Copyright 2002, Elsevier Science (USA). All rights reserved.

Jovenes con Discapacidades y Enfermedades Cronicas: Una Guia Introductoria para Joyenes y Padres. Revisiones de CYDLINE (Youth with Disabilities and Chronic Illnesses: An Introductory Guide for Youth and Parents. CYDLINE Reviews). Parents. CYDLINE Reviews.

ERIC Educational Resources Information Center

Minnesota Univ., Minneapolis. National Center for Youth with Disabilities.

This bibliography covers a wide range of issues related to the needs of adolescents and young adults with chronic illnesses and disabilities and their families. For each item in the bibliography, information provided includes author, title, source, date, and abstract. Price information is given when available. Materials include books, audiotapes,…

Parental overprotection, perceived child vulnerability, and parenting stress: a cross-illness comparison.

PubMed

Hullmann, Stephanie E; Wolfe-Christensen, Cortney; Ryan, Jamie L; Fedele, David A; Rambo, Philip L; Chaney, John M; Mullins, Larry L

2010-12-01

The current study sought to investigate differences in parenting capacity variables across four disease groups. Parents (N = 425), the majority of whom were mothers, of children with either cancer, asthma, Type 1 diabetes, or cystic fibrosis, completed measures of parental overprotection, perceived child vulnerability, and parenting stress. After controlling for significant demographic variables, parents of children with cystic fibrosis and asthma reported higher perceived child vulnerability than parents of children with either diabetes or cancer, while parents of children with asthma and diabetes reported higher parenting stress than parents of children with cancer or cystic fibrosis. No differences between disease groups were found for parental overprotection. The current study provides support for an illness-specific approach to understanding parenting capacity variables in the context of childhood chronic illnesses.

Health related quality of life and parental perceptions of child vulnerability among parents of a child with juvenile idiopathic arthritis: results from a web-based survey.

PubMed

Haverman, Lotte; van Oers, Hedy A; Maurice-Stam, Heleen; Kuijpers, Taco W; Grootenhuis, Martha A; van Rossum, Marion Aj

2014-01-01

A chronic illness, such as Juvenile Idiopathic Arthritis (JIA), has an impact on the whole family, especially on parents caring for the ill child. Therefore the aim of this study is to evaluate parental Health Related Quality of Life (HRQOL) and parental perceptions of child vulnerability (PPCV) and associated variables in parents of a child with JIA. Parents of all JIA patients (0-18 years) in Amsterdam, the Netherlands, were eligible. HRQOL was measured using the TNO-AZL Questionnaire (TAAQOL) and PPCV using the Child Vulnerability Scale (CVS). The HRQOL of parents of a child with JIA was compared to a norm population, and differences between parents of a child with JIA and active arthritis versus parents of a child with JIA without active arthritis were analyzed (ANOVA). For PPCV, parents of a child with JIA were compared to a norm population, including healthy and chronically ill children (Chi(2), Mann-Whitney U test). Variables associated with PPCV were identified by logistic regression analyses. 155 parents (87.5% mothers) completed online questionnaires. JIA parents showed worse HRQOL than parents of healthy children on one out of twelve domains: fine motor HRQOL (p < .001). Parents of children with active arthritis showed worse HRQOL regarding daily activities (p < .05), cognitive functioning (p < .01) and depressive emotions (p < .05) compared to parents of children without active arthritis. Parents of children with JIA perceived their child as more vulnerable than parents of a healthy child (p < .001) and parents of a chronically ill child (p < .001). Parents of children with active arthritis reported higher levels of PPCV (p < .05) than parents of children without active arthritis. A higher degree of functional disability (p < .01) and shorter disease duration (p < .05) were associated with higher levels of PPCV. The HRQOL of JIA parents was comparable to the HRQOL of parents of a healthy child. JIA parents of a child with active arthritis showed worse HRQOL than parents of a child without active arthritis. Parents perceived their child with JIA as vulnerable.

What parents of seriously ill children value: parent-to-parent connection and mentorship.

PubMed

Konrad, Shelley Cohen

2007-01-01

The value of parent-to-parent support has been noted in research with parents of children who have a range of special needs and chronic medical conditions, however, less is known about the benefit of such mentorship for parents caring for seriously ill and dying children. Findings from a qualitative study with mothers of seriously ill children, including those whose children had died, provided rich and detailed information about the personal and practical resources they received from other parents. Personal recommendations to parents by parents included the value of seeking out mentorship and appreciating the small things in life, while practical suggestions encompassed encouraging parents to become informed and to advocate for their children's best interests. Mothers also identified professionals with end-of-life training as instrumental agents of support.

Boundary Ambiguity in Parents with Chronically Ill Children: Integrating Theory and Research

ERIC Educational Resources Information Center

Berge, Jerica M.; Holm, Kristen E.

2007-01-01

This article integrates theory and research related to boundary ambiguity in parents of children with a chronic health condition. We propose that boundary ambiguity is a risk factor for psychological distress in these parents. Clinical applications and a case example highlight how boundary ambiguity can be assessed and managed in clinical settings…

Psychosocial implications of disorders of sex development treatment for parents.

PubMed

Wisniewski, Amy B

2017-01-01

Historically, studies of caregivers of children with disorders of sex development (DSD) have been limited. Recent data reveal that parents of young children with DSD report increased stress, anxiety, depression, and decreased quality of life in ways that are similar to parents of children with other types of chronic illnesses. Also similar to other chronic illnesses of childhood, parents of children with DSD exhibit overprotective parenting and perceive their child as being vulnerable. These emotions and behaviors exhibited by parents are concerning as they may limit an affected child's emotional and social development over time. Perhaps, more unique to the situation of DSD is the perceived, or real, child-focused stigma experienced by parents of children with DSD. Interventions to improve parents' psychosocial adaptation to their child's medical condition, including coaching in how to discuss their child's condition in a manner that makes them feel safe and supported, are needed to optimize outcomes for families.

The parental monitoring of diabetes care scale: development, reliability and validity of a scale to evaluate parental supervision of adolescent illness management.

PubMed

Ellis, Deborah A; Templin, Thomas N; Podolski, Cheryl-Lynn; Frey, Maureen A; Naar-King, Sylvie; Moltz, Kathleen

2008-02-01

Monitoring of adolescents' behavior and whereabouts has been repeatedly identified as an important predictor of adolescent behavioral outcomes. However, to date, measures of parental supervision and monitoring are lacking in the chronic illness literature. The present study describes development and initial evaluation of a measure of parental monitoring of the illness management of adolescents with diabetes: the Parental Monitoring of Diabetes Care scale (PMDC). Ninety-nine parents of 12-18-year-old children with type 1 diabetes completed the PMDC. Measures of illness management and metabolic control were also obtained. The PMDC demonstrated good internal consistency (alpha coefficient = .81) and test-rest reliability (ICC = .80). Supporting the instrument's construct validity, confirmatory factor analysis indicated that a five subdomain structure had an acceptable fit to the data, [chi(2) (181.65)/df (126) = 1.44, Bollen-Stine chi(2) = 165.03, p = .32, comparative fit index (CFI) = .91, and root-mean-square error of approximation = .07]. In structural equation models, parental monitoring as assessed by the PMDC had a significant direct effect on adolescent diabetes management, accounting for 38% of the variance. Parental monitoring also had a significant indirect effect on metabolic control. The PMDC represents an important first step in the development of measures of parental monitoring for use with adolescents with chronic medical conditions.

Children with Diabetes: Peer Status, Academic Achievement, and Behavior Problems.

ERIC Educational Resources Information Center

Childers, Glenna J.; Carroll, James L.

While the clinical literature frequently asserts that chronic illness negatively affects children's social development, data in support of such assertions are almost without exception obtained in clinical settings from children with chronic illness and their parents, without data from the school or community environment and without control or…

Health related quality of life and parental perceptions of child vulnerability among parents of a child with juvenile idiopathic arthritis: results from a web-based survey

PubMed Central

2014-01-01

Background A chronic illness, such as Juvenile Idiopathic Arthritis (JIA), has an impact on the whole family, especially on parents caring for the ill child. Therefore the aim of this study is to evaluate parental Health Related Quality of Life (HRQOL) and parental perceptions of child vulnerability (PPCV) and associated variables in parents of a child with JIA. Methods Parents of all JIA patients (0–18 years) in Amsterdam, the Netherlands, were eligible. HRQOL was measured using the TNO-AZL Questionnaire (TAAQOL) and PPCV using the Child Vulnerability Scale (CVS). The HRQOL of parents of a child with JIA was compared to a norm population, and differences between parents of a child with JIA and active arthritis versus parents of a child with JIA without active arthritis were analyzed (ANOVA). For PPCV, parents of a child with JIA were compared to a norm population, including healthy and chronically ill children (Chi2, Mann-Whitney U test). Variables associated with PPCV were identified by logistic regression analyses. Results 155 parents (87.5% mothers) completed online questionnaires. JIA parents showed worse HRQOL than parents of healthy children on one out of twelve domains: fine motor HRQOL (p < .001). Parents of children with active arthritis showed worse HRQOL regarding daily activities (p < .05), cognitive functioning (p < .01) and depressive emotions (p < .05) compared to parents of children without active arthritis. Parents of children with JIA perceived their child as more vulnerable than parents of a healthy child (p < .001) and parents of a chronically ill child (p < .001). Parents of children with active arthritis reported higher levels of PPCV (p < .05) than parents of children without active arthritis. A higher degree of functional disability (p < .01) and shorter disease duration (p < .05) were associated with higher levels of PPCV. Conclusion The HRQOL of JIA parents was comparable to the HRQOL of parents of a healthy child. JIA parents of a child with active arthritis showed worse HRQOL than parents of a child without active arthritis. Parents perceived their child with JIA as vulnerable. PMID:25120411

Family Stress with Chronic Childhood Illness: Cystic Fibrosis, Neuromuscular Disease, and Renal Disease.

ERIC Educational Resources Information Center

Holroyd, Jean; Guthrie, Donald

1986-01-01

Parents of children with neuromuscular disease, cystic fibrosis, and renal disease were compared with parents of control subjects matched by age to the clinical cases. The three clinical groups exhibited different patterns of stressful response, consistent with the nature of their illnesses and the requirements for care imposed on the families.…

Chronic Physical Illness and Mental Health in Children. Results from a Large-Scale Population Study

ERIC Educational Resources Information Center

Hysing, Mari; Elgen, Irene; Gillberg, Christopher; Lie, Stein Atle; Lundervold, Astri J.

2007-01-01

Background: The aim of the present study was to evaluate the sensitivity and specificity of the Strengths and Difficulties Questionnaire (SDQ) in detecting emotional and behavioural problems among children with chronic illness (CI). Methods: Parents and teachers of a population of primary school children in Norway (n = 9430) completed a…

Youth with Disabilities and Chronic Illnesses: An Introductory Guide for Youth and Parents. CYDLINE Reviews.

ERIC Educational Resources Information Center

Minnesota Univ., Minneapolis. National Center for Youth with Disabilities.

This bibliography covers a wide range of issues related to the needs of adolescents and young adults with chronic illnesses and disabilities and their families. For each item in the bibliography, information provided includes author, title, source, date, and abstract. Price information is given when available. Materials include books, audiotapes,…

Respite Care. Briefing Paper. Interim Update.

ERIC Educational Resources Information Center

Ambler, Lana; Kupper, Lisa, Ed.

The challenges that families face in caring for a child with a disability or a chronic illness are reviewed in this report on respite care. A parent's narrative describes the difficulties in providing around-the-clock care to a child with a chronic illness. The benefits of respite care are outlined as follows: gives the family peace of mind,…

Granting wishes of seriously ill children: Effects on parents' well-being.

PubMed

Chaves, Covadonga; Hervas, Gonzalo; Vazquez, Carmelo

2016-10-01

We investigated whether a positive intervention (i.e. granting a wish) in children with a chronic illness could promote positive psychological responses in their parents. Hospitalized children were randomly assigned to either the wish group or to a waiting-list control group. Mothers and fathers' responses (N = 86 and 38, respectively) were studied. Parents from the wish group showed higher levels of positive emotions and beliefs in a benevolent world than the control group. Mothers from the wish group reported higher benefit finding, gratitude, and love than those in the control group. Given that the child's illness inevitably affects their parents, it is important to promote studies that include parents' well-being dimensions. © The Author(s) 2015.

Why Weepest Thou so Sore? When a Mother's Pathway Is Fragile and Uncertain

ERIC Educational Resources Information Center

Ostler, Teresa

2012-01-01

When a mother has a severe and chronic mental illness, her pathway ahead as a parent can be fragile and uncertain. This article describes a therapeutic support group for women with mental illness and reveals how individual women responded to a group that was created to support them in the parenting role. Periods of silence followed by palpable…

Psychosocial Implications of DSD Treatment for Parents

PubMed Central

Wisniewski, Amy B.

2017-01-01

Purpose of the review Historically, studies of caregivers of children with DSD have been limited. Recent findings Recent data reveal that parents of young children with DSD report increased stress, anxiety, depression and decreased quality of life (QoL) in ways that are similar to parents of children with other types of chronic illnesses. Also similar to other chronic illnesses of childhood, parents of children with DSD exhibit overprotective parenting and perceive their child as being vulnerable. These emotions and behaviors exhibited by parents are concerning as they may limit an affected child’s emotional and social development over time. Perhaps more unique to the situation of DSD is the perceived, or real, child-focused stigma experienced by parents of children with DSD. Summary Interventions to improve parents’ psychosocial adaptation to their child’s medical condition, including coaching in how to discuss their child’s condition in a manner that makes them feel safe and supported, are needed to optimize outcomes for families. PMID:27584026

Parents' perspectives on caring for children after solid organ transplant.

PubMed

Lerret, Stacee M; Johnson, Norah L; Haglund, Kristin A

2017-07-01

To explore parents' experiences of the transition from hospital to home and complex chronic illness management following their children's solid organ transplant (SOT). Qualitative component of a larger mixed methods longitudinal study. Parents of SOT recipients were interviewed three times following hospital discharge from five major pediatric transplant hospitals in the United States. Analysis of parent interviews (N = 48) resulted in three themes that characterized the phases of transition to home and complex chronic illness care. Three themes, corresponding to the three time periods of data collection, included "getting back to normal" at 3 weeks, "becoming routine" at 3 months, and "facing a future" at 6 months. Challenges families experienced over the course of their transition are also described. The transition from hospital to home and complex chronic condition care is challenging and changes over time. Nurses are called upon to prepare parents to become knowledgeable and confident to care for the child after hospital discharge. Nurses can best support families in transition after SOT by anticipating and understanding their dynamic challenging complex care needs. © 2017 Wiley Periodicals, Inc.

Perceptions of patient education during hospital visit--described by school-age children with a chronic illness and their parents.

PubMed

Kelo, Marjatta; Eriksson, Elina; Eriksson, Ilse

2013-12-01

Families having a child with a chronic disease face changes in their everyday lives, and the whole family is involved in patient education. Nurses bear a great responsibility for patient education, but their school-age patients' and their parents' perceptions of patient education have only been studied to a limited extent. The current study aimed to explore the elements of significant patient education events during a hospital visit described by school-age children with a chronic illness and their parents. The design was qualitative and descriptive. A total of nineteen Finnish parents and their 12 children aged 5-12, suffering from chronic diseases, were interviewed using a critical incident technique. The data were analysed by deductive content analysis. The descriptions of patient education comprised cases with parents' shock at the outset of the patient education sessions and cases with the outcome of these sessions, including an experience of empowerment or lack of it. The patient education practices were examined by determining nursing, didactic and interpersonal competences. Nursing competence involved illustrations of knowledge and the ability to care for children and families as well as knowledge of the disease and its management. Didactic competence comprised practical examples of knowledge of teaching and the ability to implement the education process. Interpersonal competence manifested itself in the ability to have a dialogue. The findings show the importance of comprehensive patient education competence required of nurses giving education to families having children with chronic illnesses. This knowledge can be applied to promote nurses' professional training and to develop patient education. © 2012 The Authors Scandinavian Journal of Caring Sciences © 2012 Nordic College of Caring Science.

Young adult outcomes of children growing up with chronic illness: an analysis of the National Longitudinal Study of Adolescent Health.

PubMed

Maslow, Gary R; Haydon, Abigail A; Ford, Carol Ann; Halpern, Carolyn Tucker

2011-03-01

To examine young adult outcomes in a nationally representative US cohort of young adults growing up with a chronic illness. Secondary analysis of nationally representative data from wave III (in 2001) of the National Longitudinal Study of Adolescent Health. United States. The analytic sample comprised 13 236 young adults aged 18 to 28 years at wave III. Self-report of a chronic physical illness (asthma, cancer, diabetes mellitus, or epilepsy) in adolescence. Respondents with asthma or nonasthmatic chronic illness (cancer, diabetes mellitus, or epilepsy) were compared with individuals without these conditions. Self-report of high school graduation, ever having employment, currently having employment, living with a parent/guardian, and ever receiving public assistance. Three percent of young adults had nonasthmatic chronic illness (cancer, diabetes, or epilepsy), and 16.0% had asthma. Most young adults with chronic illness graduated high school (81.3%) and currently had employment (60.4%). However, compared with healthy young adults, those with nonasthmatic chronic illness were significantly less likely to graduate high school, ever have had employment, or currently have employment and were more likely to receive public assistance. Compared with young adults with asthma, those with nonasthmatic chronic illness again had significantly worse young adult outcomes on all measures. Most young adults growing up with a chronic illness graduate high school and have employment. However, these young adults are significantly less likely than their healthy peers to achieve these important educational and vocational milestones.

Self-esteem of children and adolescents with chronic illness: a meta-analysis.

PubMed

Pinquart, M

2013-03-01

Chronic illness may be a risk factor for low self-esteem; however, previous meta-analyses are inconclusive whether children with a chronic illness have lower self-esteem than their healthy peers. The goal of the present study was to summarize available research in order to compare the self-esteem of children and adolescents with a chronic illness with that of healthy children. Random-effects meta-analysis was used to integrate the results of 621 empirical studies that compare levels of self-esteem of children with a chronic physical illness with healthy peers or general test norms. Studies were identified via the electronic databases Adolesc, Embase, Google Scholar, MEDLINE, PSNYDEX, PSYCINFO, and cross-referencing. Children with chronic illnesses have lower self-esteem than healthy peers or test norms (g = -0.18 standard deviation units). The lowest levels of self-esteem were observed in children with chronic fatigue syndrome and chronic headaches. Lower levels of self-esteem in children with a chronic illness were found in girls than in boys, in adolescents than in children, in children from developing or threshold countries, when results were collected from observer ratings rather than child reports, in studies published in the 1990s, and when children with chronic illnesses were directly compared with healthy children instead of test norms. Paediatricians, parents, and teachers should promote experiences of success and positive peer-relations, which are important sources of self-esteem. In addition, psychosocial interventions for children with chronic illnesses should be offered for children with reduced self-esteem. © 2012 Blackwell Publishing Ltd.

How do children with a chronic or long-term illness perceive their school re-entry after a period of homebound instruction?

PubMed

Boonen, H; Petry, K

2012-07-01

A considerable number of children are confronted with a chronic or long-term illness in their lives. For these children, absenteeism is problematic, because education plays a major role in stimulating their cognitive development and in promoting a sense of normalcy and psychosocial well-being. In the literature, a great deal of attention has been paid to school reintegration programmes, which try to counter the barriers that these children may face when they return to school. Another way of surmounting these barriers is through the use of homebound instruction, in which the educational process for the child is continued during the period of absence. Despite the growing awareness of the necessity of education for these children, there is still little empirical research available addressing programmes that facilitate school re-entry. The major goal of this study is to investigate how parents and their children with a chronic or long-term illness perceive school re-entry after a period of homebound instruction, by using a descriptive-explorative, multi-informant research design. Participants were 60 children and their parents who filled in a self-constructed questionnaire. Both parents and children perceived the period of homebound instruction, as well as their school re-entry, predominantly positively. Most of the children stated that they had been able to keep up with their subjects, and that they had good contact with their peers when they returned to school. According to parents, homebound instruction made a positive contribution to the school re-entry of their child. The current study is one of the first to explore the school re-entry of children with a chronic or long-term illness. According to both parents and children, the school re-entry process passed off positively. However, more research is needed with regard to the quality of education and the programmes aimed at facilitating school re-entry. © 2011 Blackwell Publishing Ltd.

Psychosocial issues for children and adolescents with chronic illness: self-esteem, school functioning and sports participation.

PubMed

Vitulano, Lawrence A

2003-07-01

Self-esteem, school functioning, and sports participation are among the most significant psychosocial issues that affect children and adolescents with chronic illness. Although these capacities are essential components of development for all children, they present special concerns for children with limitations of health. Parents, teachers, and coaches play important roles in providing normalizing and gratifying opportunities for children who struggle to be competent and accepted by their peers. Much can be done to provide chronically ill children with experiences and support that will allow them to grow up happier, feel better about themselves, and enjoy more success.

Parents Caring For Adult Children With Serious Mental Illness.

PubMed

Raymond, Kathryn Y; Willis, Danny G; Sullivan-Bolyai, Susan

Parents often become the caregivers for their adult children with serious mental illness (SMI) due to the chronic and debilitating course of the illness and shortages in funding for community mental health services and residential placements. To examine parents' management styles when caring for adult children with SMI and parents' perspectives on what type of community-based mental health interventions would support and/or enhance overall family functioning. A qualitative descriptive study using semistructured interviews with parents caring for adult children with SMI. The study was undergirded by Knafl and Deatrick's Family Management Style Framework. Four major themes emerged from the data describing prolonged and difficult phases that parents and the family undergo in caring for an adult child with SMI. Successful management of these phases must include increasing access to mental health information, mental health screening, early interventions, and violence prevention for adult children and their families.

Psychological interventions for parents of children and adolescents with chronic illness.

PubMed

Eccleston, Christopher; Fisher, Emma; Law, Emily; Bartlett, Jess; Palermo, Tonya M

2015-04-15

Psychological therapies have been developed for parents of children and adolescents with a chronic illness. Such therapies include interventions directed at the parent only or at parent and child/adolescent, and are designed to improve parent, child, and family outcomes. This is an updated version of the original Cochrane review published in Issue 8, 2012, (Psychological interventions for parents of children and adolescents with chronic illness). To evaluate the efficacy of psychological therapies that include parents of children and adolescents with chronic illnesses including painful conditions, cancer, diabetes mellitus, asthma, traumatic brain injury (TBI), inflammatory bowel diseases (IBD), skin diseases, or gynaecological disorders. We also aimed to evaluate the adverse events related to implementation of psychological therapies for this population. Secondly, we aimed to evaluate the risk of bias of included studies and the quality of outcomes using the GRADE assessment. We searched the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, EMBASE and PsycINFO for randomised controlled trials (RCTs) of psychological interventions that included parents of children and adolescents with a chronic illness. Databases were searched to July 2014. Included studies were RCTs of psychological interventions that delivered treatment to parents of children and adolescents with a chronic illness compared to an active control, waiting list, or treatment as usual control group. Study characteristics and outcomes were extracted from included studies. We analysed data using two categories. First, we analysed data by each individual medical condition collapsing across all treatment classes at two time points. Second, we analysed data by each individual treatment class; cognitive behavioural therapy (CBT), family therapy (FT), problem solving therapy (PST) and multisystemic therapy (MST) collapsing across all medical conditions. For both sets of analyses we looked immediately post-treatment and at the first available follow-up. We assessed treatment effectiveness for two primary outcomes: parent behaviour and parent mental health. Five secondary outcomes were extracted; child behaviour/disability, child mental health, child symptoms, family functioning, and adverse events. Risk of bias and quality of evidence were assessed. Thirteen studies were added in this update, giving a total of 47 RCTs. The total number of participants included in the data analyses was 2985, 804 of whom were added to the analyses in the update. The mean age of the children was 14.6 years. Of the 47 RCTs, the studies focused on the following paediatric conditions: n = 14 painful conditions, n = 13 diabetes, n =10 cancer, n = 5 asthma, n = 4 TBI, and n = 1 atopic eczema. We did not identify any studies treating parents of children with gynaecological disorders or IBD. Risk of bias assessments of included studies were predominantly unclear. Evidence quality, assessed using the GRADE criteria, was judged to be of low or very low quality.Analyses of separate medical conditions, across all treatment types, revealed two beneficial effects of psychological therapies for our primary outcomes. First, psychological therapies led to improved adaptive parenting behaviour in parents of children with cancer post-treatment (standardised mean difference (SMD) -0.20, 95% confidence interval (CI) -0.36 to -0.04, Z = 2.44, p = 0.01). In addition, therapies also improved parent mental health at follow-up in this group (SMD = -0.18, 95% CI -0.32 to -0.04, Z = 2.58, p = 0.01). We did not find any effect of therapies for parent behaviour for parents of children with a painful condition post-treatment or at follow-up, or for parent mental health for parents of children with cancer, diabetes, asthma, or TBI post-treatment. For all other primary outcomes, no analysis could be conducted due to lack of data.Across all medical conditions, three effects were found for the primary outcomes of psychological therapies. PST had a beneficial effect on parent adaptive behaviour (SMD = -0.25, 95% CI -0.39 to -0.11, Z = 3.59, p < 0.01) and parent mental health (SMD= -0.24, 95% CI -0.42 to -0.05, Z = 2.50, p = 0.01) immediately post-treatment and this effect was maintained at follow-up for parent mental health (SMD= -0.19, 95% CI -0.34 to -0.04, Z = 2.55, p = 0.01). The remaining analysis for PST on parent behaviour found no effect. No effects were found for CBT post-treatment or at follow-up for either parent outcome. For FT, only one analysis could be run on parent mental health and no effect was found. Due to lack of data, the remaining analyses of primary outcomes could not be run. For MST, no parent outcomes could be analysed due to lack of data.Secondary outcome analyses are presented in the Results section. Five studies reported that there were no adverse events during the trial. The remaining 42 studies did not report adverse events. This update includes 13 additional studies, although our conclusions have not changed from the original version. There is little evidence for the efficacy of psychological therapies that include parents on most outcome domains of functioning, for a large number of common chronic illnesses in children. However, psychological therapies are efficacious for some outcomes. CBT that includes parents is beneficial for reducing children's primary symptoms, and PST that includes parents improved parent adaptive behaviour and parent mental health. There is evidence that the beneficial effects can be maintained at follow-up for diabetes-related symptoms in children, and for the mental health of parents of children with cancer and parents who received PST.

Young Adult Outcomes of Children Growing up with Chronic Illness: An analysis of the National Longitudinal Study of Adolescent Health

PubMed Central

Maslow, Gary R.; Haydon, Abigail; Ford, Carol Ann; Halpern, Carolyn Tucker

2012-01-01

Objective To examine young adult outcomes in a nationally representative US cohort of young adults who grew up with a chronic illness. Design Secondary analysis of nationally representative data from Wave III (2001) of the National Longitudinal Study of Adolescent Health. Setting United States Participants The analytic sample included 13,236 young adults 18–28 years old at Wave III. Main Exposure Self-report of a chronic physical illness (asthma, cancer, diabetes or epilepsy) in adolescence. Respondents with (1) asthma or (2) non-asthma chronic illness (cancer, diabetes, or epilepsy) were compared to subjects without these conditions. Main Outcome Measures Self-report of high school graduation, ever having a job, having a current job, living with parents, and ever receiving public assistance. Results Three percent of young adults had non-asthma chronic illness (cancer, diabetes, or epilepsy) and 16% had asthma. The majority of young adults with chronic illness graduated high school (81%) and were currently employed (60%). However, compared to healthy young adults, those with a non-asthma chronic illness were significantly less likely to graduate high school, ever have a job, or have a current job and were more likely to receive public assistance. When compared to young adults with asthma, young adults with non-asthma chronic illness again had significantly worse young adult outcomes on all measures. Conclusions Most young adults growing up with chronic illness graduate high school and are employed. However, these young adults are significantly less likely than their healthy peers to achieve these important educational and vocational milestones. PMID:21383274

Interactions with parents and friends among chronically ill children: examining social networks.

PubMed

Herzer, Michele; Umfress, Kris; Aljadeff, Gabriel; Ghai, Kanika; Zakowski, Sandra G

2009-12-01

Children with medical conditions often experience a combination of positive and negative social interactions with parents and friends. Adult research examining cross-domain buffering effects has documented that supportive social ties can make up for shortcomings in other social relationships. This study examined whether negative effects of strained relationships with loved ones can be buffered when children feel supported by individuals in different support networks (i.e., cross-domain buffering effects). Children with Type I diabetes (n = 56), chronic asthma (n = 54), and cystic fibrosis (n = 17) completed questionnaires during an outpatient hospital visit that assessed perceptions of support and strain from parents and friends, quality of life, self-concept, and emotional/behavioral difficulties. Parental strain was conceptualized as parental overprotection and parental rejection. Hierarchical regression analyses showed that friend support buffered the adverse effects of parental strain on child quality of life, self-concept, and emotional/behavioral difficulties. Interestingly, parental support did not buffer the negative effects of experiencing strained relationships with friends; only main effects on outcome were found. These findings partially support our hypotheses of cross-domain buffering. In this study, friendships were a protective factor for children who experienced strained relationships with parents. In contrast, although parent support had a direct impact on child outcome, it did not make up for feeling rejected by friends. Because close relationships are often strained during medical stressors, findings underscore the importance of promoting social connectedness in chronically ill children to maximize opportunities for experiencing positive social relationships.

A Developmental Analysis of the Factorial Validity of the Parent-Report Version of the Adult Responses to Children’s Symptoms in Children Versus Adolescents With Chronic Pain or Pain-Related Chronic Illness

PubMed Central

Noel, Melanie; Palermo, Tonya M.; Essner, Bonnie; Zhou, Chuan; Levy, Rona L.; Langer, Shelby L.; Sherman, Amanda L.; Walker, Lynn S.

2015-01-01

The widely used Adult Responses to Children’s Symptoms measures parental responses to child symptom complaints among youth aged 7 to 18 years with recurrent/chronic pain. Given developmental differences between children and adolescents and the impact of developmental stage on parenting, the factorial validity of the parent-report version of the Adult Responses to Children’s Symptoms with a pain-specific stem was examined separately in 743 parents of 281 children (7–11 years) and 462 adolescents (12–18 years) with chronic pain or pain-related chronic illness. Factor structures of the Adult Responses to Children’s Symptoms beyond the original 3-factor model were also examined. Exploratory factor analysis with oblique rotation was conducted on a randomly chosen half of the sample of children and adolescents as well as the 2 groups combined to assess underlying factor structure. Confirmatory factor analysis was conducted on the other randomly chosen half of the sample to cross-validate factor structure revealed by exploratory factor analyses and compare it to other model variants. Poor loading and high cross loading items were removed. A 4-factor model (Protect, Minimize, Monitor, and Distract) for children and the combined (child and adolescent) sample and a 5-factor model (Protect, Minimize, Monitor, Distract, and Solicitousness) for adolescents was superior to the 3-factor model proposed in previous literature. Future research should examine the validity of derived subscales and developmental differences in their relationships with parent and child functioning. PMID:25451623

A cognitive behavioral based group intervention for children with a chronic illness and their parents: a multicentre randomized controlled trial.

PubMed

Scholten, Linde; Willemen, Agnes M; Grootenhuis, Martha A; Maurice-Stam, Heleen; Schuengel, Carlo; Last, Bob F

2011-07-14

Coping with a chronic illness (CI) challenges children's psychosocial functioning and wellbeing. Cognitive-behavioral intervention programs that focus on teaching the active use of coping strategies may prevent children with CI from developing psychosocial problems. Involvement of parents in the intervention program may enhance the use of learned coping strategies in daily life, especially on the long-term. The primary aim of the present study is to examine the effectiveness of a cognitive behavioral based group intervention (called 'Op Koers') 1 for children with CI and of a parallel intervention for their parents. A secondary objective is to investigate why and for whom this intervention works, in order to understand the underlying mechanisms of the intervention effect. This study is a multicentre randomized controlled trial. Participants are children (8 to 18 years of age) with a chronic illness, and their parents, recruited from seven participating hospitals in the Netherlands. Participants are randomly allocated to two intervention groups (the child intervention group and the child intervention combined with a parent program) and a wait-list control group. Primary outcomes are child psychosocial functioning, wellbeing and child disease related coping skills. Secondary outcomes are child quality of life, child general coping skills, child self-perception, parental stress, quality of parent-child interaction, and parental perceived vulnerability. Outcomes are evaluated at baseline, after 6 weeks of treatment, and at a 6 and 12-month follow-up period. The analyses will be performed on the basis of an intention-to-treat population. This study evaluates the effectiveness of a group intervention improving psychosocial functioning in children with CI and their parents. If proven effective, the intervention will be implemented in clinical practice. Strengths and limitations of the study design are discussed. Current Controlled Trials ISRCTN60919570.

What the Classroom Teacher Needs to Know about Children with Chronic Medical Problems.

ERIC Educational Resources Information Center

Frieman, Barry B.; Settel, Joanne

1994-01-01

Explains the causes and symptoms of four chronic diseases (asthma, diabetes, epilepsy, and sickle cell anemia) that afflict large numbers of children, and discusses specific classroom medical procedures that teachers can use to help children with these diseases. Also provides suggestions for working with parents of chronically ill children and…

Improving mental health of adolescents with Type 1 diabetes: protocol for a randomized controlled trial of the Nothing Ventured Nothing Gained online adolescent and parenting support intervention

PubMed Central

2013-01-01

Background Management of Type 1 diabetes comes with substantial personal and psychological demands particularly during adolescence, placing young people at significant risk for mental health problems. Supportive parenting can mitigate these risks, however the challenges associated with parenting a child with a chronic illness can interfere with a parent’s capacity to parent effectively. Interventions that provide support for both the adolescent and their parents are needed to prevent mental health problems in adolescents; to support positive parent-adolescent relationships; and to empower young people to better self-manage their illness. This paper presents the research protocol for a study evaluating the efficacy of the Nothing Ventured Nothing Gained online adolescent and parenting intervention which aims to improve the mental health outcomes of adolescents with Type 1 diabetes. Method/Design A randomized controlled trial using repeated measures with two arms (intervention and wait-list control) will be used to evaluate the efficacy and acceptability of the online intervention. Approximately 120 adolescents with Type 1 diabetes, aged 13–18 years and one of their parents/guardians will be recruited from pediatric diabetes clinics across Victoria, Australia. Participants will be randomized to receive the intervention immediately or to wait 6 months before accessing the intervention. Adolescent, parent and family outcomes will be assessed via self-report questionnaires at three time points (baseline, 6 weeks and 6 months). The primary outcome is improved adolescent mental health (depression and anxiety). Secondary outcomes include adolescent behavioral (diabetes self-management and risk taking behavior), psychosocial (diabetes relevant quality of life, parent reported child well-being, self-efficacy, resilience, and perceived illness benefits and burdens); metabolic (HbA1c) outcomes; parent psychosocial outcomes (negative affect and fatigue, self-efficacy, and parent experience of child illness); and family outcomes (parent and adolescent reported parent-adolescent communication, responsibility for diabetes care, diabetes related conflict). Process variables including recruitment, retention, intervention completion and intervention satisfaction will also be assessed. Discussion The results of this study will provide valuable information about the efficacy, acceptability and therefore the viability of delivering online interventions to families affected by chronic illnesses such as Type 1 diabetes. Trial registration Australian New Zealand clinical trials registry (ANZCTR); ACTRN12610000170022 PMID:24341465

Maternal interaction style in affective disordered, physically ill, and normal women.

PubMed

Hamilton, E B; Jones, M; Hammen, C

1993-09-01

Affective style (AS) and communication deviance (CD) have been suggested as markers of dysfunctional family environments that may be associated with psychiatric illness. Studies have focused mainly on parental responses during family interactions when an offspring is the identified patient. The present study is unique in examining AS and CD in mothers with unipolar depression, bipolar disorder, or chronic physical illness, and in normal controls. The sample consisted of 64 mothers with children ages 8 to 16. Unipolar mothers were more likely to show negative AS than were any other maternal group. There were no group differences for CD. Chronic stress, few positive life events, and single parenting were associated with AS. CD was associated solely with lower socioeconomic status. Results suggest that dysfunctional interactions are determined not only by maternal psychopathology, but also by an array of contextual factors that are related to the quality of the family environment.

Parental availability for the care of sick children.

PubMed

Heymann, S J; Earle, A; Egleston, B

1996-08-01

Parents have always played a critical role in the care of sick children. Although parents' roles remain crucial to children's health, parental availability has declined during the past half century. The percentage of women with preschool children who work has risen almost fivefold in 45 years from 12% in 1947 to 58% in 1992. The percentage of women in the paid work force with school-aged children has almost tripled in the same period, from 27.3% to 75.9%. Research has examined the effects of a variety of parental work conditions on children. However, past research has not examined how working conditions affect the ability of parents to care for their sick children. In this article, we examine how often the children of working parents get sick and whether parents receive enough paid leave to care for their sick children. This analysis makes use of two national surveys, which provide complementary information regarding the care of sick children. The National Longitudinal Survey of Youth is a longitudinal survey of a nationally representative probability sample of 12,686 men and women; the National Medical Expenditure Survey is a panel survey of 34,459 people. First, we estimated the family illness burden. Second, we looked in detail at the number of days of sick leave mothers had. Third, we examined whether mothers who had sick leave had it consistently during a 5-year period. Finally, we conducted a logistic regression to determine what factors were significant predictors of both lacking sick leave. More than one in three families faced a family illness burden of 2 weeks or more each year. Yet, 28% of mothers had sick leave none of the time they were employed between 1985 and 1990. Employed mothers of children with chronic conditions had less sick leave than other employed mothers. Thirty-six percent of mothers whose children had chronic conditions had sick leave none of the time they were employed. Although 20% of working parents who did not live in poverty lacked sick leave, 38% of parents who did live in poverty lacked sick leave. The problem is also more marked for nonwhite parents. Although 23% of working white parents lacked paid sick leave, 31% of nonwhite parents lacked sick leave. One in six families that lacked sick leave had to cover for more than 4 weeks of family illness during the year. In 1993, the US Congress passed the Family and Medical Leave Act (FMLA). However, by limiting the medical leave to the care of major illnesses, primarily those requiring hospitalization, the FMLA does not address the majority of children's sick care needs. For the common childhood illnesses that are not covered by the FMLA, employed parents often must rely on their sick leave if they are to care for their sick children themselves. Yet, we found that many employed parents lack sick leave. This is particularly true of parents of children with chronic conditions and poor and minority families.

Mothers' perceptions of sibling adjustment and family life in childhood chronic illness.

PubMed

Gallo, A M; Breitmayer, B J; Knafl, K A; Zoeller, L H

1993-10-01

Researchers who study the effects of chronic illness on well siblings have generally focused on individual characteristics and their relationships with psychological adjustment. More recently, researchers suggest that sibling adjustment can be best understood within the context of the family. The purpose of this study was to examine variations in sibling behavioral adjustment in relation to mothers' perceptions of the illness experience and family life. Based on mothers' ratings on the behavior problem scale of the Child Behavior Checklist (CBCL), five siblings considered poorly adjusted and five very well-adjusted siblings were compared with respect to mothers' reports of individual family member's response to illness, illness management, parenting philosophy, presence of other stressors, availability of social supports, and impact of illness on family members and family life. Two major differences were found between mothers who rated healthy siblings either poorly or very well adjusted: (a) effects of illness on the healthy sibling, the ill child, and the marital relationship and (b) perceived controllability of the chronic illness. Devising ways of helping mothers feel confident in managing their child's illness is integral to creating an environment that promotes optimal development of their ill child and the child's siblings.

Psychological interventions for parents of children and adolescents with chronic illness

PubMed Central

Eccleston, Christopher; Fisher, Emma; Law, Emily; Bartlett, Jess; Palermo, Tonya M

2016-01-01

Background Psychological therapies have been developed for parents of children and adolescents with a chronic illness. Such therapies include interventions directed at the parent only or at parent and child/adolescent, and are designed to improve parent, child, and family outcomes. This is an updated version of the original Cochrane review published in Issue 8, 2012, (Psychological interventions for parents of children and adolescents with chronic illness). Objectives To evaluate the efficacy of psychological therapies that include parents of children and adolescents with chronic illnesses including painful conditions, cancer, diabetes mellitus, asthma, traumatic brain injury (TBI), inflammatory bowel diseases (IBD), skin diseases, or gynaecological disorders. We also aimed to evaluate the adverse events related to implementation of psychological therapies for this population. Secondly, we aimed to evaluate the risk of bias of included studies and the quality of outcomes using the GRADE assessment. Search methods We searched the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, EMBASE and PsycINFO for randomised controlled trials (RCTs) of psychological interventions that included parents of children and adolescents with a chronic illness. Databases were searched to July 2014. Selection criteria Included studies were RCTs of psychological interventions that delivered treatment to parents of children and adolescents with a chronic illness compared to an active control, waiting list, or treatment as usual control group. Data collection and analysis Study characteristics and outcomes were extracted from included studies. We analysed data using two categories. First, we analysed data by each individual medical condition collapsing across all treatment classes at two time points. Second, we analysed data by each individual treatment class; cognitive behavioural therapy (CBT), family therapy (FT), problem solving therapy (PST) and multisystemic therapy (MST) collapsing across all medical conditions. For both sets of analyses we looked immediately post-treatment and at the first available follow-up. We assessed treatment effectiveness for two primary outcomes: parent behaviour and parent mental health. Five secondary outcomes were extracted; child behaviour/disability, child mental health, child symptoms, family functioning, and adverse events. Risk of bias and quality of evidence were assessed. Main results Thirteen studies were added in this update, giving a total of 47 RCTs. The total number of participants included in the data analyses was 2985, 804 of whom were added to the analyses in the update. The mean age of the children was 14.6 years. Of the 47 RCTs, the studies focused on the following paediatric conditions: n = 14 painful conditions, n = 13 diabetes, n =10 cancer, n = 5 asthma, n = 4 TBI, and n = 1 atopic eczema. We did not identify any studies treating parents of children with gynaecological disorders or IBD. Risk of bias assessments of included studies were predominantly unclear. Evidence quality, assessed using the GRADE criteria, was judged to be of low or very low quality. Analyses of separate medical conditions, across all treatment types, revealed two beneficial effects of psychological therapies for our primary outcomes. First, psychological therapies led to improved adaptive parenting behaviour in parents of children with cancer post-treatment (standardised mean difference (SMD) −0.20, 95% confidence interval (CI) −0.36 to −0.04, Z = 2.44, p = 0.01). In addition, therapies also improved parent mental health at follow-up in this group (SMD = −0.18, 95% CI −0.32 to −0.04, Z = 2.58, p = 0.01). We did not find any effect of therapies for parent behaviour for parents of children with a painful condition post-treatment or at followup, or for parent mental health for parents of children with cancer, diabetes, asthma, or TBI post-treatment. For all other primary outcomes, no analysis could be conducted due to lack of data. Across all medical conditions, three effects were found for the primary outcomes of psychological therapies. PST had a beneficial effect on parent adaptive behaviour (SMD = −0.25, 95% CI −0.39 to −0.11, Z = 3.59, p < 0.01) and parent mental health (SMD= −0.24, 95% CI −0.42 to −0.05, Z = 2.50, p = 0.01) immediately post-treatment and this effect was maintained at follow-up for parent mental health (SMD= −0.19, 95% CI −0.34 to −0.04, Z = 2.55, p = 0.01). The remaining analysis for PST on parent behaviour found no effect. No effects were found for CBT post-treatment or at follow-up for either parent outcome. For FT, only one analysis could be run on parent mental health and no effect was found. Due to lack of data, the remaining analyses of primary outcomes could not be run. For MST, no parent outcomes could be analysed due to lack of data. Secondary outcome analyses are presented in the Results section. Five studies reported that there were no adverse events during the trial. The remaining 42 studies did not report adverse events. Authors’ conclusions This update includes 13 additional studies, although our conclusions have not changed from the original version. There is little evidence for the efficacy of psychological therapies that include parents on most outcome domains of functioning, for a large number of common chronic illnesses in children. However, psychological therapies are efficacious for some outcomes. CBT that includes parents is beneficial for reducing children’s primary symptoms, and PST that includes parents improved parent adaptive behaviour and parent mental health. There is evidence that the beneficial effects can be maintained at follow-up for diabetes-related symptoms in children, and for the mental health of parents of children with cancer and parents who received PST. PMID:25874881

Chronic physical illness and mental health in children. Results from a large-scale population study.

PubMed

Hysing, Mari; Elgen, Irene; Gillberg, Christopher; Lie, Stein Atle; Lundervold, Astri J

2007-08-01

The aim of the present study was to evaluate the sensitivity and specificity of the Strengths and Difficulties Questionnaire (SDQ) in detecting emotional and behavioural problems among children with chronic illness (CI). Parents and teachers of a population of primary school children in Norway (n = 9430) completed a questionnaire including the SDQ, and a question about chronic illness. A total of 74% (n = 7007) of the parents participated. A sub-sample (n = 1040) was given a psychiatric diagnostic evaluation according to the Development and Well-Being Assessment (DAWBA). According to parent reports, 537 (8%) children had a CI. The SDQ revealed an increased risk of emotional and behavioural problems in children with CI as compared with non-CI peers, both among boys (OR = 2.10 CI 95% 1.56-2.83) and girls (OR = 2.11 CI 95% 1.49-2.99). Children with CI also showed an increased risk of psychiatric disorder as assessed by the DAWBA (OR = 1.70 CI 95% 1.04-2.85). Both the sensitivity and specificity of the SDQ in predicting a psychiatric diagnosis were high, even when only information from parents was included. Children with CI in the general population are at increased risk of behavioural and emotional problems and psychiatric disorders. Given its high sensitivity and specificity the SDQ might work well as a screening instrument for behaviour/emotional problems and psychiatric disorder in children with CI.

Parental care and overprotection of children with cystic fibrosis.

PubMed

Cappelli, M; McGrath, P J; MacDonald, N E; Katsanis, J; Lascelles, M

1989-09-01

Parental overprotection has often been clinically associated with the psychological maladjustment of children with a chronic disease. The purpose of this study was to examine parental care and overprotection in children with cystic fibrosis compared to healthy controls. Results indicated no differences in the level of parental care or overprotection between controls and children with cystic fibrosis. However, a number of significant correlations were found between parental care and overprotection and children's psychosocial functioning. In particular, positive correlations were found between parental overprotection and poor psychosocial functioning in children with cystic fibrosis, whereas, poor psychosocial functioning in healthy children was associated with lack of parental care. Parental overprotection and care appear to play important roles in the emotional and psychological functioning of healthy and chronically ill children.

Managing childhood chronic illness: parent perspectives and implications for parent-provider relationships.

PubMed

Kratz, Lyn; Uding, Nancy; Trahms, Cristine M; Villareale, Nanci; Kieckhefer, Gail M

2009-12-01

When children have special health care needs, parents assume the roles of care coordinator, medical expert, and systems advocate as well as their typical parenting roles. They face many challenges in managing their child's chronic condition in the context of everyday life. Health care providers are uniquely positioned to assist parents in meeting those challenges and to promote parent competency and confidence in their child's care. The data for this analysis were collected during classes for parents of children with chronic conditions who took part in a randomized controlled study of a curriculum's effectiveness. During facilitated discussions, parents discussed challenges they faced and generated strategies they found helpful. Qualitative data analysis revealed dominant themes across subject areas. Challenges included social isolation, strained relationships and ongoing frustrations with health care and educational systems. Helpful strategies focused on being prepared, connecting with peers, becoming an advocate, developing partnerships and caring for one's self. Implications for health care providers include: understanding common challenges parents face; promoting parent-to-parent connections; and building partnerships with parents and their children with special needs.

Parent and Teacher Perceptions of the Impact of School Nurse Interventions on Children's Self-Management of Diabetes

ERIC Educational Resources Information Center

Peery, Annette I.; Engelke, Martha Keehner; Swanson, Melvin S.

2012-01-01

Diabetes is a common chronic illness among school-age children. The school nurse collaborates with the student, parents, and teachers to help the child manage their diabetes effectively. Very little is known about the relationship between school nurse interventions and parent/teacher perceptions of the child's self-management. We examined this…

Poverty, AIDS and child health: identifying highest-risk children in South Africa.

PubMed

Cluver, Lucie; Boyes, Mark; Orkin, Mark; Sherr, Lorraine

2013-10-11

Identifying children at the highest risk of negative health effects is a prerequisite to effective public health policies in Southern Africa. A central ongoing debate is whether poverty, orphanhood or parental AIDS most reliably indicates child health risks. Attempts to address this key question have been constrained by a lack of data allowing distinction of AIDS-specific parental death or morbidity from other causes of orphanhood and chronic illness. To examine whether household poverty, orphanhood and parental illness (by AIDS or other causes) independently or interactively predict child health, developmental and HIV-infection risks. We interviewed 6 002 children aged 10 - 17 years in 2009 - 2011, using stratified random sampling in six urban and rural sites across three South African provinces. Outcomes were child mental health risks, educational risks and HIV-infection risks. Regression models that controlled for socio-demographic co-factors tested potential impacts and interactions of poverty, AIDS-specific and other orphanhood and parental illness status. Household poverty independently predicted child mental health and educational risks, AIDS orphanhood independently predicted mental health risks and parental AIDS illness independently predicted mental health, educational and HIV-infection risks. Interaction effects of poverty with AIDS orphanhood and parental AIDS illness were found across all outcomes. No effects, or interactions with poverty, were shown by AIDS-unrelated orphanhood or parental illness. The identification of children at highest risk requires recognition and measurement of both poverty and parental AIDS. This study shows negative impacts of poverty and AIDS-specific vulnerabilities distinct from orphanhood and adult illness more generally. Additionally, effects of interaction between family AIDS and poverty suggest that, where these co-exist, children are at highest risk of all.

Autism spectrum symptoms in children with neurological disorders.

PubMed

Ryland, Hilde K; Hysing, Mari; Posserud, Maj-Britt; Gillberg, Christopher; Lundervold, Astri J

2012-11-12

The aims of the present study were to assess symptoms associated with an autism spectrum disorder (ASD) in children with neurological disorders as reported by parents and teachers on the Autism Spectrum Screening Questionnaire (ASSQ), as well as the level of agreement between informants for each child. The ASSQ was completed by parents and teachers of the 5781 children (11-13 years) who participated in the second wave of the Bergen Child Study (BCS), an on-going longitudinal population-based study. Out of these children, 496 were reported to have a chronic illness, including 99 whom had a neurological disorder. The neurological disorder group included children both with and without intellectual disabilities. Children with neurological disorders obtained significantly higher parent and teacher reported ASSQ scores than did non-chronically ill children and those with other chronic illnesses (p<.01; ES = .50-1.01), and 14.1% were screened above the positive cutoff score for ASD according to their combined parent and teacher ASSQ scores. Parent/teacher agreement over ASSQ scores for children with neurological disorders was moderate to high for the total score and for three sub scores generated from a factor analysis, and low to moderate for single items. The ASSQ identifies a high rate of ASD symptoms in children with neurological disorders, and a large number of children screened in the positive range for ASD. Although a firm conclusion awaits further clinical studies, the present results suggest that health care professionals should be aware of potential ASD related problems in children with neurological disorders, and should consider inclusion of the ASSQ or similar screening instruments as part of their routine assessment of this group of children.

Effects of Triple P parenting intervention on child health outcomes for childhood asthma and eczema: Randomised controlled trial.

PubMed

Morawska, Alina; Mitchell, Amy E; Burgess, Scott; Fraser, Jennifer

2016-08-01

Childhood chronic health conditions have considerable impact on children. We aimed to test the efficacy of a brief, group-based parenting intervention for improving illness-related child behaviour problems, parents' self-efficacy, quality of life, parents' competence with treatment, and symptom severity. A 2 (intervention vs. care as usual) by 3 (baseline, post-intervention, 6-month follow-up) design was used, with random group assignment. Participants were 107 parents of 2- to 10-year-old children with asthma and/or eczema. Parents completed self-report questionnaires, symptom diaries, and home observations were completed. The intervention comprised two 2-h group discussions based on Triple P. Parents in the intervention group reported (i) fewer eczema-related, but not asthma-related, child behaviour problems; (ii) improved self-efficacy for managing eczema, but not asthma; (iii) better quality of life for parent and family, but not child; (iv) no change in parental treatment competence; (v) reduced symptom severity, particularly for children prescribed corticosteroid-based treatments. Results demonstrate the potential for brief parenting interventions to improve childhood chronic illness management, child health outcomes, and family wellbeing. Effects were stronger for eczema-specific outcomes compared to asthma-specific outcomes. Effects on symptom severity are very promising, and further research examining effects on objective disease severity and treatment adherence is warranted. ACTRN12611000558921. Copyright © 2016 Elsevier Ltd. All rights reserved.

The impact of child care problems on employment: findings from a national survey of US parents.

PubMed

Montes, Guillermo; Halterman, Jill S

2011-01-01

Many parents struggle to secure high-quality, consistent child care services, and this may impact employment decisions. Our objectives were to determine the type of employment problems that parents attribute to difficulties in securing child care and to identify whether having a child with behavior problems and/or chronic illness is independently associated with child care-related employment problems in the United States. This study included parents of children aged 0 to 13 years by using household-level sampling from the nationally representative random digit dial survey Gallup panel. We included 9 measures of child care-related employment problems. Poststratification weights were applied based on census region, income, and education by using Stata's poststratification commands. A survey was conducted of 1431 households with at least 1 parent employed. Overall, 46% of households reported 1 or more child care-related employment change. Being absent from work (21%) and changing the work schedule (27%) were the most prevalent changes reported. Two-parent households were significantly less likely to report child care-related employment changes compared with single parent households. Households with a stay-at-home parent were less likely to report child care-related absenteeism but more likely to report recently quitting work compared with households without a stay-at-home parent. Having a child with behavior problems or a serious chronic health condition was associated with double to triple odds of many child care-related employment problems. Child care-related employment problems are common among families with a child with chronic illness or behavior problems. These findings support the need for pediatricians and policy makers to strive for the implementation of more parent-friendly labor conditions. Copyright © 2011 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.

Substance use in children of parents with chronic pain – the HUNT study

PubMed Central

Kaasbøll, Jannike; Lydersen, Stian; Indredavik, Marit S

2014-01-01

Purpose The aim of the present study was to investigate possible associations between parental chronic pain and smoking, alcohol, and drug use in adolescent offspring. Methods Cross-sectional data from Nord-Trøndelag Health Study (HUNT 3), a Norwegian population-based health survey conducted in the period 2006–2008 was utilized. The present sample consisted of adolescents aged 13–18 years (n=3,227) for whom information was available on maternal and paternal health statuses. Results Results from multivariable ordinal and binary logistic regression analyses, adjusting for potential confounding factors (child age, parental age, education, and organ specific illness) indicated that the estimated odds ratios (OR) for smoking (OR =1.72, 95% confidence interval [CI] [1.00, 3.05], P=0.049) and alcohol intoxication (drunkenness) (OR =1.56, 95% CI [1.05, 2.33], P=0.029) were higher for boys whose mother and father had chronic pain, compared with boys for whom neither parent had chronic pain. These associations were slightly attenuated by additional adjustment for pain-related factors, such as parental smoking and symptoms of anxiety and depression. Parental chronic pain was not significantly associated with girls’ levels of substance use. There were significant interaction effects between parental chronic pain and child sex on offspring’s alcohol intoxication and smoking. Conclusion The present study expands on existing knowledge and provides groundwork for preventive and specific measures targeting substance use in families burdened with parental chronic pain. PMID:25187735

Good-parent beliefs of parents of seriously ill children.

PubMed

Feudtner, Chris; Walter, Jennifer K; Faerber, Jennifer A; Hill, Douglas L; Carroll, Karen W; Mollen, Cynthia J; Miller, Victoria A; Morrison, Wynne E; Munson, David; Kang, Tammy I; Hinds, Pamela S

2015-01-01

Parents' beliefs about what they need to do to be a good parent when their children are seriously ill influence their medical decisions, and better understanding of these beliefs may improve decision support. To assess parents' perceptions regarding the relative importance of 12 good-parent attributes. A cross-sectional, discrete-choice experiment was conducted at a children's hospital. Participants included 200 parents of children with serious illness. Ratings of 12 good-parent attributes, with subsequent use of latent class analysis to identify groups of parents with similar ratings of attributes, and ascertainment of whether membership in a particular group was associated with demographic or clinical characteristics. The highest-ranked good-parent attribute was making sure that my child feels loved, followed by focusing on my child's health, making informed medical care decisions, and advocating for my child with medical staff. We identified 4 groups of parents with similar patterns of good-parent-attribute ratings, which we labeled as: child feels loved (n=68), child's health (n=56), advocacy and informed (n=55), and spiritual well-being (n=21). Compared with the other groups, the child's health group reported more financial difficulties, was less educated, and had a higher proportion of children with new complex, chronic conditions. Parents endorse a broad range of beliefs that represent what they perceive they should do to be a good parent for their seriously ill child. Common patterns of how parents prioritize these attributes exist, suggesting future research to better understand the origins and development of good-parent beliefs among these parents. More important, engaging parents individually regarding what they perceive to be the core duties they must fulfill to be a good parent may enable more customized and effective decision support.

Therapy and Counseling

MedlinePlus

... infidelity, divorce, or other relationship issues sexual problems stress and anxiety addictions and compulsions grief, loss, or bereavement anger career choice parenting or family problems phobias insomnia fertility issues chronic pain or illness domestic violence ...

Psychometric assessment of scales for a Model of Goal Directed Vegetable Parenting Practices (MGDVPP)

USDA-ARS?s Scientific Manuscript database

Vegetable intake has been related to lower risk of chronic illnesses in the adult years. The habit of vegetable intake should be established early in life, but many parents of preschoolers report not being able to get their child to eat vegetables. The Model of Goal Directed Behavior (MGDB) has been...

'The apple doesn't fall far from the tree': the role of parents in chronic disease self-management.

PubMed

Orrell-Valente, Joan K; Cabana, Michael D

2008-12-01

Medical nonadherence has been termed the "Achilles' heel of modern healthcare." In considering the need to improve medical adherence among chronically ill children, it is necessary to understand parent adherence. Parents have long been acknowledged to be the primary socialization agents in children's development across the various domains of functioning. Through communication of their beliefs, the behavior they model, and direct training, parents exert a powerful influence on the development of children's beliefs and behavior. Adherence may be similarly conceptualized as a socialization process, in which parents influence the development of children's beliefs and behavior regarding their eventual disease self-management. Given this perspective, it is important for clinicians to emphasize the need for parental adherence to a child's treatment regimen. An increased focus on parental adherence will require an investment of time and effort that will pay dividends in the long term.

Predictors of health-related quality of life in chronically ill children and adolescents over time.

PubMed

Barthel, D; Ravens-Sieberer, U; Nolte, S; Thyen, U; Klein, M; Walter, O; Meyrose, A-K; Rose, M; Otto, C

2018-06-01

This study aims at identifying predictors of generic health-related quality of life (HRQoL) in chronically ill children and adolescents over time. The newly developed computer-adaptive test Kids-CAT was used to assess five dimensions of HRQoL. Longitudinal data from the Kids-CAT study on children and adolescents with asthma, diabetes and juvenile arthritis (n = 248; aged 7-17 years) were assessed at three measurement points over six months. Individual growth modeling served to investigate effects of sociodemographic, disease- and health-related as well as psychosocial factors on HRQoL dimensions Physical Well-Being (WB), Psychological WB, Parent Relations, Social Support & Peers, and School WB over time. Besides effects of sociodemographic variables on HRQoL dimensions Social Support & Peers as well as School WB, we found that a longer duration of the disease was associated with better Physical WB. Lower scores were found for patients with juvenile arthritis compared to those with diabetes in HRQoL dimensions Physical WB and Social Support & Peers. Disease control was positively related to Physical and Psychological WB over time. Mental health problems were negatively associated with four, and subjective health complaints with all five HRQoL dimensions over time. Parental mental health was positively related to the patients' HRQoL score in Parent Relations over time. HRQoL as a multidimensional construct is associated with a wide range of different factors. Pediatricians should consider potential mental health problems and subjective health complaints in their patients. Finally, parental HRQoL can affect HRQoL in chronically ill children and adolescents. Copyright © 2018 Elsevier Inc. All rights reserved.

Quality of Life and School Absenteeism in Children With Chronic Illness.

PubMed

Emerson, Natacha D; Distelberg, Brian; Morrell, Holly E R; Williams-Reade, Jackie; Tapanes, Daniel; Montgomery, Susanne

2016-08-01

Children and adolescents with a chronic illness (CI) tend to demonstrate diminished physical and social functioning, which contribute to school attendance issues. We investigated the role of social and physical functioning in reducing school absenteeism in children participating in Mastering Each New Direction (MEND), a family-based psychosocial intervention for youths with CI. Forty-eight children and adolescents with a CI (70.8% female, M age = 14.922, SD = 2.143) and their parent(s) completed a health-related quality of life (HRQOL) measure pre- and postintervention. Using multiple mediation, we examined whether parent- and child-rated physical and social HRQOL mediated the relationship between school attendance before and after MEND. Once the mediational model was not supported, we investigated whether HRQOL moderated the relationship between missed school days pre- and postintervention. Neither physical nor social functioning mediated or moderated the relationship between missed school days pre- and postintervention. Instead, higher parent-rated physical functioning directly predicted decreased number of missed school days, while lower parent-rated social and child-rated physical functioning predicted increased missed school days. Parent-perceived HRQOL may have a direct effect on health-related behaviors such as school attendance. Future research should determine whether gains in parent-rated QOL are maintained in the long term and whether these continue to impact markers of functional well-being. © The Author(s) 2015.

The Effects of the Stay in School Truancy Program on Academic Success in Harris County, Texas

ERIC Educational Resources Information Center

Rosales, Carol Ann

2013-01-01

Chronic truancy can have dire consequences from crime and unwanted pregnancy to drug abuse and poor economic futures. Mental illness, lack of parental support, unwanted pregnancy or marriage issues, undocumented immigrant status, drug abuse, and crime are reasons students become chronically truant. Accountability measures passed down from the…

Narratives by Japanese mothers with chronic mental illness in the Tokyo metropolitan area: their feelings toward their children and perceptions of their children's feelings.

PubMed

Ueno, Rie; Kamibeppu, Kiyoko

2008-07-01

Women with mental illness generally have normal fertility rates. Mothers with mental illness think that their children are important for their lives but also experience difficulties in relating to their children. Therefore, it is important to understand the mothers' perception of what experiences influence them or their parenting practices in relationships with their children. We conducted narrative interviews with 20 Japanese mothers who were being treated for either schizophrenia or mood disorders. The data were analyzed using the Modified Grounded Theory Approach. For the mothers, their feelings toward their children and their perception of their children's feelings toward them or their illness influenced the mothers and their parenting practices. Implications for support are discussed and directions for future research are presented.

Shared decision making among parents of children with mental health conditions compared to children with chronic physical conditions.

PubMed

Butler, Ashley M; Elkins, Sara; Kowalkowski, Marc; Raphael, Jean L

2015-02-01

High quality care in pediatrics involves shared decision making (SDM) between families and providers. The extent to which children with common mental health disorders experience SDM is not well known. The objectives of this study were to examine how parent-reported SDM varies by child health (physical illness, mental health condition, and comorbid mental and physical conditions) and to examine whether medical home care attenuates any differences. We analyzed data on children (2-17 years) collected through the 2009/2010 National Survey of Children with Special Health Care Needs. The sample consisted of parents of children in one of three child health categories: (1) children with a chronic physical illness but no mental health condition; (2) children with a common mental health condition but no chronic physical condition; and (3) children with comorbid mental and chronic physical conditions. The primary dependent variable was parent-report of provider SDM. The primary independent variable was health condition category. Multivariate linear regression analyses were conducted. Multivariate analyses controlling for sociodemographic variables and parent-reported health condition impact indicated lower SDM among children with a common mental health condition-only (B = -0.40; p < 0.01) and children with comorbid conditions (B = -0.67; p < 0.01) compared to children with a physical condition-only. Differences in SDM for children with a common mental health condition-only were no longer significant in the model adjusting for medical home care. However, differences in SDM for children with comorbid conditions persisted after adjusting for medical home care. Increasing medical home care may help mitigate differences in SDM for children with mental health conditions-only. Other interventions may be needed to improve SDM among children with comorbid mental and physical conditions.

24 CFR 891.665 - Project size limitations.

Code of Federal Regulations, 2010 CFR

2010-04-01

... complexes for chronically mentally ill individuals may not be designed to serve more than 20 persons on one... handicapped families of one or two parents with children. (b) Additional limitations. Based on the amount of...

Emerging communities of child-healthcare practice in the management of long-term conditions such as chronic kidney disease: qualitative study of parents' accounts.

PubMed

Carolan, Ian; Smith, Trish; Hall, Andy; Swallow, Veronica M

2014-07-07

Parents of children and young people with long-term conditions who need to deliver clinical care to their child at home with remote support from hospital-based professionals, often search the internet for care-giving information. However, there is little evidence that the information available online was developed and evaluated with parents or that it acknowledges the communities of practice that exist as parents and healthcare professionals share responsibility for condition management. The data reported here are part of a wider study that developed and tested a condition-specific, online parent information and support application with children and young people with chronic-kidney disease, parents and professionals. Semi-structured interviews were conducted with 19 fathers and 24 mothers who had recently tested the novel application. Data were analysed using Framework Analysis and the Communities of Practice concept. Evolving communities of child-healthcare practice were identified comprising three components and several sub components: (1) Experiencing (parents making sense of clinical tasks) through Normalising care, Normalising illness, Acceptance & action, Gaining strength from the affected child and Building relationships to formalise a routine; (2) Doing (Parents executing tasks according to their individual skills) illustrated by Developing coping strategies, Importance of parents' efficacy of care and Fear of the child's health failing; and (3) Belonging/Becoming (Parents defining task and group members' worth and creating a personal identity within the community) consisting of Information sharing, Negotiation with health professionals and Achieving expertise in care. Parents also recalled factors affecting the development of their respective communities of healthcare practice; these included Service transition, Poor parent social life, Psycho-social affects, Family chronic illness, Difficulty in learning new procedures, Shielding and avoidance, and Language and cultural barriers. Health care professionals will benefit from using the communities of child-healthcare practice model when they support parents of children with chronic kidney disease. Understanding some of the factors that may influence the development of communities of child-healthcare practice will help professionals to tailor information and support for parents learning to manage their child's healthcare. Our results are potentially transferrable to professionals managing the care of children and young people with other long-term conditions.

Religious/Spiritual Coping in Adolescents with Sickle Cell Disease

PubMed Central

Cotton, Sian; Grossoehme, Daniel; Rosenthal, Susan L.; McGrady, Meghan E.; Roberts, Yvonne Humenay; Hines, Janelle; Yi, Michael S.; Tsevat, Joel

2009-01-01

Religious/spiritual (R/S) coping has been associated with health outcomes in chronically ill adults; however, little is known about how adolescents use R/S to cope with a chronic illness such as sickle cell disease (SCD). Using a mixed method approach (quantitative surveys and qualitative interviews), we examined R/S coping, spirituality, and health-related quality of life in 48 adolescents with SCD and 42 parents of adolescents with SCD. Adolescents reported high rates of religious attendance and belief in God, prayed often, and had high levels of spirituality (e.g., finding meaning/peace in their lives and deriving comfort from faith). Thirty-five percent of adolescents reported praying once or more a day for symptom management. The most common positive R/S coping strategies used by adolescents were: “Asked forgiveness for my sins” (73% of surveys) and “Sought God’s love and care” (73% of surveys). Most parents used R/S coping strategies to cope with their child’s illness. R/S coping was not significantly associated with HRQOL (p = NS). R/S coping, particularly prayer, was relevant for adolescents with SCD and their parents. Future studies should assess adolescents’ preferences for discussing R/S in the medical setting and whether R/S coping is related to HRQOL in larger samples. PMID:19415008

My child is diagnosed with asthma, now what?: motivating parents to help their children control asthma.

PubMed

Stepney, Cesalie; Kane, Katelyn; Bruzzese, Jean-Marie

2011-10-01

Pediatric asthma is often undiagnosed, and therefore untreated. It negatively impacts children's functioning, including school attendance and performance, as well as quality of life. Schoolwide screening for asthma is becoming increasingly common, making identification of possible asthma particularly relevant for school nurses. Nurses may need to help parents cope with the new diagnosis, and teach them skills to manage the illness. The aim of this article is to present a three-phase model of how parents cope with a newly diagnosed pediatric chronic illness. Using asthma as an example, we describe these phases (Emotional Crisis, Facing Reality, and Reclaiming Life), illustrate how parents progress through the phases, and discuss situations associated with possible regression. Next, we offer strategies framed around a theory of asthma self-management to assist school nurses and other medical providers to motivate parents to develop successful disease management skills.

Home Health Care for Chronically Ill Children: Hearing before the Committee on Labor and Human Resources, United States Senate, Ninety-Ninth Congress, First Session on Examining the Needs for Pediatric Home Care for Children with Long-Term Illnesses and Disabilities.

ERIC Educational Resources Information Center

Congress of the U.S., Washington, DC. Senate Committee on Labor and Human Resources.

The proceedings of the 1985 hearing address issues in pediatric home care for children with long-term illnesses and disabilities. Statements of parents center on extreme expenses of home care and the difficulties of finding financial aid. Additional testimony is offered by representatives of home health care agencies, physicians involved in care…

Psychopathology and self-esteem in chronic illness.

PubMed

Pradhan, Prakash V; Shah, Henal; Rao, Pradeep; Ashturkar, Dhananjay; Ghaisas, Pradnya

2003-02-01

To evaluate psychopathology and self-esteem in chronic illness. 60 children and their parents were selected to participate in an open study. 30 children had epilepsy and the other 30 had thalassemia. Both the groups consisted of children randomly selected from the Epilepsy Clinic and Thalassemia Centre respectively, of a teaching general hospital. The children and their parents were interviewed and also rated on Childhood Psychopathology Measurement Schedule (CPMS) and Rosenberg's self esteem scale. The data was analysed using Pearson's chi square test and Pearson's correlation coefficient. The children were seen to have high psychopathology on CPMS (average score: thalassemia group = 28.56, epilepsy group = 26.06). Depression was the subscale with the maximum elevation in both groups. Behavior problems were high in epilepsy. In addition, sadness and disinterest in life were common symptoms in thalassemia while irritability and panic were high in epilepsy. Children with epilepsy perceived a change in lifestyle after diagnosis. Self-esteem was moderately affected in both groups and this affected compliance with treatment in thalassemia. Chronic illness affects psychological health and self esteem in children. Hence, in addition to the physical aspects it is necessary also, to focus on the psychological health of the child in order to ensure compliance and thus treat the child comprehensively.

CHIP-Coping Health Inventory for Parents: An Assessment of Parental Coping Patterns in the Care of the Chronically Ill Child.

ERIC Educational Resources Information Center

McCubbin, Hamilton I.; And Others

1983-01-01

Studied coping patterns in families (N=100) of children with cystic fibrosis. Three coping patterns emerged: (1) maintaining family integration and optimism; (2) maintaining social support, self-esteem, and psychological stability; and (3) understanding the medical situation. These patterns were validated against measures of the child's health and…

Pediatric Solid Organ Transplant Recipients: Transition to Home and Chronic Illness Care

PubMed Central

Lerret, Stacee M; Weiss, Marianne; Stendahl, Gail; Chapman, Shelley; Menendez, Jerome; Williams, Laurel; Nadler, Michelle; Neighbors, Katie; Amsden, Katie; Cao, Yumei; Nugent, Melodee; Alonso, Estella; Simpson, Pippa

2014-01-01

Pediatric solid organ transplant recipients are medically fragile and present with complex care issues requiring high-level management at home. Parents of hospitalized children have reported inadequate preparation for discharge, resulting in problems transitioning from hospital to home and independently self-managing their child’s complex care needs. The aim of this study was to investigate factors associated with the transition from hospital to home and chronic illness care for parents of heart, kidney, liver, lung, or multivisceral recipients. Fifty-one parents from five pediatric transplant centers completed questionnaires on the day of hospital discharge and telephone interviews at 3-week, 3-month, and 6-months following discharge from the hospital. Care coordination (p = .02) and quality of discharge teaching (p < .01) was significantly associated with parent readiness for discharge. Readiness for hospital discharge was subsequently significantly associated with post-discharge coping difficulty (p = .02) at 3-weeks, adherence with medication administration (p = .03) at 3-months, and post-discharge coping difficulty (p = .04) and family management (p = .02) at 6-months post-discharge. The results underscore the important aspect of education and care coordination in preparing patients and families to successfully self-manage after hospital discharge. Assessing parental readiness for hospital discharge is another critical component for identifying risk of difficulties in managing post-discharge care. PMID:25425201

Towards a definition of orphaned and vulnerable children.

PubMed

Skinner, Donald; Tsheko, N; Mtero-Munyati, S; Segwabe, M; Chibatamoto, P; Mfecane, S; Chandiwana, B; Nkomo, N; Tlou, S; Chitiyo, G

2006-11-01

The HIV epidemic presents challenges including orphans and a large mass of children rendered vulnerable by the epidemic and other societal forces. Focus on orphaned and vulnerable children (OVC) is important, but needs accurate definition. Twelve focus group interviews of service providers, leaders in these communities, OVC and their caretakers were conducted at six project sites across Botswana, South Africa and Zimbabwe to extend this definition. The loss of a parent through death or desertion is an important aspect of vulnerability. Additional factors leading to vulnerability included severe chronic illness of a parent or caregiver, poverty, hunger, lack of access to services, inadequate clothing or shelter, overcrowding, deficient caretakers, and factors specific to the child, including disability, direct experience of physical or sexual violence, or severe chronic illness. Important questions raised in this research include the long-term implications for the child and community, and the contribution of culture systems.

Paediatric nurses' perception of the child-family dyad's autonomy in managing a chronic disease situation: the experience of an Italian paediatric department.

PubMed

Bagnasco, A; Petralia, P; Furnari, S; Ghio, S; Calza, S; Sasso, L

2013-06-01

Chronically ill patients have to take several medications and non-adherence to treatment can lead to severe and negative outcomes. Therefore, several interventions are suggested in literature to improve adherence rates in clinical practice. Adherence to treatment can be particularly troublesome in adolescents, who strive for autonomy and self-care independence. Literature suggests that improving adherence is useful to guarantee positive outcomes and reduce costs. To explore how nurses perceived autonomy in parents, adolescents, and children related to the management of chronic disease. A qualitative study including 1 focus group and 7 semi-structured interviews conducted between September 2011 and October 2011. The qualitative date were analysed with the thematic analysis method. The sample included 12 paediatric nurses working in a Children's Cystic Fibrosis Unit and Neuromuscular Disease Unit. The 5 main categories that emerged from this qualitative study after he process of categorization were: 'Changes in daily lifestyle', 'Nurses' attitude towards educating the dyad', 'Adolescence and transition', 'Parents' attitudes towards chronic disease', and 'Availability of information'. Correct information and education is crucial for families who have a chronically ill child. Internet can be a misleading source of information and provide wrong information also in relation to prevention.

Sexual behavior among adolescents reporting chronic conditions: a French national survey.

PubMed

Choquet, M; Du Pasquier Fediaevsky, L; Manfredi, R

1997-01-01

To compare sexual behavior in adolescents with a physical handicap or a chronic illness (HCI, n = 604) to a healthy group (HG, n = 7,332). Data drawn from a French national health survey carried out among 7,936 adolescents (mean age = 16.2 years) were used. A self-report questionnaire concerning health behavior, sexual behavior, and chronic illness was used in 136 public secondary schools. HCI and HG groups were compared on reported sexual behavior as well as on information (on sexuality, AIDS, and pregnancy) given by the parents. Logistic regression was performed for boys and girls to explore the relationship of health status (HCI or HG) to sexual intercourse, adjusted for sociodemographic variables. Fifty-two percent of HCI boys and 38% of HCI girls reported sexual intercourse (vs. 42% of HG boys and 28% of HG girls). The HCI girls reported more often than HG girls changing partners, pregnancy, and use of oral contraceptives. The HCI boys reported more often than HG boys receiving information on sexuality from their parents. French HCI adolescents were found to be at high risk for pregnancy and sexually transmitted diseases (STD).

Parallel vigilance: parents' dual focus following diagnosis of Type 1 diabetes mellitus in their young child.

PubMed

Niedel, Selaine; Traynor, Michael; McKee, Martin; Grey, Margaret

2013-05-01

There is consensus that enabling patient self-care and expertise leads to better management of chronic illness. Clinicians are being encouraged to manage clinical encounters in ways that promote these outcomes rather than perpetuate hierarchical relationships. This article describes one part of a larger study of 55 outpatient consultations conducted within 14 months of the diagnosis of Type 1 diabetes mellitus in young children. Participants were parents and the specialist doctors, nurses, dieticians and social workers who oversee the child's secondary care. Consultations were audio-recorded and transcribed. Our analysis draws on aspects of conversation analysis (CA) to investigate how parents' talk enacts a growing confidence in the management of their child's disease in the face of questioning from professionals. Analysis reveals how this talk distinguishes a duality of focus that combines the normal watchfulness exhibited by all parents as they protect their children, with an additional intense, parallel watchfulness for signs of potentially serious manifestations of diabetes. We term this phenomenon parallel vigilance and illustrate its development using five representative extracts from consultations. The concept of parallel vigilance extends the chronic illness literature and informs our understanding of a process that contributes to parents' developing expertise and provides new and important insights into the way in which parents conceptualize and implement their evolving role in the care of their child. Moreover, parallel vigilance serves as an enabler of parental contributions to the specialist consultation.

Factors related to caregiver state anxiety and coping with a child's chronic illness.

PubMed

Nabors, Laura A; Kichler, Jessica C; Brassell, Anne; Thakkar, Sunny; Bartz, Jennifer; Pangallo, Jordan; Van Wassenhove, Bevin; Lundy, Heidi

2013-06-01

The resiliency of families, based on family functioning and family hardiness, may influence caregivers' anxiety while their child is in the hospital undergoing treatment for his or her chronic illness. The current study assessed the relationship among these factors for caregivers of children with various chronic illnesses who were residing at a local Ronald McDonald House (RMH). Caregivers completed paper-based questionnaires to assess family hardiness, functioning, and parent state anxiety and interviews to identify positive and negative strategies and behaviors affecting how they were coping with their child's illness. Findings indicated that family functioning mediated the relationship between family hardiness and caregiver anxiety as a resilience factor that further reduced caregiver anxiety. During interviews, caregivers suggested that support from family members strengthened their coping abilities. Negative interactions with their child's medical team and not knowing how or being equipped to help their child live with his or her illness heightened caregiver stress. Future research should focus on developing, implementing, and measuring the effectiveness of interventions to improve caregiver support, such as by holding caregiver support groups at local RMHs, especially during a child's hospitalization. PsycINFO Database Record (c) 2013 APA, all rights reserved.

Parenting characteristics of female caregivers of children affected by chronic endocrine conditions: a comparison between disorders of sex development and type 1 diabetes mellitus.

PubMed

Kirk, Katherine D; Fedele, David A; Wolfe-Christensen, Cortney; Phillips, Timothy M; Mazur, Tom; Mullins, Larry L; Chernausek, Steven D; Wisniewski, Amy B

2011-12-01

Rearing a child with a chronic illness is stressful and can potentially affect parenting style, which may result in poorer outcomes for children. The purpose of this study was to compare parenting characteristics of female caregivers rearing children with a disorder of sex development (DSD) to female caregivers rearing children with type 1 diabetes mellitus (T1DM). Caregivers of both groups were matched according to age and compared on measures of stress and parenting practices. Both groups demonstrated significant levels of stress and negative parenting practices. Children with T1DM and male children with non-life-threatening DSD were perceived as more vulnerable by their caregivers. Better understanding of parenting experiences of female caregivers rearing children with DSD, particularly male children, will facilitate the development of individualized interventions to ameliorate negative parenting practices and stress, with the long-term goal of improved health outcomes for their children. Copyright © 2011 Elsevier Inc. All rights reserved.

Initial validation of the Argentinean Spanish version of the PedsQL™ 4.0 Generic Core Scales in children and adolescents with chronic diseases: acceptability and comprehensibility in low-income settings

PubMed Central

Roizen, Mariana; Rodríguez, Susana; Bauer, Gabriela; Medin, Gabriela; Bevilacqua, Silvina; Varni, James W; Dussel, Veronica

2008-01-01

Background To validate the Argentinean Spanish version of the PedsQL™ 4.0 Generic Core Scales in Argentinean children and adolescents with chronic conditions and to assess the impact of socio-demographic characteristics on the instrument's comprehensibility and acceptability. Reliability, and known-groups, and convergent validity were tested. Methods Consecutive sample of 287 children with chronic conditions and 105 healthy children, ages 2–18, and their parents. Chronically ill children were: (1) attending outpatient clinics and (2) had one of the following diagnoses: stem cell transplant, chronic obstructive pulmonary disease, HIV/AIDS, cancer, end stage renal disease, complex congenital cardiopathy. Patients and adult proxies completed the PedsQL™ 4.0 and an overall health status assessment. Physicians were asked to rate degree of health status impairment. Results The PedsQL™ 4.0 was feasible (only 9 children, all 5 to 7 year-olds, could not complete the instrument), easy to administer, completed without, or with minimal, help by most children and parents, and required a brief administration time (average 5–6 minutes). People living below the poverty line and/or low literacy needed more help to complete the instrument. Cronbach Alpha's internal consistency values for the total and subscale scores exceeded 0.70 for self-reports of children over 8 years-old and parent-reports of children over 5 years of age. Reliability of proxy-reports of 2–4 year-olds was low but improved when school items were excluded. Internal consistency for 5–7 year-olds was low (α range = 0.28–0.76). Construct validity was good. Child self-report and parent proxy-report PedsQL™ 4.0 scores were moderately but significantly correlated (ρ = 0.39, p < 0.0001) and both significantly correlated with physician's assessment of health impairment and with child self-reported overall health status. The PedsQL™ 4.0 discriminated between healthy and chronically ill children (72.72 and 66.87, for healthy and ill children, respectively, p = 0.01), between different chronic health conditions, and children from lower socioeconomic status. Conclusion Results suggest that the Argentinean Spanish PedsQL™ 4.0 is suitable for research purposes in the public health setting for children over 8 years old and parents of children over 5 years old. People with low income and low literacy need help to complete the instrument. Steps to expand the use of the Argentinean Spanish PedsQL™ 4.0 include an alternative approach to scoring for the 2–4 year-olds, further understanding of how to increase reliability for the 5–7 year-olds self-report, and confirmation of other aspects of validity. PMID:18687134

Initial validation of the Argentinean Spanish version of the PedsQL 4.0 Generic Core Scales in children and adolescents with chronic diseases: acceptability and comprehensibility in low-income settings.

PubMed

Roizen, Mariana; Rodríguez, Susana; Bauer, Gabriela; Medin, Gabriela; Bevilacqua, Silvina; Varni, James W; Dussel, Veronica

2008-08-07

To validate the Argentinean Spanish version of the PedsQL 4.0 Generic Core Scales in Argentinean children and adolescents with chronic conditions and to assess the impact of socio-demographic characteristics on the instrument's comprehensibility and acceptability. Reliability, and known-groups, and convergent validity were tested. Consecutive sample of 287 children with chronic conditions and 105 healthy children, ages 2-18, and their parents. Chronically ill children were: (1) attending outpatient clinics and (2) had one of the following diagnoses: stem cell transplant, chronic obstructive pulmonary disease, HIV/AIDS, cancer, end stage renal disease, complex congenital cardiopathy. Patients and adult proxies completed the PedsQL 4.0 and an overall health status assessment. Physicians were asked to rate degree of health status impairment. The PedsQL 4.0 was feasible (only 9 children, all 5 to 7 year-olds, could not complete the instrument), easy to administer, completed without, or with minimal, help by most children and parents, and required a brief administration time (average 5-6 minutes). People living below the poverty line and/or low literacy needed more help to complete the instrument. Cronbach Alpha's internal consistency values for the total and subscale scores exceeded 0.70 for self-reports of children over 8 years-old and parent-reports of children over 5 years of age. Reliability of proxy-reports of 2-4 year-olds was low but improved when school items were excluded. Internal consistency for 5-7 year-olds was low (alpha range = 0.28-0.76). Construct validity was good. Child self-report and parent proxy-report PedsQL 4.0 scores were moderately but significantly correlated (rho = 0.39, p < 0.0001) and both significantly correlated with physician's assessment of health impairment and with child self-reported overall health status. The PedsQL 4.0 discriminated between healthy and chronically ill children (72.72 and 66.87, for healthy and ill children, respectively, p = 0.01), between different chronic health conditions, and children from lower socioeconomic status. Results suggest that the Argentinean Spanish PedsQL 4.0 is suitable for research purposes in the public health setting for children over 8 years old and parents of children over 5 years old. People with low income and low literacy need help to complete the instrument. Steps to expand the use of the Argentinean Spanish PedsQL 4.0 include an alternative approach to scoring for the 2-4 year-olds, further understanding of how to increase reliability for the 5-7 year-olds self-report, and confirmation of other aspects of validity.

Adjustment Services.

ERIC Educational Resources Information Center

Cutbill, C. Jean

Intended for counselors, the document offers guidelines for identifying nonattendance in primary grade students. Sections outline procedures for analyzing attendance patterns, signs of nonattendance for teachers to look for, actions to take when nonattendance is identified, types of nonattendance (such as chronic illnesses, overprotective parent,…

Narratives of children with chronic illness about being comforted.

PubMed

Angström-Brännström, Charlotte; Norberg, Astrid; Jansson, Lilian

2008-08-01

The aim of the study was to examine how children with chronic illnesses narrate their experience of being comforted in hospital. During interviews, seven children, 4-10 years old described their experiences and made drawings. Thematic content analysis revealed following themes: being physically close to one's family, feeling safe and secure, staff being there for the children, and children being there for parents and siblings. Mother was identified as the most important comforter. The findings suggest that trusting in the staff's knowledge and professional skills is a prerequisite for children to feel "at home", and safe in hospital. Being close to one's family is even more important.

The economic impact of chronic pain in adolescence: methodological considerations and a preliminary costs-of-illness study.

PubMed

Sleed, Michelle; Eccleston, Christopher; Beecham, Jennifer; Knapp, Martin; Jordan, Abbie

2005-12-15

Chronic pain in adulthood is one of the most costly conditions in modern western society. However, very little is known about the costs of chronic pain in adolescence. This preliminary study explored methods for collecting economic-related data for this population and estimated the cost-of-illness of adolescent chronic pain in the United Kingdom. The client service receipt inventory was specifically adapted for use with parents of adolescent chronic pain patients to collect economic-related data (CSRI-Pain). This method was compared and discussed in relation to other widely used methods. The CSRI-Pain was sent to 52 families of adolescents with chronic pain to complete as a self-report retrospective questionnaire. These data were linked with unit costs to estimate the total care cost package for each family. The economic impact of adolescent chronic pain was found to be high. The mean cost per adolescent experiencing chronic pain was approximately 8,000 pounds per year, including direct and indirect costs. The adolescents attending a specialised pain management unit, who had predominantly non-inflammatory pain, accrued significantly higher costs, than those attending rheumatology outpatient clinics, who had mostly inflammatory diagnoses. Extrapolating the mean total cost to estimated UK prevalence data of adolescent chronic pain demonstrates a cost-of-illness to UK society of approximately 3,840 million pounds in one year. The implications of the study are discussed.

Perceived Effects of Paid Family Leave among Parents of Children with Special Health Care Needs: California's Experience. Research Highlights

ERIC Educational Resources Information Center

Vaiana, Mary E.

2010-01-01

About 15 percent of children in the United States are chronically ill. These children with special health care needs (CSHCN) account for half of all child hospital days nationwide, require many more medical visits than other children, and miss many more days of school. Their parents face special challenges as they struggle to balance work and the…

Children with Chronic Kidney Disease: Tips for Parents

MedlinePlus

... or blankets, preferred time and method of taking medicines. Help your child take control of the illness Try to maintain ... with a teaspoon (associated with food) or a medicine cup. The benefit to your child is in not having to smell the medicine ...

Self-reported barriers to medication adherence among chronically ill adolescents: a systematic review.

PubMed

Hanghøj, Signe; Boisen, Kirsten A

2014-02-01

To investigate self-reported barriers to medication adherence among chronically ill adolescents, and to investigate whether barriers are unique to specific chronic diseases or more generic across conditions. A systematic search of Web of Science, PubMed, Embase, PsycINFO, and CINAHL from January 2000 to May 2012 was conducted. Articles were included if they examined barriers to medication intake among chronically ill adolescents aged 13-19 years. Articles were excluded if adolescent's views on barriers to adherence were not separated from younger children's or caregiver's views. Data was analyzed using a thematic synthesis approach. Of 3,655 records 28 articles with both quantitative, qualitative, and q-methodology study designs were included in the review. The synthesis led to the following key themes: Relations, adolescent development, health and illness, forgetfulness, organization, medicine complexity, and financial costs. Most reported barriers to adherence were not unique to specific diseases. Some barriers seem to be specific to adolescence; for example, relations to parents and peers and adolescent development. Knowledge and assessment of barriers to medication adherence is important for both policy-makers and clinicians in planning interventions and communicating with adolescents about their treatment. Copyright © 2014 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.

Impact of a family-oriented rehabilitation programme on behavioural and emotional problems in healthy siblings of chronically ill children.

PubMed

Besier, T; Hölling, H; Schlack, R; West, C; Goldbeck, L

2010-09-01

To evaluate the impact of a family-oriented inpatient rehabilitation programme on behavioural and emotional problems in healthy siblings of chronically ill children and to assess the association between these problems and quality of life. A total of 259 healthy children (4-16 years, M = 8.6 years, SD = 3.3) with a chronically ill sibling were enrolled in the study. Parents filled in the Strengths and Difficulties Questionnaire, while the children answered a self-report quality of life instrument (LQ-KID) at the time of admission and discharge from the clinic and at a 6-month follow-up. Comparisons were performed with a matched control group from the German general population (n= 777). Significant behavioural or emotional symptoms were found in 30.5% of the healthy siblings, the relative risk of having elevated scores being 2.2 compared with the control group. Symptoms were inversely correlated with quality of life (r=-0.42). During the inpatient rehabilitation, symptoms decreased significantly to a normal level. Similarly, quality of life significantly improved, except in the dimension family relations. Family-oriented inpatient rehabilitation is a promising approach to improve the mental health of children with a chronically ill sibling.

Healthy Bodies, Healthy Minds.

ERIC Educational Resources Information Center

Terwilliger, Susan H.

1996-01-01

School-based health clinics fill a growing need for routine health care for children--especially for those with working parents and special circumstances. Traditional school health services cannot handle increasing numbers of disabled, chronically ill, and medically fragile children. Costing about $170,000 yearly, clinics can prevent future…

Parenting stress in pediatric IBD: relations with child psychopathology, family functioning, and disease severity.

PubMed

Gray, Wendy N; Graef, Danielle M; Schuman, Shana S; Janicke, David M; Hommel, Kevin A

2013-05-01

Parenting stress in pediatric inflammatory bowel disease (IBD) has been under-examined. Data validating use of the Pediatric Inventory for Parents (PIP), a measure of parenting stress associated with caring for a chronically ill child, in chronic diseases with intermittent, unpredictable disease courses, such as IBD, are needed. This study presents validity data in support of the PIP in pediatric IBD and examines relations between parenting stress and important psychosocial and medical outcomes. Adolescents (N = 130) with IBD and their caregivers across 3 sites completed measures of parenting stress, family functioning, and emotional/behavioral functioning. Disease severity was also assessed for each participant. The PIP demonstrates excellent internal consistency. Parenting stress was significantly higher among those with unhealthy general family functioning and those with children with borderline or clinically elevated internalizing symptoms. Caregiving stress was greater among parents of youth with more active Crohn's disease. Results supported the reliability and validity of the PIP for assessing caregiving stress in pediatric IBD. Routine assessment of parenting stress is recommended, particularly among parents reporting unhealthy family functioning and parents of youth with borderline or clinically elevated internalizing symptoms and more active disease.

Unsung heroes, flying blind - a metasynthesis of parents' experiences of caring for children with special health care needs at home.

PubMed

Nygård, Carina; Clancy, Anne

2018-05-13

To aggregate, synthesize and interpret qualitative research studies of parents' experiences of caring for a child with special health care needs at home. Advances in the field of medical and nursing science have ensured better survival rates for children with chronic illnesses. Many of these children have significant special health care needs. Today parents assume a caregiver role, undertaking tasks previously provided by nurses in hospitals. As the complexity of care delivered by parents continues to develop, synthesized knowledge can provide an evidence base that will support and guide nurses when caring for these families. Metasynthesis. Based upon a systematic search protocol a structured literature search, covering the years 2003-2016 was conducted in five electronic databases. Ten studies were included and appraised using the Critical Appraisal Skills Program assessment tool. A metasummary and a metasynthesis were undertaken guided by the metasynthesis methodology as described by Sandelowski and Barroso (2007). The results were interpreted and integrated under the overarching theme "unsung heroes, flying blind", supported by eight elucidating categories that illustrate aspects of the parents' life world. The enormous burden of care can weaken the parents' will to carry on and result in a decreased ability to provide care. This can have an impact on the parents' health, family functioning and the sick child's potential health outcomes. Nurses are in a unique position to help these families and should be better prepared for the role. Knowledge of how parents of children with special health care needs experience their daily lives can promote trust in nurses and guide them in their efforts to support families with children living with chronic illness. This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.

Balancing parental involvement with adolescent friendly health care in teenagers with diabetes: are we getting it right?

PubMed

Duncan, Rony E; Jekel, Maureen; O'Connell, Michele A; Sanci, Lena A; Sawyer, Susan M

2014-07-01

Current guidance about adolescent-friendly health care emphasizes the benefits of seeing young people alone for confidential consultations. Yet in young people with Type 1 diabetes mellitus (T1DM), parental involvement has been shown to contribute to better diabetes control. This study aimed to better understand how these apparent tensions are reconciled in clinical practice by identifying how frequently adolescents with T1DM are seen alone and exploring parents' opinions about this. A convenience sample of consecutive parents of adolescents (aged 12-21 years) with T1DM was recruited from the outpatient clinic of a specialist diabetes service and asked to complete a 30-item written survey. A total of 137 surveys were returned from 146 eligible parents (94%) of whom 106 had complete data. Thirteen percent of adolescents with T1DM had ever been seen alone for a confidential consultation with their doctor. The most common concern for parents about confidential care was not being informed about important information, not just about T1DM, but also about common adolescent risk behaviors and mental health states. These findings suggest that young people with T1DM are not being routinely seen alone for confidential care. This could be attributed to: parents or adolescents declining confidential care; clinicians being time-poor and/or lacking the necessary skills; or a culture of uncertainty about the value of confidential care. A discussion is now required about how best to enact adolescent-friendly care in the chronic-illness outpatient setting, where parental involvement is understood to be important for effective chronic illness management. Copyright © 2014 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.

Specialist home-based nursing services for children with acute and chronic illnesses.

PubMed

Parab, Chitra S; Cooper, Carolyn; Woolfenden, Susan; Piper, Susan M

2013-06-15

Specialist paediatric home-based nursing services have been proposed as a cost-effective means of reducing distress resulting from hospital admissions, while enhancing primary care and reducing length of hospital stay. This review is an update of our original review, which was published in 2006. To evaluate specialist home-based nursing services for children with acute and chronic illnesses. We searched the following databases in February 2012: the Cochrane Central Register of Controlled Trials (CENTRAL) in The Cochrane Library 2012 Issue 2, Ovid MEDLINE, EMBASE, PsycINFO, CINAHL and Sociological Abstracts. We also searched ClinicalTrials.gov and the WHO International Clinical Trials Registry Platform. No language restrictions were applied. Randomised controlled trials (RCTs) of children from birth to age 18 years with acute or chronic illnesses allocated to specialist home-based nursing services compared with conventional health care. Outcomes included utilisation of health care, physical and mental health, satisfaction, adverse health outcomes and costs. Two review authors extracted data from the studies independently and resolved any discrepancies by recourse to a third author. Meta-analysis was not appropriate because of the clinical diversity of the studies and the lack of common outcome measures. We screened 4226 titles to yield seven RCTs with a total of 840 participants. Participants, interventions and outcomes were diverse. No significant differences were reported in health outcomes; two studies reported a reduction in the hospital stay with no difference in the hospital readmission rates. Three studies reported a reduction in parental anxiety and improvement in child behaviours was reported in three studies. Overall increased parental satisfaction was reported in three studies. Also, better parental coping and family functioning was reported in one study. By contrast, one study each reported no impact on parental burden of care or on functional status of children. Home care was reported as more costly for service providers with substantial cost savings for the family in two studies, while one study revealed no significant cost benefits for the family. Current research does not provide supporting evidence for a reduction in access to hospital services or a reduction in hospital readmission rate for children with acute and chronic illnesses using specialist home-based nursing services; however, the only summary finding across a few studies was that there is a significant decrease in length of hospitalisation. The preliminary results show no adverse impact on physical health outcomes and a number of papers reported improved satisfaction with home-based care. Further trials are required, measuring health, satisfaction, service utilisation and long-term costs.

The Staff of Life.

ERIC Educational Resources Information Center

Jones, Rebecca

1994-01-01

Some children have chronic illnesses that require diet modifications as part of their medical treatment. Advises school districts to hire a registered dietitian or look for resources at a local hospital or public health office. In addition, schools should work with parents, improve staff training, and conduct spot checks of school cafeterias. (MLF)

Tewa Children Who Have Epilepsy: A Health Care Dilemma.

ERIC Educational Resources Information Center

DeBruyn, Lemyra M.

1990-01-01

Examines attitudes and responses toward epilepsy among families of 31 epileptic Tewa children, utilization of modern health care services, and parent reluctance to discuss traditional beliefs and healing practices. Discusses models of chronic illness behavior and the inadequacies of Indian Health Service treatment of epileptic children. Contains…

Children with Health Issues

ERIC Educational Resources Information Center

Schuster, Mark A.; Chung, Paul J.; Vestal, Katherine D.

2011-01-01

All children, even the healthiest, have preventive and acute health care needs. Moreover, a growing number of children are chronically ill, with preventive, acute, and ongoing care needs that may be much more demanding than those for healthy children. Because children are unable to care for themselves, their parents are expected to provide a range…

[Validity and reliability of Korean version of the Family Management Measure (Korean FaMM) for families with children having chronic illness].

PubMed

Kim, Dong Hee; Im, Yeo Jin

2013-02-01

To develop and test the validity and reliability of the Korean version of the Family Management Measure (Korean FaMM) to assess applicability for families with children having chronic illnesses. The Korean FaMM was articulated through forward-backward translation methods. Internal consistency reliability, construct and criterion validity were calculated using PASW WIN (19.0) and AMOS (20.0). Survey data were collected from 341 mothers of children suffering from chronic disease enrolled in a university hospital in Seoul, South Korea. The Korean version of FaMM showed reliable internal consistency with Cronbach's alpha for the total scale of .69-.91. Factor loadings of the 53 items on the six sub-scales ranged from 0.28-0.84. The model of six subscales for the Korean FaMM was validated by expiratory and confirmatory factor analysis (χ²<.001, RMR<.05, GFI, AGFI, NFI, NNFI>.08). Criterion validity compared to the Parental Stress Index (PSI) showed significant correlation. The findings of this study demonstrate that the Korean FaMM showed satisfactory construct and criterion validity and reliability. It is useful to measure Korean family's management style with their children who have a chronic illness.

Group intervention for burnout in parents of chronically ill children - a small-scale study.

PubMed

Lindström, Caisa; Åman, Jan; Anderzén-Carlsson, Agneta; Lindahl Norberg, Annika

2016-12-01

Long-term stress leading to burnout symptoms is prevalent in parents of chronically ill children. The aim of the study was to evaluate the effect of a group intervention by measuring changes in self-rated clinical burnout and performance-based self-esteem. In addition, the parental perceptions of the acceptability of the intervention were explored. Previously, we have explored the prevalence of clinical burnout in parents of patients 1-18 years with type 1 diabetes mellitus (T1DM) and inflammatory bowel disease (IBD) in the county of Örebro. All parents who exhibited clinical burnout symptoms in accordance with the Shirom-Melamed Burnout Questionnaire (SMBQ) were then invited to participate in a group intervention, which was evaluated in the present small-scale study. The group intervention consisted of eight sessions over a 12-week period, including education about behaviour, cognition and symptoms associated with burnout, intending to help the parents to develop adequate strategies for coping with and reducing stress. We evaluated the effect of the intervention in terms of self-rated clinical burnout and performance-based self-esteem (PBSE). In addition, the acceptability of the intervention was evaluated by analyses of recruitment and retention and self-reports from parents. Sixteen parents (13 of children with TIDM and three of children with IBD) out of 104 reporting clinical burnout participated in the intervention. All participants completed the intervention, and the mean attendance rate at all sessions was 90%. Parents' subjective evaluations were mainly positive, and SMBQ (p = 0.01) and PBSE scale (p = 0.04) measurements were significantly reduced, which effects remained 6 months after completion of the intervention. Despite the small-scale study, we consider that this intervention for parents with clinical burnout was appreciated and well accepted. The significant reduction in clinical burnout symptoms requires further evaluation in randomised controlled studies based on larger groups of parents. © 2015 Nordic College of Caring Science.

Awareness and use of California's Paid Family Leave Insurance among parents of chronically ill children.

PubMed

Schuster, Mark A; Chung, Paul J; Elliott, Marc N; Garfield, Craig F; Vestal, Katherine D; Klein, David J

2008-09-03

In 2004, California's Paid Family Leave Insurance Program (PFLI) became the first state program to provide paid leave to care for an ill family member. To assess awareness and use of the program by employed parents of children with special health care needs, a population likely to need leave. Telephone interviews with successive cohorts of employed parents before (November 21, 2003-January 31, 2004; n = 754) and after (November 18, 2005-January 31, 2006; n = 766) PFLI began, randomly sampled from 2 children's hospitals, one in California (with PFLI) and the other in Illinois (without PFLI). Response rates were 82% before and 81% after (California), and 80% before and 74% after (Illinois). Taking leave, length of leave, unmet need for leave, and awareness and use of PFLI. Similar percentages of parents at the California site reported taking at least 1 day of leave to care for their ill child before (295 [81%]) and after (327 [79%]) PFLI, taking at least 4 weeks before (64 [21%]) and after (74 [19%]) PFLI, and at least once in the past year not missing work despite believing their child's illness necessitated it before (152 [41%]) and after (156 [41%]) PFLI. Relative to Illinois, parents at the California site reported no change from before to after PFLI in taking at least 1 day of leave (difference of differences, -3%; 95% confidence interval [CI], -13% to 7%); taking at least 4 weeks of leave (1%; 95% CI, -9% to 10%); or not missing work, despite believing their child's illness necessitated it (-1%; 95% CI, -13% to 10%). Only 77 parents (18%) had heard of PFLI approximately 18 months after the program began, and only 20 (5%) had used it. Even among parents without other access to paid leave, awareness and use of PFLI were minimal. Parents of children with special health care needs receiving care at a California hospital were generally unaware of PFLI and rarely used it. Among parents of children with special health care needs, taking leave in California did not increase after PFLI implementation compared with Illinois.

Parent illness appraisals, parent adjustment, and parent-reported child quality of life in pediatric cancer.

PubMed

Mullins, Larry L; Cushing, Christopher C; Suorsa, Kristina I; Tackett, Alayna P; Molzon, Elizabeth S; Mayes, Sunnye; McNall-Knapp, Rene; Mullins, Alexandria J; Gamwell, Kaitlyn L; Chaney, John M

2016-08-01

Psychosocial distress is a salient construct experienced by families of children with newly diagnosed cancer, but little is known about parental appraisal of the child's illness and the subsequent impact this may have on child and parent functioning. The goal of the present study was to examine the interrelationships among multiple parent illness appraisals, parent adjustment outcomes, and parent-reported child quality of life in parents of children diagnosed with cancer. Parents completed measures of illness appraisal (illness uncertainty and attitude toward illness), parent adjustment (general distress, posttraumatic stress, parenting stress), and child quality of life (general and cancer-related). Path analysis revealed direct effects for parent illness uncertainty and illness attitudes on all 3 measures of parent adjustment. Illness uncertainty, but not illness attitudes, demonstrated a direct effect on parent-reported child general quality of life; parenting stress had direct effects on general and cancer-related quality of life. Exploratory analyses indicated that parent illness uncertainty and illness attitudes conferred indirect effects on parent-reported general and cancer-related quality of life through parenting stress. Negative parent illness appraisals appear to have adverse impacts on parents' psychosocial functioning and have implications for the well-being of their child with cancer.

Guided self-help for mental health disorders in children and young people with chronic neurological conditions: A qualitative evaluation.

PubMed

Bennett, Sophie D; Coughtrey, Anna E; Heyman, Isobel; Greally, Suzanna; Clarkson, Harriet; Bhattacharyya, Tuhina; Lewis, Corah; Varadkar, Sophia; Shafran, Roz

2018-03-09

Children with neurological conditions such as epilepsy are at high risk of developing mental health disorders. Guided self-help can be used to increase access to psychological therapies. When developing and evaluating interventions, it is important to obtain the views of service-users about their acceptability. A telephone-guided self-help intervention was used to treat common mental health difficulties in children and young people with neurological conditions. The intervention was not adapted in content to account for chronic illness. This study therefore reports on qualitative interviews with participants to determine the acceptability of the intervention. Semi-structured interviews were conducted with 27 participants (25 parents and 2 young people) who had undertaken a telephone-delivered guided self-help intervention for common mental health difficulties in the context of a paediatric neurological condition. Transcripts were analysed thematically using the framework approach. Thirteen themes were extracted, organised into three main domains, which covered: the practicalities of telephone guided self-help treatment; the outcomes of the intervention; and the extent to which adaptation was needed for chronic illness. Most families found the intervention helpful in working towards their specific goals and noticed changes for the child and/or parents and family. Participants had a positive experience of the intervention and the majority of parents found the standard intervention with individualised goals sufficient to meet the young person's mental health needs. Copyright © 2018 European Paediatric Neurology Society. Published by Elsevier Ltd. All rights reserved.

Caring for an adolescent with a chronic illness.

PubMed

Buhlmann, U; Fitzpatrick, S B

1987-03-01

Although early, mid, and late adolescence are transient psychological periods, the teenager must master these three phases to complete the psychological stages and tasks of adolescence. Because chronic disease delays or alters these phases, it becomes imperative for the primary care physician to reassess psychological development periodically for appropriate and intensive counseling. With the advantage of continuous contact with the family and the understanding of the family's structure and interpersonal relationships, the primary care physician may be able to: alleviate struggles for control that may seriously impede care, encourage the teenager to accomplish the psychological tasks of adolescence, both during hospitalization and in follow-up outpatient care visits, promote the adolescent's participation in his or her own health care, and ultimately enhance both the family's and the teenager's adaptation to a chronic illness. Finally, during the terminal phase of an illness, the primary care physician will be able to help the adolescent find meaning in his or her short life, provide the support to help the teenager to disengage from life with dignity, and provide a supportive relationship to the parents and siblings.

Predictors of health literacy and numeracy concordance among adolescent with special health care needs and their parents

PubMed Central

Chisolm, Deena J; Sarkar, Madhurima; Kelleher, Kelly J.; Sanders, Lee M.

2015-01-01

Background Parent and teen health literacies (HL) are employed as teens with chronic illnesses transition to health self-management and the adult health system. This study explores the relationships between parent and teen HL. Methods Teens ages 12-18 with chronic conditions and their parents, sampled from a pediatric Medicaid ACO, completed an interview assessing HL and self-reported competence with written and numeric health information. Rates of teen and parent HL, degree of concordance, and relationship between concordance and teen-reported competence with health materials were measured. Results Half (52%) of teens had adequate HL. 62% of teens reported competence with written health materials and 69% with numeric information. Correlation between parent and teen HL was modest but significant (phi=0.13; p=0.03). 47% of parent-teen dyads were concordant for adequate HL while 10% were concordant inadequate. Adequate teen HL was associated with parental adequate HL and parental education. Discordance was associated with self-reported competence with written material and numeric material. Conclusion Over half of parent-teen dyads had at least one member with less than adequate health literacy and parent-teen HL concordance were associated with teen perception of health literacy. These findings support the consideration of both independent and dyad HL levels in adolescent care. PMID:26513030

Children with health issues.

PubMed

Schuster, Mark A; Chung, Paul J; Vestal, Katherine D

2011-01-01

All children, even the healthiest, have preventive and acute health care needs. Moreover, a growing number of children are chronically ill, with preventive, acute, and ongoing care needs that may be much more demanding than those for healthy children. Because children are unable to care for themselves, their parents are expected to provide a range of health care services without which the current health care system for children would not function. Under this "shadow health care system," parents or parent surrogates often need to be with the child, a requirement that can create difficulties for working parents, particularly for those whose children are chronically ill. How federal, state, and employer policies and practices mesh with the child health care needs of families is therefore a central issue in any discussion about work and family balance. In this article Mark Schuster, Paul Chung, and Katherine Vestal describe the health care needs of children; the essential health care responsibilities of parents; the perspective of employers; and the existing network of federal, state, and local family leave benefits that employed parents can access. They also identify current gaps in policies that leave unmet the needs of both parents and their employers. The authors suggest the outlines of a national family leave policy that would protect the interests of parents and employers. In essence, such a policy would build on the federal Family and Medical Leave Act, which gives some workers time off with no advance notice required and no loss of job or health insurance. But it would also include elements of California's Paid Family Leave Insurance, which expands coverage to more workers and provides partial pay during leave. Employers could be given some financial protections as well as protections against employee fraud and abuse. Such a policy, the authors conclude, would help to provide security to parents, minimize effects on employers, raise societal expectations for family-friendly work environments, and help maintain the parental shadow system of care on which health care professionals depend.

Personality disparity in chronic regional and widespread pain.

PubMed

Chang, Mei-Chung; Chen, Po-Fei; Lung, For-Wey

2017-08-01

Chronic pain has high comorbidity with psychiatric disorders, therefore, better understanding of the relationship between chronic pain and mental illness is needed. This study aimed to investigate the pathway relationships among parental attachment, personality characteristics, alexithymic trait and mental health in patients with chronic widespread pain, those with chronic regional pain, and controls. Two hundred and thirty participants were recruited. The parental Bonding Inventory, Eysenck Personality Inventory (EPI), 20-item Toronto Alexithymia Scale (TAS-20), Chinese Health Questionnaire, and Short-Form 36 were filled out. The pathway relationships revealed that patients of mothers who were more protective were more neurotic, had more difficulty identifying feelings (DIF), worse mental health, and a higher association with chronic widespread pain. No differences were found between patients with chronic regional pain and the controls. The predisposing factors for chronic widespread pain, when compared with chronic regional pain, may be more closely related to psychiatric disorders. The pathways to chronic regional pain and chronic widespread pain differ, with neuroticism and the alexithymic DIF trait being the main factors defining chronic widespread pain. Therefore, besides therapies targeting pain symptoms, psychiatric consultation, medication and psychotherapy are also recommended for those with chronic widespread pain to alleviate their mental health conditions. Copyright © 2017 Elsevier Ireland Ltd. All rights reserved.

'Sometimes it feels as if the world goes on without me': adolescents' experiences of living with chronic fatigue syndrome.

PubMed

Winger, Anette; Ekstedt, Mirjam; Wyller, Vegard B; Helseth, Sølvi

2014-09-01

To explore the experience of being an adolescent with chronic fatigue syndrome. Despite ample research, chronic fatigue syndrome is still poorly understood, and there are still controversies related to the illness. Adolescents with chronic fatigue syndrome are often unable to attend school and lose social relations with friends. The challenges they face will affect their quality of life. A qualitative, phenomenological hermeneutical design. Six boys and twelve girls, aged 12-18, were interviewed, emphasising their own experiences living with chronic fatigue syndrome. Analyses were performed using a phenomenological hermeneutical method. The core theme, 'Sometimes it feels as if the world goes on without me', encompasses the feelings an adolescent living with chronic fatigue syndrome might have about life. The core theme was supported by four subthemes: 'On the side of life--locked in and shut out'; 'the body, the illness and me'; 'if the illness is not visible to others, does it exist?'; and 'handling life while hoping for a better future'. The subthemes reflect the experience of social isolation, their own and others' understanding of the illness and hope for the future. Not being able to be with friends, or attend school, made the adolescents feel different and forgotten. They felt alienated in their own bodies and were struggling to be visible to themselves and to their surroundings. Spending less time with friends and more time with their parents constituted a threat to independence and development. Yet they managed to envision a better future despite all the difficulties. To provide effective support and constructive relations to adolescents with chronic fatigue syndrome, all health professions involved need insight from the persons who are themselves ill. Health centres could function as resource centres for patients and healthcare professionals. © 2013 John Wiley & Sons Ltd.

Dysfunctional remembered parenting in oncology outpatients affects psychological distress symptoms in a gender-specific manner.

PubMed

Kouzoupis, Anastasios V; Lyrakos, Dimitrios; Kokras, Nikolaos; Panagiotarakou, Meropi; Syrigos, Kostas N; Papadimitriou, George N

2012-12-01

Evidence suggests that gender differences appear in a variety of biological and psychological responses to stress and perhaps in coping with acute and chronic illness as well. Dysfunctional parenting is also thought to be involved in the process of coping with stress and illness; hence, the present study aimed to verify whether dysfunctional remembered parenting would influence psychological distress in a gender-specific manner in patients suffering from cancer. Patients attending an outpatient oncology clinic completed the Remembered Relationships with Parents (RRP), Hospital Anxiety and Depression and Spielberger's State-Trait Anxiety Inventory scales and the National Cancer Center Network Distress Thermometer. Although no baseline gender differences were detected, a multivariate analysis confirmed that anxiety and depression symptoms of men and women suffering from cancer are differentially affected by the RRP Control and Alienation scores. Women with remembered parental alienation and overprotection showed significantly more anxiety symptoms than men, whereas men were more vulnerable to remembered alienation than overprotection with regard to the Distress Thermometer scores. These results suggest that remembered dysfunctional parenting is crucially, and in a gender-specific manner, involved in the coping strategy adopted by male and female cancer patients. Copyright © 2012 John Wiley & Sons, Ltd.

Examining the interaction of parental involvement and parenting style in predicting adherence in youth with type 1 diabetes.

PubMed

Landers, Sara E; Friedrich, Elizabeth A; Jawad, Abbas F; Miller, Victoria A

2016-03-01

This study examined whether aspects of parenting style (specifically, warmth, autonomy support, and coercion) moderated the association between parental involvement and adherence in youth with type 1 diabetes. Children ages 8 to 16 years with type 1 diabetes and a parent completed assessments of parental involvement, parenting style, and adherence. Parent autonomy support and coercion were associated with adherence but warmth was not. Child report of more parental involvement was associated with better adherence. Warmth, autonomy support, and coercion were not moderators. The findings underscore the importance of parental involvement, operationalized as responsibility for diabetes tasks, and parenting style, specifically coercion and autonomy support, for adherence in pediatric chronic illness management. Longitudinal research is needed to better understand how and why dimensions of involvement (e.g., responsibility, monitoring, support) vary over time and whether they impact outcomes differentially. (PsycINFO Database Record (c) 2016 APA, all rights reserved).

Treating the Sleep Disorders of Childhood: Current Practice in the United Kingdom

ERIC Educational Resources Information Center

Bartlet, L. B.

2006-01-01

Sleep disorders are common in childhood. Their prevalence is especially high in the presence of disability or chronic illness. They cause considerable stress to the children themselves and to their parents. Sleep deprivation leads to daytime behavioral problems and educational difficulties. In assessing sleep problems thorough history taking is…

Research Note: Unmet Needs for Education of Primary School Children in Nigeria.

ERIC Educational Resources Information Center

Abidoye, Rotimi O.

1999-01-01

Surveyed 300 children and 300 teachers in Lagos, Nigeria to determine unmet needs for education. Reasons given for poor-quality education included poor teacher morale, poor parent cooperation, and poor child interest, the latter attributed to chronic malnutrition and illness. Suggestions were made for proper teacher training, adequate…

A Micro-Developmental View of Parental Well-being in Families Coping with Chronic Illness

PubMed Central

Queen, Tara L.; Butner, Jonathan; Wiebe, Deborah J.; Berg, Cynthia A.

2016-01-01

Families are co-regulating systems in which the daily experiences of one member affect the well-being of another member of the family. We examined daily, micro-developmental processes by modeling the associations between adolescents’ daily problems and emotional experiences in managing type 1 diabetes and changes in parental negative and positive affect surrounding the illness. Using a daily diary method, 161 mothers (M age=40 years), fathers (M age=42 years), and early adolescents (M age=12.4 years) rated their negative and positive emotions surrounding diabetes for 14 days. Adolescents reported, via a checklist, the number of problems they experienced in managing diabetes each day. Using dynamical systems modeling, we found that adolescents’ problems and emotions were related to changes in their parents’ reports of negative affect, though differently for mothers and fathers. On days when adolescents reported more problems, fathers’ affect changed more slowly back to homeostasis. Adolescents’ problems were not associated with change in mothers’ negative affect, but when adolescents reported greater negative daily affect, mothers were drawn to greater negative affect, displaying a higher set point. Models accounting for parental coupling effects suggested that when adolescents reported more negative affect, mothers’ affect changed more slowly back to homeostasis. Neither adolescents’ problems nor their emotions were associated with changes in mothers’ or fathers’ reports of daily positive affect. These results indicate different temporal patterns in mothers’ and fathers’ negative affect that illustrate how mothers, fathers, and adolescents react differently to chronic illness within the family system. PMID:27148935

Peace of mind and sense of purpose as core existential issues among parents of children with cancer.

PubMed

Mack, Jennifer W; Wolfe, Joanne; Cook, E Francis; Grier, Holcombe E; Cleary, Paul D; Weeks, Jane C

2009-06-01

To evaluate issues experienced by parents of children with cancer and factors related to parents' ability to find peace of mind. Cross-sectional survey. Dana-Farber Cancer Institute and Children's Hospital, Boston, Massachusetts. One hundred ninety-four parents of children with cancer (response rate, 70%) in the first year of cancer treatment. The Functional Assessment of Chronic Illness Therapy-Spiritual Well-being sense of meaning subscale. Principal components analysis of Functional Assessment of Chronic Illness Therapy-Spiritual Well-being sense of meaning subscale responses identified 2 distinct constructs, peace of mind (Cronbach alpha = .83) and sense of purpose (Cronbach alpha = .71). Scores ranged from 1 to 5, with 5 representing the strongest sense of peace or purpose. One hundred forty-seven of 181 parents (81%) scored 4 or higher for questions related to sense of purpose (mean [SD] score, 4.4 [0.6]). Only 44 of 185 parents (24%) had scores in the same range for peace of mind (mean [SD] score, 3.2 [0.9]) (P < .001). In a multivariable logistic regression model, parents had higher peace of mind scores when they also reported that they trusted the oncologist's judgment (odds ratio [OR] = 6.65; 95% confidence interval [CI], 1.47-30.02), that the oncologist had disclosed detailed prognostic information (OR = 2.05; 95% CI, 1.14-3.70), and that the oncologist had provided high-quality information about the cancer (OR = 2.54; 95% CI, 1.11-5.79). Peace of mind was not associated with prognosis (OR = 0.74; 95% CI, 0.41-1.32) or time since diagnosis (OR = 1.00; 95% CI, 0.995-1.003). Physicians may be able to facilitate formulation of peace of mind by giving parents high-quality medical information, including prognostic information, and facilitating parents' trust.

Empowering Our Youth: Initiating Sexual Health Education on the Inpatient Unit for the Chronically Ill Pediatric Patient.

PubMed

Bakke, Ashley

2016-01-01

Chronicaly ill pre-teens and adolescents often spend months as inpatients while undergoing treatment. This population includes but is not limited to oncology, transplant, physically disabled, and medically fragile pediatric patients. Sexual health education is often considered less important than the complex disease states and medical issues faced by pediatric inpatients. Many clinicians fail to realize the value of providing this guidance as a necessary part of the physical and psychosocial health of these young patients. Chronically ill youth lack normal social interactions while hospitalized and may have body image issues related to physical disabilities. A need for sexual health education stems from the high sexually transmitted disease prevalence in this population. Lack of formal provider education on sexual health, provider discomfort in discussing sexual health topics, and overlooking the importance of adolescent sexual health have delayed integration of sexual education into inpatient teaching, discharge planning, and outpatient follow up. With few guidelines and minimal published research on this topic, clinicians and parents often have no experience, education, or guidance to provide this specific knowledge effectively. The goal of this discussion of sexual health education for chronically ill adolescents is to highlight the need for additional research, improved training for healthcare providers, and development of evidence-based guidelines in the inpatient and outpatient settings.

Family adjustment and parenting stress when an infant has serious liver disease: the Australian experience.

PubMed

Bowden, Michael R; Stormon, Michael; Hardikar, Winita; Ee, Looi C; Krishnan, Usha; Carmody, Diana; Jermyn, Vicki; Lee, Mee-Mee; O'Loughlin, Edward V; Sawyer, Janine; Beyerle, Kathe; Lemberg, Daniel A; Day, Andrew S; Paul, Campbell; Hazell, Philip

2015-06-01

Parenting stress, problems in family functioning, and lack of fathers' engagement in treatment are associated with poor quality of life in children with chronic illnesses. The aim of the present study was to examine these characteristics in families of infants with serious liver disease in Australia, to inform the provision of mental health care for these families. From September 2009 to May 2013, 42 parents of infants recently diagnosed as having serious liver disease (defined as liver disease that may require transplantation in the future) completed questionnaires about family function, impact of the infant's illness on the family, parent stress symptoms, and fathers' engagement in the care of the child. Participants were recruited from 4 metropolitan children's hospitals in Australia. Parents reported psychological symptoms at similar rates to normative populations. Their reports of family functioning were significantly below mean scores in previously published populations with a medically ill family member (population mean 1.89; mothers mean 1.59; fathers mean 1.61, P < 0.001). Disruption to family roles was significantly correlated with psychological symptoms for mothers (r = 0.48, P < 0.01) and fathers (r = 0.31, P < 0.05). Greater helpfulness of fathers was correlated with lower depression in mothers (r = -0.35, P < 0.05), and fathers' anxiety was correlated with their increased engagement (r = 0.40, P < 0.01). When parents report the presence of psychological symptoms, symptoms are likely to be present in both parents and are associated with difficulties adjusting to disrupted family roles. Father engagement may be protective of mothers' mental health.

Talking to children about parental mental illness: The experiences of well parents.

PubMed

Ballal, Divya; Navaneetham, Janardhana

2018-06-01

Children of parents with mental illness are not routinely included in psychoeducational and supportive family interventions provided by adult mental health systems. The family, therefore, is an important and, sometimes, the only source of information and support for them. To understand the experiences of well parents in talking to their children about parental mental illness. This article presents the findings of a qualitative study of the experiences of well parents in talking to their children about parental mental illness. Ten well parents whose spouses were diagnosed with a severe mental illness participated in the study. Socio-demographic information, family details and history of the spouse's mental illness along with their experiences of talking to children about parental mental illness, the perceived risks and benefits, challenges they faced and the role of others in the process were recorded. Qualitative data were analysed using interpretative phenomenological analysis. The themes of 'distancing children from parental mental illness', 'avoiding conversations about the illness', 'giving and receiving emotional support', 'providing explanations of the illness' and 'regulating other sources of information' show the complex ways in which well parents influence their children's understanding of parental mental illness. The findings are examined in the background of what is known about this topic from the perspective of children or of the parent with illness. Possible ways to support well parents in families affected by parental mental illness are discussed. This study is a step forward in the understanding of how families talk to children about parental mental illness and provides the perspective of the well parent.

Treatment for childhood acute lymphoblastic leukaemia: the fathers' perspective.

PubMed

McGrath, P

2001-01-01

Research on parental adaptation to a child's chronic illness is still scant, and this is particularly so in relation to the experience of treatment for paediatric Acute Lymphoblastic Leukaemia (ALL). The work that does exist on parental reactions tends to conflate maternal responses with paternal responses, as fathers are usually seen as having a secondary role. Consequently, little is known about how fathers cope with treatment for childhood ALL. The present discussion seeks to make a contribution to this area by presenting findings on the paternal experience of treatment for paediatric ALL from a longitudinal study conducted at Royal Children's Hospital in Brisbane, Queensland. The findings from this research clearly indicate the emotional pain that fathers face in their struggle to accept the diagnosis of a serious, life-threatening illness such as ALL in their child. The findings challenge the notion of the make stereotype by showing that the shock of diagnosis, the emotional pain of coping with the illness, the expression of pain through tears, the desire to be with the child, the struggle to cope with the medical interventions, and concerns about other family members are not gender specific, but are rather issues common to both parents.

Development and preliminary validation of the 'Mind the Gap' scale to assess satisfaction with transitional health care among adolescents with juvenile idiopathic arthritis.

PubMed

Shaw, K L; Southwood, T R; McDonagh, J E

2007-07-01

To develop a scale to assess satisfaction with transitional health care among adolescents with a chronic illness and their parents. The 'Mind the Gap' scale was developed using evidence from a previous needs assessment, in three stages: (1) definition of the construct; (2) design of the scale items, response options and instructions; (3) full administration of the scale, item analysis and dimensionality analysis. The scale was administered to 308 adolescents with juvenile idiopathic arthritis (JIA) and 303 parents/guardians, prior to and 12 months after the implementation of an evaluation of a structured and co-ordinated programme of transitional care. The patient population involved adolescents with JIA and their parents recruited from 10 major UK rheumatology centres. A total of 301 (97.7%) adolescents and 286 (95.0%) parents chose to complete the questionnaire, with median item completion rates of 100.0% (0-100%) for both adolescents and parents thus confirming feasibility. Face and content validity were confirmed. Factor analyses revealed a three-factor structure which explained 49.5% and 56.1% of the variation in adolescent and parent scores respectively. The internal consistency of each subscale ('management of environment', 'provider characteristics' and 'process issues') was indicated by Cronbach's alphas of 0.71, 0.89 and 0.89 for adolescents, respectively, and 0.83, 0.91 and 0.92 for parents respectively. Cronbach's alphas for the entire scales were 0.91 and 0.94 for the adolescent and parent forms respectively. These preliminary results report the potential of the 'Mind the Gap' scale in evaluating transitional care for adolescents with JIA. In view of the generic nature of transitional care reflected in the scale, this scale has wider potential for use with adolescents with other chronic illness in view of the generic nature of transition. This development is particularly timely in the context of transitional care developments in the UK and further validation of the scale is in progress.

Specialized Summer Camps: Provide Benefits for Children and Families Alike

ERIC Educational Resources Information Center

Neff, John M.

2009-01-01

The arrival of summer signals a season of endless days of swimming, fishing, summer camps, and other outdoor activities. For children with chronic or terminal illnesses, it can be difficult to participate in many of these activities as well as challenging for parents to find summer camps that not only engage their children, but also offer the…

Assessing Experiences of Children Who Attended a Camp for Children with Cancer and Their Siblings: A Preliminary Study

ERIC Educational Resources Information Center

Wu, Yelena P.; Prout, Kerry; Roberts, Michael C.; Parikshak, Sangeeta; Amylon, Michael D.

2011-01-01

Summer camps are commonly implemented as a psychosocial intervention for children with chronic illnesses; however, there have been few published consumer (parent and child) satisfaction evaluations of summer camps. Such evaluations are important both for improving existing services for children and families, as well as to build an empirical…

Life Before Tests: A District's Coordinated Health Approach for Addressing Children's Full Range of Needs

ERIC Educational Resources Information Center

Cooper, Patrick

2005-01-01

Chronic illnesses, depression, abuse of drugs, alcohol and tobacco. Sugary snacks and drinks, vending machines, obesity and bullying. Guns, gang violence, school shootings and test scores. Teen-age birth rates, one-parent households, lack of health or dental care, and, dropouts. All of these issues are interconnected and intertwined with education…

The Impact of Family Life Events and Changes on the Health of a Chronically Ill Child.

ERIC Educational Resources Information Center

Patterson, Joan M.; McCubbin, Hamilton I.

1983-01-01

Examined the relationship between family stress and changes in health of a child with cystic fibrosis. Data from parents (N=100) and clinic records revealed that a decline in pulmonary functioning was associated with family life changes, especially in family development and relationships, family management and decisions, and family finances.…

Awareness and Use of California's Paid Family Leave Insurance Among Parents of Chronically Ill Children

PubMed Central

Schuster, Mark A.; Chung, Paul J.; Elliott, Marc N.; Garfield, Craig F.; Vestal, Katherine D.; Klein, David J.

2016-01-01

Context In 2004, California's Paid Family Leave Insurance Program (PFLI) became the first state program to provide paid leave to care for an ill family member. Objective To assess awareness and use of the program by employed parents of children with special health care needs, a population likely to need leave. Design, Setting, and Participants Telephone interviews with successive cohorts of employed parents before (November 21, 2003-January 31, 2004; n=754) and after (November 18, 2005-January 31, 2006; n=766) PFLI began, randomly sampled from 2 children's hospitals, one in California (with PFLI) and the other in Illinois (without PFLI). Response rates were 82% before and 81% after (California), and 80% before and 74% after (Illinois). Main Outcome Measures Taking leave, length of leave, unmet need for leave, and awareness and use of PFLI. Results Similar percentages of parents at the California site reported taking at least 1 day of leave to care for their ill child before (295 [81%]) and after (327 [79%]) PFLI, taking at least 4 weeks before (64 [21%]) and after (74 [19%]) PFLI, and at least once in the past year not missing work despite believing their child's illness necessitated it before (152 [41%]) and after (156 [41%]) PFLI. Relative to Illinois, parents at the California site reported no change from before to after PFLI in taking at least 1 day of leave (difference of differences, −3%; 95% confidence interval [CI], −13% to 7%); taking at least 4 weeks of leave (1%; 95% CI, −9% to 10%); or not missing work, despite believing their child's illness necessitated it (−1%; 95% CI, −13% to 10%). Only 77 parents (18%) had heard of PFLI approximately 18 months after the program began, and only 20 (5%) had used it. Even among parents without other access to paid leave, awareness and use of PFLI were minimal. Conclusions Parents of children with special health care needs receiving care at a California hospital were generally unaware of PFLI and rarely used it. Among parents of children with special health care needs, taking leave in California did not increase after PFLI implementation compared with Illinois. PMID:18768416

Parental Bereavement during Mid-to-Later Life: Pre-to-Post-Bereavement Functioning and Intrapersonal Resources for Coping

PubMed Central

Floyd, Frank J.; Seltzer, Marsha Mailick; Greenberg, Jan S.; Song, Jieun

2012-01-01

The death of a child when parents are in mid-to-late life is a traumatic event for aging parents. In order to evaluate adjustment, the impact of unanticipated versus anticipated deaths, and the effects of internal resources for coping with bereavement, we examined pre- and post-bereavement functioning, using the 1992/94 and 2004/06 waves of the Wisconsin Longitudinal Study, for parents (M age = 52 and 65 years, respectively) whose adult child died between these dates (n = 175). The results revealed a general pattern of adaptation in which most bereaved parents were functioning as well as a matched comparison group (n = 175), though more depression symptoms were present both before and after the death of the child for the mothers of children who died from long-term illnesses and the fathers of children who committed suicide, suggesting that conditions predating the death were chronic strains for these parents. Intrapersonal resources, including a sense of purpose in life and high levels of agreeableness, were associated with better functioning, particularly for bereaved parents whose children’s deaths were not anticipated. The study places parental bereavement in the context of normative aging and the framework of chronic life strain. PMID:23088199

Opening caregiver minds: National Alliance for the Mentally Ill's (NAMI) provider education program.

PubMed

Mohr, W K; Lafuze, J E; Mohr, B D

2000-10-01

The belief that poor parenting and dysfunctional families give rise to mental illness has been perpetuated by psychodynamic and family systems theories that lack supporting scientific evidence, and interventions based on these theories have failed to produce clinical improvements. Nevertheless the National Alliance for the Mentally III (NAMI) found that many clinical training programs continue to teach these outdated theories and interventions and that the mental health system is often destructive to family systems. This article describes a new 10-week program that is designed to educate service providers that will include families in the care of their chronically ill loved one. The program is based on a competence and adaptation rather than a pathology foundation and it shifts the discourse from causes to effects of illness.

Parental perspectives on caring for a child with chronic kidney disease: an in-depth interview study.

PubMed

Tong, A; Lowe, A; Sainsbury, P; Craig, J C

2010-07-01

Children diagnosed with chronic kidney disease (CKD) depend on their parents for complex, continuous and intensive support. The study aimed to explore the experiences of parents who have children with CKD. Parents of 20 children with CKD, recruited from two paediatric hospitals in Australia, participated in an in-depth interview, qualitative study. Four major themes were identified: (1) absorbing the clinical environment: parents struggled to accept the diagnosis and permanence of CKD, felt traumatized watching their child undergo invasive clinical procedures, battled to meet appointments, negotiated with staff for their child's needs and felt disempowered; (2) medicalizing parenting: parents became caregivers, a role which was stressful, exhausting and overwhelming. Dialysis was unrelenting and consumed the time, thoughts and energy of parents who felt at fault if their child developed infections and other complications. Parents struggled with their child's psychological problems and episodic aggressive behaviour; (3) disrupting family norms: CKD caused spousal tension, sibling neglect and influenced family planning; (4) coping strategies and support structures: Parents depended on support from their health care providers and valued meeting and learning from other parents of CKD children. Parents also expressed information needs and suggested methods of communicating information. Despite facing profound and pervasive difficulties, parents strived to fulfil their dual parental and health care provider responsibilities. Parents appear to need better support structures to help them cope with the difficulties encountered during all stages of their child's illness.

[Compassionate care for terminally ill term and preterm infants].

PubMed

Schulze, A; Wermuth, I

2007-04-01

Involvement of the family in decisions to withhold or withdraw intensive care and parental involvement in care planning for terminally ill infants does not aggravate or prolong parents' grief responses, their feelings of guilt, or the incidence of pathological grief responses. Effective physical pain and symptom management is critically important. Compassionate care plans, however, need to implement a number of other and equally important components. Parents are not uniform in their perceived needs to make various kinds of contacts with their dying infant. They should be allowed to make their individual choices regarding contact with their baby during that time. The perinatal loss of a twin infant appears to evoke no less serious stress and risks to parents' compared to the loss of a singleton. The disruption of family life during a perinatal loss affects siblings of the baby, and their specific needs should be acknowledged. Post-death or post-autopsy meetings with the family should routinely be scheduled a few weeks after death, and bereavement support should actively be offered. Parents need to be informed about differences to be expected between maternal and paternal grief responses. The risk of pathological grief variants and chronic grief should be mentioned to parents because professional help is required in such occurrence.

The 'picky eater': The toddler or preschooler who does not eat.

PubMed

Leung, Alexander Kc; Marchand, Valérie; Sauve, Reginald S

2012-10-01

The majority of children between one and five years of age who are brought in by their parents for refusing to eat are healthy and have an appetite that is appropriate for their age and growth rate. Unrealistic parental expectations may result in unnecessary concern, and inappropriate threats or punishments may aggravate a child's refusal to eat. A detailed history and general physical examination are necessary to rule out acute and chronic illnesses. A food diary and assessment of parental expectations about eating behaviour should be completed. Where the child's 'refusal' to eat is found to be related to unrealistic expectations, parents should be reassured and counselled about the normal growth and development of children at this age.

Support as a crucial predictor of good compliance of adolescents with a chronic disease.

PubMed

Kyngas, H; Rissanen, M

2001-11-01

The purpose of this study was to describe the factors that predict compliance among adolescents with a chronic illness. The data were collected by questionnaires from adolescents with asthma, epilepsy, juvenile rheumatoid arthritis (JRA) and insulin-dependent diabetes mellitus (IDDM). Groups of 300 adolescents with these illnesses were selected from the Finnish Social Insurance Institution's register, giving a total study series of 1200 individuals. The final response percentage was 88% (n = 1061). The data were analysed with the SPSS software. Logistic regression was used to indicate the predictors of good compliance. The compliance of adolescents with a chronic disease was predicted on the basis of support from parents, nurses, physicians and friends, as well as motivation, energy and willpower. The most powerful predictor was support from nurses. The likelihood of adolescents supported by nurses complying with health regimens was 7.28-fold compared to the adolescents who did not receive support from nurses. The next powerful predictor was energy and willpower. Adolescents who had the energy and willpower to take care of themselves complied with health regimens with a 6.69-fold likelihood compared to the adolescents who did not have energy and willpower. Adolescents who had good motivation were 5.28 times more likely to comply than the adolescents who did not have motivation. Support from parents, physicians and friends similarly predicted good compliance with health regimens.

Reliability and validity of the PedsQL™ Multidimensional Fatigue Scale in Japan.

PubMed

Kobayashi, Kyoko; Okano, Yoshiyuki; Hohashi, Naohiro

2011-09-01

To examine the reliability and validity of the Japanese-language version of the PedsQL™ Multidimensional Fatigue Scale and to investigate the agreement between child self-reported fatigue and parent proxy-reported fatigue. The Japanese-language version of the PedsQL™ Multidimensional Fatigue Scale was administered to 652 preschoolers and schoolchildren aged 5-12 and their parents, and to 91 parents of preschool children aged 1-4. Internal consistency reliability was 0.62-0.87 for children and 0.81-0.93 for parents. Known-group validity was examined between a group of healthy samples (n = 530) and chronic condition sample (n = 102); the chronically ill group reported a significantly higher perceived fatigue problem. Correlations between child self- and parent proxy reports ranged from poor to fair. In subgroups identified by cluster analysis based on child self-reported scores, the greatest agreement between child and parent reports was seen in the good HRQOL group, while the least occurred in the poor HRQOL group. The parents overestimated their child's fatigue more when the child's HRQOL was low. The Japanese-language version of the PedsQL™ Multidimensional Fatigue Scale demonstrated good reliability and validity and could be useful in evaluating Japanese children in school and health care settings.

Mothers' experience of caring for a child with early onset scoliosis: A qualitative descriptive study.

PubMed

Lauder, Bonnie; Sinclair, Peter M; Maguire, Jane

2018-04-01

This study aimed to identify and describe the experience of parents of children diagnosed with early onset scoliosis living in Australia. Chronic childhood disease has a major impact on health-related quality of life. Caring for a child with a chronic illness is well documented but the specific experiences of parents who care for children with early onset scoliosis, a rare but devastating illness, has not been explored. Numerous studies have described the interrelated psychological, financial, social, physical and logistical factors that impact the experience of the caregiver role with various diseases, but in the case of early onset scoliosis, limited studies have been conducted about the parental experience. A qualitative descriptive design was used. A snowball sampling technique assisted in the recruitment. Parents invited to the study included mothers, fathers and guardians. Data were collected through semistructured interviews and transcribed verbatim. Transcripts were analysed thematically. Data collection complied with the Consolidated criteria for reporting qualitative research guidelines. Twelve mothers of children with early onset scoliosis were interviewed, as only mothers consented to participate. Four major themes emerged: emotional rollercoaster ride, a lack of resources, money talks and pervasive burden. Factors that impacted on the participants' ability to confront, manage and endure caring for a child with early onset scoliosis emerged from the data. The findings suggest there are multiple factors that influence the experience of mothers' caring for a child with early onset scoliosis. The recognition and appropriate management of these factors by healthcare professionals have the potential to improve the quality of life of parents who care for a child with early onset scoliosis. Healthcare professionals have first-line contact with parents of children with early onset scoliosis and are well placed to provide parents with evidence-based education and increased support. © 2018 John Wiley & Sons Ltd.

Validation of Persian Version of PedsQL™ 4.0™ Generic Core Scales in Toddlers and Children

PubMed Central

Gheissari, Alaleh; Farajzadegan, Ziba; Heidary, Maryam; Salehi, Fatemeh; Masaeli, Ali; Mazrooei, Amin; Varni, James W; Fallah, Zahra; Zandieh, Fariborz

2012-01-01

Introduction: To evaluate the reliability, validity and feasibility of the Persian version of the Pediatric Quality of Life inventory (PedsQL™ 4.0™ 4.0) Generic Core Scales in Iranian healthy students ages 7-15 and chronically ill children ages 2-18. Methods: We followed the translation methodology proposed by developer to validate Persian version of PedsQL™ 4.0™ 4.0 Generic Core Scales for children. Six hundred and sixty children and adolescents and their parents were enrolled. Sample of 160 healthy students were chosen by random cluster method between 4 regions of Isfahan education offices and 60 chronically ill children were recruited from St. Alzahra hospital private clinics. The questionnaires were fulfilled by the participants. Results: The Persian version of PedsQL™ 4.0™ 4.0 Generic Core Scales discriminated between healthy and chronically ill children (healthy students mean score was 12.3 better than chronically ill children, P<0.001). Cronbachs’ alpha internal consistency values exceeded 0.7 for children self reports and proxy reports of children 5-7 years old and 13-18 years old. Reliability of proxy reports for 2-4 years old was much lower than 0.7. Although, proxy reports for chronically ill children 8-12 years old was more than 0.7, these reports for healthy children with same age group was slightly lower than 0.7. Constructive, criterion face and content validity were acceptable. In addition, the Persian version of PedsQL™ 4.0™ 4.0 Generic Core Scales was feasible and easy to complete. Conclusion: Results showed that Persian version of PedsQL™ 4.0™ 4.0 Generic Core Scales is valid and acceptable for pediatric health researches. It is necessary to alternate scoring for 2-4 years old questionnaire and to find a way to increase reliability for healthy children aged 8-12 years especially, according to Iranian culture. PMID:22701775

Insight into mental illness, self-stigma, and the family burden of parents of persons with a severe mental illness.

PubMed

Hasson-Ohayon, Ilanit; Levy, Itamar; Kravetz, Shlomo; Vollanski-Narkis, Adi; Roe, David

2011-01-01

Parents of persons with severe mental illness (SMI) often experience burden due to the illness of their daughter or son. In the present study, the possibility that parents' self-stigma moderates the relationship between the parents' insight into a daughter's or son's illness and the parents' sense of burden was investigated. Levels of insight into a daughter's or son's mental illness, parent self-stigma, and parent burden of 127 parents of persons with an SMI were assessed. Regression analysis was used to test the putative moderating role of parents' self-stigma. Self-stigma was found to mediate rather than moderate the relationship between insight and burden. Accordingly, parent insight into the mental illness of a daughter or son appears to increase parent burden because it increases parent self-stigma. The implications of these findings for practice, theory, and future research are discussed. © 2011 Elsevier Inc. All rights reserved.

Predictors of adaptation in Icelandic and American families of young children with chronic asthma.

PubMed

Svavarsdottir, Erla Kolbrun; Rayens, Mary Kay; McCubbin, Marilyn

2005-01-01

The purposes of this international study were to determine the predictors of adaptation and to assess potential moderating effects of parents' sense of coherence and family hardiness on the relationship of severity of illness of a child with asthma and family and caregiving demands as predictors of family adaptation. For both parents, sense of coherence and family hardiness predicted family adaptation. Icelandic mothers perceived their family's adaptation more favorably than did their American counterparts. For the fathers, family demands predicted adaptation. Sense of coherence moderated the effect of family demands on adaptation for both parents. These findings underscore the importance of strengthening individual and family resiliency as a mechanism for improving family adaptation.

The relationship between clinical insight and cognitive and affective empathy in schizophrenia.

PubMed

Atoui, Mia; El Jamil, Fatima; El Khoury, Joseph; Doumit, Mark; Syriani, Nathalie; Khani, Munir; Nahas, Ziad

2018-06-01

Schizophrenia is often associated with poor clinical insight (unawareness of mental illness and its symptoms) and deficits in empathy, which are important for social functioning. Cognitive empathy has been linked to clinical insight while affective empathy and its role in insight and pathology have received mixed evidence. Instruments assessing symptomatology (Positive and Negative Syndrome Scale; PANSS), clinical insight (Scales to assess awareness of mental disorders; SUMD), and cognitive and affective empathy were administered to 22 participants with first episode and chronic schizophrenia and 21 healthy controls. Self-report, parent-report, and performance based measures were used to assess cognitive and affective empathy (The interpersonal reactivity index; IRI/Reading the Mind in the Eyes Test/Faux Pas) to reduce bias and parse shared variance. Age of onset, gender, and symptomatology emerged as significant predictors of poor clinical insight. Additionally, the fantasy subscale of the IRI as reported by parents emerged as a positive predictor while the personal distress (parent report) subscale emerged as a negative predictor of awareness into mental illness. There were significant differences on performance-based measures of empathy between the control and schizophrenia groups. Findings suggest that affective empathy is relatively intact across phases of illness whereas cognitive empathy abilities are compromised and could be targets for psychotherapy intervention.

Parent proxy-report of their children's health-related quality of life: an analysis of 13,878 parents' reliability and validity across age subgroups using the PedsQL 4.0 Generic Core Scales.

PubMed

Varni, James W; Limbers, Christine A; Burwinkle, Tasha M

2007-01-03

Health-related quality of life (HRQOL) measurement has emerged as an important health outcome in clinical trials, clinical practice improvement strategies, and healthcare services research and evaluation. While pediatric patient self-report should be considered the standard for measuring perceived HRQOL, there are circumstances when children are too young, too cognitively impaired, too ill or fatigued to complete a HRQOL instrument, and reliable and valid parent proxy-report instruments are needed in such cases. Further, it is typically parents' perceptions of their children's HRQOL that influences healthcare utilization. Data from the PedsQL DatabaseSM were utilized to test the reliability and validity of parent proxy-report at the individual age subgroup level for ages 2-16 years as recommended by recent FDA guidelines. The sample analyzed represents parent proxy-report age data on 13,878 children ages 2 to 16 years from the PedsQL 4.0 Generic Core Scales DatabaseSM. Parents were recruited from general pediatric clinics, subspecialty clinics, and hospitals in which their children were being seen for well-child checks, mild acute illness, or chronic illness care (n = 3,718, 26.8%), and from a State Children's Health Insurance Program (SCHIP) in California (n = 10,160, 73.2%). The percentage of missing item responses for the parent proxy-report sample as a whole was 2.1%, supporting feasibility. The majority of the parent proxy-report scales across the age subgroups exceeded the minimum internal consistency reliability standard of 0.70 required for group comparisons, while the Total Scale Scores across the age subgroups approached or exceeded the reliability criterion of 0.90 recommended for analyzing individual patient scale scores. Construct validity was demonstrated utilizing the known groups approach. For each PedsQL scale and summary score, across age subgroups, healthy children demonstrated a statistically significant difference in HRQOL (better HRQOL) than children with a known chronic health condition, with most effect sizes in the medium to large effect size range. The results demonstrate the feasibility, reliability, and validity of parent proxy-report at the individual age subgroup for ages 2-16 years. These analyses are consistent with recent FDA guidelines which require instrument development and validation testing for children and adolescents within fairly narrow age groupings and which determine the lower age limit at which reliable and valid responses across age categories are achievable. Even as pediatric patient self-report is advocated, there remains a fundamental role for parent proxy-report in pediatric clinical trials and health services research.

Chronic cough postacute respiratory illness in children: a cohort study.

PubMed

O'Grady, Kerry-Ann F; Drescher, Benjamin J; Goyal, Vikas; Phillips, Natalie; Acworth, Jason; Marchant, Julie M; Chang, Anne B

2017-11-01

Data on the aetiology of persistent cough at the transitional stage from subacute to chronic cough (>4 weeks duration) are scarce. We aimed to (1) identify the prevalence of chronic cough following acute respiratory illness (ARI) and (2) determine the diagnostic outcomes of children with chronic cough. Prospective cohort study. A paediatric emergency department (ED) in Brisbane, Australia. Children aged <15 years presenting with an ARI with cough. Children were followed weekly for 28 days;those with a persistent cough at day 28 were reviewed by a paediatric pulmonologist. Cough persistence at day 28 and pulmonologist diagnosis. 2586 children were screened and 776 (30%) were ineligible; 839 children (median age=2.3 years, range=0.5 months to 14.7 years, 60% male) were enrolled over 2 years. Most children (n=627, 74.8%) had cough duration of <7 days at enrolment. At day 28, 171/839 (20.4%, 95% CI 17.7 to 23.1) children had persistent cough irrespective of cough duration at enrolment. The cough was wet in 59/171 (34.5%), dry in 45/171 (26.4%) and variable in 28/171 (16.1%). Of these 117 children , 117 (68.4%) were reviewed by a paediatric pulmonologist. A new and serious chronic lung disease was diagnosed in 36/117 (30.8%) children; 55/117 (47.0%) were diagnosed with protracted bacterial bronchitis. When chronic cough develops post-ARI, clinical review is warranted, particularly if parents report a history of prolonged or recurrent cough. Parents of children presenting acutely to ED with cough should be counselled about the development of chronic cough, as an underlying respiratory condition is not uncommon. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

The diversity of family health: constituent systems and resources.

PubMed

Hopia, Hanna; Paavilainen, Eija; Astedt-Kurki, Päivi

2005-09-01

The purpose of this study was to explore changes in family health associated with child's chronic illness and hospitalization. The aim was to answer the following questions: (i) What kind of changes do families experience when a child in the family is afflicted by a chronic illness; and (ii) What kind of changes do families experience when their child is admitted to hospital? The data were collected in 2002 in interviews with 29 such families whose children were receiving treatment or who had previously received treatment on the paediatric wards of two hospitals in Finland. Data were collected until reaching theoretical saturation, in which no additional data are found. Data analysis was based on the grounded theory method, proceeding to the stage of axial coding. Family health was formed out of two different dimensions: the constituent systems and the resources of family health. The constituent systems describe the impact of the child's chronic illness and period of hospitalization at the level of both individual family members and the family as a whole. These systems were described by five categories: (i) ill child at the centre of family attention, (ii) siblings in a minor role, (iii) the child's illness governs parental well-being, (iv) the roller coaster of the couple relationship and (v) the whole family is ill. The resources promoting and maintaining family health were divided into six different categories: (i) creative and maintaining mental images, (ii) active involvement, (iii) internal coping means, (iv) reinforcement of coping means, (v) awareness and change of values and (vi) social network shares emotional burden and responsibility for care. The results of the study show that family health is highly vulnerable when a child has to be admitted to hospital because of a chronic condition. They should help nursing staff gain a clearer picture of the depth and diversity of family health and support the resources that promote family health. Future research should study the methods of family nursing used in the care of families with children with chronic conditions.

Abnormal illness behaviour: physiological, psychological and social dimensions of coping with distress.

PubMed

Kirmayer, Laurence J; Looper, Karl J

2006-01-01

Pilowsky introduced the term 'abnormal illness behaviour' to characterize syndromes of excessive or inadequate response to symptoms, including hypochondriasis, somatization, and denial of illness. This review summarizes recent work from sociology, health psychology and psychiatry that contributes to an understanding of the processes that may underlie abnormal illness behaviour. Disturbances in the regulation of physiological systems may account for many 'unexplained' symptoms and sickness behaviour. Increased attention to bodily sensations, sensitivity to pain and catastrophizing play important roles in illness behaviour in medical illness. Developmental adversities and parental modelling of illness behaviour in childhood may increase bodily preoccupation and health care utilization. Apparent cross-national differences in illness behaviour may reflect differences in health care systems, but cultural models of illness and social stigma remain important determinants of illness denial and avoidance of mental health services. Research into illness behaviour is relevant to efforts to rethink the psychiatric nosology of somatoform disorders. The discrete somatoform disorders might well be replaced by a dimensional framework that identifies specific pathological processes in cognition, perception and social behaviour that contribute to bodily distress, impaired coping, inappropriate use of health services, chronicity and disability.

Parents' labour market participation as a predictor of children's health and wellbeing: a comparative study in five Nordic countries.

PubMed

Reinhardt Pedersen, C; Madsen, M

2002-11-01

To study the association between parents' labour market participation and children's health and wellbeing. Parent reported data on health and wellbeing among their children from the survey Health and welfare among children and adolescents in the Nordic countries, 1996. A cross sectional study of random samples of children and their families in five Nordic countries (Denmark, Finland, Iceland, Norway, and Sweden). A total of 10 317 children aged 2-17 years. Children in families with no parents employed in the past six months had higher prevalence of recurrent psychosomatic symptoms (odds ratio 1.67, 95% confidence intervals 1.16 to 2.40), chronic illness (odds ratio 1.35, 95% confidence intervals 1.00 to 1.84), and low wellbeing (odds ratio 1.47, 95% confidence intervals 1.12 to 1.94). Social class, family type, parents' immigrant status, gender and age of the child, respondent, and country were included as confounders. When social class, family type and the parents' immigrant status (one or more born in the Nordic country versus both born elsewhere) were introduced into the model, the odds ratios were reduced but were still statistically significant. Health outcomes and parents' labour market participation were associated in all five countries. Children in families with no parents employed in the past six months had higher prevalence of ill health and low wellbeing in the five Nordic countries despite differences in employment rates and social benefits.

Exploration of the short-term and long-term effects of parental illness on children's educational and behavioral functioning using a large Taiwanese sample.

PubMed

Chen, Yung-Chi

2014-05-01

This study used data from Waves I and II of the Taiwan Educational Panel Survey (TEPS) to explore the potential short-term and long-term effects of parental illness and health condition on children's behavioral and educational functioning. A sample of 11,018 junior high school students and their parents and teachers in Taiwan were included in this present study. The results supported previous work that parental illness may place children at slight risk for poor psychosocial adjustment and behavioral problems. Parental illness was associated with lower adaptive skills and more behavioral problems in children. Children of ill parents showed resilience in their educational functioning in the event of parental illness as children's academic achievement and learning skills were not related to parental illness/health condition.

Communication and support from health-care professionals to families, with dependent children, following the diagnosis of parental life-limiting illness: A systematic review.

PubMed

Fearnley, Rachel; Boland, Jason W

2017-03-01

Communication between parents and their children about parental life-limiting illness is stressful. Parents want support from health-care professionals; however, the extent of this support is not known. Awareness of family's needs would help ensure appropriate support. To find the current literature exploring (1) how parents with a life-limiting illness, who have dependent children, perceive health-care professionals' communication with them about the illness, diagnosis and treatments, including how social, practical and emotional support is offered to them and (2) how this contributes to the parents' feelings of supporting their children. A systematic literature review and narrative synthesis. Embase, MEDLINE, PsycINFO, CINAHL and ASSIA ProQuest were searched in November 2015 for studies assessing communication between health-care professionals and parents about how to talk with their children about the parent's illness. There were 1342 records identified, five qualitative studies met the inclusion criteria (55 ill parents, 11 spouses/carers, 26 children and 16 health-care professionals). Parents wanted information from health-care professionals about how to talk to their children about the illness; this was not routinely offered. Children also want to talk with a health-care professional about their parents' illness. Health-care professionals are concerned that conversations with parents and their children will be too difficult and time-consuming. Parents with a life-limiting illness want support from their health-care professionals about how to communicate with their children about the illness. Their children look to health-care professionals for information about their parent's illness. Health-care professionals, have an important role but appear reluctant to address these concerns because of fears of insufficient time and expertise.

Support and Education of Immigrants with Chronically Ill Children: Identified Needs from a Case Study of Turkish and Kurdish Families

ERIC Educational Resources Information Center

Povlsen, Lene; Karlberg, Ingvar; Ringsberg, Karin C

2008-01-01

Objective: The aim of the study was to analyse how parents of Turkish and Turkish/Kurdish children with diabetes and health care professionals perceived the education and support provided, and to assess what was required to improve the collaboration between the families and the team in order to optimize selfcare and metabolic control. Design: A…

Effect of a group intervention for children and their parents who have cancer.

PubMed

Kobayashi, Mariko; Heiney, Sue P; Osawa, Kaori; Ozawa, Miwa; Matsushima, Eisuke

2017-10-01

Although support programs for children whose parents have cancer have been described and evaluated, formal research has not been conducted to document outcomes. We adapted a group intervention called CLIMB®, originally developed in the United States, and implemented it in Tokyo, Japan, for school-aged children and their parents with cancer. The purpose of this exploratory pilot study was to examine the feasibility, acceptability, and impact of the Japanese version of the CLIMB® Program on children's stress and parents' quality of life and psychosocial distress. We enrolled children and parents in six waves of replicate sets for the six-week group intervention. A total of 24 parents (23 mothers and 1 father) diagnosed with cancer and 38 school-aged children (27 girls and 11 boys) participated in our study. Intervention fidelity, including parent and child satisfaction with the program, was examined. The impact of the program was analyzed using a quasiexperimental within-subject design comparing pre- and posttest assessments of children and parents in separate analyses. Both children and parents experienced high levels of satisfaction with the program. Children's posttraumatic stress symptoms related to a parent's illness decreased after the intervention as measured by the Posttraumatic Stress Disorder-Reaction Index. No difference was found in children's psychosocial stress. The Functional Assessment of Chronic Illness Therapy scores indicated that parents' quality of life improved after the intervention in all domains except for physical well-being. However, no differences were found in parents' psychological distress and posttraumatic stress symptoms. Our results suggest that the group intervention using the CLIMB® Program relieved children's posttraumatic stress symptoms and improved parents' quality of life. The intervention proved the feasibility of delivering the program using manuals and training. Further research is needed to provide more substantiation for the benefits of the program.

The Chronically Ill Child in the School.

ERIC Educational Resources Information Center

Sexson, Sandra; Madan-Swain, Avi

1995-01-01

Examines the effects of chronic illness on the school-age population. Facilitating successful functioning of chronically ill youths is a growing problem. Focuses on problems encountered by the chronically ill student who has either been diagnosed with a chronic illness or who has survived such an illness. Discusses the role of the school…

Coping and resilience of children of a mentally ill parent.

PubMed

Pölkki, Pirjo; Ervast, Sari-Anne; Huupponen, Marika

2004-01-01

This paper examines the needs and stress reactions of children of mentally ill parents, as well as coping and resilience. The study is based on the interviews of six 9-11 years old children and narratives of seventeen female grown up children of mentally ill parents. The younger and older children of the mentally ill parents had not been informed about their parent's illness. The illness of the parent aroused a variety of emotions in them. The children used both practical problem solving and emotional coping mechanisms. Informal social support was available to them but seldom from the public services. It is recommended that professionals in mental health and child welfare services clarify their roles when working with mentally ill parents. The best interest of the child and the parenting they need should be carefully assessed. Open care measures should be offered to families early enough to prevent serious child welfare and mental problems.

The impact of unemployment cycles on child and maternal health in Argentina.

PubMed

Wehby, George L; Gimenez, Lucas G; López-Camelo, Jorge S

2017-03-01

The purpose of this study is to examine the effects of economic cycles in Argentina on infant and maternal health between 1994 and 2006, a period that spans the major economic crisis in 1999-2002. We evaluate the effects of province-level unemployment rates on several infant health outcomes, including birth weight, gestational age, fetal growth rate, and hospital discharge status after birth in a sample of 15,000 infants born in 13 provinces. Maternal health and healthcare outcomes include acute and chronic illnesses, infectious diseases, and use of prenatal visits and technology. Regression models control for hospital and year fixed effects and province-specific time trends. Unemployment rise reduces fetal growth rate particularly among high educated parents. Also, maternal poverty-related infectious diseases increase, although reporting of acute illnesses declines (an effect more pronounced among low educated parents). There is also some evidence for reduced access to prenatal care and technology among less educated parents with higher unemployment. Unemployment rise in Argentina has adversely affected certain infant and maternal health outcomes, but several measures show no evidence of significant change.

[The changing life of caregiving mothers of children with chronic kidney disease--a single case study].

PubMed

Pareiner, Magdalena; Ausserhofer, Dietmar; Mantovan, Franco

2010-09-01

The scientific literature shows, that caring parents of children with chronic kidney disease experience profound changes of life-world in terms of their welfare and their health. The different experiences that by the child's illness influenced the life-world of the parents in the two stages of life "living with peritoneal dialysis" and "living after kidney transplantation" have not yet been described in the German literature. To study the changing life-world in the two stages of life "living with peritoneal dialysis" and "living after kidney transplantation" of the child, a single case study was carried out. The mother was interviewed using a problem-centered-interview. The analysis of the interview was based on Mayring's technique of content analysis (2002). The category system shows that mother's life-world is influenced by different experiences in both stages of life. Subjectively, the mother saw her greatest challenge during the "life with peritoneal dialysis" in following the hygienic rules and the prevention of peritation" was her fear that the donor kidney would be rejected by her child. The results of this study correspond to the results of previous studies in the English literature. Healthcare professionals, including nurses can use the results of this study to build up a professional relationship, for empathic support and for improvement of parental well-being. Further qualitative research should focus on healthcare professionals' view regarding the experiences and needs of caring parents of children with chronic kidney disease in order to compare with parents' view.

The impact of the parental illness representation on disease management in childhood asthma.

PubMed

Yoos, H Lorrie; Kitzman, Harriet; Henderson, Charles; McMullen, Ann; Sidora-Arcoleo, Kimberly; Halterman, Jill S; Anson, Elizabeth

2007-01-01

Despite significant advances in treatment modalities, morbidity due to childhood asthma has continued to increase, particularly for poor and minority children. To describe the parental illness representation of asthma in juxtaposition to the professional model of asthma and to evaluate the impact of that illness representation on the adequacy of the child's medication regimen. Parents (n = 228) of children with asthma were interviewed regarding illness beliefs using a semistructured interview. The impact of background characteristics, parental beliefs, the child's symptom interpretation, and the parent-healthcare provider (HCP) relationship on the adequacy of the child's medication regimen were evaluated. The parental and professional models of asthma differ markedly. Demographic risk factors (p = .005), low parental education (p < .0001), inaccurate symptom evaluation by the child (p = .02), and a poor parent-HCP relationship (p < .0001) had a negative effect on the parental illness representation. A parental illness representation concordant with the professional model of asthma (p = .05) and more formal asthma education (p = .02) had a direct positive effect on the medication regimen. Demographic risk factors (p = .006) and informal advice-seeking (p = .0003) had a negative impact on the regimen. The parental illness representation mediated the impact of demographic risk factors (p = .10), parental education (p =.07), and the parent-HCP relationship (p = .06) on the regimen. Parents and HCPs may come to the clinical encounter with markedly different illness representations. Establishing a partnership with parents by eliciting and acknowledging parental beliefs is an important component of improving disease management.

Newly diagnosed childhood diabetes: a psychosocial transition for parents?

PubMed

Lowes, Lesley; Gregory, John W; Lyne, Patricia

2005-05-01

This paper reports a study to gain a new theoretical understanding of parental grief responses and the process of adaptation to a diagnosis of childhood diabetes. A diagnosis of childhood (type 1) diabetes is an anxious and distressing event for the whole family. Little is known about the experience of parents of newly diagnosed children as they cope with and adapt to their new situation. Parkes' Theory of Psychosocial Transition proposes that life-change events, or 'psychosocial transitions', require people to undertake a major revision of their assumptions about the world. The relevance of this theory to adjusting to a diagnosis of childhood diabetes has not been explored. Forty audio taped in-depth interviews were undertaken with 38 parents of 20 newly-diagnosed children. The data were subsequently examined using the framework of the Theory of Psychosocial Transition. Before diagnosis, most parents associated their child's symptoms with normal childhood illnesses. The unexpectedness and speed of the diagnosis left all parents ill-prepared to deal with the situation. Their world suddenly changed, leaving them insecure and uncertain about the future. Diabetes intruded emotionally and practically upon all of their lives. Parents successfully adjusted and adapted their lives and rebuilt a new model of the world to accommodate their child's diabetes. However, this dynamic process has no guaranteed endpoint for parents. A diagnosis of childhood diabetes leads to a psychosocial transition for parents. The concept of transition provides a logical explanation of parents' responses to loss, and allows increased understanding of the grieving and adaptation processes experienced by parents of children diagnosed with a chronic condition such as diabetes. This knowledge should help health care professionals to assist parents in the period of transition.

Prevalence of psychopathology in children of parents with mental illness and/or addiction: an up to date narrative review.

PubMed

Leijdesdorff, Sophie; van Doesum, Karin; Popma, Arne; Klaassen, Rianne; van Amelsvoort, Therese

2017-07-01

Children of parents with a mental illness and/or addiction are at high risk for developing a mental illness themselves. Parental mental illness is highly prevalent leading to a serious number of children at high risk. The aim of this review is to give an up-to-date overview of psychopathology in children of parents with various mental illnesses and/or addiction, based on recent literature. Worldwide, 15-23% of children live with a parent with a mental illness. These children have up to 50% chance of developing a mental illness. Parental anxiety disorder sets children at a more specific risk for developing anxiety disorder themselves, where children of parents with other mental illnesses are at high risk of a large variety of mental illnesses. Although preventive interventions in children of mentally ill parents may decrease the risk of problem development by 40%; currently, these children are not automatically identified and offered help. This knowledge should encourage mental health services to address the needs of these children which requires strong collaboration between Child and Adolescent Mental Health Services and Adult Mental Health Services. Directions for further research would be to include both parents, allow for comorbidity and to look deeper into a broader variety of mental illnesses such as autism and personality disorder other than borderline.

Exploring the relationship between adverse childhood experiences and oral health-related quality of life.

PubMed

Kabani, Faizan; Lykens, Kristine; Tak, Hyo Jung

2018-05-12

Evidence indicates that adverse childhood experiences (ACEs) have destructive impacts on quality of life, health outcomes, and health-care expenditures. Studies further demonstrate a dose-response relationship between the number of ACEs and risk for experiencing chronic illness, such as oral diseases later in life. Research is scarce on the prioritization of contextualized public health interventions addressing this important threat. Cross-sectional data from 2011 to 2012 National Survey of Children's Health (NSCH) provided a nationally representative sample of children in the United States, ages 1-17 for dentate status (n = 61,530). The dependent variables identified untreated oral health-care needs and preventive dental utilization. The key independent variables included exposure to parental death, parental divorce, parental incarceration, mental health illnesses, domestic violence, neighborhood violence, and racial discrimination. Exogenous variables included age, sex, race/ethnicity, number of children in household, socioeconomic status proxies, health insurance status, and special health needs. The data, when adjusted for complex survey design, proportionately represent children in the United States. Unadjusted and adjusted logistic regressions revealed varying magnitudes of significance across diverse racial and ethnic profiles. Exposures to parental divorce and parental death particularly exhibited critical magnitudes of influence, compared to all other ACEs. In keeping with the Pareto Principle, exposure to certain ACEs, namely parental divorce and parental death, potentially introduces more profound social and health-related consequences later in life. Therefore, contextualized interventions should prioritize public health efforts to address households burdened with exposure to parental divorce and/or parental death. © 2018 American Association of Public Health Dentistry.

Parental Presence at the Bedside of Critically Ill Children in a Unit With Unrestricted Visitation.

PubMed

Foster, Jennifer R; AlOthmani, Farhana I; Seabrook, Jamie A; AlOfisan, Tariq; AlGarni, Yasser M; Sarpal, Amrita

2018-06-11

To determine the percentage of time that critically ill children have a parent at the bedside and to identify extrinsic factors that are associated with percent of time with parental presence at the bedside. Prospective cohort study. PICU in a single tertiary care children's hospital. Primary two parents of all children admitted to the PICU on 12 preselected days during a 1-year period from 2014 to 2015. None. A total of 111 observations of 108 unique PICU admissions and families were performed. Children had at least one parent present a mean of 58.2% (SD, 34.6%) of the time. Mothers spent more time at the bedside (56.3% [SD, 31.0%]) than fathers (37.3% [SD, 29.5%]) (p = 0.0001). Percent of time with parental presence at the bedside was positively correlated with age (rs = 0.23; p = 0.02) and negatively associated with Pediatric Risk of Mortality III score (rs = -0.26; p = 0.01). Percent of time with parental presence at the bedside was lower for children who were mechanically ventilated (42.8% [SD, 35.5%]) than not (64.5% [SD, 32.2%]) (p = 0.01) and whose parent(s) were single (45.5% [SD, 27.5%]) or cohabitating/common-law (35.7% [SD, 26.4%]) compared with parents who were married (64.2% [SD, 34.2%]) or separated/divorced (68.3% [SD, 28.8%]) (p = 0.02). Percent of time with parental presence at the bedside was higher for children with chronic illnesses (63.4% [SD, 32.9%] vs 50.1% [SD, 35.8%] without; p = 0.04), when there was a bed in the patient room (61.4% [SD, 34.0%] vs 32.5% [SD, 28.3%] without; p = 0.01), and when parents slept in the patient room (90.3% [SD, 11.2%]) compared with their own home (37.6% [SD, 34.4%]) (p < 0.0001). Percent of time with parental presence at the bedside was not correlated with day of PICU stay, number of siblings, previous PICU admission, isolation status, or nursing ratio. Children had a parent present at the bedside approximately 60% of the time. The parents of younger, sicker children may benefit from supportive interventions during PICU admission. Further research is needed to examine both extrinsic and intrinsic factors affecting parental presence at the bedside.

The economic status of parents with serious mental illness in the United States.

PubMed

Luciano, Alison; Nicholson, Joanne; Meara, Ellen

2014-09-01

Parents with serious mental illness may be vulnerable to financial insecurity, making successful parenting especially difficult. We explored relationships among parenting, serious mental illness, and economic status in a nationally representative sample. The sample included all working-age participants from the 2009 and 2010 National Survey on Drug Use and Health (n = 77,326). Two well-established scales of mental health distinguished participants with none, mild, moderate, and serious mental illness. We compared economic status by parenthood status and mental illness severity. Rates of employment were low for parents with serious mental illness (38% full time and 17% part time among mothers; 60% full time and 9% part time among fathers) compared with parents with no mental illness (50% full time and 19% part time among mothers; 85% full time and 5% part time among fathers). Mothers and fathers with serious mental illness were twice as likely to fall below the U.S. Census poverty threshold as their peers without mental illness. Parents with serious mental illness are less likely to be employed than those without mental illnesses, and are highly likely to be living in poverty. Reducing poverty by helping parents with serious mental illness achieve better jobs and education is likely to translate into family stability and better outcomes. (PsycINFO Database Record (c) 2014 APA, all rights reserved).

Needs, expectations and consequences for children growing up in a family where the parent has a mental illness.

PubMed

Tabak, Izabela; Zabłocka-Żytka, Lidia; Ryan, Peter; Poma, Stefano Zanone; Joronen, Katja; Viganò, Giovanni; Simpson, Wendy; Paavilainen, Eija; Scherbaum, Norbert; Smith, Martin; Dawson, Ian

2016-08-01

The lack of pan-European guidelines for empowering children of parents with mental illness led to the EU project CAMILLE - Empowerment of Children and Adolescents of Mentally Ill Parents through Training of Professionals working with children and adolescents. The aim of this initial task in the project was to analyse needs, expectations and consequences for children with respect to living with a parent with mental illness from the perspective of professionals and family members. This qualitative research was conducted in England, Finland, Germany, Italy, Norway, Poland and Scotland with 96 professionals, parents with mental illness, adult children and partners of parents with mental illness. A framework analysis method was used. Results of the study highlighted that the main consequences described for children of parental mental illness were role reversal; emotional and behavioural problems; lack of parent's attention and stigma. The main needs of these children were described as emotional support, security and multidisciplinary help. Implications for practice are that professionals working with parents with mental illness should be aware of the specific consequences for the children and encourage parents in their parental role; multi-agency collaboration is necessary; schools should provide counselling and prevent stigma. © 2016 Australian College of Mental Health Nurses Inc.

Stress in mothers of young children with eczema

PubMed Central

Faught, Jamie; Bierl, Cynthia; Barton, Belinda; Kemp, Andrew

2007-01-01

Objective To assess parental stress levels of mothers of children less than 6 years old with eczema and compare these levels with those reported for other chronic childhood illnesses. Methods Mothers were recruited from hospital‐based out‐patient clinics (55%) or while their child was an in‐patient (45%) for management of eczema. Maternal stress was measured utilising the Parenting Stress Index‐Long Form (PSI) in 33 mothers. The severity of the eczema at the time of interview was documented by the Eczema Area and Severity Index (EASI) score and the Investigators' Global Assessment (IGA) score. Results The children with eczema had a mean age of 2.8 years. Mothers of children aged 5 years or less with eczema exhibited significantly higher total stress scores (mean PSI 259.6, 95% CI 244.9 to 274.3) as compared to mothers of normal children (PSI 222.8, 95% CI 221.4 to 224.2) and children with other chronic disorders such as insulin‐dependent diabetes (PSI 218.1, 95% CI 204.7 to 231.6) and profound deafness (PSI 221.7, 95% CI 206.4 to 237.0). Stress scores in the parental domain (138.2, 95% CI 128.9 to 147.6) did not differ significantly from the scores of parents of children with severe disabilities such as those requiring home enteral feeding (135.2, 95% CI 129.3 to 141.1) and those with Rett syndrome (132.8, 95% CI 125.0 to 140.6). Conclusions Moderate to severe childhood eczema should be regarded as a significant illness in which maternal stress is equivalent to that associated with the care of children with severe developmental and physical problems. PMID:17412743

Anxiety and stress in mothers of food-allergic children.

PubMed

Lau, Gar-Yen; Patel, Nisha; Umasunthar, Thisanayagam; Gore, Claudia; Warner, John O; Hanna, Heather; Phillips, Katherine; Zaki, Amirah Mohd; Hodes, Matthew; Boyle, Robert J

2014-05-01

Previous reports suggest that parents especially mothers of food-allergic children may have increased anxiety. Studies with an appropriate control group have not been undertaken, and the determinants of such anxiety are not known. We compared measures of anxiety and stress in mothers of food-allergic children and atopic non-food-allergic children, with anxiety and stress in mothers of children with no chronic illness. Cross-sectional study of mothers attending a hospital appointment for their 8- to 16-year-old child. Mothers of children with food allergy, asthma but no food allergy or no chronic illness completed questionnaires including State-Trait Anxiety Inventory, Perceived Stress Scale and measures of anxiety and psychologic adjustment in their child. Forty mothers of food-allergic children, 18 mothers of asthmatic children without food allergy and 38 mothers of children with no chronic illness (controls) were recruited. Mothers of food-allergic children showed increased state anxiety – median anxiety score 38.0 (IQR 30.0, 44.0) food allergy, 27.0 (22.0, 40.0) control p = 0.012; and increased stress – median stress score 18.5 (12.0, 22.0) food allergy, 14.0 (7.5, 19.5)control p = 0.035. No significant differences were seen between mothers in the asthmatic group and controls. In multivariate analysis, previous food anaphylaxis(p = 0.008) and poorly controlled asthma (p = 0.004) were associated with increased maternal anxiety. Child anxiety and adjustment did not differ between food-allergic and control groups. Mothers of food-allergic children have increased anxiety and stress compared with mothers of children with no chronic illness. Anaphylaxis and poorly controlled asthma are associated with maternal anxiety.

Anxiety and stress in mothers of food-allergic children.

PubMed

Lau, Gar-Yen; Patel, Nisha; Umasunthar, Thisanayagam; Gore, Claudia; Warner, John O; Hanna, Heather; Phillips, Katherine; Mohd Zaki, Amirah; Hodes, Matthew; Boyle, Robert J

2014-02-07

Previous reports suggest that parents especially mothers of food-allergic children may have increased anxiety. Studies with an appropriate control group have not been undertaken, and the determinants of such anxiety are not known. We compared measures of anxiety and stress in mothers of food-allergic children and atopic non-food-allergic children, with anxiety and stress in mothers of children with no chronic illness. Cross-sectional study of mothers attending a hospital appointment for their 8- to 16-year-old child. Mothers of children with food allergy, asthma but no food allergy or no chronic illness completed questionnaires including State-Trait Anxiety Inventory, Perceived Stress Scale and measures of anxiety and psychologic adjustment in their child. Forty mothers of food-allergic children, 18 mothers of asthmatic children without food allergy and 38 mothers of children with no chronic illness (controls) were recruited. Mothers of food-allergic children showed increased state anxiety - median anxiety score 38.0 (IQR 30.0, 44.0) food allergy, 27.0 (22.0, 40.0) control p = 0.012; and increased stress - median stress score 18.5 (12.0, 22.0) food allergy, 14.0 (7.5, 19.5) control p = 0.035. No significant differences were seen between mothers in the asthmatic group and controls. In multivariate analysis, previous food anaphylaxis (p = 0.008) and poorly controlled asthma (p = 0.004) were associated with increased maternal anxiety. Child anxiety and adjustment did not differ between food-allergic and control groups. Mothers of food-allergic children have increased anxiety and stress compared with mothers of children with no chronic illness. Anaphylaxis and poorly controlled asthma are associated with maternal anxiety. © 2014 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

[The situation of siblings of mentally ill people].

PubMed

Schmid, R; Spiessl, H; Cording, C

2005-12-01

The purpose of this article is to provide an overview of the current research regarding the situation of mentally ill persons. The relevant literature was identified by means of a computerized MEDLINE search on the years 1996 - 2004 with the key words "sibling" and "mentally ill"/"chronically ill"/"psychiatric disorder" (631 articles). Also the related articles in the MEDLINE search were viewed. Finally 170 articles of journals and books were included in the review. The situation of siblings of psychiatric ill has manifold aspects, which can be classified into the following categories: Burdens due to the relationship to the ill sibling, burdens because of the relations to the shared parents and other family members, and burdens in the daily life of the siblings due to the illness of his/her sibling. On the other side there are rewards and positive developments in their life because of the illness of the sibling. Personal variables like sex, family size and age at onset of the illness are an influence on the experience of the sibling. The revealed burdens of the affected siblings require necessary answers by political representatives, professionals in and outside a clinic, and the involved families.

[The needs of mentally ill parents--a review of the literature].

PubMed

Howard, Louise M; Underdown, Helen

2011-01-01

Approximately 10 % of women and 6 % of men who become parents will experience mental health problems and a significant proportion of these have a severe psychiatric illness. This paper provides a literature review of the needs of parents with severe mental illness. Literature review. Mothers with severe mental illness have a wide range of complex health and social care needs in addition to their parenting needs, which must be addressed by services in pregnancy and postpartum to optimise outcomes. There is limited evidence on the needs of fathers with severe mental illness but they may have a greater number of needs than women, and a greater need for training in parenting skills than women suffering from severe mental illness. Parents with severe mental illness may experience stigma and discrimination, and fear accessing services due to fears of losing custody of their child. Although a significant proportion of parents with severe mental illness do lose custody, many can successfully parent if adequate support is available and needs are assessed and managed by a multi-disciplinary team. © Georg Thieme Verlag KG Stuttgart · New York.

Contingent interaction during work and play tasks for mothers with multiple sclerosis and their daughters.

PubMed

Crist, P

1993-02-01

Occupational therapy has focused on activity as a catalyst for understanding human roles and interactions, regardless of whether disability or chronic illness is present. Parenting is an important interactional activity accompanied by specific role expectations. This investigation examined the interaction patterns of mothers with multiple sclerosis and their daughters. Thirty-one mothers with multiple sclerosis and their daughters aged 8 to 12 years were compared with 34 mothers without disabilities and their daughters aged 8 to 12 years. Videotaped mother-daughter interactions during a work task and a play task were scored by two raters for 11 different behaviors. These behaviors were collapsed into three behavioral composites--receptiveness, directiveness, and dissuasiveness--for statistical analysis. Statistical analysis revealed no significant differences between the two groups on the behavioral composites for either mothers or their daughters. The two tasks stimulated a different pattern of mother-daughter interactions. For both members of the dyad, interactions during the work task were more directive and less dissuasive than those in the play task. The clinical implication of this finding indicates the importance of understanding the influence of the task selected when observing interaction. Because of recent social and legal changes, understanding parenting and chronic illness is critical.

Linking Illness in Parents to Health Anxiety in Offspring: Do Beliefs about Health Play a Role?

PubMed

Alberts, Nicole M; Hadjistavropoulos, Heather D; Sherry, Simon B; Stewart, Sherry H

2016-01-01

The cognitive behavioural (CB) model of health anxiety proposes parental illness leads to elevated health anxiety in offspring by promoting the acquisition of specific health beliefs (e.g. overestimation of the likelihood of illness). Our study tested this central tenet of the CB model. Participants were 444 emerging adults (18-25-years-old) who completed online measures and were categorized into those with healthy parents (n = 328) or seriously ill parents (n = 116). Small (d = .21), but significant, elevations in health anxiety, and small to medium (d = .40) elevations in beliefs about the likelihood of illness were found among those with ill vs. healthy parents. Mediation analyses indicated the relationship between parental illness and health anxiety was mediated by beliefs regarding the likelihood of future illness. Our study incrementally advances knowledge by testing and supporting a central proposition of the CB model. The findings add further specificity to the CB model by highlighting the importance of a specific health belief as a central contributor to health anxiety among offspring with a history of serious parental illness.

Agreement between children and parents demonstrated that illness-related absenteeism was validly reported by children.

PubMed

Denbæk, Anne Maj; Bonnesen, Camilla Thørring; Andersen, Anette; Holstein, Bjørn Evald; Laursen, Bjarne; Due, Pernille; Johansen, Anette

2016-01-01

To examine the agreement between children's and parents' reporting of illness-related absenteeism from school and to examine predictors for disagreement between children and parents. A total of 8,438 schoolchildren aged from 5 to 15 years (grade 0-8) and one parent of each child were invited to participate in the Hi Five baseline study. The response rate for children answering a questionnaire was 89% (n = 7,525), and 36% of the parents (n = 3,008) participated in a weekly illness registration study using text messages (short message service) over a period of 22 weeks. Text messages and questionnaire data were linked at the individual level, leaving 2,269 child-parent pairs in the analysis, corresponding to 27% of the eligible sample. The agreement between children's and parents' reports of illness-related absenteeism was good, with high absolute agreement and slight to moderate Ƙ values. Agreement was lowest for 6- to 8-year-olds and highest for 11- to 12-year-olds. Children's reports of illness symptoms and parents' reports of their children's illnesses in the preceding week were strong predictors for children reporting illness-related absenteeism when parents did not. Illness-related absenteeism can be reported by children, and children report higher prevalence of illness-related absenteeism than parents. Copyright © 2016 Elsevier Inc. All rights reserved.

Ill and substance-abusing parents: how can the general practitioner help their children? A qualitative study.

PubMed

Gullbrå, Frøydis; Smith-Sivertsen, Tone; Rortveit, Guri; Anderssen, Norman; Hafting, Marit

2016-11-08

Severe illness among parents may interfere with their parenting. Children having ill or substance-abusing parents are at risk of own health problems and psychosocial difficulties. The health care system should identify families in need of help and provide the help needed. For ill parents, it can be difficult to seek help and advices for their parenting. The aim of this study was to identify important factors for the general practitioner (GP) to bear in mind during encounters with ill and substance-abusing parents, to enable the GP to provide appropriate support for the children. A qualitative approach was chosen and the data material was semi-structured individual interviews with 12 parents with mental illness, substance abuse or severe somatic illness. The participants were recruited through GPs in Norway, and the interviews were performed in 2014. We used systematic text condensation for analysis. It was important for the participants that the GP was oriented about their family and children's situation. They wanted to be regarded as competent parents in ordinary families; however, they were aware that their illness affected their parenting. They expressed a need for advice about how to inform the children of their illness and talk to them about their challenges, and, if necessary, utilize helpers who could inform the children and talk to them directly. There were often many agencies involved, and it was important that the helpers cooperated and shared information. In addition, the parents were in need of information about support services. Ill parents in this study conveyed a double message to their helpers. They wanted to be considered as responsible and well-intended parents who wished the best for their children. At the same time they needed support in parenting. The GP should take the time to listen to the parents' first spontaneous description about an ordinary daily life (while realising that it may not necessarily be an accurate report), then explore their worries and needs of support.

A Dynamic Cycle of Familial Mental Illness.

PubMed

Murphy, Gillian; Peters, Kathleen; Wilkes, Lesley; Jackson, Debra

2014-12-01

In this paper, we present A Dynamic Cycle of Familial Mental Illness; an innovative framework, which considers family members' experiences and responses to mental illness. There is an acknowledged discourse noting parental experiences of mental illness alongside a growing body of knowledge acknowledging children's needs while living with parental mental illness. However, there is a paucity of literature that makes reference to the concept of familial mental illness and the cyclic interface of parental and child distress and symptoms. The model is supported by published research studies from several differing disciplines to demonstrate the relationship between parent and child experiences and to synthesise the published short- and longer-term possible impact of familial mental illness. An extensive search of the literature using recognised search engines, keywords and phrases has been undertaken, to generate an appropriate literature base for this work. This literature demonstrates how a child's possible emotional distancing as a response to parental mental illness could increase parental distress. A Dynamic Cycle of Familial Mental Illness adopts the underpinning philosophy of a Stress Vulnerability Model of Mental Illness, which assumes that predisposing factors and increased stress for a parent may have possible links to exacerbation of parental mental distress and symptomology. We advocate for further research of familial mental illness, and argue for a family approach to mental health assessment and treatment in mainstream health and social care sectors.

Parent and child asthma illness representations: a systematic review.

PubMed

Sonney, Jennifer T; Gerald, Lynn B; Insel, Kathleen C

2016-06-01

The purpose of this article is to synthesize the current literature on parent and child asthma illness representations and their consequent impact on parent-child asthma shared management. This systematic review was conducted in concordance with the PRISMA statement. An electronic search of five computerized databases (PubMed, PsycINFO, CINAHL, Cochrane, and EMBASE) was conducted using the following key words: asthma, illness representation, and child. Due to the limited number of articles identified, the search was broadened to include illness perceptions as well. Studies were included if they were specific to asthma and included parent and/or child asthma illness representations or perception, were published after 2000, and available in English. Fifteen articles were selected for inclusion. All of the articles are descriptive studies that used cross-sectional designs. Seven of the studies used parent and child participants, eight used parents only, and none used only child participants. None of the selected studies describe child asthma illness representations, and only three describe parental asthma illness representations. Domains of illness representations, including symptoms, timeline, consequences, cause, and controllability were described in the remaining articles. Symptoms and controllability appear to have the most influence on parental asthma management practices. Parents prefer symptomatic or intermittent asthma management and frequently cite concerns regarding daily controller medication use. Parents also primarily rely on their own objective symptom observations rather than the child's report of symptoms. Asthma illness representations are an important area of future study to better understand parent-child shared asthma management.

Adult children of parents with mental illness: Dehumanization of a parent - 'She wasn't the wreck in those years that she was to become later'.

PubMed

Murphy, Gillian; Peters, Kath; Wilkes, Lesley; Jackson, Debra

2018-06-01

Children who have lived with parental mental illness experience long-standing reduced health and social outcomes, alongside ongoing personal distress. While there has been some dialogue regarding interventions to support children who are living with parental mental illness, there remains a paucity of knowledge regarding adult children's experiences and potential needs. Given this, the aim of the present study was to establish parenting narratives of adult children who had experienced childhood parental mental illness. This included their experiences of being parented alongside their own subsequent parenting roles. Three men and 10 women, ranging from 30 to 78 years old, met individually with a researcher to tell their stories. Narratives were thematically analysed to establish themes. The findings of the study demonstrated that individuals who have lived with childhood parental mental illness dehumanized their parent with mental illness. The authors argue that all mental health services should be underpinned with a whole of family assessment and care philosophy. There is also a need for all mental health services to consider how policies and procedures might inadvertently dehumanize clients who are parents, which could contribute to familial dehumanization. This could prevent the dehumanization of parents who experience mental illness to preserve parental and child relationships. © 2017 Australian College of Mental Health Nurses Inc.

Communication and support from health-care professionals to families, with dependent children, following the diagnosis of parental life-limiting illness: A systematic review

PubMed Central

Fearnley, Rachel; Boland, Jason W.

2016-01-01

Background: Communication between parents and their children about parental life-limiting illness is stressful. Parents want support from health-care professionals; however, the extent of this support is not known. Awareness of family’s needs would help ensure appropriate support. Aim: To find the current literature exploring (1) how parents with a life-limiting illness, who have dependent children, perceive health-care professionals’ communication with them about the illness, diagnosis and treatments, including how social, practical and emotional support is offered to them and (2) how this contributes to the parents’ feelings of supporting their children. Design: A systematic literature review and narrative synthesis. Data sources: Embase, MEDLINE, PsycINFO, CINAHL and ASSIA ProQuest were searched in November 2015 for studies assessing communication between health-care professionals and parents about how to talk with their children about the parent’s illness. Results: There were 1342 records identified, five qualitative studies met the inclusion criteria (55 ill parents, 11 spouses/carers, 26 children and 16 health-care professionals). Parents wanted information from health-care professionals about how to talk to their children about the illness; this was not routinely offered. Children also want to talk with a health-care professional about their parents’ illness. Health-care professionals are concerned that conversations with parents and their children will be too difficult and time-consuming. Conclusion: Parents with a life-limiting illness want support from their health-care professionals about how to communicate with their children about the illness. Their children look to health-care professionals for information about their parent’s illness. Health-care professionals, have an important role but appear reluctant to address these concerns because of fears of insufficient time and expertise. PMID:27383635

[How do mentally ill parents evaluate their children's quality of life? Associations with the parent's illness and family functioning].

PubMed

Pollak, Eva; Bullinger, Monika; Jeske, Jana; Wiegand-Grefe, Silke

2008-01-01

To assess health-related quality of life (hrQoL) of children with a mentally ill parent, and its associations with the parent's illness (diagnoses, severity of disease, current symptoms) and family functioning, 51 mentally ill parents rated their children's hrQoL using the KINDL-R, a multidimensional hrQoL questionnaire for children. Parents rated their current psychiatric symptoms on the SCL-14 (Symptom Checklist-14) and family functioning on the FB-A ("Familienbögen"). The parents' therapists (psychologists or psychiatrists) provided psychiatric diagnoses as well as global ratings of disease severity (CGI) and patient's family functioning. Compared to the general population, parents rated their children's hrQoL significantly lower concerning the dimensions "Psychological Well-Being" and "Family': HrQoL ratings were moderately correlated with the parent's current depressive symptoms and moderately to highly correlated with family functioning from the parent's perspective. Lower depression severity and higher family functioning were associated with higher hrQoL ratings. Parents with affective disorders rated their children's hrQoL significantly lower than did parents with a diagnosis of substance abuse. Results show the importance of family functioning for parents' view of children's hrQoL and the influence of psychiatric symptoms on ill parents' reports. These findings are in line with previous results concerning potential psychological and behavioural problems in children of mentally ill parents. Family interventions and multi-informant assessment should be used in this high-risk group.

Absenteeism, educational plans, and anxiety among children with incontinence and their parents.

PubMed

Filce, Hollie G; LaVergne, Leslie

2015-04-01

Children with incontinence have more absenteeism, poorer academic performance, and potential social difficulties during the school years. These children and their parents are at risk for illness-related anxiety. Whereas educational plans are designed to remediate educational, medical, and social-emotional barriers at school, little research has explored the relationship among absenteeism, educational plans, and anxiety for this population. Eighty-three families provided demographic information and completed either the Revised Children's Manifest Anxiety Scale Second Edition (RCMAS-2) or the Adult Manifest Anxiety Scale (AMAS-A). A multiple regression analysis was conducted to determine the relationships among these variables. Children with chronic illness resulting in incontinence had greater than expected rates of absenteeism. A high level of absenteeism was a significant predictor of parental anxiety, but not child anxiety. Over one third reported having no plan in place to support the child's needs at school. However, when a plan was present, it had no impact on child or parental anxiety. Absenteeism contributes to familial anxiety and educational difficulties. Despite the potential for educational plans to support these children at school, these plans are underutilized for children with incontinence. This population requires more attention to their academic and social-emotional well-being at school. © 2015, American School Health Association.

Construct Validity and Responsiveness of the Pediatric Quality of Life Inventory 4.0 Generic Core Scales and Infant Scales in the PICU.

PubMed

Aspesberro, François; Fesinmeyer, Megan D; Zhou, Chuan; Zimmerman, Jerry J; Mangione-Smith, Rita

2016-06-01

To assess the construct validity and the responsiveness of the Pediatric Quality of Life Inventory 4.0 Generic Core Scales and Infant Scales in the medical-surgical (PICU) and cardiac PICU. Prospective cohort study of 367 inpatients admitted either to the PICU or the cardiac ICU at Seattle Children's Hospital from January 2012 to June 2013. Parent/caregiver and child (≥ 8 yr old, developmentally appropriate, and critical illness resolved) Pediatric Quality of Life Inventory scores were obtained within 24 hours of PICU/cardiac ICU discharge and subsequently at 4-12 weeks following hospital discharge. Of the 491 eligible participants invited to participate, 367 (74.7% response rate) completed the Pediatric Quality of Life Inventory survey at ICU discharge, and of these, 263 (71.7% follow-up response rate) completed the follow-up survey 4-12 weeks after hospital discharge. Responsiveness was assessed by calculating improvement scores (difference between follow-up and ICU discharge scores, Δ Pediatric Quality of Life Inventory). Construct validity was examined by comparing mean improvement scores for known groups differing by medical complexity. At follow-up, [INCREMENT] Pediatric Quality of Life Inventory scores were as follows (mean ± SD): physical domain, 34.8 ± 32.0; and psychosocial domain, 23.1 ± 23.5. Patients with complex chronic or noncomplex chronic disease had physical functioning improvement scores that were 17.4 points (95% CI, -28.3 to -6.5; p < 0.001) and 19.5 points (95% CI, -30.4 to -8.5; p < 0.002) lower than children with no chronic illness, respectively. Patients with complex chronic disease exhibited psychosocial improvement scores that were 9.6 points (95% CI, -18.4 to -0.8; p < 0.033) lower than patients without chronic disease. Patients with noncomplex chronic disease had similar psychosocial improvement scores when compared with patients without chronic disease. As a measure of health-related quality of live, Pediatric Quality of Life Inventory demonstrated responsiveness and construct validity in a broad population of critically ill children. This measure represents a patient-centered clinically meaningful patient-or-parent-reported outcome measure for pediatric research assessing the clinical effectiveness of PICU/cardiac ICU interventions. When using health-related quality of life recovery as an outcome measure to assess clinical effectiveness in the PICU/cardiac ICU setting, measuring and controlling for the level of medical complexity is important in order to understand the true impact of clinical interventions.

Children's and young people's experiences of a parent's critical illness and admission to the intensive care unit: A qualitative meta-synthesis.

PubMed

MacEachnie, Lise H; Larsen, Hanne B; Egerod, Ingrid

2018-04-27

Little is known about how children and young people experience and manage the critical illness of a parent and a parent's admission to the intensive care unit (ICU). The aim of this study was to search and interpret the existing literature describing children's and young people's experiences of a parent's illness trajectory in the ICU. A qualitative meta-synthesis was conducted based on a systematic literature search of online databases. Four main themes were identified and synthesised to describe the integrated experiences of children and young people: (a) the parent-child bond, (b) the unfamiliar environment, (c) the impact of the illness and (d) the experience of being overseen as close family members. Experiencing a parent's critical illness and admittance to the ICU is overwhelming. The bond between the parent and child is exposed by the separation from the ill parent. To comprehend and manage the experience, children and young people seek information depending on their individual capacities. They express a need to be close to their ill parent and to be seen and approached as close members of the family. However, children experience being overseen in their needs for support during their parent's ICU illness with the risk of being left in loneliness, sadness and lack of understanding of the parent's illness. Children and young people as relatives need to be acknowledged as close members of the family, when facing the illness trajectory of a parent, who is admitted to the ICU. They need to be seen as close family members and to be approached in their needs for support in order to promote their well-being during a family illness crisis. Early supportive interventions tailored to include children of the intensive care patient are recommended. © 2018 John Wiley & Sons Ltd.

A narrative literature review regarding job retention strategies for people with chronic illnesses.

PubMed

Koch, Lynn C; Rumrill, Phillip D; Conyers, Liza; Wohlford, Sarah

2013-01-01

Job retention is a major concern for individuals with chronic illnesses, who represent a rapidly growing vocational rehabilitation (VR) consumer population. The purpose of this article is to examine selected job retention considerations for consumers with chronic illnesses. The authors (a) describe distinguishing characteristics of chronic illnesses in terms of populations affected and psychosocial implications, (b) discuss the vocational implications of chronic illnesses, (c) provide general considerations for the provision of job retention services, and (d) examine job retention strategies aimed at improving employment outcomes for individuals with chronic illnesses.

Peaceful play yoga: serenity and balance for children with cancer and their parents.

PubMed

Thygeson, Megan V; Hooke, Mary C; Clapsaddle, Jeanine; Robbins, Angela; Moquist, Kristin

2010-01-01

Children with a cancer diagnosis experience symptom distress, including anxiety, because of the disease and its treatment. Parents experience stress and anxiety because of the uncertainty of the disease as well as the suffering of their children. Yoga is a complementary intervention that has physiological and psychological benefits in healthy children and healthy and chronically ill adults. On an inpatient hematology/oncology unit, 11 children aged 6 to 12 years, 5 adolescents aged 13 to 18 years, and 33 parents participated in a single yoga session tailored to the needs and abilities of the patients and parents. Sense of well-being pre- and postclass was measured with the Spielberger State Anxiety Scale. Children had normal anxiety scores preclass that did not change. Adolescents and parents experienced significant decreases in anxiety scores, and all cohorts gave positive feedback about the experience. The authors conclude that yoga is a feasible intervention for this population and is beneficial to adolescents and parents.

The children of mentally ill parents.

PubMed

Mattejat, Fritz; Remschmidt, Helmut

2008-06-01

The children of mentally ill parents have a higher risk of developing mental illnesses themselves over the course of their lives. This known risk must be taken into account in the practical provision of health care. Selective literature review. The increased psychiatric risk for children of mentally ill parents is due partly to genetic influences and partly to an impairment of the parent-child interaction because of the parent's illness. Furthermore, adverse factors are more frequent in these families, as well as a higher risk for child abuse. Genetic and psychosocial factors interact with one another. For example, genetic factors moderate environmental effects; that is, the effect of adverse environmental factors depends on the genetic substrate. Preventive measures for children of mentally ill parents urgently need improvement. In this article, positively evaluated programs of preventive measures are discussed. Essential prerequisites for success include appropriate, specialized treatment of the parental illness, psychoeducative measures, and special support (e.g. self-help groups) as indicated by the family's particular needs.

Prevalence of serious mental illness among parents in the United States: results from the National Survey of Drug Use and Health, 2008-2014.

PubMed

Stambaugh, Leyla F; Forman-Hoffman, Valerie; Williams, Jason; Pemberton, Michael R; Ringeisen, Heather; Hedden, Sarra L; Bose, Jonaki

2017-03-01

This brief research report presents findings from a US national household survey on the number and percentage of parents with mental illness. Using combined annual data from the 2008-2014 National Survey on Drug Use and Health, parents were defined as having children in the household from birth to 18 years. Prediction models developed in an earlier clinical study using a National Survey on Drug Use and Health subsample were used to estimate serious mental illness (SMI). A total of 2.7 million parents (3.8%) had a SMI in the past year and 12.8 million parents (18.2%) had any mental illness in the past year. Mental illness was more common among mothers than fathers and least common among Asians compared with other races. SMI was less prevalent in parents who were aged 50 years and older compared with younger age groups. The burden of mental illness in parents is high in the United States, especially among mothers. Physicians who treat parents should routinely screen for mental illness and discuss its implications for parenting. Copyright © 2016 Elsevier Inc. All rights reserved.

A comparison of doctors', parents' and children's reports of health states and health-related quality of life in children with chronic conditions.

PubMed

Morrow, A M; Hayen, A; Quine, S; Scheinberg, A; Craig, J C

2012-03-01

Health-related quality of life is an important outcome. Self-report is the gold standard, but in the paediatric setting we often rely on proxy reporting. Our understanding of the differences between self- and proxy reports and the factors that influence them is limited. These differences can impact on treatment choices and the patient-doctor relationship. To evaluate differences between children's, parents' and doctors' perceptions of health states and health-related quality of life in children with chronic illness and explore factors which explain these differences. Consecutive families attending eligible clinics at a tertiary paediatric centre were invited to complete the Health Utilities Index (HUI) 23 questionnaire. Percentage agreement and kappas were calculated as a measure of the agreement between pairs. Chi-squared tests or Fisher's exact test, if appropriate, were performed to determine if there was an association between level of agreement and participant variables. Data were collected for 130 parent-doctor pairs, 59 child-parent pairs and 59 child-doctor pairs. Overall health-related quality of life scores did not differ between responders, but there was poorer agreement for subjective domains. Doctor-child agreement was lower than parent-child agreement. Children with a diagnosis of cerebral palsy or chronic neurological condition were more likely to have lower inter-rater agreement for both subjective and objective domains. On the HUI2, agreement was lower for parent-child pairs when the father was the respondent. For child-doctor pairs, an increased frequency of patient-doctor visits and doctors' seniority were predictors of poorer agreement on the HUI3 and HUI2 respectively. We identified factors associated with level of agreement for self- and proxy reporting on the HUI23. Parent-child agreement was higher than doctor-child agreement. Patients with significant pain or emotional distress and patients with a diagnosis of severe cerebral palsy or chronic neurological conditions were more susceptible to under-reporting of subjective aspects of well-being by doctors and parents and may benefit from formal assessment of health-related quality of life in the clinical setting. © 2011 Blackwell Publishing Ltd.

[Do Attachment Styles of Mentally Ill Parents Impact on the Health-related Quality of Life of their Children?].

PubMed

Wiegand-Grefe, Silke; Bomba, Franziska; Tönnies, Sven; Bullinger, Monika; Plass, Angela

2016-01-01

Do Attachment Styles of Mentally Ill Parents Impact on the Health-related Quality of Life of their Children? Parents with a mental disorder often display a problematic attachment style which may impact on their children's health related quality of life (HrQoL). The current study cross-sectionally examines attachment styles (BEPE) in mentally ill parents with underage children (n = 62) and the effect of attachment on their children's HrQoL (KINDL-R). Results show that secure attachment is less represented in parents with a mental health condition than in a healthy reference group. Within the clinical sample, children of mentally ill parents with a secure attachment style exhibit a higher HrQoL than children of mentally ill parents with ambivalent or avoidant attachment styles. These findings indicate not only that problematic attachment styles frequently occur in families with a mentally ill parent, but also suggest that this negatively affects the children's HrQoL. Appropriate interventions should include attachment oriented concepts.

Communication preferences of chronically ill adolescents: development of an assessment instrument.

PubMed

Klosinski, Matthias G; Farin, Erik

2015-09-01

The purpose of this study was to develop and psychometrically test a patient-oriented, theory-based questionnaire to capture the communication preferences of chronically ill adolescents in provider-patient interaction. In a qualitative prestudy, patients were asked to express their preferences in focus groups. From those results and relying on previous research findings, we generated questionnaire items and in a second pretest, examined them in 1-to-1 cognitive interviews for comprehensibility and acceptance. The resultant questionnaire was then psychometrically tested in the main study on 423 chronically ill inpatient adolescents aged 12 to 17 years in 14 rehabilitation clinics in Germany. Numerous preferences were extractable from the focus-group interviews and transferred into 106 Items. Psychometric testing of the questionnaire resulted in 3 scales encompassing 27 items. These we describe as the emotional-affective communication component (EAC), instrumental communication component (IC), and adolescent-specific communication component (ASC). Confirmatory factor analysis revealed the scales EAC und IC to be good to very good, and the ASC scale as satisfactory regarding unidimensionality. The participants gave the questionnaire high marks for comprehensibility, acceptance, and relevance. The 3 scales' Cronbach's alpha falls between .78 and .92. A questionnaire with 27 items is now available for application as a psychometrically tested and simple-to-use measuring instrument. Research is still needed concerning the generalizability to other patient groups (e.g., the acutely ill or outpatients) and whether it can be tailored for use by different types of care providers or to accommodate the communication preferences of parents. (c) 2015 APA, all rights reserved.

Disease-related social situation in family of children with chronic kidney disease--parents` assessment. A multicentre study.

PubMed

Kiliś-Pstrusińska, Katarzyna; Medyńska, Anna; Adamczyk, Piotr; Bałasz-Chmielewska, Irena; Grenda, Ryszard; Kluska-Jóźwiak, Agnieszka; Leszczyńska, Beata; Olszak-Szot, Ilona; Miklaszewska, Monika; Szczepańska, Maria; Tkaczyk, Marcin; Wasilewska, Anna; Zachwieja, Katarzyna; Zajączkowska, Maria; Ziółkowska, Helena; Zagożdżon, Ilona; Zwolińska, Danuta

2014-01-01

Chronic kidney disease (CKD) in children burdens life of patients and their families. Little is known about parents` assessment of families' social situation. However, the knowledge of the details of a patient's and his family's life standards might influence modification and optimization of applied therapy. Therefore, the main goal of the present study was to explore the selected elements of life situation of patients suffering with CKD as well as their parents, depending on the CKD stage and appropriate treatment. Cross-sectional national study was conducted. A total of 203 children with CKD and 388 their parent-proxies (196 women and 192 men) were enrolled into this study. Patient data and questionnaires filled by both parents, concerning social-demographic parameters and assessment of changes in families after CKD diagnosis in the child, were analysed. CKD children are being brought up in proper families whose financial situation is not good. Children need help in process of education. Perception of current situation differed between both parents in the change of the income source, taking care of CKD child, change in social relations and evaluating relations with medical staff. Parents do not obtain proper support from social workers. Families of CKD children require support in area of financial and educational help for school children. The discrepancies in evaluation of family situation between mothers and fathers of ill children might be the source of conflicts possibly resulting in worsening the outcome for CKD children.

Illness uncertainty and illness intrusiveness as predictors of depressive and anxious symptomology in college students with chronic illnesses.

PubMed

Mullins, Alexandria J; Gamwell, Kaitlyn L; Sharkey, Christina M; Bakula, Dana M; Tackett, Alayna P; Suorsa, Kristina I; Chaney, John M; Mullins, Larry L

2017-07-01

To examine predictors of psychological functioning in college students with chronic illnesses. Participants (N = 1413) included 364 students with self-reported diagnoses of asthma or allergies, 148 students with other chronic illnesses (eg, epilepsy, type 1 diabetes), and 901 healthy students. Data were collected between November 2013 and May 2015. Participants completed online measures of psychosocial functioning, including illness uncertainty, illness intrusiveness, depression, and anxiety. Students with chronic illnesses other than asthma or allergies evidenced the greatest levels of anxious (p <. 05), but not depressive symptomology. Additionally, this group reported greater illness uncertainty and intrusiveness (p <. 05) compared to their peers. Uncertainty and intrusiveness independently predicted depressive and anxious symptoms for students in both illness groups. Compared to peers with asthma or allergies, college students with other chronic illnesses reported higher levels of anxious symptoms. Illness uncertainty and intrusiveness appear to be predictors of psychological distress, regardless of illness.

Illness cognitions and family adjustment: psychometric properties of the Illness Cognition Questionnaire for parents of a child with cancer.

PubMed

Sint Nicolaas, Simone M; Schepers, Sasja A; van den Bergh, Esther M M; Evers, Andrea W M; Hoogerbrugge, Peter M; Grootenhuis, Martha A; Verhaak, Christianne M

2016-02-01

Illness cognitions are an important mediator between disease and psychological adjustment. This study assessed the psychometric properties of the Illness Cognition Questionnaire (ICQ), adjusted for the parents of an ill child. Participants were recruited from two multicenter studies: sample 1 included 128 parents of a child diagnosed with acute lymphoblastic leukemia (ALL) (response rate 82 %) and sample 2 included 114 parents of a child diagnosed with cancer (response rate 74 %). Parents completed an adapted version of the ICQ (Illness Cognition Questionnaire-Parent version (ICQ-P)), together with the Profile of Mood States (POMS; sample 1) or the Hospital Anxiety and Depression Scale (HADS; sample 2). The factor structure of the ICQ-P was examined by means of principal component analysis. Cronbach's alpha for each subscale and correlations between the ICQ-P scales and the HADS and POMS were calculated. The illness cognitions of parents with and without psychological distress were compared. Factor analysis confirmed the hypothesized structure of the ICQ-P in our sample (n = 242). The three scales Helplessness, Acceptance, and Perceived Benefits explained 9.8, 31.4, and 17.9 % of the variance, respectively. Cronbach's alpha showed adequate internal consistency (.80-.88). Concurrent and criterion-related validity were appropriate. The results confirm that the ICQ-P reliably assesses the illness cognitions of the parents of a child with cancer. Psychologically distressed parents showed less acceptance and more helplessness. The availability of a short and valid illness cognition questionnaire will help clinicians gain insight into parental cognitions regarding the illness of their child, information that might be helpful for targeting interventions.

Why do parents use the emergency department for minor injury and illness? A cross-sectional questionnaire.

PubMed

Ogilvie, Sarah; Hopgood, Katie; Higginson, Ian; Ives, Andrew; Smith, Jason E

2016-03-01

To understand decision-making when bringing a child to an emergency department. A cross-sectional survey of parents attending with children allocated a minor triage category. Emergency department in South West England, serving 450,000 people per annum. All English-speaking parents/caregivers whose children attended the emergency department and were triaged as minor injury/illness. Parental and child characteristics, injury/illness characteristics, advice seeking behaviour, views regarding emergency department service improvement, GP access and determinants of emergency department use. In sum, 373 responses were analysed. The majority of attendances were for minor injury, although illness was more common in <4 year olds. Most presentations were within 4 h of injury/illness and parents typically sought advice before attending. Younger parents reported feeling more stressed. Parents of younger children perceived the injury/illness to be more serious, reporting greater levels of worry, stress, helplessness and upset and less confidence. Parents educated to a higher level were more likely to administer first-aid/medication. Around 40% did not seek advice prior to attending and typically these were parents aged <24 and parents of <1 year olds. The main determinants of use were: advised by someone other than a GP; perceived urgency; perceived appropriateness. The need for reassurance also featured. The findings suggest that it is difficult for parents to determine whether their child's symptoms reflect minor conditions. Efforts should focus on building parental confidence and self-help and be directed at parents of younger children and younger parents. This is in addition to appropriate minor injury/illness assessment and treatment services.

The Silent Parent: Developing Knowledge about the Experiences of Parents with Mental Illness

ERIC Educational Resources Information Center

Boursnell, Melanie

2007-01-01

This paper explores the lived experiences of parents with mental illness in Australia. It draws on in-depth interviews with parents (n = 10) who have mental illness and provides an analysis of national mental health policies. The analysis of the parents' narratives is essential in building a picture for those involved in the issues associated with…

Perceived quality of chronic illness care is associated with self-management: Results of a nationwide study in the Netherlands.

PubMed

van Houtum, L; Heijmans, M; Rijken, M; Groenewegen, P

2016-04-01

Healthcare providers are increasingly expected to help chronically ill patients understand their own central role in managing their illness. The aim of this study was to determine whether experiencing high-quality chronic illness care and having a nurse involved in their care relate to chronically ill people's self-management. Survey data from 699 people diagnosed with chronic diseases who participated in a nationwide Dutch panel-study were analysed using linear regression analysis, to estimate the association between chronic illness care and various aspects of patients' self-management, while controlling for their socio-demographic and illness characteristics. Chronically ill patients reported that the care they received was of high quality to some extent. Patients who had contact with a practise nurse or specialised nurse perceived the quality of the care they received as better than patients who only had contact with a GP or medical specialist. Patients' perceptions of the quality of care were positively related to all aspects of their self-management, whereas contact with a practise nurse or specialised nurse in itself was not. Chronically ill patients who have the experience to receive high-quality chronic illness care that focusses on patient activation, decision support, goal setting, problem solving, and coordination of care are better self-managers. Having a nurse involved in their care seems to be positively valued by chronically ill patients, but does not automatically imply better self-management. Copyright © 2016. Published by Elsevier Ireland Ltd.

The experiences of youth serving as caregivers for mentally ill parents: a background review of the literature.

PubMed

Mechling, Brandy M

2011-03-01

Young caregivers of mentally ill parents are a vulnerable population. These vulnerabilities include risks for developmental issues, poor socialization, and poor school performance. The purpose of this background review of the literature is to explore the experiences of young caregivers of mentally ill parents and detect the gaps in the literature. The guiding research questions were: What is the experience of young caregivers of mentally ill parents? and What is the experience for those who witness or must assist their parent during a crisis? The majority of research has been conducted outside the United States, primarily in the United Kingdom, and studies have focused mostly on young caregivers of parents with physical rather than mental illness. No studies focused on young caregivers who witnessed or assisted their mentally ill parent in crisis. Information gained through this review will add to the body of knowledge for child mental health and build a case for additional research. Copyright 2011, SLACK Incorporated.

Parent Perceptions of Illness Uncertainty and Child Depressive Symptoms in Juvenile Rheumatic Diseases: Examining Caregiver Demand and Parent Distress as Mediators.

PubMed

Chaney, John M; Gamwell, Kaitlyn L; Baraldi, Amanda N; Ramsey, Rachelle R; Cushing, Christopher C; Mullins, Alexandria J; Gillaspy, Stephen R; Jarvis, James N; Mullins, Larry L

2016-10-01

Examine caregiver demand and general parent distress as mediators in the parent illness uncertainty-child depressive symptom association in youth with juvenile rheumatic diseases. Children and adolescents completed the Child Depression Inventory; caregivers completed the Parent Perceptions of Uncertainty Scale, the Care for My Child with Rheumatic Disease Scale, and the Brief Symptom Inventory. The pediatric rheumatologist provided ratings of clinical disease status. Analyses revealed significant direct associations between illness uncertainty and caregiver demand, and between caregiver demand and both parent distress and child depressive symptoms. Results also revealed significant parent uncertainty → caregiver demand → parent distress and parent uncertainty → caregiver demand → child depressive symptom indirect paths. Results highlight the role of illness appraisals in adjustment to juvenile rheumatic diseases, and provide preliminary evidence that parent appraisals of illness uncertainty impact parent distress and child depressive symptoms indirectly through increased perceptions of caregiver demand. © The Author 2016. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Growing pains: understanding the needs of emerging adults with chronic pain

PubMed Central

Twiddy, Hannah; Hanna, Julie; Haynes, Louise

2017-01-01

Background: Emerging adulthood (18–30 years), in the Western world, is often a time of identity development and exploration, focusing on areas of work, relationships and education. Individuals with chronic illnesses, such as chronic pain, may be more vulnerable to facing challenges during this time. This study aims to investigate the needs of young adults (YAs) attending a tertiary level National Health Service (NHS) Pain Management Programme (PMP) Service in the United Kingdom; exploring how these needs may translate on to clinical assessment and the delivery of rehabilitation interventions. Method: This is a descriptive qualitative study influenced by phenomenological approaches. YA with a diagnosis of chronic pain were recruited and assigned to one of four focus groups facilitated by a clinical psychologist and occupational therapist. A semi-structured interview guide was used to help facilitate the group discussion. Results: Qualitative analysis identified four key themes in understanding the needs of YAs with chronic pain: (1) thwarted opportunities, (2) peer separation, (3) perceived illness validity in the context of age and (4) dependency/parental enmeshment. Conclusions: The emerging adulthood literature provides a valuable framework for examining a normal developmental trajectory and highlights the relevance of age-related processes in YAs with chronic pain. The idealisation of opportunity and the role of perception in this developmental phase both appear relevant. It is significant that emotional stability is not yet established in emerging adulthood and links to unhelpful management strategies that may be differentiated from older populations are identified. PMID:28785407

Treated Mental Illness and the Risk of Child Abuse Perpetration.

PubMed

Friedman, Susan Hatters; McEwan, Miranda V

2018-02-01

Despite a limited empirical literature, parental mental illness is often cited as a major risk factor for violence against children. However, mental illness that is adequately treated would not be expected to lead to increased violence risk. This study compared incidents of violence toward children perpetrated by parents who were newly discharged from inpatient psychiatric treatment with violence perpetrated by other parents in the same communities to determine whether parents with treated mental illness had an elevated risk of child abuse perpetration. A secondary analysis of data from the MacArthur Violence Risk Assessment Study was conducted. Violence toward children reported by parents and by collateral informants at the initial ten-week follow-up interview was analyzed for two groups: study participants discharged from inpatient psychiatric facilities and parents in the community matched by neighborhood. Of the 416 parents in the participant group, 20 (5%) committed violence toward a child in the ten weeks after discharge, compared with 41 (14%) of the 299 parents in the comparison group. In the participant group, diagnostic categories of parents who committed violence toward a child were as follows: serious mental illness only (8% of whom were violent), substance use disorder only (3%), both serious mental illness and substance use disorder (4%), and another issue (7%). This study found that parents with treated serious mental illness were not at higher risk than other parents in their community of perpetrating violence toward children. Parents who were admitted to an acute psychiatric facility and treated appeared to be at lower risk of being violent toward children than other parents in their community.

Chronically Ill Children in America: Background and Recommendations.

ERIC Educational Resources Information Center

Hobbs, Nicholas; And Others

The report examines chronic illness in children and considers issues and recommendations for change in public policies and programs affecting chronically ill children and their families. The background chapter notes the significance of the problem, reviews 11 diseases that are representative of the severe chronic illnesses of childhood: juvenile…

Families living with parental mental illness and their experiences of family interventions.

PubMed

Afzelius, M; Plantin, L; Östman, M

2018-03-01

WHAT IS KNOWN ON THE SUBJECT?: Coping with parental mental illness in families can be challenging for both children and parents. Providing evidence-based family interventions to families where a parent has a mental illness can enhance the relationships in the family. Although psychiatric research has shown that evidence-based family interventions may improve the communication and understanding of parental mental illness, there is a lack in this area of research from an everyday clinical context. WHAT DOES THIS PAPER ADD TO EXISTING KNOWLEDGE?: Our study reinforces the fact that parents with mental illnesses are searching for support from psychiatric services in order to talk to their children about their illness. The finding that under-age children comply when they are told by their parents to join an intervention in psychiatric services supporting the family is something not observed earlier in research. This study once more illuminates the fact that partners of a person with parental mental illness are seldom, in an obvious way, included in family support interventions. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: Psychiatric services, and especially mental health nurses, have an important task in providing families with parental mental illness with support concerning communication with their children and in including the "healthy" partner in family support interventions. Introduction Although research has shown that evidence-based family interventions in research settings improve the communication and understanding of parental mental illness, there is a lack of knowledge about interventions in an everyday clinical context. Aim This study explores how families with parental mental illness experience family interventions in a natural clinical context in psychiatric services. Method Five families with children aged 10-12 were recruited from psychiatric services in southern Sweden and interviewed in a manner inspired by naturalistic inquiry and content analysis. Both family and individual interviews were performed. Results In striving to lead an ordinary life while coping with the parental mental illness, these families sought the support of the psychiatric services, especially in order to inform their children about the mental illness. Despite different family interventions, the family members felt supported and reported that the number of conflicts in the family had decreased. The parents were appreciative of help with child-rearing questions, and the children experienced a calmer family atmosphere. However, the partner of the person with mental illness experienced being left without support. Implications for practice Our study shows that psychiatric services, and especially mental health nurses, are in a position to more regularly offer family interventions in supporting the children and the healthy partners. © 2017 John Wiley & Sons Ltd.

Impact of Parental Severe Mental Illness: Ethical and Clinical Issues for Counselors

ERIC Educational Resources Information Center

Spiegelhoff, Sarah F.; Ahia, C. Emmanuel

2011-01-01

This article draws attention to the issue of parental severe mental illness and the ethical and clinical implications for counselors who work with this population. Parents with mental illness face a multitude of life challenges including, but not limited to, parenting difficulties, medication and hospitalization, custody and placement of their…

The Effects of Parents' Psychiatric Disorders on Children's High School Dropout.

ERIC Educational Resources Information Center

Farahati, F.; Marcotte, D. E.; Wilcox-Gok, V.

2003-01-01

Investigates the effect of parents' mental illness on the schooling of their children. Finds that parents' mental illnesses increase the probability of high school dropout of children, though these effects differ markedly with disease. Also finds that parental mental illness has more consistently negative effects on girls than on boys. (Contains…

Parents with mental illness - a qualitative study of identities and experiences with support services.

PubMed

Jones, M; Pietilä, I; Joronen, K; Simpson, W; Gray, S; Kaunonen, M

2016-10-01

WHAT IS KNOWN ON THE SUBJECT?: According to estimates more than half of adult mental health service users are parents, but their experiences are largely lacking from research literature. Parental mental illness can often be viewed from a risk perspective. Parents with mental illness and their families have unmet support needs. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: Parents with mental illness want acknowledgement that they can be able and responsible. Many parents adopt an expert by experience identity. Fathers can feel their parental role is not recognized and mothers express fears of being judged if they discuss their illness. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: Adult mental health services need to recognize and support parental role of service users. Joint care planning and family oriented care should be promoted. Professionals should take advantage of the knowledge of these parents and they could be more actively engaged in service development. Introduction Parental mental illness is often viewed from a risk perspective. Despite this, being a parent can be both valuable and motivating. Research literature lacks the perspective of mothers and fathers, who have experienced mental illness. Aim This study explores how parents with mental illness construct their identities as mothers and fathers and their experiences with health and social care services. Method Three focus groups with 19 participants were conducted in Finland and Scotland. Methods of discourse analysis have been used in to analyse the interview data. Results Adult service users want their parenting role recognized and supported. Parents have knowledge and skills which can be utilized and many have adopted an expert by experience identity. Discussion Being able to see oneself as a 'good' parent can be challenging but important. Parents may require support, but want to be included in the planning of their care. Services could make more use of the knowledge and skills parents and families have, and joint working could lessen parents' anxieties. Implications for practice Mental health practitioners are in a key position in providing more family centred, resource focused care. Service user expertise should be acknowledged in clinical practice. © 2016 John Wiley & Sons Ltd.

Coping, social relations, and communication: a qualitative exploratory study of children of parents with cancer.

PubMed

Thastum, Mikael; Johansen, Mikael Birkelund; Gubba, Lotte; Olesen, Louise Berg; Romer, Georg

2008-01-01

The purpose of this qualitative study of families where a parent has cancer was to explore ways of informing the child of the parent's illness, how the child perceives the parent's emotional state, how the child copes with the parent's illness, and how this coping relates to the parent's coping and concerns for the child. Twenty-one children from 15 families and their parents were interviewed. In 13 families the mother was ill, in two the father. Children were aware of the facts of the illness, but there was limited emotional communication between the generations. The children were very observant of both the ill and the healthy parent's emotional condition. The children's observations and expressions led us to identify five coping strategies the younger generation used: Helping others, parentification, distraction, keeping it in the head, and wishful thinking. Both adaptive and destructive examples of parentification were found. Communication patterns and parental coping seemed to be highly related to the child's coping repertoire. Even though most children seemed to manage rather well, all children were strongly affected by the illness. The 'healthiest' adaptation related to factors within the family system, which has implications for the provision of help.

The eHealth Enhanced Chronic Care Model: a theory derivation approach.

PubMed

Gee, Perry M; Greenwood, Deborah A; Paterniti, Debora A; Ward, Deborah; Miller, Lisa M Soederberg

2015-04-01

Chronic illnesses are significant to individuals and costly to society. When systematically implemented, the well-established and tested Chronic Care Model (CCM) is shown to improve health outcomes for people with chronic conditions. Since the development of the original CCM, tremendous information management, communication, and technology advancements have been established. An opportunity exists to improve the time-honored CCM with clinically efficacious eHealth tools. The first goal of this paper was to review research on eHealth tools that support self-management of chronic disease using the CCM. The second goal was to present a revised model, the eHealth Enhanced Chronic Care Model (eCCM), to show how eHealth tools can be used to increase efficiency of how patients manage their own chronic illnesses. Using Theory Derivation processes, we identified a "parent theory", the Chronic Care Model, and conducted a thorough review of the literature using CINAHL, Medline, OVID, EMBASE PsychINFO, Science Direct, as well as government reports, industry reports, legislation using search terms "CCM or Chronic Care Model" AND "eHealth" or the specific identified components of eHealth. Additionally, "Chronic Illness Self-management support" AND "Technology" AND several identified eHealth tools were also used as search terms. We then used a review of the literature and specific components of the CCM to create the eCCM. We identified 260 papers at the intersection of technology, chronic disease self-management support, the CCM, and eHealth and organized a high-quality subset (n=95) using the components of CCM, self-management support, delivery system design, clinical decision support, and clinical information systems. In general, results showed that eHealth tools make important contributions to chronic care and the CCM but that the model requires modification in several key areas. Specifically, (1) eHealth education is critical for self-care, (2) eHealth support needs to be placed within the context of community and enhanced with the benefits of the eCommunity or virtual communities, and (3) a complete feedback loop is needed to assure productive technology-based interactions between the patient and provider. The revised model, eCCM, offers insight into the role of eHealth tools in self-management support for people with chronic conditions. Additional research and testing of the eCCM are the logical next steps.

Development and psychometric evaluation of the Chronic Illness Anticipated Stigma Scale

PubMed Central

Quinn, Diane M.; Kalichman, Seth C.; Park, Crystal L.

2015-01-01

The Chronic Illness Anticipated Stigma Scale (CIASS) was developed to measure anticipated stigma (i.e., expectations of prejudice, stereotyping, and discrimination) among people living with chronic illnesses. The CIASS is a 12-item scale with three subscales differentiating among sources of anticipated stigma, including friends and family members, work colleagues, and healthcare workers. Results support the reliability, validity, and generalizability of the CIASS in two samples of people living with chronic illnesses. The CIASS was correlated with other stigma-related constructs as well as indicators of mental health, physical health, and health behaviors. The CIASS can help researchers gauge the degree to which people living with chronic illnesses anticipate stigma, better understand the processes by which anticipated stigma contributes to the health and behavior of people living with chronic illnesses, and compare the extent to which people living with different types of chronic illnesses anticipate stigma. PMID:22526525

Parents' help-seeking behaviours during acute childhood illness at home: A contribution to explanatory theory.

PubMed

Neill, Sarah J; Jones, Caroline H D; Lakhanpaul, Monica; Roland, Damian T; Thompson, Matthew J

2016-03-01

Uncertainty and anxiety surround parents' decisions to seek medical help for an acutely ill child. Consultation rates for children are rising, yet little is known about factors that influence parents' help-seeking behaviours. We used focus groups and interviews to examine how 27 parents of children under five years, from a range of socioeconomic groups in the East Midlands of England, use information to make decisions during acute childhood illness at home. This article reports findings elucidating factors that influence help-seeking behaviours. Parents reported that decision-making during acute childhood illness was influenced by a range of personal, social and health service factors. Principal among these was parents' concern to do the right thing for their child. Their ability to assess the severity of the illness was influenced by knowledge and experience of childhood illness. When parents were unable to access their general practitioner (GP), feared criticism from or had lost trust in their GP, some parents reported using services elsewhere such as Accident and Emergency. These findings contribute to explanatory theory concerning parents' help-seeking behaviours. Professional and political solutions have not reduced demand; therefore, collaborative approaches involving the public and professionals are now needed to improve parents' access to information. © The Author(s) 2014.

Communicating in complex situations: a normative approach to HIV-related talk among parents who are HIV+.

PubMed

Edwards, Laura L; Donovan-Kicken, Erin; Reis, Janet S

2014-01-01

Parents with HIV/AIDS are confronted with unique challenges when discussing HIV-related information with their children. Strategies for navigating these challenges effectively have not been systematically examined. In this study, we conducted in-depth interviews with 76 parents with HIV/AIDS who had children ages 10-18 years. Guided by O'Keefe and Delia's definition of a complex communication situation and Goldsmith's normative approach to interpersonal communication, we examined parents' goals for discussing HIV-related information, factors that made conversations challenging, and instances where these conversational purposes conflicted with one another. Our data reveal the following parent-adolescent communication predicaments: relaying safety information about HIV while minimizing child anxiety, modeling open family communication without damaging one's parental identity, and balancing parent-child relational needs amid living with an unpredictable health condition. Parents also described a variety of strategies for mitigating challenges when discussing HIV-related topics. Strategies parents perceived as effective included reframing HIV as a chronic, manageable illness; keeping talk educational; and embedding HIV-related topics within more general conversations. The theoretical and practical applications of these findings are discussed with regard to their relevance to health communication scholars and HIV care professionals.

Breaking bad news: communication around parental multiple sclerosis with children.

PubMed

Paliokosta, Elena; Diareme, Stavroula; Kolaitis, Gerasimos; Ferentinos, Spyros; Lympinaki, Eirini; Tsiantis, John; Romer, George; Karageorgiou, Clementine; Tsiantis, Alkis; Anasontzi, Sofia; Tsalamanios, Emmanuel

2009-03-01

This study investigates the relation of communication around parental multiple sclerosis (MS) to family dysfunction and mental health problems of the children in Greek families. Fifty-six families with a parent with MS were studied regarding emotional well-being of children, parental depression, family functioning, and illness' related impairment, correlated to the amount of information about parental illness provided to children. Significant differences were found in three dimensions of child psychopathology on maternal scores of Child Behavior Checklist, between children who had partial information about parental illness and the other two groups of children who had explicit or no information at all. Differences were also observed in children's scores on (Youth Self Report) social problems between the same groups. The finding that children who had only partial information about their parents' illness presented more problems, illustrates the importance of "how, what, and how much" of information is communicated to children. Clinical implications are discussed in terms of the families' difficulties with communicating parental illness with their children and possible need for professional support.

[Characteristics of interactions between mentally ill parents and their young children].

PubMed

Deneke, Christiane; Lüders, Bettina

2003-03-01

Disturbed parent infant interactions are frequently seen in cases of parental mental illness. They are indicating possible risks of the infant's development. Regular and illness-specific patterns are not found. Therefore the interaction has to be observed and classified in each individual case to recognize the relevance of the parental illness to the child. Different interaction patterns and their impact on the child's development are described and illustrated by case vignettes. The importance of preventive intervention is highlighted.

Parent Health and Functioning 13 Months After Infant or Child NICU/PICU Death

PubMed Central

Brooten, Dorothy; Cantwell, G. Patricia; del Moral, Teresa; Totapally, Balagangadhar

2013-01-01

BACKGROUND: After a child’s death, parents may experience depression, posttraumatic stress disorder (PTSD), and increased risk for cancers, diabetes, psychiatric hospitalization, and suicide. Racial/ethnic differences are unknown. This longitudinal study investigated health and functioning of Hispanic, black, and white parents through 13 months after NICU/PICU death. METHODS: Parents (176 mothers, 73 fathers) of 188 deceased infants/children were recruited from 4 NICUs, 4 PICUs, and state death certificates 2 to 3 weeks after death. Deaths occurred after limiting treatment/withdrawing life support (57%), unsuccessful resuscitation (32%), or brain death (11%). Data on parent physical health (hospitalizations, chronic illness), mental health (depression, PTSD, alcohol use), and functioning (partner status, employment) were collected in the home at 1, 3, 6, and 13 months after death. RESULTS: Mean age for mothers was 32 ± 8, fathers 37 ± 9; 79% were Hispanic or black. Thirteen months after infant/child death, 72% of parents remained partnered, 2 mothers had newly diagnosed cancer, alcohol consumption was below problem drinking levels, parents had 98 hospitalizations (29% stress related) and 132 newly diagnosed chronic health conditions, 35% of mothers and 24% of fathers had clinical depression, and 35% of mothers and 30% of fathers had clinical PTSD. At 6 months after infant/child death, 1 mother attempted suicide. Week 1 after infant/child death, 9% of mothers and 32% of fathers returned to employment; 7 parents took no time off. More Hispanic and black mothers than white mothers had moderate/severe depression at 6 months after infant/child death and PTSD at every time point. CONCLUSIONS: Parents, especially minority mothers, have negative physical and mental health outcomes during the first year after NICU/PICU death. PMID:24101760

Maternal fatigue and its relationship to the caregiving environment.

PubMed

White, Carmel Parker; White, Mark B; Fox, Melissa A

2009-12-01

For women with an autoimmune illness, fatigue can be a debilitating symptom that impacts many aspects of their life. There is scant research on maternal fatigue and its impact on the caregiving environment for either well women or women with chronic illnesses. The objective of this study was to examine the role maternal fatigue played in the caregiving environment, specifically in the mother's experience of the daily hassles of parenting, the discipline style she employed, and how she monitored her child's whereabouts. Two-hundred sixty-two mothers participated in this study: 103 mothers with multiple sclerosis (MS), 68 mothers with rheumatoid arthritis (RA), and a comparison group of 91 well mothers. Mothers completed questionnaires assessing their self-reported levels of fatigue, depression, quality and quantity of sleep, parenting daily hassles, discipline styles, and monitoring. After sleep, depression, and number of children were controlled for, fatigue explained additional variance in predicting monitoring for all three groups of mothers. Fatigue was also a significant predictor of parenting daily hassles for both well mothers and mothers with RA, but not for mothers with MS. For mothers with MS, it was the covariates (i.e., the number of children in the family and sleep quality and quantity) that were predictive of parenting daily hassles. Several explanations for mothers with MS not being as influenced by fatigue are discussed.

Do Parent Mental Illness and Family Living Arrangement Moderate the Effects of the Aussie Optimism Program on Depression and Anxiety in Children?

PubMed

Cheng, Maryanne; Rooney, Rosanna M; Kane, Robert T; Hassan, Sharinaz; Baughman, Natalie

2018-01-01

Parent mental illness and family living arrangement are associated with depression and anxiety in children, and may influence the effects of programs that aim to prevent these disorders. This study investigated whether these family context factors moderated the intervention effects of the enhanced Aussie Optimism Positive Thinking Skills program on depression and anxiety in primary school children. The intervention was a universal, cognitive-behavioral program, with a one hour session each week for 10 weeks, delivered by trained teachers. The participants were 502 children from 13 private schools, aged 9-11, with 347 in the intervention group and 155 in the control group. There were 267 females and 235 males. Data from 502 parents was also included. A cluster randomized controlled trial design was used, including eight intervention schools and five control schools. Depression and anxiety were assessed at pre-test, post-test, and 6-months follow-up. Information on parent mental illness and family living arrangement was collected through a parent questionnaire. The data was analyzed using covariance analysis with Generalized Linear Mixed Methods. At baseline, depressive and anxiety symptoms did not differ significantly based on parent mental illness. Symptoms of depression at baseline were significantly higher for children from a higher-risk family living arrangement, but anxiety symptoms were not. Parent mental illness and family living arrangement did not moderate the effects of the program on depression and anxiety at post-test or 6-months follow-up. Parent mental illness moderated the intervention effects on negative self-esteem, an aspect of depression, at post-test, with improvements seen only for children who did not have a parent with a mental illness. The findings indicate an association between family living arrangement and depressive symptoms in children. The findings suggest that the program is effective for children regardless of parent mental illness or family living arrangement, although parent mental illness has the capacity to influence the program's outcomes.

Experiences of adults who as children lived with a parent experiencing mental illness in a small-scale society : A Qualitative study.

PubMed

Dam, K; Joensen, D G; Hall, E O C

2018-03-01

WHAT IS KNOWN ON THE SUBJECT?: Children of parent with severe mental illness are often carrying a caring burden; they keep the illness in the family, are documented to be stigmatized, bullied and to take special attention to their mentally ill parent's health and well-being. Little is however known about these children's experiences when growing up in a small-scale society. WHAT THIS STUDY ADDS TO EXISTING KNOWLEDGE?: Children's experiences of living with a parent with severe mental illness in the small-scale society (Faroe Islands) are paradoxical, life is often unreasonable and evidently contradictory but anyway connected. The results show that "everybody knows everybody" which refers to that, in the small-scale society, it is difficult to be anonymous. The children were familiar with that people talked and had a prejudiced attitude; this resulted that the participants were constantly reminded of their mental ill parent's difference, and they were feeling less worthy than their pals. Children of parents with severe mental illness in a small-scale society need to support from the close family as well as mental healthcare professionals. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: The study adds knowledge about the challenges that children of mental ill parents have to go through. Dialogue among mental healthcare colleagues not only about caring for the sick parent but also about modes of caring for the children and the family at large would deepen the staff's knowing of the need for family-centred care within mental health care. Introduction An estimated 23% of children worldwide live with a parent experiencing mental illness. These children are exposed to emotional and psychosocial challenges. Little is known about these children when living in small-scale societies. Aim To explore how adults, who as children lived with parents experiencing mental illness in a small-scale society, recalled their childhood life. Method Individual interviews with 11 adults were analysed using content analysis. Results Living as a child with a parent experiencing mental illness in a small-scale society was described as "living in a paradox" which emerged from three categories: "intergenerational help and caring," "barriers understanding parental illness" and "everybody knows everybody". The children received little or no support from family members, nor from health and education professionals. Discussion In a small-scale society, stigma surrounding mental illness is notable. Families often attempt to conceal mental illness from outsiders with negative or adverse effects on children. Implications for practice Mental healthcare professionals need to consider the needs of children who have parents experiencing mental illness. It is imperative for the well-being of the patients' children to support them in understanding what is happening, turn gossiping in a positive direction and address stigma in the communities. © 2017 John Wiley & Sons Ltd.

The Chronic Illness Initiative: Supporting College Students with Chronic Illness Needs at DePaul University

ERIC Educational Resources Information Center

Royster, Lynn; Marshall, Olena

2008-01-01

College students with chronic illness find it difficult to succeed in traditional degree programs due to disruptions caused by relapses and unpredictable waxing and waning symptoms. College disability offices are often unable to help, both because their standard supports are not appropriate and because students with chronic illness frequently do…

The Special Educational Needs of Adolescents Living with Chronic Illness: A Literature Review

ERIC Educational Resources Information Center

Jackson, Megan

2013-01-01

Rates of chronic illness are increasing around the world and, accordingly, numbers of adolescent students living with chronic illness are also increasing. The challenges faced by these students and their teachers are complex. One of these challenges is the need of the adolescent with chronic illness to achieve some level of social conformity.…

Are children with chronic illnesses requiring dietary therapy at risk for disordered eating or eating disorders? A systematic review.

PubMed

Conviser, Jenny H; Fisher, Sheehan D; McColley, Susanna A

2018-03-01

Pediatric chronic illnesses (CI) can affect a child's mental health. Chronic illnesses with treatment regimens that specify a therapeutic diet may place the child at increased risk for disordered eating and specific eating disorders (ED). The aim of this review is to examine the relation between diet-treated CI and disordered eating and to determine the order of onset to infer directionality. Diet-treated CI is hypothesized to precede and to be associated with disordered eating. A comprehensive search of empirical articles that examine the relation between diet-treated CI (diabetes, cystic fibrosis, celiac disease, gastrointestinal disorders, and inflammatory bowel diseases) and disordered eating was conducted in Medline and PsycINFO using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A table of the sample's characteristics, ED measures, major pertinent findings, and the onset of CI in relation to ED were provided. Diet-treated CI was associated with disordered eating and ED. Diet-treated CI had onset prior to disordered eating in most studies, except for inflammatory bowel diseases. Disordered eating and unhealthy weight management practices put children at risk for poor medical outcomes. Interventions for diet-treated CI require a focus on diet and weight, but may increase the risk for disordered eating. Future research is needed to elucidate the mechanisms that transform standard treatment practices into pathological eating, including characteristics and behaviors of the child, parents/care providers, family, and treatment providers. © 2018 Wiley Periodicals, Inc.

The impact of childhood chronic neurological diseases on Greek families.

PubMed

Tzoufi, M; Mantas, Ch; Pappa, S; Kateri, M; Hyphantis, T; Pavlou, M; Mavreas, V; Siamopoulou-Mavridou, A

2005-01-01

Although the impact of childhood chronic neurological diseases (CND) on patients' psychological well-being has been increasingly addressed, little attention has been given to the influence of these conditions on family members and family functioning. The purpose of the present study was to investigate the family characteristics of Greek children suffering from CND. A total of 52 parents of children with CND were studied by using the Family Environmental Scale (FES), the Family Burden Scale, the General Health Questionnaire (GHQ-28) and a questionnaire on the knowledge of their children's illness, their coping strategies and their satisfaction with our services. During the same period, 30 parents of hospitalized children for common paediatric illnesses completed the FES. In both groups social and demographic features were registered. Appropriate statistical processes were applied to compare the above-mentioned family groups and to study the differences between the families of children with epilepsy (n=37) and the families of children with other CND (n=15). Parents of children with CND discuss their problems less freely, talk less openly around home, score highly on FES subscale of Conflict and, pay more attention to ethical and religious issues and values. Furthermore, the families of children with other CND were more burdened regarding the financial state and the health status of other family members in comparison with families of children with epilepsy. In addition, families of children with epilepsy were more involved in social and recreational activities, appeared to be more knowledgeable on the availability of help in critical conditions and were more satisfied with rendered medical services, in comparison with families of children with other CND. These preliminary findings provide important information concerning the special characteristics of Greek families of children suffering from CND, which may prove especially helpful in organizing specific support services.

Caring for teens with chronic illness: risky business?

PubMed

Louis-Jacques, Jennifer; Samples, Cathryn

2011-08-01

With advances in medicine, more children with chronic illness are reaching adolescence and young adulthood. Research has shown that this group is not immune to the behavioral risks endorsed by healthy adolescents. Recent literature exploring the etiology of risk behaviors and their impact on chronic illness is presented. Risk taking may be the result of differential maturation of two distinct parts of the adolescent brain. Risk taking can be considered normal in adolescents with chronic illness, but there is some evidence that chronic illness affects normal psychosocial development. Moreover, evidence supports that chronic illness can lead to disparities in risk education and assessment because of disease focused management rather than a more comprehensive approach. Youth living with chronic illnesses face unique challenges in accomplishing the developmental tasks of adolescence. These challenges include risk behaviors, which jeopardize current and future health. The reasons for risk taking are multifactorial and require providers to make the adolescent and not the illness the center of management. More research is needed on how to improve developmentally appropriate and relevant interventions to aid in safe passage into adulthood.

Illness Uncertainty and Illness Intrusiveness as Predictors of Depressive and Anxious Symptomology in College Students with Chronic Illnesses

ERIC Educational Resources Information Center

Mullins, Alexandria J.; Gamwell, Kaitlyn L.; Sharkey, Christina M.; Bakula, Dana M.; Tackett, Alayna P.; Suorsa, Kristina I.; Chaney, John M.; Mullins, Larry L.

2017-01-01

Objective: To examine predictors of psychological functioning in college students with chronic illnesses. Participants: Participants (N = 1413) included 364 students with self-reported diagnoses of asthma or allergies, 148 students with other chronic illnesses (eg, epilepsy, type 1 diabetes), and 901 healthy students. Data were collected between…

Increased prevalence of chronic physical health disorders in Australians with diagnosed mental illness.

PubMed

Scott, David; Burke, Karena; Williams, Susan; Happell, Brenda; Canoy, Doreen; Ronan, Kevin

2012-10-01

To compare chronic physical health disorder prevalence amongst Australian adults with and without mental illness. Total n=1,716 participants (58% female) with a mean age of 52 ± 13 years (range: 18 to 89 years) completed an online survey of Australian adults in 2010. Outcome measures including prevalence of chronic physical conditions and self-reported body mass index (BMI) in n=387 (23%) with a self-reported mental illness diagnosis were compared to respondents without mental illness. A significantly higher proportion of participants with mental illness were obese (BMI ≥ 30; 31 vs 24%, p=0.005). Adjusted odds ratios (OR) for coronary heart disease, diabetes, chronic bronchitis or emphysema, asthma, irritable bowel syndrome, and food allergies or intolerances (OR range: 1.54-3.19) demonstrated that chronic physical disorders were significantly more common in participants with a mental illness. Australian adults with a diagnosis for mental illness have a significantly increased likelihood of demonstrating chronic physical health disorders compared to persons without mental illness. Health professionals must be alert to the increased likelihood of comorbid chronic physical disorders in persons with a mental illness and should consider the adoption of holistic approaches when treating those with either a mental or physical illness. © 2012 The Authors. ANZJPH © 2012 Public Health Association of Australia.

A model of self-regulation for control of chronic disease.

PubMed

Clark, Noreen M; Gong, Molly; Kaciroti, Niko

2014-10-01

Chronic disease poses increasing threat to individual and community health. The day-to-day manager of disease is the patient who undertakes actions with the guidance of a clinician. The ability of the patient to control the illness through an effective therapeutic plan is significantly influenced by social and behavioral factors. This article presents a model of patient management of chronic disease that accounts for intrapersonal and external influences on management and emphasizes the central role of self-regulatory processes in disease control. Asthma serves as a case for exploration of the model. Findings from a 5-year study of 637 children with asthma and their care-taking parents supported that the self-regulation elements of the model were reasonably stable over time and baseline values were predictive of important disease management outcomes. © 2014 Society for Public Health Education.

Grief: The Unrecognized Parental Response to Mental Illness in a Child.

ERIC Educational Resources Information Center

MacGregor, Peggy

1994-01-01

Notes that parents whose son or daughter develops serious mental illness experience grief that is often neither recognized by society nor addressed by mental health professionals. Describes some common elements of parental bereavement, losses experienced with mental illness, consequences of ignoring grief, and appropriate interventions for mental…

Effects of spousal illness on self-rated health in older couples: Role of sex and proximity to adult children.

PubMed

Saito, Tami; Wakui, Tomoko; Kai, Ichiro

2016-12-01

The present study examined the impact of serious spousal illness or hospitalization on community-dwelling older adults' self-rated health (SRH), and explored the moderating effects of sex and residential proximity to adult children using a prospective and representative survey design. The sample was obtained from a 2-year longitudinal survey of non-institutionalized men and women aged 65 years and older carried out in the Fukui Prefecture, Japan (n = 1573). The effect of serious spousal illness or hospitalization on SRH during the survey period was examined after controlling for baseline SRH, sex, age, socioeconomic status, chronic illness and other baseline covariates. Overall, 15.7% of respondents had experienced a serious spousal illness or hospitalization within the previous year. After controlling for covariates, spousal illness had a significant negative effect on SRH at follow-up (P = 0.031). More serious effects of spousal illness were found in older adults whose children lived farther than 30 min away than in couples who lived with their children (P = 0.009). However, there was no significant interaction effect between sex and spousal illness. Serious spousal illness could cause deterioration in the health of older spouses, particularly for older parents whose children live a distance away. Geriatr Gerontol Int 2016; 16: 1332-1338. © 2015 Japan Geriatrics Society.

Parents of mentally ill adult children living at home: rewards of caregiving.

PubMed

Schwartz, Chaya; Gidron, Ronit

2002-05-01

In the context of parents caring at home for an adult child with mental illness, this study explored the positive aspects and rewards of caregiving. Specifically, it measured the extent to which parents perceive their ill child as providing assistance and support--practical and emotional--and perceive their own caregiving as emotionally and mentally rewarding. One parent from each of 93 households completed a self-administered questionnaire. All the parents reported receiving help and support from their child, but perceived the satisfaction gained from fulfilling their parental duties and from learning about themselves as far more important. Their assessment of this satisfaction was entirely unaffected by the subjective and objective burdens on them and the severity of the child's illness.

Examination of parent-child adjustment in juvenile rheumatic diseases using depression-specific indices of parent and youth functioning.

PubMed

Bonner, Margaret S; Ramsey, Rachelle R; Ryan, Jamie L; Fedele, David A; Mullins, Larry L; Wagner, Janelle L; Jarvis, James N; Chaney, John M

2015-03-01

Studies demonstrate a link between parental distress, youth illness appraisals, and depression symptoms in youth with juvenile rheumatic diseases. However, the exclusive use of broadband (i.e. general) measures of parental distress in these studies has resulted in conceptual and clinical imprecision regarding the parent-child adjustment process. Our aim was to reanalyze previously published data (i.e. Wagner et al., 2003) using a depression-specific scale derived from the general adult distress measure in the original study. Parents completed the Brief Symptom Inventory (BSI), youth completed the Child Depression Inventory (CDI), and the Illness Intrusiveness Scale (IIS-C). Thirteen Diagnostic and Statistical Manual of Mental Disorders (Fourth Edition) depression-specific items from the BSI comprised the parent measure of Depressive Symptoms Scale (DS). Consistent with Wagner et al. (2003), adult DS scores were associated with youth CDI scores. However, youth illness appraisals had unique effects on the parent-child depression relation. Elevated youth perceptions of illness intrusiveness amplified the negative effect of parent depressive symptoms on youth depressive symptoms; decreased illness intrusiveness buffered the negative effect of parent depression. The empirical and clinical implications of assessing parent and youth adjustment in a domain-specific manner are discussed. © The Author(s) 2013.

Loneliness and Quality of Life in Chronically Ill Rural Older Adults

PubMed Central

Theeke, Laurie A.; Mallow, Jennifer

2015-01-01

Background Loneliness is a contributing factor to various health problems in older adults, including complex chronic illness, functional decline, and increased risk of mortality. Objectives A pilot study was conducted to learn more about the prevalence of loneliness in rural older adults with chronic illness and how it affects their quality of life. The purposes of the data analysis reported here were twofold: to describe loneliness, chronic illness diagnoses, chronic illness control measures, prescription medication use, and quality of life in a sample of rural older adults; and to examine the relationships among these elements. Methods A convenience sample of 60 chronically ill older adults who were community dwelling and living in Appalachia was assessed during face-to-face interviews for loneliness and quality of life, using the University of California, Los Angeles (UCLA) Loneliness Scale (version 3) and the CASP-12 quality of life scale. Chronic illness diagnoses, chronic illness control measures, and medication use data were collected through review of participants’ electronic medical records. Results Overall mean loneliness scores indicated significant loneliness. Participants with a mood disorder such as anxiety or depression had the highest mean loneliness scores, followed by those with lung disease and those with heart disease. Furthermore, participants with mood disorders, lung disease, or heart disease had significantly higher loneliness scores than those without these conditions. Loneliness was significantly related to total number of chronic illnesses and use of benzodiazepines. Use of benzodiazepines, diuretics, nitrates, and bronchodilators were each associated with a lower quality of life. Conclusions Nurses should assess for loneliness as part of their comprehensive assessment of patients with chronic illness. Further research is needed to design and test interventions for loneliness. PMID:23958674

Young adults' childhood experiences of support when living with a parent with a mental illness.

PubMed

Nilsson, Stefan; Gustafsson, Lisa; Nolbris, Margaretha Jenholt

2015-12-01

There are several concerns in relation to children living with a parent suffering from a mental illness. In such circumstances, the health-care professionals need to involve the whole family, offering help to the parents on parenting as well as support for their children. These children are often helped by participating in meetings that provide them with contact with others with similar experiences. The aim of this study was to investigate young adults' childhood experiences of support groups when living with a mentally ill parent. Seven young women were chosen to participate in this study. A qualitative descriptive method was chosen. The main category emerged as 'the influence of life outside the home because of a parent's mental illness' from the two generic categories: 'a different world' and 'an emotion-filled life'. The participants' friends did not know that their parent was ill and they 'always had to…take responsibility for what happened at home'. These young adults appreciated the support group activities they participated in during their childhood, stating that the meetings had influenced their everyday life as young adults. Despite this, they associated their everyday life with feelings of being different. This study highlights the need for support groups for children whose parents suffer from mental illness. © The Author(s) 2014.

Is my child sick? Parents' management of signs of illness and experiences of the medical encounter: Parents of recurrently sick children urge for more cooperation

PubMed Central

Ertmann, Ruth K.; Reventlow, Susanne; Söderström, Margareta

2011-01-01

Objectives Parents of sick children frequently visit their general practitioners (GPs). The aim was to explore parents' interpretation of their child's incipient signs and symptoms when falling ill and their subsequent unsatisfactory experience with the GP in order to make suggestions for improvements in the medical encounter. Design Semi-structured interviews. Setting and subjects Twenty strategically selected families with a child from a birth cohort in Frederiksborg County, Denmark were interviewed. Results Parents wanted to consult their GP at the right time, i.e. neither too early nor too late. Well-educated parents experienced a discrepancy between their knowledge about their child, the information they had sought about the illness and the consultation with the GP, when they were dismissed with phrases such as “it will disappear” or “it is just a virus”. The parents went along with the GP's advice if the child only occasionally became sick. However, parents of children with recurrent illnesses seemed very frustrated. During the course of several consultations with their GP, they started to question the GP's competence as the child did not regain health. Conclusions Parents want to be acknowledged as competent collaborators. The GP's failure to acknowledge the parents' knowledge of their child's current illness, and the parents' attempt to identify what is wrong with the child and make the child feel better before the encounter may have consequences for the GP's credibility. It is therefore recommended that parents of children with recurrent illnesses receive extra attention and information. PMID:21080763

Is my child sick? Parents' management of signs of illness and experiences of the medical encounter: parents of recurrently sick children urge for more cooperation.

PubMed

Ertmann, Ruth K; Reventlow, Susanne; Söderström, Margareta

2011-03-01

Parents of sick children frequently visit their general practitioners (GPs). The aim was to explore parents' interpretation of their child's incipient signs and symptoms when falling ill and their subsequent unsatisfactory experience with the GP in order to make suggestions for improvements in the medical encounter. Semi-structured interviews. Twenty strategically selected families with a child from a birth cohort in Frederiksborg County, Denmark were interviewed. Parents wanted to consult their GP at the right time, i.e. neither too early nor too late. Well-educated parents experienced a discrepancy between their knowledge about their child, the information they had sought about the illness and the consultation with the GP, when they were dismissed with phrases such as "it will disappear" or "it is just a virus". The parents went along with the GP's advice if the child only occasionally became sick. However, parents of children with recurrent illnesses seemed very frustrated. During the course of several consultations with their GP, they started to question the GP's competence as the child did not regain health. Parents want to be acknowledged as competent collaborators. The GP's failure to acknowledge the parents' knowledge of their child's current illness, and the parents' attempt to identify what is wrong with the child and make the child feel better before the encounter may have consequences for the GP's credibility. It is therefore recommended that parents of children with recurrent illnesses receive extra attention and information.

The duality of health technology in chronic illness: how designers envision our future.

PubMed

Lehoux, Pascale

2008-06-01

This essay critically explores the role of technological innovation in the constitution of chronic states and illness. Drawing on the co-construction of technology and society perspective, it focuses more specifically on the way in which innovation designers envisage the enhancement of the chronically ill and build certain kinds of socio-technical configuration to deal with chronic illness. Using the case of ;intelligent distance patient monitoring' as an illustration, the paper argues that technology creates as much as it solves the problem of chronic illness. Technology is recursively embedded in chronic illness and it generates dual effects: it constrains and sustains users' daily practices. Only by recognizing technology's duality and eventually transcending it will research and policy initiatives be able to deal creatively and responsibly with the design of our future health experiences.

[Anti-nicotine education applied in relation of parents of the diseased children on chronic allergic diseases of respiratory system].

PubMed

Przybylski, Grzegorz; Gołda, Ryszard; Pyskir, Jerzy; Pasińska, Magdalena; Ludwikowski, Grzegorz; Kuziemski, Arkadiusz; Kopiński, Piotr

2006-01-01

The allergies of respiratory system are at children the frequent illnesses. Among favorable them factors, risk on passive smoking tobacco can be also. Passive smoking is defined as risk non-smoking on tobacco smoke in environment. Recent reports represent that smoking in home environment tobacco increase on passive smokers' asthma morbidity, especially children in school age. It in it was report the necessity of leadership of anti-nicotine education was underlined in the face of smoking parents. It bets that she should motivate she better parents to cessation smoking, using authority of doctor and love parental. Acting we decided with these principles to analyze effectiveness two year anti-nicotine education which be applied in the face of all treated smoking parents of children with reason of chronic allergic diseases of respiratory system in out-patients. The study comprised parents of 146 children at the Allergy out-Patients clinic, who were diagnosed and cured in years 2003-2005. Generally were 292 persons. The children be treated with reason of bronchial asthma and allergic rhinitis. It the data on subject of smoking of tobacco were collected was on basis of interview got from parents during visits at information bureau on beginning the treatment the children, in his track as well as after two years of education. The anti-nicotine education was applied by whole period of observation during routine medical visits. In moment beginning of treatment in studied group the parents' and education children (n = 292) it 79 the parents' couple did not smoke. Smoking parents among remaining 67 steams were. From among them parents 13 children smoked both, only father in 36 cases smoked and mother in remaining 18 parents' couple smoked. 80 parents smoked with generally. 63 persons after two years of anti-nicotine education the nonsmoking committed one from group smoking. 22 persons among them were from among 24 fathers and 17 mothers' peer in which smoked both parents. Remaining smoking and non-smoking parents granted that children tried to restrain to minimum stay in environment smoking. We on basis of received results to affirm that child's disease has on parents' behaviour essential influence can. It in child was affirmed was all analyzed situations characteristic decrease number with diseased child of smokers' families. Recapitulating anti-nicotine education of the children's parents diseased on chronic allergic diseases of respiratory system is very good restrictive agent their exposition on smoking the tobacco. Contemporaneously in effective way influences on decisions of adults about cessation smoking and the healthy style of life promotes.

PETS-D (parents education through simulation-diabetes): Parents' qualitative results.

PubMed

Ramchandani, Neesha; Maguire, Laura L; Stern, Kailyn; Quintos, Jose B; Lee, Mary; Sullivan-Bolyai, Susan

2016-08-01

Parents who have a child newly diagnosed with type 1 diabetes (T1D) must quickly learn daily diabetes self-management. An RCT was conducted using human patient simulation (HPS) to enhance parents learning diabetes self-management with children with new-onset T1D. The purpose of this study was to describe parents' perspectives of using HPS to augment diabetes education. A qualitative descriptive design was used with open-ended in-depth interviews of parents (n=49) post-intervention. Qualitative directed content analysis was used. The majority of parents were positive about learning with HPS. Although a few parents said the HPS was "hokey" or "creepy," most reported the visual and hands-on learning was realistic and very beneficial. Seeing a seizure increased their fear although they would have panicked if they had not had that learning experience, and it helped build their diabetes self-management confidence. Recommendations included teaching others with the HPS (grandparents, siblings, babysitters, and school nurses). HPS-enhanced education is an acceptable and viable option that was generally well-received by parents of children with new-onset T1D. The technique should be studied with parents of children with other chronic illnesses to see if the benefits found in this study are applicable to other settings. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

The Use of Self-Care Agency To Meet the Need for Solitude and Social Interaction by Chronically Ill Individuals.

ERIC Educational Resources Information Center

Burns, Margaret A.

This study examined the effect of chronic illness on the individual's ability to meet his or her need for solitude and for social interaction by exploring how chronically ill individuals used their own ability (self-care agency) to meet these needs. Subjects were 90 chronically ill older persons, 30 of whom were living at home, 30 who lived in a…

Cultural expressions of bodily awareness among chronically ill Filipino Americans.

PubMed

Becker, Gay

2003-01-01

To describe Filipino Americans' cultural traditions surrounding bodily awareness, especially how the principle of balance informs their views, and the link to self-management of chronic illness. This qualitative study used semistructured interviews with 85 Filipino Americans between the ages of 46 and 97 years. Volunteers were recruited from numerous health care sites in 1 geographic location in the United States. Respondents had 1 or more chronic illnesses. Taped and transcribed interviews were coded and evaluated for themes. The concept of balance was central to Filipino Americans' portrayal of bodily awareness of signs and symptoms related to chronic illnesses, as well as to actions they took to manage their chronic illnesses. Efforts were made to control chronic illnesses through a variety of self-care practices. Diet posed a particular challenge because of the symbolic importance of food in Filipino culture and its use in the maintenance of social relationships. The ways in which Filipino Americans combine attention to the body, values of balance and harmony, and emphasis on social well-being result in heightened attention to bodily processes. Filipino Americans' emphasis on bodily awareness suggests that this particular cultural strength can be used to enhance chronic illness management. Awareness of the cultural traditions of Filipino Americans can facilitate patient education about how to manage chronic illnesses.

Using Qualitative Methods to Evaluate a Family Behavioral Intervention for Type 1 Diabetes

PubMed Central

Herbert, Linda Jones; Sweenie, Rachel; Kelly, Katherine Patterson; Holmes, Clarissa; Streisand, Randi

2013-01-01

Introduction The objectives of this study were to qualitatively evaluate a dyadic adolescent-parent type 1 diabetes (T1D) program developed to prevent deterioration in diabetes care among adolescents with T1D and provide recommendations for program refinement. Method Thirteen adolescent-parent dyads who participated in the larger RCT, the TeamWork Project, were interviewed regarding their perceptions of their participation in the program and current T1D challenges. Interviews were transcribed and coded to establish broad themes. Results Adolescents and parents thought the TeamWork Project sessions were helpful and taught them new information. Five themes catalog findings from the qualitative interviews: TeamWork content, TeamWork structure, transition of responsibility, current and future challenges, and future intervention considerations. Discussion Addressing T1D challenges as a parent-adolescent dyad via a behavioral clinic program is helpful to families during adolescence. Findings highlight the utility of qualitative evaluation to tailor interventions for the unique challenges related to pediatric chronic illness. PMID:24269281

Prevalence of mental illness within families in a regional child-focussed mental health service.

PubMed

Naughton, Michael F A; Maybery, Darryl J; Goodyear, Melinda

2018-04-01

Nearly 50% of all mental illnesses begin in childhood before the age of 14 years, and over 20% of parents have a mental illness. Few studies have examined the co-occurrence of mental illnesses in parents and children. In the present study, we examined the extent of mental illness within families of 152 clients attending an Australian regional child and adolescent mental health service (CAMHS). A cross-sectional study design was employed involving a case record review and clinician-completed questionnaire of the children and youth attending a CAMHS. It was found that 79% of these children were living with a parent with mental illness. The predominant diagnosis of both child and parent was an anxiety or mood disorder, and many families had co-occurring risk factors of domestic violence and limited social supports. The findings in this Australian cohort are similar to those of other international research. While novel in nature, the present study has highlighted the extent of both mental illness and scarce supports for both children and parents in the same family. The findings indicate the need for a coordinated multiservice delivery of appropriate and consistent family-focussed interventions, responding to both mental illness and social supports for children and parents. Further research should examine specific components of family need and support, as seen through the eyes of the child and their parent. © 2017 Australian College of Mental Health Nurses Inc.

Descriptive survey about causes of illness given by the parents of children with cancer.

PubMed

Matteo, Bernardi; Pierluigi, Badon

2008-04-01

When a doctor diagnoses a child's illness as cancer, parents very often react by creating wrong and unrealistic theories about the origins of their child's illness which in turn generates self-blame in the parents, who take responsibility for the disease. To find what are the parents' beliefs about the origins of their children's illness. Descriptive study. Seventy-two couples of parents whose children with cancer are under treatment in the haemato-oncology paediatric ward of the Padova hospital. They have been collected by a no probabilistic method of sampling. A questionnaire was used, based on current literature, which investigates the beliefs of the parents as to what are the causes of illness, whether the parents research information about the illness and the origins of cancer and what are the information sources they use in order to establish if there is a connection between these factors. Eighty-seven percent of the sample group thinks that there is a specific origin of their child's illness: 27% believes the cause is environmental pollution, 26% believes it is due to radiation emissions, 26% believes it is due to genetic factors and 8% believes it is due to other causes. Eighty six percent and 70% of the sample search for information about the illness and its causes; 64% of the parents state that the first meeting with the medical staff, in which the illness is explained and they are informed that there are no known causes that produce it, does not clarify their doubts. The sources more often used to search for more information and explanations are the physicians in the ward, internet and medical books. This survey confirms the importance of an "advocacy" role of the nurse in educating the caregiver and the need to create instruments which guide the parents in the informative process and the research for good information. Nurses need to be cognizant that their care is crucial not just for the child, but for the entire family.

Persistent inflammation, immunosuppression, and catabolism and the development of chronic critical illness after surgery.

PubMed

Efron, Philip A; Mohr, Alicia M; Bihorac, Azra; Horiguchi, Hiroyuki; Hollen, McKenzie K; Segal, Mark S; Baker, Henry V; Leeuwenburgh, Christiaan; Moldawer, Lyle L; Moore, Frederick A; Brakenridge, Scott C

2018-05-25

As early as the 1990s, chronic critical illness, a distinct syndrome of persistent high-acuity illness requiring management in the ICU, was reported under a variety of descriptive terms including the "neuropathy of critical illness," "myopathy of critical illness," "ICU-acquired weakness," and most recently "post-intensive care unit syndrome." The widespread implementation of targeted shock resuscitation, improved organ support modalities, and evidence-based protocolized ICU care has resulted in significantly decreased in-hospital mortality within surgical ICUs, specifically by reducing early multiple organ failure deaths. However, a new phenotype of multiple organ failure has now emerged with persistent but manageable organ dysfunction, high resource utilization, and discharge to prolonged care facilities. This new multiple organ failure phenotype is now clinically associated with the rapidly increasing incidence of chronic critical illness in critically ill surgery patients. Although the underlying pathophysiology driving chronic critical illness remains incompletely described, the persistent inflammation, immunosuppression, and catabolism syndrome has been proposed as a mechanistic framework in which to explain the increased incidence of chronic critical illness in surgical ICUs. The purpose of this review is to provide a historic perspective of the epidemiologic evolution of multiple organ failure into persistent inflammation, immunosuppression, and catabolism syndrome; describe the mechanism that drives and sustains chronic critical illness, and review the long-term outcomes of surgical patients who develop chronic critical illness. Copyright © 2018 Elsevier Inc. All rights reserved.

Resilience in the face of serious illness among chronically ill African Americans in later life.

PubMed

Becker, Gay; Newsom, Edwina

2005-07-01

The purpose of this work was to examine older African Americans' philosophies about their chronic illnesses and how those philosophies affected chronic illness management. Three to five in-depth interviews were conducted over the course of several years with 38 respondents between the ages of 65 and 91. Both open-ended and semistructured questions were asked. Respondents demonstrated determination, perseverance, and tenacity no matter how serious their illnesses were. Racism was instrumental in shaping the responses of these African Americans to their illnesses through cultural values that emphasized independence, spirituality, and survival. Respondents demonstrated a resilient philosophy as they faced disabling illness. This research attests to the importance of examining racism in the analysis of how older ethnic minorities live with chronic illness, as it provides the context for understanding the development of culturally specific philosophies about illness. Resilience, as a culturally specific philosophy, is an important adjunct to chronic illness management in later life, and more needs to be understood about the dimensions that shape it by cultural group.

Strategies for parenting by mothers and fathers with a mental illness.

PubMed

van der Ende, P C; van Busschbach, J T; Nicholson, J; Korevaar, E L; van Weeghel, J

2016-03-01

WHAT IS KNOWN ON THE SUBJECT?: The combination of coping with their mental health problems and caring for children makes parents vulnerable. Family-centred practice can help to maintain and strengthen important family relationships, and to identify and enhance the strengths of a parent with a mental illness, all contributing to the recovery of the person with the mental illness. WHAT THIS PAPER ADDS TO THE EXISTING KNOWLEDGE?: Taking the strength and the opportunities formulated by parents themselves as a starting point is fairly new. Parents with severe mental illness find strength for parenting in several ways. They feel responsible, and this helps them to stay alert while parenting, whereas parenthood also offers a basis for social participation through school contacts and the child's friendships. Dedication to the parent role provides a focus; parents develop strengths and skills as they find a balance between attending to their own lives and caring for their children; and parenting prompts them to find adequate sources of social support. In this study these strategies were found to be the fundamentals of recovery related to parenting. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: Nurses can support and coach patients who are identified as parents, and self-chosen parenting related goals are set and addressed. A family-focused approach by nurses can be used to prevent problems for children and their families, identify their strengths as well as vulnerabilities, and address the challenges to build resilience. Understanding of the problems of parents with mental illness is growing. Gaining insight into strategies for parenting, while taking the opportunities formulated by these parents themselves as a starting point is fairly new. What are the strategies of parents with a mental illness to be successful? Experiences of 19 mothers and eight fathers with a mental illness were explored with in-depth interviews. Data were content analysed, using qualitative methods. Next to feelings of inadequacy, interviewees also describe how children enrich and structure their lives and are not only a burden but serve as distraction from problems. Developing activities that interest both child and parent provides avenues for emerging strength. Mental illness constrains fathers, but also gives opportunities to develop a meaningful relation with their children. Strategies like being fully dedicated to the parental role, finding a balance between attention for one's own life and parenting and finding adequate sources of support are found to be fundamental for recovery in the parent role. Implications for practice Peer groups can be of valuable help and mental health workers can support parents to set self-chosen parenting related goals. © 2016 John Wiley & Sons Ltd.

Descriptive epidemiology of chronic childhood adversity in Mexican adolescents.

PubMed

Benjet, Corina; Borges, Guilherme; Medina-Mora, María Elena; Zambrano, Joaquín; Cruz, Carlos; Méndez, Enrique

2009-11-01

To estimate the prevalence of adversity (neglect and abuse, parental loss, parental psychopathology, economic adversity, and serious physical illness), the interrelatedness of adversities, and their socio-demographic correlates. This is a multistage probability survey of 3005 adolescents aged 12-17 years residing in Mexico City. Youth were administered the computer-assisted adolescent version of the World Mental Health Composite International Diagnostic Interview in their homes. The childhood and posttraumatic stress disorder sections provided information regarding adversity. Descriptive and logistic regression analyses were performed considering the multistage and weighted sample design. A total of 68% of adolescents have experienced at least one type of chronic childhood adversity, whereas almost 7% have experienced four of more. The most frequent adversity is economic adversity followed by witnessing domestic violence. Boys experience more neglect than girls, and girls experience more sexual abuse than boys. Family dysfunction adversities tend to clump together such that youth exposed to abuse of any form also report witnessing domestic violence and parental mental pathology. Youth whose parents have divorced are likely to experience economic adversity. Parental death is independent of experiencing other childhood adversities. Older adolescents, school drop-outs, those with young mothers, those with more siblings, and those whose parents have less education are more likely to experience adversity. Although most adolescents have experienced some adversity, a small group is exposed to many adversities. Understanding the distribution of adversities may help us to identify at-risk youth and to better interpret the findings from studies on the role of adversity in diverse health outcomes.

Initiating communication about parental mental illness in families: an issue of confidence and security.

PubMed

Pihkala, Heljä; Sandlund, Mikael; Cederström, Anita

2012-05-01

Beardslee's family intervention (FI) is a family-based intervention to prevent psychiatric problems for children of mentally ill parents. The parents' experiences are of importance in family-based interventions. Twenty five parents were interviewed about their experiences of FI. Data were analysed by qualitative methods. Confidence and security in the professionals and in FI as a method were prerequisites for initiating communication about the parents' mental illness with the children. FI provides a solid base for an alliance with the parents and might be a practicable method when parenthood and children are discussed with psychiatric patients.

Parenting in the context of chronic pain: A controlled study of parents with chronic pain

PubMed Central

Wilson, Anna C.; Fales, Jessica L.

2014-01-01

Objectives This study aims to describe what adults with chronic pain experience in their role as parents, utilizing quantitative and qualitative methods. The first aim is to compare parents with chronic pain to parents without chronic pain on perceptions of their adolescent’s pain, parental response to pain, and catastrophizing beliefs about pain. The study also examined predictors of parental protective behaviors, and examined whether these associations differed by study group. Methods Parents with chronic pain (n=58) and parents without chronic pain (n=72) participated, and completed questionnaire measures of pain characteristics and pain interference, as well as measures of parental catastrophizing and protective pain responses. Parents with chronic pain also completed a structured interview about their experience of being a parent. Interview responses were videotaped and subsequently coded for content. Results Compared to controls, parents with chronic pain endorsed more pain in their adolescents, and were more likely to catastrophize about their adolescent’s pain and respond with protective behaviors. Parent’s own pain interference and the perception of higher pain in their adolescent was associated with increased protective parenting in the chronic pain group. Qualitative coding revealed a number of areas of common impact of chronic pain on parenting. Discussion Chronic pain impacts everyday parenting activities and emotions, and impacts pain-specific parent responses that are known to be related to increased pain and pain catastrophizing in children and adolescents. Parents with chronic pain might benefit from interventions that address potential parenting difficulties, and might improve outcomes for their children. PMID:25232862

Self-reported peer victimization and child mental health: results of a cross-sectional survey among French primary school children.

PubMed

Shojaei, Taraneh; Wazana, Ashley; Pitrou, Isabelle; Gilbert, Fabien; Kovess, Viviane

2009-08-01

To estimate the prevalence of peer victimization among primary school-aged children, to identify mental health and social correlates, and to assess health care services use. One hundred schools and 25 children (6-11 years old) per school were randomly selected in a large French region. Data were collected using standardized self-administered questionnaires to parents (Strengths and Difficulties Questionnaire) and children (Dominic Interactive). Three drawings depicting situations of victimization were added to the 91 standard questions of the Dominic Interactive. The categories of victimization considered were as follows: bullied, assaulted not scared, and scared not assaulted (categories mutually exclusive). Complete data were available for 1,274 children (54.4%). The prevalence of bullied children, assaulted not scared, and scared not assaulted was 21.0%, 19.6%, and 19.7%, respectively. Bullied children were characterized by their vulnerability: young age (6-8 yr) and chronic illness. The main correlates were self-reported symptoms of anxiety, major depressive disorder, and parent-reported peer relationship difficulties. Victimization was not associated with higher access to mental health services (odds ratio = 1.0; 95% confidence interval = 0.5-2.1). Except for children who suffered chronic illness, access to physicians was less frequent for bullied children (odds ratio = 0.3; 95% confidence interval = 0.2-0.7). Peer victimization was frequent in schools, even in primary schools. Our findings highlight the need for public health interventions in schools and the role of physicians in detecting children at risk.

Illness cognitions as a pathway between religiousness and subjective health in chronic cardiac patients.

PubMed

Karademas, Evangelos C

2010-03-01

The aim of this study was to examine the role of illness cognitions as a possible pathway between religiousness and subjective health in chronic illness. A sample of 135 chronic cardiac patients completed questionnaires about intrinsic religiousness, frequency of church service attendance, basic illness cognitions (i.e., helplessness, illness acceptance, perceived benefits), and physical and emotional well-being. According to the results, religiousness was significantly associated with subjective health. However, this relationship was indirect, with helplessness and illness acceptance serving as mediators between intrinsic religiousness and health. This finding is significant for understanding the complex relation of religiousness to chronic patients' well-being.

Factors Promoting Mental Health of Adolescents Who Have a Parent with Mental Illness: A Longitudinal Study.

PubMed

Van Loon, L M A; Van De Ven, M O M; Van Doesum, K T M; Hosman, C M H; Witteman, C L M

Children of parents with mental illness have an elevated risk of developing a range of mental health and psychosocial problems. Yet many of these children remain mentally healthy. The present study aimed to get insight into factors that protect these children from developing internalizing and externalizing problems. Several possible individual, parent-child, and family protective factors were examined cross-sectionally and longitudinally in a sample of 112 adolescents. A control group of 122 adolescents whose parents have no mental illness was included to explore whether the protective factors were different between adolescents with and without a parent with mental illness. Cross-sectional analyses revealed that high self-esteem and low use of passive coping strategies were related to fewer internalizing and externalizing problems. Greater self-disclosure was related to fewer internalizing problems and more parental monitoring was related to fewer externalizing problems. Active coping strategies, parental support, and family factors such as cohesion were unrelated to adolescent problem behavior. Longitudinal analyses showed that active coping, parental monitoring, and self-disclosure were protective against developing internalizing problems 2 years later. We found no protective factors for externalizing problems. Moderation analyses showed that the relationships between possible protective factors and adolescent problem behavior were not different for adolescents with and without a parent with mental illness. The findings suggest that adolescents' active coping strategies and parent-child communication may be promising factors to focus on in interventions aimed at preventing the development of internalizing problems by adolescents who have a parent with mental illness.

Puppy Love, Adolescence, and Chronic Illness: The Importance of Pets for Youth with Type 1 Diabetes

PubMed Central

Walker, Ashby F.; Johnson, Cathryn; Schatz, Desmond A.; Silverstein, Janet H.; Rohrs, Henry J.

2015-01-01

The benefits of animal-companion ties to well-being are consistently documented, yet few studies use patient-centered methodologies to examine how youth living with chronic illnesses rely on domestic pets for support. Youth with type 1 diabetes (T1D) aged 12 to 19 years (N=40) completed surveys involving a prompt to take five photos of “what diabetes means to you,” with an accompanying narrative. Content analysis was conducted for photos/narratives and numeric variables analyzed including socio-economic status (SES: measured by total household income and years of parental education) and HbA1C. More than half of the youth participants took pictures of coping mechanisms, including pictures of their pets. In fact, pictures of pets outnumbered pictures of people three to one. Pet depictions were captured by youth from all SES levels. Youth with T1D identify pets as an important source of support. More research is needed to understand how pets may offset disease burden for youth with T1D. PMID:28725812

Protective connections and educational attainment among young adults with childhood-onset chronic illness.

PubMed

Maslow, Gary; Haydon, Abigail A; McRee, Annie-Laurie; Halpern, Carolyn T

2012-08-01

Youth with childhood-onset chronic illness (COCI) are at risk of poor educational attainment. Specific protective factors that promote college graduation in this population have not been studied previously. In this study, we examine the role protective factors during adolescence play in promoting college graduation among young adults with COCI. Data were collected from 10,925 participants in the National Longitudinal Study of Adolescent Health (Add Health). Protective factors present before 18 years of age included mentoring, parent relationship quality, school connectedness, and religious attendance. College graduation was the outcome of interest assessed when participants had a mean age of 28 years. Analysis was stratified by presence of COCI. About 2% of participants (N = 230) had 1 of 4 COCIs (cancer, diabetes, epilepsy, or heart disease). All 4 protective factors were associated with college graduation for youth without COCI. In the final multivariate model, only school connectedness was associated with college graduation for youth with COCI. School connectedness is of particular importance in promoting educational attainment for youth with COCI. © 2012, American School Health Association.

Puppy Love, Adolescence, and Chronic Illness: The Importance of Pets for Youth with Type 1 Diabetes.

PubMed

Walker, Ashby F; Johnson, Cathryn; Schatz, Desmond A; Silverstein, Janet H; Rohrs, Henry J

2015-05-01

The benefits of animal-companion ties to well-being are consistently documented, yet few studies use patient-centered methodologies to examine how youth living with chronic illnesses rely on domestic pets for support. Youth with type 1 diabetes (T1D) aged 12 to 19 years (N=40) completed surveys involving a prompt to take five photos of "what diabetes means to you," with an accompanying narrative. Content analysis was conducted for photos/narratives and numeric variables analyzed including socio-economic status (SES: measured by total household income and years of parental education) and HbA1C. More than half of the youth participants took pictures of coping mechanisms, including pictures of their pets. In fact, pictures of pets outnumbered pictures of people three to one. Pet depictions were captured by youth from all SES levels. Youth with T1D identify pets as an important source of support. More research is needed to understand how pets may offset disease burden for youth with T1D.

Evaluation of a family systems intervention for managing pediatric chronic illness: Mastering Each New Direction (MEND).

PubMed

Distelberg, Brian; Williams-Reade, Jackie; Tapanes, Daniel; Montgomery, Susanne; Pandit, Mayuri

2014-06-01

Family systems play a crucial, albeit complex, role in pediatric chronic illness. Unfortunately, very few psychosocial interventions are available to help these stressed families navigate the developmental steps of chronic illness. A new intervention (MEND) addresses the needs of these families and applies to a broad range of chronic illnesses. This article presents this family systems intervention as well as includes preliminary program evaluation data on 22 families that graduated from the program. Results show consistently strong effects across an array of psychosocial measures. Conclusions from this preliminary study suggest that families entering MEND present with high levels of stress due to the child's chronic illness, but after MEND, the level of stress and other functioning measures are comparable to those seen in healthy families, suggesting that the program offers a significant benefit to families with pediatric chronic illness. © 2014 FPI, Inc.

Evaluation of a Family Systems Intervention for Managing Pediatric Chronic Illness: Mastering Each New Direction (MEND)

PubMed Central

Distelberg, Brian; Williams-Reade, Jackie; Tapanes, Daniel; Montgomery, Susanne; Pandit, Mayuri

2015-01-01

Family systems play a crucial, albeit complex, role in pediatric chronic illness. Unfortunately, very few psychosocial interventions are available to help these stressed families navigate the developmental steps of chronic illness. A new intervention (MEND) addresses the needs of these families and applies to a broad range of chronic illnesses. This article presents this family systems intervention as well as includes preliminary program evaluation data on 22 families that graduated from the program. Results show consistently strong effects across an array of psychosocial measures. Conclusions from this preliminary study suggest that families entering MEND present with high levels of stress due to the child's chronic illness, but after MEND, the level of stress and other functioning measures are comparable to those seen in healthy families, suggesting that the program offers a significant benefit to families with pediatric chronic illness. PMID:24635346

Chronic Illnesses and Depressive Symptoms Among Older People: Functional Limitations as a Mediator and Self-Perceptions of Aging as a Moderator.

PubMed

Han, Jina

2017-05-01

This research examined the mediation of functional limitations in the relationship between chronic illnesses and depressive symptoms among older Americans along with tests for the moderation of self-perceptions of aging. Data from the Health and Retirement Study (2008, 2010, and 2012) were used. Longitudinal mediation models were tested using a sample of 3,382 Americans who responded to psychosocial questions and were over 65 years old in 2008. Functional limitations mediated the linkage between chronic illnesses and depressive symptoms. Negative self-perceptions of aging exacerbated the effects of chronic illnesses on depressive symptoms. Health care professionals should be aware of depressive symptoms in older adults reporting chronic illnesses and particularly in those reporting functional limitations. To decrease the risk of depressive symptoms caused by chronic illnesses, negative self-perceptions of aging may need to be challenged.

The nature of youth care tasks in families experiencing chronic illness/disability: development of the Youth Activities of Caregiving Scale (YACS).

PubMed

Ireland, Michael James; Pakenham, Kenneth Ian

2010-07-01

The purpose of this study was to develop an empirically derived multi-item scale of care tasks performed by young people in the context of family illness/disability: the Youth Activities of Caregiving Scale (YACS). A total of 135 youngsters aged 10-24 years with an ill/disabled family member completed questionnaires. Factor analyses performed on the YACS yielded four factors, instrumental care, social/emotional care, personal/intimate care and domestic/household care, accounting for 57.78% of the variance. The internal reliabilities of all factors ranged from 0.74 to 0.92. Higher scores on the YACS related to higher youth age and several caregiving context variables (i.e. household type [single or dual-parent household], relationship with care-recipient and perceived choice in caregiving). Higher scores on the YACS also related to care-recipient illness/disability variables (onset, functional impairment, prognosis, predictability and illness/disability type). Strong positive correlations between the YACS and a conceptually related measure of young caregiving experiences provided good convergent validity data. Criterion validity was established with evidence that the YACS predicted youth adjustment in the domains of health and prosocial behaviour.

Reflections of Adults on Their School Experiences Growing up with a Severely Mentally Ill Parent

ERIC Educational Resources Information Center

Leahy, Marie A.

2013-01-01

More than five million children in the United States have a parent suffering from a severe mental illness and these children have specific experiences and needs, particularly in school. Children of mentally ill parents are at greater risk of being neglected and of developing psychological, social, emotional, and behavioral problems. They often…

Parents, Mental Illness, and the Primary Health Care of Infants and Young Children.

ERIC Educational Resources Information Center

Fenichel, Emily, Ed.

1993-01-01

This bulletin issue contains five papers on the theme of adults with mental illness who are parents of very young children. "Parents, Mental Illness, and the Primary Health Care of Infants and Young Children" (John N. Constantino) offers the experience of a trainee in a combined residency in pediatrics and psychiatry, focusing on…

Substance Abuse in Children of Parents with Mental Illness: Risks, Resiliency, and Best Prevention Practices.

ERIC Educational Resources Information Center

Mowbray, Carol T.; Oyserman, Daphna

2003-01-01

Reviews published research on the effects of parental mental illness diagnosis or symptoms on childhood substance abuse. Risk and protective factors for developing a substance use or related disorder in these children are summarized. Recommendations for substance abuse prevention in children of parents with mental illness are presented and used to…

The Challenge of Caring for Mildly Ill Children: A Canadian National Childcare Study

ERIC Educational Resources Information Center

Polyzoi, E.; Babb, J.C.

2004-01-01

This Canadian study of the care of mildly ill children in licensed childcare facilities compares director and parent preferences for eight models of care, exclusionary practices for ill children by directors, and preferred backup care options of parents. It also investigates anticipated usage and willingness of parents to pay for emergency…

Social behaviour and illness information interact to influence the peer acceptance of children with chronic illness.

PubMed

Alderfer, M A; Wiebe, D J; Hartmann, D P

2001-09-01

Social behaviour was investigated as a contributor to the peer acceptance of children with chronic illness. We predicted that children with illness would receive less acceptance than children without illness, and that prosocial behaviour would improve acceptance, while aggressive behaviour would hamper it. Based upon attribution and cognitive bias theories, we also predicted that prosocial behaviour would be more beneficial and aggressive behaviour less damaging to the acceptance of children with illness compared to healthy children. A 3 (social behaviour: prosocial, aggressive, no information) x 2 (physical status: chronically ill, healthy) within-subjects analogue design was used. Preadolescents (N = 149) indicated social acceptance of hypothetical children portrayed in vignettes as either chronically ill or healthy with prosocial, aggressive, or no social behaviour. A 13-item social intentions scale gauged acceptance. The hypotheses were supported. Although children described as ill received lower acceptance ratings than healthy children, prosocial/ill children were more accepted than aggressive/ill children. Social behaviour interacted with physical status to affect acceptance. Social behaviour influences the peer acceptance of hypothetical children with chronic illness. Prosocial behaviour enhances acceptance of children described with illness, while aggressive behaviour hampers it. Additionally, prosocial behaviour is more beneficial, and aggressive behaviour is less damaging for children described as ill versus healthy. The potential processes by which peers judge acceptance of children with illness are discussed.

Parenting a child with chronic illness as they transition into adulthood: A systematic review and thematic synthesis of parents' experiences.

PubMed

Heath, Gemma; Farre, Albert; Shaw, Karen

2017-01-01

To understand how parents view and experience their role as their child with a long-term physical health condition transitions to adulthood and adult healthcare services. Five databases were systematically searched for qualitative articles examining parents' views and experiences of their child's healthcare transition. Papers were quality assessed and thematically synthesised. Thirty-two papers from six countries, spanning a 17-year period were included. Long-term conditions were diverse. Findings indicated that parents view their child's progression toward self-care as an incremental process which they seek to facilitate through up-skilling them in self-management practices. Parental perceptions of their child's readiness, wellness, competence and long-term condition impacted on the child' progression to healthcare autonomy. A lack of transitional healthcare and differences between paediatric and adult services served as barriers to effective transition. Parents were required to adjust their role, responsibilities and behaviour to support their child's growing independence. Parents can be key facilitators of their child's healthcare transition, supporting them to become experts in their own condition and care. To do so, they require clarification on their role and support from service providers. Interventions are needed which address the transitional care needs of parents as well as young people. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

Suicidal Behaviour Among Adolescents and Young Adults with Self-Reported Chronic Illness.

PubMed

Ferro, Mark A; Rhodes, Anne E; Kimber, Melissa; Duncan, Laura; Boyle, Michael H; Georgiades, Katholiki; Gonzalez, Andrea; MacMillan, Harriet L

2017-12-01

The aims of this study were to estimate the: (1) 12-mo prevalence of suicidal thoughts, plans, and attempts in a population sample of adolescents and young adults with and without chronic illness; (2) associations among chronic illness and suicidal thoughts and behaviour (STB); and, (3) moderating roles of mood and substance use disorder on this association. Individuals were aged 15 to 30 y ( n = 5,248) from the Canadian Community Health Survey-Mental Health. Twelve-month STB and psychiatric disorder were measured using the World Health Organization Composite International Diagnostic Interview 3.0. Multinomial logistic regression examined associations between chronic illness and STB, adjusting for relevant sociodemographic and health characteristics. Product term interactions among chronic illness, mood, and substance use disorders were included in the regression models to examine potential moderating effects. Prevalence of suicidal thoughts, plans, and attempts was higher in individuals with chronic illness ( P < 0.01 for all). After adjustment, chronic illness increased the odds for suicidal thoughts [OR = 1.28 (1.01 to 1.64)], plans [OR = 2.34 (1.22 to 4.39)], and attempts [OR = 4.63 (1.52 to 14.34)]. In the presence v. absence of a mood disorder, the odds for suicidal thoughts were higher among individuals with chronic illness [OR = 1.89 (1.06 to 5.28)]. Suicidal thoughts and behaviours are common among adolescents and young adults with chronic illness, particularly among those with comorbid mood disorders. Health professionals should routinely ask about STB during assessments of their adolescent and young adult patients.

A comparison of the emotional and behavioral problems of children of patients with cancer or a mental disorder and their association with parental quality of life.

PubMed

Krattenmacher, Thomas; Kühne, Franziska; Halverscheid, Susanne; Wiegand-Grefe, Silke; Bergelt, Corinna; Romer, Georg; Möller, Birgit

2014-03-01

To compare the emotional and behavioral problems of children of patients suffering from cancer or a mental disorder and their association with parental quality of life. A total of 223 children from 136 families and their 160 parents were investigated from multiple perspectives in a cross-sectional study. The consistency of different adjustment reports between family members was examined. Through mixed models, the differences between parental HRQoL and the children's symptomatology were studied with regard to the type of parental illness. The prediction of children's adjustment through parental HRQoL was further examined. Additionally, gender and age of the children were considered. Half of the children exhibited psychosocial problems. Gender and age differences were independent of the type of parental disease. In families with parental cancer, the reports of children's adjustment were more consistent between family members than in families where a parental mental disorder was present. We found differences in HRQoL between families with mentally ill parents and those with parental cancer patients. Specifically, the healthy partners of mentally ill parents showed worse HRQoL compared with healthy partners of cancer patients. Healthy parents' reduced HRQoL was associated with worse adjustment in their children, regardless of the type of parental illness, but this result was not found for ill parents. Family members confronted with parental cancer or mental disorders are more burdened compared with those from the "normal" population, independently of the type of disease. Our results indicate that the type of a parental disease has no direct effect on children's adjustment. However, there are disease-specific effects on parental HRQoL, which are associated with children's adjustment. Copyright © 2013 Elsevier Inc. All rights reserved.

The eHealth Enhanced Chronic Care Model: A Theory Derivation Approach

PubMed Central

Greenwood, Deborah A; Paterniti, Debora A; Ward, Deborah; Miller, Lisa M Soederberg

2015-01-01

Background Chronic illnesses are significant to individuals and costly to society. When systematically implemented, the well-established and tested Chronic Care Model (CCM) is shown to improve health outcomes for people with chronic conditions. Since the development of the original CCM, tremendous information management, communication, and technology advancements have been established. An opportunity exists to improve the time-honored CCM with clinically efficacious eHealth tools. Objective The first goal of this paper was to review research on eHealth tools that support self-management of chronic disease using the CCM. The second goal was to present a revised model, the eHealth Enhanced Chronic Care Model (eCCM), to show how eHealth tools can be used to increase efficiency of how patients manage their own chronic illnesses. Methods Using Theory Derivation processes, we identified a “parent theory”, the Chronic Care Model, and conducted a thorough review of the literature using CINAHL, Medline, OVID, EMBASE PsychINFO, Science Direct, as well as government reports, industry reports, legislation using search terms “CCM or Chronic Care Model” AND “eHealth” or the specific identified components of eHealth. Additionally, “Chronic Illness Self-management support” AND “Technology” AND several identified eHealth tools were also used as search terms. We then used a review of the literature and specific components of the CCM to create the eCCM. Results We identified 260 papers at the intersection of technology, chronic disease self-management support, the CCM, and eHealth and organized a high-quality subset (n=95) using the components of CCM, self-management support, delivery system design, clinical decision support, and clinical information systems. In general, results showed that eHealth tools make important contributions to chronic care and the CCM but that the model requires modification in several key areas. Specifically, (1) eHealth education is critical for self-care, (2) eHealth support needs to be placed within the context of community and enhanced with the benefits of the eCommunity or virtual communities, and (3) a complete feedback loop is needed to assure productive technology-based interactions between the patient and provider. Conclusions The revised model, eCCM, offers insight into the role of eHealth tools in self-management support for people with chronic conditions. Additional research and testing of the eCCM are the logical next steps. PMID:25842005

Illness Identity in Adults with a Chronic Illness.

PubMed

Oris, Leen; Luyckx, Koen; Rassart, Jessica; Goubert, Liesbet; Goossens, Eva; Apers, Silke; Arat, Seher; Vandenberghe, Joris; Westhovens, René; Moons, Philip

2018-02-21

The present study examines the concept of illness identity, the degree to which a chronic illness is integrated into one's identity, in adults with a chronic illness by validating a new self-report questionnaire, the Illness Identity Questionnaire (IIQ). Self-report questionnaires on illness identity, psychological, and physical functioning were assessed in two samples: adults with congenital heart disease (22-78 year old; n = 276) and with multisystem connective tissue disorders (systemic lupus erythematosus or systemic sclerosis; 17-81 year old; n = 241). The IIQ could differentiate four illness identity states (i.e., engulfment, rejection, acceptance, and enrichment) in both samples, based on exploratory and confirmatory factor analysis. All four subscales proved to be reliable. Rejection and engulfment were related to maladaptive psychological and physical functioning, whereas acceptance and enrichment were related to adaptive psychological and physical functioning. The present findings underscore the importance of the concept of illness identity. The IIQ, a self-report questionnaire, is introduced to measure four different illness identity states in adults with a chronic illness.

Paediatric eczema and psychosocial morbidity: how does eczema interact with parents' illness beliefs?

PubMed

Walker, C; Papadopoulos, L; Hussein, M

2007-01-01

Thus far there has been relatively little work on children's illness representations regarding eczema and how these relate to parental conceptualizations of their child's psychosocial health. This is important because the challenge of raising a child with a serious illness can affect many facets of a parent's everyday life and the behaviour of parents can be closely related to the health of the child. Two hundred and thirty-two children with eczema, asthma, eczema and asthma, and healthy controls between 7 and 12 years of age and their parents were recruited. Children were administered the Children's Illness Perception Questionnaire. Questionnaires completed by the parents were The Personality Inventory for Children and The Parental Stress Inventory. Parents of children with eczema did not judge their children to have poorer psychosocial health than controls, but parents of children with eczema could not be distinguished between in terms of whether their child was significantly affected by their eczema or not. This work could have important implications for the quality of life of the child and for the parent-child relationship and these implications are considered.

The Impact of Chronic Illness on Psychosocial Stages of Human Development.

ERIC Educational Resources Information Center

Lapham, E. Virginia, Ed.; Shevlin, Kathleen M., Ed.

This book addresses critical issues regarding the impact of chronic illness and disability on human development. It was written for health care professionals who help chronically ill and disabled persons deal with the psychological and social as well as the biological aspects of their illness or disability. An expanded version of Erik Erikson's…

Chronic illness histories of adults entering treatment for co-occurring substance abuse and other mental health disorders.

PubMed

Chesher, Nicholas J; Bousman, Chad A; Gale, Maiken; Norman, Sonya B; Twamley, Elizabeth W; Heaton, Robert K; Everall, Ian P; Judd, Patricia A

2012-01-01

Little is known about the medical status of individuals entering treatment for co-occurring substance abuse and other mental disorders (COD). We analyzed the medical histories of 169 adults entering outpatient treatment for CODs, estimating lifetime prevalence of chronic illness and current smoking, comparing these rates to the general population, and examining psychiatric and substance-related correlates of chronic illness. Results revealed significantly higher prevalence of hypertension, asthma, arthritis, and smoking compared to the general US population, and showed an association between chronic illness and psychiatric symptom distress and substance use severity. Findings support integration of chronic illness management into COD treatment.  Copyright © American Academy of Addiction Psychiatry.

The utilization of fluoride varnish and its determining factors among Taiwanese preschool children.

PubMed

Tsai, Wen-Chen; Kung, Pei-Tseng; Weng, Rhay-Hung; Su, Hsun-Pi

2016-08-01

The Taiwanese government considers fluoride varnish to be a major component of preventive dental cares for preschool children. This study aimed to explore the extent of utilization of fluoride varnish and its determining factors among Taiwanese preschool children. Using preschool children under the age of 5 years as our participants, this study was conducted based on the 2008 Taiwan database of the Ministry of the Interior, linked with information gathered between 2006 and 2008 on preventive healthcare and health insurance from the Bureau of Health Promotion and the National Health Research Institute. A total of 949,023 preschool children (< 5 years old) were identified to meet the requirement for fluoride varnish services. The percentage of Taiwanese preschool children that used fluoride varnish was 34.85%.The probability that fluoride varnish would be utilized was higher among children with catastrophic illness/injury or relevant chronic illnesses than those without. In addition, the probability of children with disabilities using fluoride varnish was lower than that of nondisabled children. Finally, parent sex, parent age, urbanization level of residence, and parents' premium-based salary significantly affected the children's utilization probability of fluoride varnish. In order to increase the utilization of fluoride varnish among preschool children in Taiwan in the future, target groups consisting of females, children < 3 years of age, and disabled children should be prioritized. Parental factors are also important in affecting the utilization of fluoride varnish in children. Copyright © 2016. Published by Elsevier Taiwan LLC.

"Hopefully This Will All Make Sense at Some Point": Meaning and Performance in Illness Blogs.

PubMed

Heilferty, Catherine McGeehin

To analyze the narratives of illness blogs created by parents of children with cancer. The profound effects of the childhood cancer experience on family members and the turn to the Internet by parents for help in the process are gaining research attention. The qualitative study design involved secondary narrative analysis of 14 illness blogs: 9 by the parents of children with neuroblastoma and 5 by the parents of children with leukemia. Daily blog entries were analyzed as individual units of illness experience expression and in relation to one another to identify thematic and linguistic similarities. The initial analysis of these illness blogs resulted in identification of the quest for balance as a primary theme. Narratives in parents' childhood cancer illness blogs illustrated themes of performance. During this initial analysis, however, the author repeatedly asked, "Why are they writing this? And why publish this?" A second analysis of the data answered these questions of why parents blog about the experience. Narrative analysis resulted in the discovery of 6 main reasons that parents wrote and published the childhood cancer experience online: to report, explain, express, reflect, archive, and advocate. The analysis suggests that incorporation of parent writing may improve family--provider communication, enhance the family-health care professional relationship, enhance safety by preventing medical errors, improve reporting of clinical trial data such as adverse events, and improve satisfaction.

Families living with chronic illness: beliefs about illness, family, and health care.

PubMed

Årestedt, Liselott; Benzein, Eva; Persson, Carina

2015-05-01

Beliefs can be described as the lenses through which we view the world. With emerging illness, beliefs about the illness experience become important for nurses to understand to enhance well-being and healing. The aim of this study was to illuminate illness beliefs of families living with chronic illness. A qualitative design was chosen, including repeated narrative research interviews with seven Swedish families living with chronic illness. Hermeneutic analysis was used to interpret the transcribed family interviews. The result described beliefs in families, both within and across families. Both core beliefs and secondary beliefs about illness, family, and health care were revealed. Illness beliefs have importance for how families respond to and manage situations that arise from their encounters with illness. Nurses have to make space for and listen to families' stories of illness to become aware of what beliefs may support and encourage family well-being and healing. The Illness Beliefs Model provides a touchstone whereby nurses can distinguish both individual and shared beliefs within families living with chronic illness and provide ideas for family intervention if needed. © The Author(s) 2015.

The SMILES program: a group program for children with mentally ill parents or siblings.

PubMed

Pitman, Erica; Matthey, Stephen

2004-07-01

The Simplifying Mental Illness + Life Enhancement Skills program, for children with a mentally ill parent or sibling, is a 3-day program that aims to increase children's knowledge of mental illness and to better equip them with life skills considered beneficial for coping in their family. Self-report data from 25 children who attended 3 of these programs, in Canada and Australia, indicate that these aims were achieved. Their parents also report benefits for their children.

Parenthood and severe mental illness: relationships with recovery.

PubMed

Bonfils, Kelsey A; Adams, Erin L; Firmin, Ruth L; White, Laura M; Salyers, Michelle P

2014-09-01

Parenting is an important life domain for many people, but little research examines the parenting experience and its role in recovery for those with a severe mental illness. The current study provides preliminary evidence of how these concepts are related in a sample of individuals living with severe mental illness attending a community mental health center. We also explored potential differences between mothers and fathers, which could help better tailor services to meet the needs of parents with severe mental illness. Data were obtained during baseline interviews for a study testing an intervention designed to increase shared decision making in psychiatric treatment. Participants (N = 167) were administered measures of patient activation, recovery, autonomy preference, hope, and trust in providers. We compared parents and nonparents and compared mothers and fathers using chi-square tests, t tests, and, when appropriate, analysis of covariance. Parents had a significantly higher level of trust in their psychiatric care provider than nonparents. Contrary to hypotheses, parents were less active in their treatment and preferred less information-seeking autonomy than did nonparents, but did not differ on other recovery-related indices. No differences on recovery-related indices were detected between mothers and fathers. Secondary analyses revealed parents with minor children had more hope than parents of older children. Although parents may have higher levels of trust in their physicians, our preliminary findings suggest that parents with severe mental illness may benefit from increased efforts to help them be more active and interested in information about their illnesses. (PsycINFO Database Record (c) 2014 APA, all rights reserved).

[Social Networks of Children with Mentally Ill Parents].

PubMed

Stiawa, Maja; Kilian, Reinhold

2017-10-01

Social Networks of Children with Mentally Ill Parents Mental illness of parents can be a load situation for children. Supporting social relations might be an important source in such a situation. Social relations can be shown by social network analysis. Studies about social networks and mental health indicate differences regarding structure and potential for support when compared with social networks of healthy individuals. If and how mental illness of parents has an impact on their children's network is widely unknown. This systematic review shows methods and results of studies about social networks of children with mentally ill parents. By systematic search in electronic databases as well as manual search, two studies were found who met the target criteria. Both studies were conducted in the USA. Results of studies indicate that parental mental illness affects the state of mental health and social networks of children. Symptomatology of children changed due to perceived social support of network contacts. Impact of social support and strong network contacts seems to depend on age of children and the family situation. That's why support offers should be adapt to children's age. Focusing on social networks as potential resource for support and needs of the family affected seems appropriate during treatment.

Shared Decision-Making with Parents of Acutely Ill Children: A Narrative Review.

PubMed

Aronson, Paul L; Shapiro, Eugene D; Niccolai, Linda M; Fraenkel, Liana

Shared decision-making (SDM) has mostly been used with adults and parents in the primary care setting, and there is limited knowledge on the use of SDM with parents of acutely ill children. The objective of this study was to review the literature on SDM with parents in the management of acutely ill children. We searched MEDLINE, SCOPUS, PsycINFO, the Cochrane Library, and ClinicalTrials.gov for English language studies published from the time of database inception to February, 2017. Study eligibility criterion was use of SDM with parents for children aged 18 years or younger with an acute medical problem. We identified 2 ongoing clinical trials and 10 published studies that met inclusion criteria: 2 using hypothetical SDM scenarios, 1 mixed methods study, and 7 intervention studies. Only 1 study compared an SDM intervention with usual care in a randomized controlled trial. The limited literature shows that parents of acutely ill children have differing preferences for testing and/or treatment, and that they generally want the opportunity to express those preferences through an SDM process. Use of SDM often results in acutely ill children undergoing fewer and/or less intensive testing or treatment, although the effect on outcomes is unclear. Parents welcome participation in SDM for management decisions with their acutely ill child. Further investigation is needed to determine how best to implement SDM with parents of acutely ill children and to assess the effect of SDM on outcomes. Copyright © 2017 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.

Medicaid programme changes and the chronically ill: early results from a prospective cohort study of the Oregon Health Plan.

PubMed

Solotaroff, Rachel; Devoe, Jennifer; Wright, Bill J; Smiths, Jeanene; Boone, Janne; Edlund, Tina; Carlson, Matthew J

2005-09-01

To describe the impacts of recent Oregon Health Plan (OHP) policy changes on individuals living with chronic illness in Oregon. A mail survey was conducted of 1374 OHP beneficiaries who were directly affected by the new policies. The analyses reported in this article represent baseline findings from the first of three survey waves in an ongoing prospective cohort study. A significant association was found between Medicaid policy changes and high rates of disenrolment from the OHP. Compared to the non-chronically ill, the chronically ill were more likely to report inability to pay for medications, higher medical debt, more unmet health needs, and poorer health status. Among the chronically ill, those who lost insurance reported decreased access to and utilization of healthcare, more medical debt, and more restriction of medications. As policy-makers restructure public programmes to accommodate tight budgets and rising healthcare costs, people with chronic illness can easily be overlooked. Chronically ill individuals face disproportionate financial and health burdens. Small cost-saving policy changes can lead to widespread disenrolment that cascades into reduced access to healthcare services, altered utilization patterns, and financial strain.

Co-occurring mental illness and health care utilization and expenditures in adults with obesity and chronic physical illness.

PubMed

Shen, Chan; Sambamoorthi, Usha; Rust, George

2008-06-01

The objectives of the study were to compare health care expenditures between adults with and without mental illness among individuals with obesity and chronic physical illness. We performed a cross-sectional analysis of 2440 adults (older than age 21) with obesity using a nationally representative survey of households, the Medical Expenditure Panel Survey. Chronic physical illness consisted of self-reported asthma, diabetes, heart disease, hypertension, or osteoarthritis. Mental illness included affective disorders; anxiety, somatoform, dissociative, personality disorders; and schizophrenia. Utilization and expenditures by type of service (total, inpatient, outpatient, emergency room, pharmacy, and other) were the dependent variables. Chi-square tests, logistic regression on likelihood of use, and ordinary least squares regression on logged expenditures among users were performed. All regressions controlled for gender, race/ethnicity, age, martial status, region, education, employment, poverty status, health insurance, smoking, and exercise. All analyses accounted for the complex design of the survey. We found that 25% of adults with obesity and physical illness had a mental illness. The average total expenditures for obese adults with physical illness and mental illness were $9897; average expenditures were $6584 for those with physical illness only. Mean pharmacy expenditures for obese adults with physical illness and mental illness and for those with physical illness only were $3343 and $1756, respectively. After controlling for all independent variables, among adults with obesity and physical illness, those with mental illness were more likely to use emergency services and had higher total, outpatient, and pharmaceutical expenditures than those without mental illness. Among individuals with obesity and chronic physical illness, expenditures increased when mental illness is added. Our study findings suggest cost-savings efforts should examine the reasons for high utilization and expenditures for those with obesity, chronic physical illness, and mental illness.

Health related quality of life and emotional health in children with chronic granulomatous disease: a comparison of those managed conservatively with those that have undergone haematopoietic stem cell transplant.

PubMed

Cole, Theresa; McKendrick, Fiona; Titman, Penny; Cant, Andrew J; Pearce, Mark S; Cale, Catherine M; Goldblatt, David; Gennery, Andrew R

2013-01-01

Chronic Granulomatous Disease (CGD) is a rare primary immunodeficiency that predisposes to life-threatening infections and inflammation. Haematopoietic stem cell transplant (HSCT) can cure CGD. Chronic illness reduces quality of life. Children with haematological malignancies report improved quality of life post-HSCT. There are no data for children with CGD. This study evaluated quality of life and emotional well-being in CGD children treated conventionally or transplanted. Parents and children completed the Pediatric Quality of Life Inventory v4.0 (PedsQL) and Strengths and Difficulties Questionnaires (SDQ). Mean scores were compared with published UK norms. Comparisons were made for those that had or had not undergone HSCT. Forty-seven parents completed PedsQL (children aged 3-15). Twenty-one were post-HSCT. Forty-two completed SDQ (children aged 3-15). Nineteen post-HSCT. Median age for non-HSCT group 9 years. Median age for post-HSCT group 10 years. The HSCT group were median 3 years post-HSCT (range 1-9 years). HSCT survival was 90 %-two died without completing questionnaires Parent and self-reported quality of life for non-transplanted children was significantly lower than healthy children. Parents reported increased emotional difficulties compared to published norms. PedsQL and SDQ scores for transplanted children were not significantly different from healthy norms. This study demonstrates the quality of life is reduced in CGD. Transplanted patients have quality of life comparable to levels reported in healthy children. This data will help inform families and clinicians when deciding about treatment and may have relevance for other immunodeficiencies treated with transplant.

A qualitative study examining health literacy and chronic illness self-management in Hispanic and non-Hispanic older adults

PubMed Central

Jacobs, Robin J; Ownby, Raymond L; Acevedo, Amarilis; Waldrop-Valverde, Drenna

2017-01-01

Purpose Chronic illness and low levels of health literacy affect health outcomes for many individuals, particularly older adults and racial/ethnic minorities. This study sought to understand the knowledge, strengths, and areas of need regarding self-management of chronic illness in order to lay the groundwork for content development of an intervention to increase health literacy and maximize patient engagement in chronic disease self-care. Patients and methods In-depth, qualitative interviews were conducted in Spanish and English with 25 older adults with various chronic illnesses. Topics included knowledge and understanding of chronic conditions, medications, and disease self-management skills. Qualitative data were coded by searching text and conducting cross-case analysis. An inductive analysis was then employed to allow for the patterns and themes to emerge. Results Emerged themes included 1) social support, 2) coping strategies, 3) spirituality, 4) chronic disease health literacy, 5) anger, and 6) depression. While participants had a general overall knowledge of chronic illness, they had deficits in knowledge regarding their own illnesses and medications. Conclusion Chronic illness self-management is a complex and dynamic behavioral process. This study identified themes that leverage patient motivation to engage in self-care in a personalized manner. This information will guide the development of an intervention to promote health literacy and optimal disease self-management. PMID:28461754

Perceived Stress in Chronic Illness: A Comparative Analysis of Four Diseases.

ERIC Educational Resources Information Center

Revenson, Tracey A.; Felton, Barbara J.

Most studies of stress and coping processes among patients with serious illnesses have focused on acute illness states. Far less research has involved systematic examination of the types and frequency of illness-related stresses experienced by individuals living with chronic illness. To compare the nature and degree of illness-related stress posed…

Living with a chronic illness - reaching out to others

MedlinePlus

... ency/patientinstructions/000602.htm Living with a chronic illness - reaching out to others To use the sharing ... illness. Talk with People Who Have the Same Illness Sharing with and learning from people who have ...

A Tool for Tracking and Assessing Chronic Illness Care in Prison (ACIC-P)

PubMed Central

Wang, Emily A.; Aminawung, Jenerius A.; Ferguson, Warren; Trestman, Robert; Wagner, Edward H.; Bova, Carol

2014-01-01

Chronic disease care is being transformed in correctional settings, given an aging inmate population, ongoing quality improvement efforts, litigation, and rising costs. The Chronic Care Model, established for chronic disease care in the community, might be a suitable framework to transform chronic disease care in prison, but it has not been systematically adapted for the correctional health care setting. We employed cognitive interviewing to adapt an extant survey used to measure the delivery of chronic illness care in the community, Assessment of Chronic Illness Care, for a prison setting. Results from the cognitive interviews and the modified Assessment of Chronic Illness Care–Prison (ACIC-P) instrument are presented in this article. Future studies will need to test the reliability and psychometric properties of the adapted ACIC-P. PMID:25117427

Unmet needs in young adults with a parent with a chronic condition: a mixed-method investigation and measure development study.

PubMed

Nicholls, Wendy; Patterson, Pandora; McDonald, Fiona E J; Hulbert-Williams, Nicholas J

2017-03-01

Given the high number of young adults caring for a family member, and the potential for adverse psychosocial outcomes, there is a need for a screening tool, with clinical utility, to identify those most vulnerable to poor outcomes and to aid targeted interventions. (i) To determine whether current knowledge from cancer literature regarding young carers is generalisable to chronic conditions and, therefore, whether an existing screening tool could be adapted for this population. (ii) To develop a measure of unmet needs in this population and conduct initial psychometric analysis. This was mixed method; interviews in study one informed measure development in study two. Inclusion criteria were as follows: having a parent with a chronic condition and being aged 16-24 years. In study 1, an interpretative phenomenological analysis was conducted on interviews from seven young adults (age range 17-19 years). Study 2 explored factor structure, reliability and validity of the Offspring Chronic Illness Needs Inventory (OCINI). Participants were 73 females and 34 males (mean ages 18.22, SD = 1.16; 18.65, SD = 1.25). OCINI, Depression Anxiety and Stress Scale, and the Adult Carers Quality of Life Scale. Interviews communicated that the impact of their parent's condition went unacknowledged and resulted in psychosocial, support and informational needs. An exploratory principal axis analysis of the OCINI yielded five factors. Significant and positive correlations were found between unmet needs and stress, anxiety, and depression, and inversely with quality of life. The scale has applications in clinical settings where these young people, who are at risk of negative psychological outcomes, may be assessed and unmet needs targeted appropriately. © 2016 Nordic College of Caring Science.

Homoeopathy: 3. Everyday uses for all the family.

PubMed

Kaplan, B

1994-10-01

Homoeopathy is a useful and safe therapeutic tool for all the family but cannot totally replace conventional medicine. It has a place in most chronic diseases; a tendency to recurrent attacks of acute illnesses; and acute conditions not treatable by conventional medicine or where the patient or parent wishes to avoid conventional drugs. The homoeopathic consultation involves a "whole person" approach and involves listening to the patient. Several homoeopathic remedies are suitable for the family medicine chest, eg. Arnica for bruising. Chamomilla for teething and Calendula cream for grazes and scalds.

Responding to Students' Chronic Illnesses

ERIC Educational Resources Information Center

Shaw, Steven R.; Glaser, Sarah E.; Stern, Melissa; Sferdenschi, Corina; McCabe, Paul C.

2010-01-01

Chronic illnesses are long-term or permanent medical conditions that have recurring effects on everyday life. Large and growing number of students have chronic illnesses that affect their emotional development, physical development, academic performance, and family interactions. The primary error in educating those students is assuming that the…

Parents with serious mental illness: differences in internalised and externalised mental illness stigma and gender stigma between mothers and fathers.

PubMed

Lacey, Melanie; Paolini, Stefania; Hanlon, Mary-Claire; Melville, Jessica; Galletly, Cherrie; Campbell, Linda E

2015-02-28

Research demonstrates that people living with serious mental illness (SMI) contend with widespread public stigma; however, little is known about the specific experiences of stigma that mothers, and in particular fathers, with SMI encounter as parents. This study aimed to explore and compare the experiences of stigma for mothers and fathers with SMI inferred not only by living with a mental illness but also potential compounding gender effects, and the associated impact of stigma on parenting. Telephone surveys were conducted with 93 participants with SMI who previously identified as parents in the Second Australian National Survey of Psychosis. Results indicated that mothers were more likely than fathers to perceive and internalise stigma associated with their mental illness. Conversely, fathers were more inclined to perceive stigma relating to their gender and to hold stigmatising attitudes towards others. Mental illness and gender stigma predicted poorer self-reported parenting experiences for both mothers and fathers. These findings may assist in tailoring interventions for mothers and fathers with SMI. Copyright © 2014 Elsevier Ireland Ltd. All rights reserved.

Normalization behaviours of rural fathers living with chronically-ill children: an Australian experience.

PubMed

Peck, Blake; Lillibridge, Jennifer

2005-03-01

This article reports findings from a larger qualitative study conducted to gain insight into the experience of fathers living with their chronically-ill children in rural Victoria, Australia. Data were collected via unstructured interviews with four fathers. The findings presented in this article explore the phenomena of normalization for fathers within the chronic illness experience. Fathers described normalizing the experience of living with their chronically-ill child as involving a combination of various coping strategies and behaviours including: (1) accepting the child's condition, (2) changing expectations, (3) focusing energies on a day-to-day basis, (4) minimizing knowledge-seeking behaviours, and (5) engaging in external distraction activities. Findings highlight the complex and unique normalization strategies these men utilized and contribute to knowledge and understanding of the complex nature of raising a chronically-ill child in rural Australia and provide a sound basis upon which to guide an ongoing and holistic assessment of fathers with chronically-ill children.

Coping with the Personal Loss of Having a Parent with Mental Illness: Young Adults' Narrative Accounts of Spiritual Struggle and Strength

ERIC Educational Resources Information Center

Maunu, Aleisha; Stein, Catherine H.

2010-01-01

The present study examines the personal accounts of nine young adults who have parents living with mental illness. Adults' experience of personal loss due to their parents' mental illness and perceptions of their religious faith journey and spiritual struggles are described. Overall, young adults who reported experiencing more personal loss due to…

Care burden of parents of adult children with mental illness: The role of associative stigma.

PubMed

Park, Keunwoo; Seo, Mikyung

2016-10-01

Parents of offspring with mental illness must endure endless child care burden despite their old age, and must cope with associative stigma. This study analyzed the mediator effect of associative stigma on relationships between the main stressors, psychiatric symptoms and lowered social function of offspring with mental illness, assessed by the parents, and their care burden. 215 parents caring for an adult child with mental illness in Korea were surveyed (Mage=60.68, SD=13.58; 74.4% mothers). They were asked to assess the psychiatric symptoms and social function of their offspring, the stigma they experienced, and the objective/subjective care burdens they felt. Our findings suggest that the symptoms and function of offspring directly affect the care burden of parents, but also have an indirect effect mediated by associative stigma. Among the predictor variables, symptoms have a greater effect on the subjective/objective burden and associative stigma than social function. We suggest strategies for parents to overcome associative stigma and emphasize the professional endeavor required to meet the service needs of elderly parents taking care of an adult child with mental illness. Copyright © 2016 Elsevier Inc. All rights reserved.

Chronic physical conditions in older adults with mental illness and/ or substance use disorders.

PubMed

Lin, Wen-Chieh; Zhang, Jianying; Leung, Gary Y; Clark, Robin E

2011-10-01

To examine the association between mental illness and chronic physical conditions in older adults and investigate whether co-occurring substance use disorders (SUDs) are associated with greater risk of chronic physical conditions beyond mental illness alone. A retrospective cross-sectional study. Medicare and Medicaid programs in Massachusetts. Massachusetts Medicare and Medicaid members aged 65 and older as of January 1, 2005 (N = 679,182). Diagnoses recorded on Medicare and Medicaid claims were used to identify mental illness, SUDs, and 15 selected chronic physical conditions. Community-dwelling older adults with mental illness or SUDs had higher adjusted risk for 14 of the 15 selected chronic physical conditions than those without these disorders; the only exception was eye diseases. Moreover, those with co-occurring SUDs and mental illness had the highest adjusted risk for 11 of these chronic conditions. For residents of long-term care facilities, mental illness and SUDs were only moderately associated with the risk of chronic physical conditions. Community-dwelling older adults with mental illness or SUDs, particularly when they co-occurred, had substantially greater medical comorbidity than those without these disorders. For residents of long-term care facilities, the generally uniformly high medical comorbidity may have moderated this relationship, although their high prevalence of mental illness and SUDs signified greater healthcare needs. These findings strongly suggest the imminent need for integrating general medical care, mental health services, and addiction health services for older adults with mental illness or SUDs. © 2011, Copyright the Authors Journal compilation © 2011, The American Geriatrics Society.

Retrospective chart review of obesity and episodic and chronic illness among rural Mexican-American adolescents accessing rural health clinic services.

PubMed

Champion, Jane Dimmitt; Pierce, Sherrie; Collins, Jennifer L

2015-06-01

Obesity impacts the physical and psychological health of children and adolescents, and is a risk factor for development of episodic and chronic illness. Rural Mexican-American adolescents are at risk for obesity and associated chronic illnesses.The study used a retrospective chart review of data collected routinely in a rural health clinic setting from 1 January 2005 to 31 December 2010 to assess incidence of overweight/obesity status and episodic or chronic illness among Mexican-American adolescents aged 12-18 years. Analyses included body mass index, age, gender, and episodic or chronic illness diagnoses. Two hundred twelve charts were audited; women (n = 114, 53.8%), men (n = 98 46.2%); normal (n = 105, 49.5%), overweight/obese (n = 107, 50.5%). There were more female normal (n = 61, 53.5%) vs. overweight/obese (n = 53, 46.5%). More male overweight/obese (n = 54, 55.1%) than normal weight (n = 44, 44.9%). Age at first documented overweight/obesity status occurred in early adolescence (median = 13 years, mode = 12 years). Chronic illness incidence was higher among men than women, and overweight/obese vs. normal weight adolescents and in sub-categorizations by weight and specific illness. Incidence of episodic illness was higher among women than men, with variation by weight and specific illness. Disproportionately high incidence of episodic or chronic illness and overweight/obesity identified among rural Mexican-American adolescents compels intervention modification to improve effectiveness. © 2014 Wiley Publishing Asia Pty Ltd.

"My Child Is Not an Illness": Mothers as Advocates for Pedagogy and Policies for Chronically Ill Students

ERIC Educational Resources Information Center

Katzman, Lauren

2013-01-01

On a national level, there is no answer in the law about identifying and servicing chronically ill students. Because the national definitions and requirements are ambiguous, the local policies are also unclear. The purpose of this study was to analyze the stories told by mothers about their children who suffer from chronic illness in order to help…

The Search for Balance: Prolonged Uncertainty in Parent Blogs of Childhood Cancer.

PubMed

McGeehin Heilferty, Catherine

2018-05-01

Illness blogs are the online narrative expression of the experience of illness and its treatment. The purpose of the present research was to explore, describe, and analyze blog narratives created by parents during their child's cancer experience in the hope that knowledge generated would amplify the voices of these vulnerable families. The study aimed to answer this question: What themes are evident in illness blogs created by a parent when a child has cancer? The purposive sample of 14 parent blogs included publicly accessible, English language narratives that contained descriptions of life with a child who had undergone treatment for acute lymphocytic leukemia (ALL; five blogs analyzed) or neuroblastoma (nine blogs analyzed) in the previous 5 years or who was currently undergoing treatment for these types of cancer. Analysis resulted in discovery of new knowledge of the uncertainty inherent in daily family life during illness and treatment. The parents' vivid depictions of the quest for balance while living with prolonged uncertainty during the illness experience suggested new ways to understand experiences of parents of children with cancer.

Caregiver Experience During Patients’ Advanced Chronic Illness and Last Year of Life

PubMed Central

Sautter, Jessica M.; Tulsky, James A.; Johnson, Kimberly S.; Olsen, Maren K.; Burton-Chase, Allison M.; Lindquist, Jennifer Hoff; Zimmerman, Sheryl; Steinhauser, Karen E.

2014-01-01

Background/Objectives Caregivers of patients with serious illness endure significant burden, yet it is not clear at what stage of advanced illness patient and caregiver needs are greatest. This study compared prevalence and predictors of caregiver esteem and burden during two different stages of patients’ illnesses – advanced chronic illness and the last year of life. Design Longitudinal, observational cohort study. Setting Community sample recruited from outpatient clinics at Duke University and Durham VA Medical Centers. Participants Patients living with advanced cancer, congestive heart failure, or chronic obstructive pulmonary disease and their primary caregiver, retrospectively coded as chronic-illness (n=62) or end-of-life (n=62) patient-caregiver dyads. Measurements We measured caregiver experience monthly with the Caregiver Reaction Assessment (CRA), which includes caregiver esteem and 4 domains of burden: schedule, health, family, and finances. Results During both chronic-illness and end-of-life, high caregiver esteem was almost universal (95%); health, family, and financial burden were endorsed by <25% of the sample. Schedule burden was the most prevalent form of burden and was experienced more frequently by end-of-life caregivers (58%) than the chronic-illness caregivers (32%). Caregiver esteem and all dimensions of burden were relatively stable over one year. Few factors were associated with burden. Conclusion Caregiver experience is relatively stable over one year and similar among caregivers of patients in the last year of life and those further upstream in advanced illness. Schedule burden stands out as most prevalent and variable among dimensions of experience. Because prevalence of burden is not specific to stage of illness and is relatively stable over time, multidisciplinary healthcare teams should assess caregiver burden and refer burdened caregivers to supportive resources early in the course of chronic illness. PMID:24803020

The forum as a friend: parental mental illness and communication on open Internet forums.

PubMed

Widemalm, My; Hjärthag, Fredrik

2015-10-01

The aim of this study was to identify how daughters or sons to parents suffering from mental illness perceive their situation. The objective was to provide new knowledge based on what they communicate on open Internet forums. The sample consisted of forum posts written by individuals who reported that they had mentally ill parents. Data collection comprised 301 comments from 35 forum threads on 5 different Swedish Internet forums, and predetermined inclusion criteria were used. Data were analyzed qualitatively using thematic analysis. The analysis generated four themes: "Caregiver burden," "Knowledge seeking," "Support from the forum," and "Frustration and powerlessness over health care." The results showed that parents' mental illness affected the forum writers on several levels, and they often felt stigmatized. The writers often lacked knowledge of their parents' mental illness and sought out Internet forums for information and support from peers in similar situations. The psychiatric care given to the parents was a source of dissatisfaction among the forum writers, who often felt that their parents did not receive adequate care. This study shows that fear of stigmatization and perceived lack of care and support caused forum writers to anonymously seek out Internet forums for information and support from others with similar experiences. The role of social support and the attractiveness of anonymity and availability typical for open Internet forums ought to be considered by health care professionals and researchers when developing new ways for providing support for children or adolescents with a mentally ill parent.

Defining "peerness": Developing peer supports for parents with mental illnesses.

PubMed

Nicholson, Joanne; Valentine, Anne

2018-06-01

This article addresses critical considerations in the development of peer supports for parents with mental illnesses, focusing on the question of what makes a peer a peer in the parent peer specialist domain. The implementation and testing of parent peer supports requires specification of the critical components of the model, including the qualities, characteristics, and unique contributions of the parent peer specialist. Themes emerged in Parent Peer Specialist Project Advisory Group discussions, with members drawing from lived experience, practice expertise, and conversations with experts. In addition to literature review, strategic stakeholder interviews were conducted. Lived experience of mental illness and family life, training, and ongoing support for parent peer specialists, along with key ingredients conveyed by perceived peer-parent similarity, will likely enhance the benefits of peer supports to parents and promote job satisfaction and career advancement for parent peer specialists. (PsycINFO Database Record (c) 2018 APA, all rights reserved).

Unraveling triadic communication in hospital consultations with adolescents with chronic conditions: the added value of mixed methods research.

PubMed

van Staa, Anneloes

2011-03-01

To integrate findings of a mixed methods research (MMR) into adolescents' preferences and competencies for communication during consultations, in order to demonstrate the added value of MMR for health communication research. Sequential MMR with adolescents (12-19 years) with various chronic conditions in a university hospital. Methods comprised: (1) 31 face-to-face interviews; (2) Q-methodology; (3) 39 observations of outpatient consultations; (4) three focus groups with 27 healthcare providers; (5) web-based questionnaire in 960 adolescents. Adolescents had different preferences regarding health communication, but all wished to be involved as partners. Yet, their actual participation during consultations was low. They often acted as bystanders rather than main characters because their participation was neither requested nor encouraged. Parents filled the gap, to healthcare providers' frustration. The questionnaire confirmed the discrepancy between self-efficacy and self-reported independent behavior during consultations. Triadic communication was all but multi-party-talk and adolescents did not act and were not considered as main partners. MMR was of pivotal importance for our understanding. As chronically ill adolescents need to prepare themselves for transition to adult care, healthcare providers should encourage them to take the lead in communication by initiating independent visits and changing the parents' roles. Copyright © 2010 Elsevier Ireland Ltd. All rights reserved.

A tool for tracking and assessing chronic illness care in prison (ACIC-P).

PubMed

Wang, Emily A; Aminawung, Jenerius A; Ferguson, Warren; Trestman, Robert; Wagner, Edward H; Bova, Carol

2014-10-01

Chronic disease care is being transformed in correctional settings, given an aging inmate population, ongoing quality improvement efforts, litigation, and rising costs. The Chronic Care Model, established for chronic disease care in the community, might be a suitable framework to transform chronic disease care in prison, but it has not been systematically adapted for the correctional health care setting. We employed cognitive interviewing to adapt an extant survey used to measure the delivery of chronic illness care in the community, Assessment of Chronic Illness Care, for a prison setting. Results from the cognitive interviews and the modified Assessment of Chronic Illness Care-Prison (ACIC-P) instrument are presented in this article. Future studies will need to test the reliability and psychometric properties of the adapted ACIC-P. © The Author(s) 2014.

Stress among parents of children with attention deficit hyperactivity disorder, a Malaysian experience.

PubMed

Narkunam, Neelaveni; Hashim, Aili Hanim; Sachdev, Manveen Kaur; Pillai, Subash K; Ng, Chong Guan

2014-06-01

Attention deficit hyperactivity disorder (ADHD) is a chronic debilitating illness with onset in early childhood. The objective of this study was to look at the impact of children with ADHD on their parents. All parents with children diagnosed as having ADHD attending the Psychiatry Adolescent and Child Unit, University Malaya were included in this study. Their parenting stress was assessed using the Parent Stress Index. A total of 95 parents participated in the study. The proportion of parents who reported significant stress in this study was much higher than in most studies (n = 69, 73%). Significant correlation was found between the severity of the child's disorder (Children's Global Assessment Scale [CGAS] score) and the parents' stress level (OR 0.16, 95% CI 0.05-0.51). Mothers were significantly more stressed than fathers (OR 0.16, 95% CI 0.05-0.51) and non-Malay parents more stressed than the Malay parents (OR 3.92, 95% CI 1.29-11.94). Parents with children older than 12 years of age were six times more stressed than parents with children younger than 12 years old (OR 6.47, 95% CI 1.55-27.01). Stressed parents acknowledged that having a child with ADHD was their biggest worry. Stress has marked consequences on any person and has important bearings on their mental health. Stress among parents needs be looked into when treating children with ADHD. Copyright © 2012 Wiley Publishing Asia Pty Ltd.

Parent education programmes for special health care needs children: a systematic review.

PubMed

Jackson, Alun C; Liang, Rachel P-T; Frydenberg, Erica; Higgins, Rosemary O; Murphy, Barbara M

2016-06-01

The aim of this review was to examine parent education programmes for families with children with special health care needs, to better design interventions focusing on the psychosocial aspects of living with a child's chronic condition. Studies of familial coping with children with special health care needs indicate high levels of parenting stress, with families with children with special health care needs at risk of major psychological and social disturbances and financial strain. Despite increased knowledge of the factors affecting children with special health care needs themselves, evidence for the effectiveness of preventative and treatment interventions in the form of parent education programmes remains limited. Systematic review using PRISMA guidelines. Multi database Boolean searches in EBSCO Discovery Services using the search terms 'complex/special health care needs children', 'child/pediatric/congenital heart disease', 'chronic illness (including diabetes, cancer and cystic fibrosis)', 'family coping', 'siblings' AND 'parenting/family support programs' were conducted. Analysis of 13 included studies showed evidence for the effectiveness of both mixed-health condition and condition-specific parenting programmes delivered in a variety of modes. Three common core intervention approaches were: use of narrative therapy enabling families to tell their own stories, thus facilitating emotional processing and (co-) construction of meaning; a focus on strengthening protective factors such as enhancing parents' skills in communication, and behavioural management and provision of psycho-education to deepen parents' understanding of their child's condition and associated developmental challenges. Irrespective of the type of outcome measures used in the studies, the review showed that there were positive gains and improvements across a range of areas of family functioning such as mental health, parenting, communication and problem-solving skills postprogramme. Identification of what programme characteristics enhance functioning for families with children with special health care needs should encourage the design of effective interventions. © 2016 John Wiley & Sons Ltd.

Mapping chronic illness in the age of globalization: reclaiming the good for the chronically ill.

PubMed

del Pilar Camargo Plazas, Maria

2009-01-01

Until recently, infectious diseases were the main cause of death worldwide. New medical discoveries and the evolution of public health improved life expectancy and the ability to survive acute threats, thus changing the course of diseases from acute to chronic. Today, chronic illness is the most important health concern worldwide. Chronic illness increases existing poverty and pushes other people into it. As nurses, members of the healthcare system and members of this world, we cannot forget that our response toward globalization and chronic disease has to be centered in leadership through reorienting local and national healthcare systems. All actions must be grounded in the ethical treatment of the ill; we cannot close our eyes in hospitals or communities to what is happening now worldwide because our responsibility is to promote health, prevent disease, and care for human beings.

Living with a mentally ill parent: exploring adolescents' experiences and perspectives.

PubMed

Trondsen, Marianne V

2012-02-01

Although a considerable body of research has described the implications of parental mental illness, the perspectives of children and adolescents have rarely been addressed. In this article, I explore adolescents' experiences in everyday life, based on an action-oriented study of a Norwegian online self-help group for adolescents (aged 15 to 18) with mentally ill parents. The analysis was conducted through participant observation of the group for 2 years. The adolescents experienced a variety of difficult challenges related to their parent's mental illness: lack of information and openness; unpredictability and instability; fear; loneliness; and loss and sorrow. However, they also discussed strategies for active management of the challenges arising from the family situation. I argue that these adolescents can be understood as vulnerable as well as active participants in managing their everyday lives. I emphasize the importance of including perspectives of children and adolescents in further research so as to improve health care for families with parental mental illness.

Communal normalization in an online self-help group for adolescents with a mentally ill parent.

PubMed

Trondsen, Marianne V; Tjora, Aksel

2014-10-01

Although implications of parental mental illness are well documented, most children of mentally ill parents are left to manage their family situation with limited information and support. We explored the role of a Norwegian online self-help group for adolescents (aged 15 to 18) with a mentally ill parent. Through in-depth interviews with 13 participants, we found that the online self-help group provided "communal normalization" by which participants, through communication in the forum, made sense of everyday experiences and emotions arising from having a mentally ill parent. We identified three main aspects of this process-recognizability, openness, and agency-all of which were important for the adolescents' efforts to obtain support, to be supportive, and to handle everyday life situations better. Communal normalization might provide resources for significantly improving the participants' life situations, and could demonstrate similar potential for users in other situations characterized by stigma, loneliness, silence, and health worries. © The Author(s) 2014.

Parents of Mentally Ill Adult Children Living at Home: Rewards of Caregiving.

ERIC Educational Resources Information Center

Schwartz, Chaya; Gidron, Ronit

2002-01-01

Study measured the extent to which parents perceive their ill child as providing assistance and support--practical and emotional--and perceive their own caregiving as emotionally and mentally rewarding. All parents reported receiving help and support, but perceived the satisfaction gained from fulfilling their parental duties and from learning…

Caring for the Chronically Ill: A Vital Subject for Medical Education.

ERIC Educational Resources Information Center

Cohen, Andrew J.

1998-01-01

Patients with chronic illness account for three-fourths of United States' health-care expenditures, and considerable growth in these costs is likely as the population ages. However, management of chronic illness has received little attention in either undergraduate or graduate medical education. Competencies required to develop curricula in…

School Reentry for the Child with Chronic Illness.

ERIC Educational Resources Information Center

Sexson, Sandra B.; Madan-Swain, Avi

1993-01-01

This article focuses on the issues of reintegrating the chronically ill child into the school setting, the types of school problems encountered, the process of school reentry, (including a successful school reentry plan), and the implications for the school and the family of returning the chronically ill child to school. (DB)

A Metasynthesis of Factors Affecting Self-Management of Chronic Illness

PubMed Central

SCHULMAN-GREEN, Dena; JASER, Sarah S.; PARK, Chorong; WHITTEMORE, Robin

2015-01-01

Aim To identify factors that may serve as facilitators and barriers to self-management described by adults living with chronic illness by conducting a qualitative metasynthesis. Background Self-management is an individuals’ active management of a chronic illness in collaboration with their family members and clinicians. Design Qualitative metasynthesis. Data Sources We analyzed studies (N=53) published between January 2000–May 2013 that described factors affecting self-management in chronic illness as reported by adults aged over 18 years with chronic illness. Review Methods Sandelowsi and Barroso approach to qualitative metasynthesis: literature search; quality appraisal; analysis; and synthesis of findings. Results Collectively, article authors reported on sixteen chronic illnesses, most commonly diabetes (N=28) and cardiovascular disease (N=20). Participants included men and women (mean age=57, range 18–94) from twenty countries representing diverse races and ethnicities. We identified five categories of factors affecting self-management: Personal/Lifestyle Characteristics; Health Status; Resources; Environmental Characteristics; and Health Care System. Factors may interact to affect self-management and may exist on a continuum of positive (facilitator) to negative (barrier). Conclusion Understanding factors that influence self-management may improve assessment of self-management among adults with chronic illness and may inform interventions tailored to meet individuals’ needs and improve health outcomes. PMID:26781649

Children as Next of Kin: A Scoping Review of Support Interventions for Children Who Have a Parent with a Serious Physical Illness

ERIC Educational Resources Information Center

Järkestig Berggren, Ulrika; Hanson, Elizabeth

2016-01-01

Young children and adolescents who have a parent with a serious physical illness require information and support to cope with their everyday lives. The purpose of this scoping review was to summarise and disseminate the research findings of interventions that support children in families with a serious physically ill parent. The review also aimed…

Working as a doctor when chronically ill or disabled: comments made by doctors responding to UK surveys.

PubMed

Smith, Fay; Goldacre, Michael J; Lambert, Trevor W

2016-07-01

To report a qualitative study of themes doctors raised spontaneously, in a large-scale prospective cohort study covering many aspects of their medical careers, when referring to their own chronic illness or disability. Questionnaire survey. UK. Questionnaires were sent one, five and 10 years after graduation to 44,539 doctors who qualified between 1993 and 2012 in the UK: 38,613 questionnaires were returned and 11,859 respondents provided comments made by doctors about their training or work. The comments of 123 doctors about their own chronic illness or disability. Main themes raised included poor support for doctors with chronic illness or disability, delays in and changes to careers (either planned ahead or imposed), the impact of pressure at work, difficulties returning to work after illness, limitations on career choices and inadequate careers advice for doctors with chronic illness or disabilities. More needs to be done to ensure that doctors with chronic illness or disability receive appropriate support. Occupational health guidance should be monitored closely, with more support for ill doctors including adjustments to the job, help if needed with morale and mental health, and advice on career options. Further studies should establish the prevalence of long-term health conditions among doctors.

Does health status influence acceptance of illness in patients with chronic respiratory diseases?

PubMed

Kurpas, D; Mroczek, B; Brodowski, J; Urban, M; Nitsch-Osuch, A

2015-01-01

The level of illness acceptance correlates positively with compliance to the doctor's recommendations, and negatively with the frequency and intensity of complications of chronic diseases. The purpose of this study was to determine the influence of the clinical condition on the level of illness acceptance, and to find variables which would have the most profound effect on the level of illness acceptance in patients with chronic respiratory diseases. The study group consisted of 594 adult patients (mean age: 60 ± 15 years) with mixed chronic respiratory diseases, recruited from patients of 136 general practitioners. The average score in the Acceptance of Illness Scale was 26.2 ± 7.6. The low level of illness acceptance was noted in 174 (62.6 %) and high in 46 (16.6 %) patients. Analysis of multiple regressions was used to examine the influence of explanatory variables on the level of illness acceptance. The variables which shaped the level of illness acceptance in our patients included: improvement of health, intensity of symptoms, age, marital status, education level, place of residence, BMI, and the number of chronic diseases. All above mentioned variables should be considered during a design of prevention programs for patients with mixed chronic respiratory diseases.

Children in Beardslee's family intervention: relieved by understanding of parental mental illness.

PubMed

Pihkala, Heljä; Sandlund, Mikael; Cederström, Anita

2012-11-01

Beardslee's family intervention (FI), which is a family-based preventive method for children of mentally ill parents, has been implemented on a national level in Sweden. Fourteen children and parents from nine families were interviewed about how the FI was for the children. Data were analysed by qualitative content analysis. A central finding was children's sense of relief and release from worry because of more knowledge and openness about the parent's illness in the family. The results indicating relief for the children are encouraging.

Children whose parents have a mental illness: prevalence, need and treatment.

PubMed

Reupert, Andrea E; J Maybery, Darryl; Kowalenko, Nicholas M

2013-08-05

Up to one in five young people live in families with a parent who has a mental illness. There are various genetic, individual, family and environmental risk factors for children living in these families. Outcomes for children vary according to factors related to a parent's mental illness as well as certain environmental protective and risk factors, related to the family, social support and community. Health care workers need to acknowledge their patients' parenting roles and responsibilities and the needs of other family members, especially children.

Children's strategies to handle cancer: a video ethnography of imaginal coping.

PubMed

Rindstedt, C

2014-07-01

This article explores how children use fantasy, play, and coping (imaginal coping) in order to handle chronic illness. Imaginal coping, as a theoretical construct, is defined as the use of imagination to deal with the hardships of illness. The overarching aim has been to investigate the various ways in which categories of staff members (doctors, nurses, play therapists, and hospital clowns) and parents support children in their coping. Focus has thus been on collaborative or interactive aspects of playful coping. A large proportion of the data collected consists of 93 h of video-recorded interactions between children, parents and staff. The collection of data involved fieldwork carried out with the use of a video ethnographic method, making it possible thereby to analyse and work with data in greater detail. For more than one year, five children with leukaemia were followed as each made their regular visits to a children's cancer clinic in a children's hospital in Sweden. Collaborative storytelling, humorous treatment practices, playful rituals, as well as role-reversal play, were all types of events involving staff-child collaboration and creative improvisation. Staff, along with parents, played a significant role in the coping process. In various ways, the staff members helped the parents to respond to their children in ways adaptive for coping. It can be seen that imaginal coping is a highly interactional business. In this study it is shown that parents socialize coping; this is sometimes undertaken explicitly, for example, through coaching (in the form of instructions or suggestions) and teaching. But often it is achieved through modelling or intent participation, with the child observing staff members' treatment practices. © 2013 John Wiley & Sons Ltd.

The importance of illness duration, age at diagnosis and the year of diagnosis for labour participation chances of people with chronic illness: results of a nationwide panel-study in The Netherlands.

PubMed

Rijken, Mieke; Spreeuwenberg, Peter; Schippers, Joop; Groenewegen, Peter P

2013-09-04

Compared to participation rates among general populations, participation of people with chronic illness in the labour market lags behind. This is undesirable, both from the perspective of individuals' well-being as from a macro-economic perspective for western countries where concerns exist about labour supply and sustainability of social security in the near future. To help develop successful policy measures to prevent early drop-out and support reintegration, we aimed to gain insight into the role of three age related characteristics that may relate to labour participation chances of people with chronic illness: the duration of their illness, how old they were when the chronic disease was diagnosed and the historical year in which the diagnosis was established. We analyzed data of one (first) measurement of several cohorts of people diagnosed with a somatic chronic disease, who (had) participated in the Dutch 'National Panel of people with Chronic illness or Disability' since 1998 (N = 4634 in total). Multi-level logistic regression analyses were conducted to estimate random effects of the age at diagnosis and the year of diagnosis and fixed effects of illness duration on labour participation, while correcting for the effects of socio-demographic and disease characteristics and socio-economic indicators. A significant part of the variation in labour participation among people with chronic illness relates to the age they had when they were diagnosed. Furthermore, a longer illness duration is significantly associated with a lower chance of being economically active. This is more the case for men than for women. Labour participation of cancer survivors depends on the phase of the illness they find themselves in. No evidence was found that the year in which the diagnosis was established matters for employment chances later in life. Age at diagnosis and illness duration relate to chronically ill people's chances to participate in the labour market, but how and how strong they relate to labour participation depend on gender and the type of chronic disease at stake. Prospective studies are needed to assess illness trajectories of specific diagnostic groups along with the development of their school and work careers.

The importance of illness duration, age at diagnosis and the year of diagnosis for labour participation chances of people with chronic illness: results of a nationwide panel-study in the Netherlands

PubMed Central

2013-01-01

Background Compared to participation rates among general populations, participation of people with chronic illness in the labour market lags behind. This is undesirable, both from the perspective of individuals’ well-being as from a macro-economic perspective for western countries where concerns exist about labour supply and sustainability of social security in the near future. To help develop successful policy measures to prevent early drop-out and support reintegration, we aimed to gain insight into the role of three age related characteristics that may relate to labour participation chances of people with chronic illness: the duration of their illness, how old they were when the chronic disease was diagnosed and the historical year in which the diagnosis was established. Methods We analyzed data of one (first) measurement of several cohorts of people diagnosed with a somatic chronic disease, who (had) participated in the Dutch ‘National Panel of people with Chronic illness or Disability’ since 1998 (N = 4634 in total). Multi-level logistic regression analyses were conducted to estimate random effects of the age at diagnosis and the year of diagnosis and fixed effects of illness duration on labour participation, while correcting for the effects of socio-demographic and disease characteristics and socio-economic indicators. Results A significant part of the variation in labour participation among people with chronic illness relates to the age they had when they were diagnosed. Furthermore, a longer illness duration is significantly associated with a lower chance of being economically active. This is more the case for men than for women. Labour participation of cancer survivors depends on the phase of the illness they find themselves in. No evidence was found that the year in which the diagnosis was established matters for employment chances later in life. Conclusion Age at diagnosis and illness duration relate to chronically ill people’s chances to participate in the labour market, but how and how strong they relate to labour participation depend on gender and the type of chronic disease at stake. Prospective studies are needed to assess illness trajectories of specific diagnostic groups along with the development of their school and work careers. PMID:24007362

Illness perceptions and coping with disease in chronic obstructive pulmonary disease: Effects on health-related quality of life.

PubMed

Vaske, Isabelle; Kenn, Klaus; Keil, Daniel C; Rief, Winfried; Stenzel, Nikola M

2017-10-01

This study investigated the effects of illness perceptions and coping with disease on health-related quality of life in chronic obstructive pulmonary disease. Therefore, participants ( N = 444) completed online questionnaires assessing illness severity (chronic obstructive pulmonary disease stage), Illness Perceptions Questionnaire, coping with disease (Essener Coping Questionnaire), and health-related quality of life (short form-12). Hierarchical regression and moderation analyses were conducted. The results showed that health-related quality of life was predicted by illness perceptions and several aspects of coping with disease. The association between illness perceptions and health-related quality of life was mediated by the corresponding coping with disease subscales. It is concluded that in order to prevent decreasing health-related quality of life in chronic obstructive pulmonary disease, treatment may be adjusted by promoting coping with disease and functional illness perceptions.

Adolescent-parent disagreement on health-related quality of life of food-allergic adolescents: who makes the difference?

PubMed

van der Velde, J L; Flokstra-de Blok, B M J; Hamp, A; Knibb, R C; Duiverman, E J; Dubois, A E J

2011-12-01

Food-allergic adolescents are at highest risk for food allergy fatalities, which may be partly due to compromised self-management behavior. Such behavior may be negatively influenced by conflictual situations caused by adolescent-parent disagreement on the adolescent's health-related quality of life (HRQL). Comparisons of adolescent-self-reported and parent-proxy-reported HRQL of food-allergic adolescents have never extensively been studied. The aims of this study were to investigate disagreement in adolescent-self-reports and parent-proxy-reports on the HRQL of food-allergic adolescents and to investigate the factors influencing adolescent-parent disagreement. Teenager Form (TF) and Parent Form (PFA) of the Food Allergy Quality of Life Questionnaire (FAQLQ), Food Allergy Independent Measure (FAIM), and Brief-Illness Perception Questionnaire (Brief-IPQ) were sent to food-allergic Dutch adolescents (13-17 years) and their parents. ICCs, t-tests, and Bland-Altman plots were used to investigate adolescent-parent disagreement. Participant characteristics, illness expectations, and illness perceptions influencing adolescent-parent disagreement were studied using regression analysis. Seventy adolescent-parent pairs were included. There were a moderate correlation (ICC = 0.61, P < 0.001) and no significant difference (3.78 vs 3.56, P = 0.103) between adolescent-self-reported and parent-proxy-reported HRQL at group level. However, Bland-Altman plots showed relevant differences (exceeding the minimal important difference) for 63% of all adolescent-parent pairs. Adolescent's age (> 15 years), poorer adolescent-reported illness comprehension (Brief-IPQ-TF, coherence), and higher adolescent-reported perceived disease severity (Food Allergy Independent Measure-Teenager Form & -Parent Form) were associated with adolescent-parent disagreement. Adolescent-parent disagreement on the adolescent's HRQL was mainly associated with adolescents' rather than parents' perceptions and characteristics. Illness comprehension of the adolescent may be an important target for intervention aimed at reducing adolescent-parent disagreement. © 2011 John Wiley & Sons A/S.

Complete mental health in adult siblings of those with a chronic illness or disability.

PubMed

Hallion, Madeleine; Taylor, Amanda; Roberts, Rachel

2018-02-01

Sibling relationships have lifelong significance and childhood chronic illness and disability can have considerable impacts on healthy siblings, influencing development into adulthood. Research has not yet assessed well-being in this population using measures of both mental health and mental illness. Thus, this study assessed well-being in a comprehensive manner using the complete mental health (CMH) model. Participants (N = 144) included both adult siblings of those with chronic illness or disability and adults with healthy siblings. Measures of positive social, psychological and emotional well-being were used to assess mental health and a measure of depression, anxiety, and stress was used to assess mental illness. A high proportion of participants, both with and without siblings with a chronic illness or disability, were experiencing symptoms of mental illness, accompanied by high wellbeing. This indicates that many participants fit into the struggling category of the CMH model. The present research highlights the need for early intervention services to ensure that siblings of those with a chronic illness or disability are well supported in developing strengths, as well as managing difficulties. Results also indicate that targeting students in mental health promotion is important to encourage participation in services. Implications for rehabilitation Siblings of those with a chronic illness or disability need to be included in assessments in order to understand the experience of the family unit. It is important for families and clinicians to be aware of the needs of healthy siblings and encourage them to interact with support services in order to maximise and maintain well-being. Skills-based support could be beneficial, particularly for providing caregivers with strategies to meet the needs of both their child with a chronic illness or disability and their healthy children.

Rurality and ethnicity in adolescent physical illness: are children of the growing rural Latino population at excess health risk?

PubMed

Wickrama, K A S; Elder, Glen H; Todd Abraham, W

2007-01-01

This study's objectives are to: investigate potential additive and multiplicative influences of rurality and race/ethnicity on chronic physical illness in a nationally representative sample of youth; and examine intra-Latino processes using a Latino sub-sample. Specifically, we examine how rurality and individual psychosocial processes reflected by acculturation proxies (generational status and use of the English language at home) link to chronic physical illness of Latino youth. Finally, we examine whether these associations and the levels of chronic illness differ across Latino subgroups. Logistic-normal (binomial) modeling analyses examine multilevel influences on physical health using longitudinal data from a nationally representative sample (N = 13,905) of white, African American, Latino, Asian, and Native American adolescents between the ages of 12 and 19 participating in the National Longitudinal Study of Adolescent Health. Prevalence rates of certain chronic illnesses (obesity, asthma, and high cholesterol) among Latino adolescents exceed rates for the same illnesses among white adolescents. Comparisons between rural and non-rural youth reveal a rurality disadvantage in terms of any chronic illness likelihood among Latino, Asian, and Native American youth not evident among whites or African Americans. Among Latino youth (N = 2,505), Mexican Americans show lower health risk for any chronic illness compared to other Latino groups. However, third generation Latinos and those who primarily speak English at home experience higher risk for any chronic illness than do those of first or second generation status, with amplification of the risk linked to English use at home among Latino youth living in rural areas.

Do everyday problems of people with chronic illness interfere with their disease management?

PubMed

van Houtum, Lieke; Rijken, Mieke; Groenewegen, Peter

2015-10-01

Being chronically ill is a continuous process of balancing the demands of the illness and the demands of everyday life. Understanding how everyday life affects self-management might help to provide better professional support. However, little attention has been paid to the influence of everyday life on self-management. The purpose of this study is to examine to what extent problems in everyday life interfere with the self-management behaviour of people with chronic illness, i.e. their ability to manage their illness. To estimate the effects of having everyday problems on self-management, cross-sectional linear regression analyses with propensity score matching were conducted. Data was used from 1731 patients with chronic disease(s) who participated in a nationwide Dutch panel-study. One third of people with chronic illness encounter basic (e.g. financial, housing, employment) or social (e.g. partner, children, sexual or leisure) problems in their daily life. Younger people, people with poor health and people with physical limitations are more likely to have everyday problems. Experiencing basic problems is related to less active coping behaviour, while experiencing social problems is related to lower levels of symptom management and less active coping behaviour. The extent of everyday problems interfering with self-management of people with chronic illness depends on the type of everyday problems encountered, as well as on the type of self-management activities at stake. Healthcare providers should pay attention to the life context of people with chronic illness during consultations, as patients' ability to manage their illness is related to it.

Reliability and validity of the Iranian version of the Pediatric Quality of Life Inventory™ 4.0 Generic Core Scales in adolescents.

PubMed

Amiri, Parisa; M Ardekani, Emad; Jalali-Farahani, Sara; Hosseinpanah, Farhad; Varni, James W; Ghofranipour, Fazlollah; Montazeri, Ali; Azizi, Fereidoun

2010-12-01

The objective of this study was to investigate the reliability and validity of the Iranian version of the Pediatric Quality of Life Inventory™ 4.0 (PedsQL™ 4.0) Generic Core Scales in adolescents After linguistic validation, the Iranian version of the PedsQL™ 4.0 was completed by 848 healthy and 26 chronically ill adolescents aged 13-18 years and their parents. The internal consistency as measured by Cronbach's alpha coefficients exceeded the minimum reliability standard of .70. No floor effects were observed. Ceiling effects detected ranged from 1.5% for adolescent self-report total scale score to 42.2% for self-report social functioning. All monotrait-multimethod correlations were higher than multitrait-multimethod correlations. The intraclass correlation coefficients (ICC) between adolescent self-report and parent proxy-report showed good to excellent agreement. Exploratory factor analysis supported mainly comparable results with the original US English dialect version. The results of the confirmatory factor analysis for 5-factor models for both self-report and proxy-report indicated acceptable fit for the proposed models. Regarding gender and health status, as hypothesized from previous studies, girls reported lower health-related quality of life than boys on the total score, physical and emotional functioning, and healthy adolescents reported significantly higher health-related quality of life than those with chronic illnesses. The findings support the initial reliability and validity of the Iranian version of the PedsQL™ 4.0 as a generic instrument to measure HRQOL of adolescents in Iran.

Longitudinal Model Predicting Self-Concept in Pediatric Chronic Illness.

PubMed

Emerson, Natacha D; Morrell, Holly E R; Neece, Cameron; Tapanes, Daniel; Distelberg, Brian

2018-04-16

Although self-concept has been identified as salient to the psychosocial adjustment of adolescents dealing with a chronic illness (CI), little research has focused on its predictors it. Given that depression and parent-child attachment have been linked to self-concept in the population at large, the goal of this study was to evaluate these relationships longitudinally in a sample of adolescents with CI. Using participant data from the Mastering Each New Direction (MEND) program, a 3-month psychosocial, family based intensive outpatient program for adolescents with CI, we employed multilevel modeling to test longitudinal changes in self-concept, as predicted by depressive symptoms and parent-child attachment, in a sample of 50 youths (M age  = 14.56, SD age  = 1.82) participating in MEND. Both "time spent in the program" and decreases in depressive symptoms were associated with increases in self-concept over time. Higher baseline levels of avoidant attachment to both mother and father were also associated with greater initial levels of self-concept. Targeting depressive symptoms and supporting adaptive changes in attachment may be key to promoting a healthy self-concept in pediatric CI populations. The association between avoidant attachment and higher baseline self-concept scores may reflect differences in participants' autonomy, self-confidence, or depression. Limitations of the study include variability in the amount of time spent in the program, attrition in final time point measures, and the inability to fully examine and model all potential covariates due to a small sample size (e.g. power). © 2018 Family Process Institute.

Improving Communication About Serious Illness

ClinicalTrials.gov

2017-01-07

Critical Illness; Chronic Disease; Terminal Care; Palliative Care; Communication; Advance Care Planning; Neoplasm Metastasis; Lung Neoplasms; Pulmonary Disease, Chronic Obstructive; Heart Failure; End Stage Liver Disease; Kidney Failure, Chronic

Inter-Regional, Epidemiological Study of Childhood Cancer (IRESCC): case-control study in children with germ cell tumors

DOE Office of Scientific and Technical Information (OSTI.GOV)

Johnston, H.E.; Mann, J.R.; Williams, J.

In 1980-1983 members of IRESCC interviewed parents of 555 children with newly diagnosed cancer on topics of possible etiological significance. Identical questions were asked of the parents of 1100 control children chosen from hospital admissions and general practitioner lists. Medical information was confirmed whenever possible by cross-checking with NHS records. Data for the 41 children with germ cell tumors and their 82 controls are reported here. The cases had more major congenital malformations than controls, including one neural tube defect. More case than control mothers and fathers reported occupational exposure to chemicals. Nine close relatives of cases had multiple primarymore » tumors, which were often benign or of low-grade malignancy, compared with 1 hospital control and 3 general practitioner control relatives. Cases and controls differed with respect to birth weight and paternal age. No case-control differences were shown for: birth rank, maternal age, chronic illnesses and smoking, mothers reproductive histories and oral contraceptive usage. In index pregnancies there were no case-control differences for maternal illness, infections, alcohol intake and X-ray and ultrasound exposure. There was no difference between cases and controls for the frequency of twinning the families.« less

Family Approaches to the Chronically Mentally Ill: Implications for Rural Areas.

ERIC Educational Resources Information Center

Kilpatrick, Allie C.; Kilpatrick, Ebb G.

The decade of the 1980s has witnessed a rebirth of concern regarding the chronically mentally ill. The way mental health professionals view families of the chronically mentally ill has changed dramatically, largely because of the emergence of the biological theories of causation for schizophrenia. Innovative programs for families have included…

78 FR 6404 - Agency Information Collection (Survey of Chronic Gastrointestinal Illness in Persian Gulf...

Federal Register 2010, 2011, 2012, 2013, 2014

2013-01-30

...: Approximately 25 percent military troops who were deployed in the first Persian Gulf War returned with... of Chronic Gastrointestinal Illness in Persian Gulf Veterans) Activities Under OMB Review AGENCY.... Survey of Chronic Gastrointestinal Illness in Persian Gulf Veterans, VA Form 10-21092a. b. VA Research...

Effects of Sudden vs. Chronic Illness Death on Bereavement Outcome.

ERIC Educational Resources Information Center

Sanders, Catherine M.

1982-01-01

Interviewed bereaved persons shortly after the death of a close family member and 18 months later. Respondents were grouped according to mode of death. The short-term chronic illness group made the most favorable adjustment. Sudden death and long-term chronic illness death groups sustained higher intensities of bereavement. (Author/RC)

Listening to Older Adult Parents of Adult Children with Mental Illness

ERIC Educational Resources Information Center

Smith, Judith R.

2012-01-01

This article uses qualitative research and narrative analysis to examine the experience of women age 55 and older who are parents caring for adult children with mental illness. Knowledge about the conflicts of older parents with dependent children is underdeveloped. In this study, analysis of women's stories about parenting in later life reveal…

[Prevention groups for school-age children of mentally ill parents ("Auryn Groups")].

PubMed

Dierks, H

2001-09-01

Children of psychiatrically ill parents have a high risk themselves to develop a psychiatric illness in adulthood. Prevention aims at strengthening the resilience of these children and reducing psychosocial risk factors. This article found and describes a theoretical concept of prevention groups for children in schoolage (7-16 years) whose parents are psychiatrically ill. First practical experiences are depicted. The Hamburgian model of prevention works with closed and temporary limited groups of children as well as with the parents. It is based on supporting the children's existing coping strategies and the children are encouraged to exchange their individual experiences of the relationships within their families. One conclusion was, that the main thematic emphasis varied considerably depending on the age of the children.

Women's self-management of chronic illnesses in the context of caregiving: a grounded theory study.

PubMed

Martinez-Marcos, Mercedes; De la Cuesta-Benjumea, Carmen

2015-06-01

Uncover how women self-manage their own chronic illness while taking care of a dependent relative. International policies place special emphasis in promoting interventions addressed to control, prevent and care for people with chronic health conditions. Self-management is a crucial part of this care. Caregivers are more prone to have chronic illness than non-caregivers. They are confronted with dilemmas about taking care of themselves while taking care of their dependent relative and the rest of their families. Caregivers articulate strategies to enable them to focus their energy on caring. Qualitative study using constructivist grounded theory. Thirty-nine women caregivers with a chronic illness participated in the study. Twenty-three semi-structured interviews and two focus groups were carried out between April 2010-December 2011. Data were analysed using grounded theory procedures. Self-management helps women caregivers with a chronic illness to balance the demands of their own illness and those of the dependent relative. They self-manage their illness by self-regulating the treatment, by regulating their strength and by controlling their emotions. Women caregivers integrate effectively and creatively the management of their chronic illnesses within the complexities of family care. This renders their health needs invisible and reaffirms them as capable caregivers. Identifying self-management strategies of women caregivers allow health professionals to acknowledge and reinforce effective self-care measures and to deter those that are ineffective and lessen their quality of life. © 2014 John Wiley & Sons Ltd.

Navigating in an unpredictable daily life: a metasynthesis on children's experiences living with a parent with severe mental illness.

PubMed

Dam, Kristianna; Hall, Elisabeth O C

2016-09-01

A large group of individuals suffering from mental illness are parents living with their children. These children are invisible in the health care even though at risk for illhealth. The aim of this metasynthesis was to advance knowledge of how children of parents with mental illness experience their lives, thus contributing to the evidence of this phenomenon. The metasynthesis is following Sandelowski and Barroso's guidelines. Literature searches covering the years 2000 to 2013 resulted in 22 reports which were synthesised into the theme 'navigating in an unpredictable everyday life' and the metaphor compass. Children of parents with mental illness irrespective of age are responsible, loving and worrying children who want to do everything to help and support. Children feel shame when the parent behaves differently, and they conceal their family life being afraid of stigmatisation and bullying. When their parent becomes ill, they distance to protect themselves. The children cope through information, knowledge, frankness and trustful relationships. These children need support from healthcare services because they subjugate own needs in favour of the parental needs, they should be encouraged to talk about their family situation, and especially, young children should to be child-like, playing and seeing friends. © 2016 Nordic College of Caring Science.

Psychometric properties of the parent́s perception uncertainty in illness scale, spanish version.

PubMed

Suarez-Acuña, C E; Carvajal-Carrascal, G; Serrano-Gómez, M E

2018-03-27

To analyze the psychometric properties of the Parents' Perception of Uncertainty in Illness Scale, parents/children, adapted to Spanish. A descriptive methodological study involving the translation into Spanish of the Parents' Perception of Uncertainty in Illness Scale, parents/children, and analysis of their face validity, content validity, construct validity and internal consistency. The original version of the scale in English was translated into Spanish, and approved by its author. Six face validity items with comprehension difficulty were reported; which were reviewed and adapted, keeping its structure. The global content validity index with expert appraisal was 0.94. In the exploratory analysis of factors, 3 dimensions were identified: ambiguity and lack of information, unpredictability and lack of clarity, with a KMO=0.846, which accumulated 91.5% of the explained variance. The internal consistency of the scale yielded a Cronbach alpha of 0.86 demonstrating a good level of correlation between items. The Spanish version of "Parent's Perception of Uncertainty in Illness Scale" is a valid and reliable tool that can be used to determine the level of uncertainty of parents facing the illness of their children. Copyright © 2018 Sociedad Española de Enfermería Intensiva y Unidades Coronarias (SEEIUC). Publicado por Elsevier España, S.L.U. All rights reserved.

Sickness absence management: encouraging attendance or 'risk-taking' presenteeism in employees with chronic illness?

PubMed

Munir, Fehmidah; Yarker, Joanna; Haslam, Cheryl

2008-01-01

To investigate the organizational perspectives on the effectiveness of their attendance management policies for chronically ill employees. A mixed-method approach was employed involving questionnaire survey with employees and in-depth interviews with key stakeholders of the organizational policies. Participants reported that attendance management polices and the point at which systems were triggered, posed problems for employees managing chronic illness. These systems presented risk to health: employees were more likely to turn up for work despite feeling unwell (presenteeism) to avoid a disciplinary situation but absence-related support was only provided once illness progressed to long-term sick leave. Attendance management polices also raised ethical concerns for 'forced' illness disclosure and immense pressures on line managers to manage attendance. Participants felt their current attendance management polices were unfavourable toward those managing a chronic illness. The policies heavily focused on attendance despite illness and on providing return to work support following long-term sick leave. Drawing on the results, the authors conclude that attendance management should promote job retention rather than merely prevent absence per se. They outline areas of improvement in the attendance management of employees with chronic illness.

Integrating the ICF with positive psychology: Factors predicting role participation for mothers with multiple sclerosis.

PubMed

Farber, Ruth S; Kern, Margaret L; Brusilovsky, Eugene

2015-05-01

Being a mother has become a realizable life role for women with disabilities and chronic illnesses, including multiple sclerosis (MS). Identifying psychosocial factors that facilitate participation in important life roles-including motherhood-is essential to help women have fuller lives despite the challenge of their illness. By integrating the International Classification of Functioning, Disability, and Health (ICF) and a positive psychology perspective, this study examined how environmental social factors and positive personal factors contribute to daily role participation and satisfaction with parental participation. One hundred and 11 community-dwelling mothers with MS completed Ryff's Psychological Well-Being Scales, the Medical Outcome Study Social Support Survey, the Short Form-36, and the Parental Participation Scale. Hierarchical regression analyses examined associations between social support and positive personal factors (environmental mastery, self-acceptance, purpose in life) with daily role participation (physical and emotional) and satisfaction with parental participation. One-way ANOVAs tested synergistic combinations of social support and positive personal factors. Social support predicted daily role participation (fewer limitations) and greater satisfaction with parental participation. Positive personal factors contributed additional unique variance. Positive personal factors and social support synergistically predicted better function and greater satisfaction than either alone. Integrating components of the ICF and positive psychology provides a useful model for understanding how mothers with MS can thrive despite challenge or impairment. Both positive personal factors and environmental social factors were important contributors to positive role functioning. Incorporating these paradigms into treatment may help mothers with MS participate more fully in meaningful life roles. (c) 2015 APA, all rights reserved).

How Clinicians Feel about Working with Spouses of the Chronically Ill.

PubMed

Ingram, Douglas H

2015-09-01

Clinicians who provide psychotherapy to spouses or partners of the chronically ill were solicited through listserves of psychodynamic and other organizations. The current report excluded those therapists working with spouses of dementia patients. Interviews were conducted with clinicians who responded. The interviews highlight the challenges commonly encountered by psychotherapeutic work with this cohort of therapy patients. A comparison is drawn that shows both overlap and distinctions between the experiences of those therapists engaging with spouses of chronically ill patients without a dementing process and those working with spouses of chronically ill patients who do suffer from a dementing process.

Extending the P4P agenda, part 2: how Medicare can reduce waste and improve the care of the chronically ill.

PubMed

Wennberg, John E; Fisher, Elliott S; Skinner, Jonathan S; Bronner, Kristen K

2007-01-01

The care of Americans with severe chronic illnesses is disorganized, unnecessarily costly, and undisciplined by sound clinical science. The federal government should invest in a crash program to improve the scientific basis of managing chronic illness, and the Centers for Medicare and Medicaid Services (CMS) should extend its pay-for-performance (P4P) agenda to ensure that within ten years all Americans with severe chronic illnesses have access to accountable health care organizations providing evidence-based prospective care. This paper recommends a strategy for achieving this goal.

Regoaling: a conceptual model of how parents of children with serious illness change medical care goals

PubMed Central

2014-01-01

Background Parents of seriously ill children participate in making difficult medical decisions for their child. In some cases, parents face situations where their initial goals, such as curing the condition, may have become exceedingly unlikely. While some parents continue to pursue these goals, others relinquish their initial goals and generate new goals such as maintaining the child’s quality of life. We call this process of transitioning from one set of goals to another regoaling. Discussion Regoaling involves factors that either promote or inhibit the regoaling process, including disengagement from goals, reengagement in new goals, positive and negative affect, and hopeful thinking. We examine these factors in the context of parental decision making for a seriously ill child, presenting a dynamic conceptual model of regoaling. This model highlights four research questions that will be empirically tested in an ongoing longitudinal study of medical decision making among parents of children with serious illness. Additionally, we consider potential clinical implications of regoaling for the practice of pediatric palliative care. Summary The psychosocial model of regoaling by parents of children with a serious illness predicts that parents who experience both positive and negative affect and hopeful patterns of thought will be more likely to relinquish one set of goals and pursue a new set of goals. A greater understanding of how parents undergo this transition may enable clinicians to better support them through this difficult process. PMID:24625345

A Longitudinal Analysis of Stepfamily Relationship Quality and Adolescent Physical Health.

PubMed

Jensen, Todd M; Harris, Kathleen Mullan

2017-10-01

Approximately one third of youth are estimated to live with a biological parent and stepparent before reaching adulthood. Additional research is warranted whereby stepfamily processes are identified that drive variation in youth adjustment, particularly physical health. We examined stepfather-child, mother-child, and stepcouple relationship quality as predictors of levels and changes in adolescent physical health over time. We used a nationally representative sample of 1,233 adolescents living in biological mother-stepfather families from waves I (1994-1995) and II (1996) of the National Longitudinal Study of Adolescent to Adult Health. We incorporated measures of stepfather-child, mother-child, and stepcouple relationship quality, as well as adolescent reports of 10 physical health symptoms at waves I and II. Structural equation modeling was used to examine associations between wave I stepfamily relationships and adolescent physical symptoms at waves I and II. We used a zero-inflated negative binomial model to establish the validity of wave II adolescent physical symptoms as a predictor of an index of diagnosed chronic illnesses by wave IV (ages 26-32 years). Stepfather-child and mother-child relationship quality were negatively correlated with concurrent levels of adolescent physical symptoms. Stepfather-child relationship quality was negatively associated with change in adolescent physical symptoms over time. Adolescents with higher levels of physical symptoms at wave II were more likely to report chronic illnesses by adulthood. Stepfather-child relationship quality is a robust predictor of adolescent physical health throughout adolescence and is linked to chronic illness diagnoses in young adulthood. Future research should explore further the mechanisms that underlie this association. Copyright © 2017 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.

A window into living with an undiagnosed disease: illness narratives from the Undiagnosed Diseases Network.

PubMed

Spillmann, Rebecca C; McConkie-Rosell, Allyn; Pena, Loren; Jiang, Yong-Hui; Schoch, Kelly; Walley, Nicole; Sanders, Camilla; Sullivan, Jennifer; Hooper, Stephen R; Shashi, Vandana

2017-04-17

Patients' stories of their illnesses help bridge the divide between patients and providers, facilitating more humane medical care. Illness narratives have been classified into three types: restitution (expectation of recovery), chaos (suffering and loss), and quest (unexpected positive effect from illness). Undiagnosed patients have unique illness experiences and obtaining their narratives would provide insights into the medical and emotional impact of living with an undiagnosed illness. Adults and children with undiagnosed diseases apply to be evaluated by the Undiagnosed Diseases Network (UDN). Written illness narratives from 40 UDN applicants, including 20 adult probands who applied for themselves and 20 parents who applied for their children, were analyzed for: 1) narrative content and 2) narrative type. Narrative content: could be grouped into three themes: 1) Expectations of the UDN: the majority felt they had no further healthcare options and hoped the UDN would provide them with a diagnosis, with the adults expecting to return to their previously healthy life and the parents wanting information to manage their child's healthcare. 2) Personal medical information: the narratives reported worsening of symptoms and some offered opinions regarding the cause of their illness. The proband narratives had few objective findings, while parental narratives had detailed objective information. 3) Experiences related to living with their undiagnosed illness: frustration at being undiagnosed was expressed. The adults felt they had to provide validation of their symptoms to providers, given the lack of objective findings. The parents worried that something relevant to their child's management was being overlooked. Narrative type: All the narratives were of the chaos type, but for different reasons, with the probands describing loss and suffering and the parents expressing fear for their child's future. The parental narratives also had elements of restitution and quest, with acceptance of "a new normal", and an emphasis on the positive aspects of their child's illness which was absent from the probands. These narratives illustrate the chaos that coexists with being undiagnosed. The differences between the proband and parental narratives suggest that these two groups have different needs that need to be considered during their evaluation and management.

Parenting Stress through the Lens of Different Clinical Groups: a Systematic Review & Meta-Analysis

PubMed Central

Mendez, Lucybel; Graziano, Paulo A.; Bagner, Daniel M.

2017-01-01

Research has demonstrated an association between parenting stress and child behavior problems, and suggested levels of parenting stress are higher among parents of children at risk for behavior problems, such as those with autism and developmental delay (ASD/DD). The goal of the present study was to conduct a systematic review of parenting stress and child behavior problems among different clinical groups (i.e., ASD/DD, chronic illness, with or at-risk for behavioral and/or mood disorders). We also examined demographic and methodological variables as moderators and differences in overall levels of parenting stress between the clinical groups. This systematic review documents a link between parenting stress and child behavior problems with an emphasis on externalizing behavior. One-hundred thirty-three studies were included for quantitative analysis. Parenting stress was more strongly related to child externalizing (weighted ES r = 0.57, d = 1.39) than internalizing (weighted ES r = 0.37, d = 0.79) problems. Moderation analyses indicated that the association between parenting stress and behavior problems was stronger among studies which had mostly male and clinic-recruited samples. Overall, parenting stress levels were higher for parents of children with ASD/DD compared to parents of children from other clinical groups. Findings document the association between parenting stress and child behavior problems and highlight the importance of assessing parenting stress as part of routine care and throughout behavioral intervention programs, especially for groups of children at high risk for behavior problems, such as children with ASD/DD, in order to identify support for both the parent(s) and child. PMID:28555335

How do macro-level contexts and policies affect the employment chances of chronically ill and disabled people? Part II: The impact of active and passive labor market policies.

PubMed

Holland, Paula; Nylén, Lotta; Thielen, Karsten; van der Wel, Kjetil A; Chen, Wen-Hao; Barr, Ben; Burström, Bo; Diderichsen, Finn; Andersen, Per Kragh; Dahl, Espen; Uppal, Sharanjit; Clayton, Stephen; Whitehead, Margaret

2011-01-01

The authors investigate three hypotheses on the influence of labor market deregulation, decommodification, and investment in active labor market policies on the employment of chronically ill and disabled people. The study explores the interaction between employment, chronic illness, and educational level for men and women in Canada, Denmark, Norway, Sweden, and the United Kingdom, countries with advanced social welfare systems and universal health care but with varying types of active and passive labor market policies. People with chronic illness were found to fare better in employment terms in the Nordic countries than in Canada or the United Kingdom. Their employment chances also varied by educational level and country. The employment impact of having both chronic illness and low education was not just additive but synergistic. This amplification was strongest for British men and women, Norwegian men, and Danish women. Hypotheses on the disincentive effects of tighter employment regulation or more generous welfare benefits were not supported. The hypothesis that greater investments in active labor market policies may improve the employment of chronically ill people was partially supported. Attention must be paid to the differential impact of macro-level policies on the labor market participation of chronically ill and disabled people with low education, a group facing multiple barriers to gaining employment.

Optimising decision making on illness absenteeism due to fever and common infections within childcare centres: development of a multicomponent intervention and study protocol of a cluster randomised controlled trial.

PubMed

Peetoom, K K B; Crutzen, R; Bohnen, J M H A; Verhoeven, R; Nelissen-Vrancken, H J M G; Winkens, B; Dinant, G J; Cals, J W L

2017-07-26

Evidence has shown that children 0-4 year-old attending childcare are prone to acquire infections compared to children cared for at home, with fever being the most common symptom. Illness absenteeism due to fever and common infections is substantial and mostly driven by unrealistic concerns and negative attitude towards fever of both childcare staff and parents, resulting in illness absenteeism from childcare, work absenteeism among parents and healthcare service use. The objective of this study is to optimise decision making among childcare staff on illness absenteeism due to fever and common infections in childcare. Underlying determinants of behavioural change were targeted by means of a multicomponent intervention. A multicomponent intervention was developed to improve decision making, using the stepwise approach of Intervention Mapping, and in close collaboration with stakeholders and experts. The intervention consisted of 1) a two-hour educational session on fever among childcare staff; 2) an online video for childcare staff and parents emphasising key information of the educational session; 3) a decision tool for childcare staff and parents in the format of a traffic light system to estimate the severity of illness and corresponding advices for childcare staff and parents; 4) an information booklet regarding childhood fever, common infections, and self-management strategies for childcare staff and parents. The multicomponent intervention will be evaluated in a cluster randomised trial with a 12-week follow-up period and absenteeism due to illness (defined as the percentage of childcare days absent due to illness on the total of childcare days during a 12-week period) as primary outcome measure. Secondary outcome measures are: incidence rate and duration of illness episodes, knowledge, attitude, self-efficacy, and risk perception on fever and common infections of childcare staff and parents, healthcare service use in general and paracetamol use, and work absenteeism of parents. This study aims to develop a multicomponent intervention and to evaluate to what extent illness absenteeism due to fever and common infections can be affected by implementing a multicomponent intervention addressing decision making and underlying determinants among childcare staff and parents of children attending daycare. NTR6402 (registered on 21-apr-2017).

[The prevalence and influencing factors of abuse and negligence against elderly in rural areas of Anhui province].

PubMed

Su, Pu-yu; Hao, Jia-hu; Xiong, Li-ming; Yu, Dan-dan; Cao, Yue-ting; Fang, Yun; Jiang, Xiu-ling; Qian, Qiao-xia; Tao, Fang-biao

2011-02-01

To investigate the prevalence and influencing factors related to abuse and negligence against the elderly in the rural areas. 975 elderly over 60 years from 41 counties in Anhui province were included. All participants completed an anonymous questionnaire including items as: educational background, marital condition, income, child-discipline, rude action to parents, daily activities, physical functions, having chronic illness, abuse and negligence against the elderly, etc. In the last year, rates of common physical abuse, serious physical abuse, emotional abuse, financial exploitation, negligence, overall abuse and negligence against the elderly were 4.5%, 1.5%, 26.9%, 4.9%, 7.2%, 29.9% respectively. Among the 281 victims, 80.4% reported that they were suffered more than 3 times of abuse and neglect episodes, and 34.9% reported that they were suffered more than 2 forms of abuse and negligence. The primary sadism was carried out by the daughter-in-law or son-in-law (43.2%) of the elderly. Low activity on daily life and having chronic illness were the risk factors causing common physical abuse while better education was the protective factor to it. Low ability in managing daily activity of living was the risk factor causing serious physical abuse. Less active on daily life and having rude action to parents were the risk factors to emotional abuse, but being strict with their children was the protective factor to emotional abuse. Less active on daily life, often beating their children and having rude action to parents were the risk factors related to financial exploitation. Less active on daily life, having rude action to parents and having bad physical functions were the risk factors causing negligence. Less active on daily life and having rude manner to parents were the risk factors of overall elderly abuse and negligence, but being strict with their children was protective factor to the abuse and negligence against the elderly. High prevalence on abuse and negligence against the elderly was seen in the rural areas of China. Different forms on elderly abuse and negligence were affected by different factors that called for more attention to be paid to those elderly with lower ability in managing their daily life.

Understanding child protection decisions involving parents with mental illness and substance abuse.

PubMed

Roscoe, Joseph N; Lery, Bridgette; Chambers, Jaclyn E

2018-07-01

Among children investigated for maltreatment, those with parents experiencing mental illness or substance abuse are more likely to be placed out-of-home; however, little is known about why these children are at greater risk. Using a sample of 2488 Structured Decision Making ® assessments administered in San Francisco county from 2011 to 2015, we identified a profile of safety threats that accounts for why workers are more likely to determine children of parents with mental illness and/or substance abuse unsafe in the home. Eight percent of assessments in our sample involved parents with current mental illness only and 10% had comorbid substance abuse. The odds of an unsafe determination more than doubled among parents with mental illness (OR = 2.52, p < 0.001) and were nearly tenfold higher among parents with comorbid substance abuse (OR = 9.62, p < 0.001). Three safety threats accounted for all of the effect of parental mental illness on safety determination: caretaking impairment due to emotional stability/developmental status/cognitive deficiency (57%), failure to meet a child's immediate needs (30%), and threats of harm (14%). Three safety threats accounted for 55% of the effect of comorbid mental illness and substance abuse on safety determination: failure to meet a child's immediate needs (21%), presence of a drug-exposed infant (21%), and caretaking impairment due to emotional stability/developmental status/cognitive deficiency (14%). Results suggest that sustained linkage to effective mental health services and material resources at the outset of a child welfare case may help to promote faster and more likely reunification, and prevent future maltreatment. Copyright © 2018 Elsevier Ltd. All rights reserved.

A review and reanalysis of Bruno Schulz's "Erkrankungsalter schizophrener Eltern und Kinder [Age at onset of illness in schizophrenic parents and offspring]:" Zeitschrift für die gesamte Neurologie und Psychiatrie, 168, 709-721, 1940.

PubMed

Sham, P C; Zerbin-Rüdin, E; Kendler, K S

1995-01-01

Nearly all previous evidence of the familial transmission of age at onset of schizophrenia has been in siblings and twins. In his paper, Bruno Schulz examined the age at onset distribution of schizophrenia in affected parent and offspring pairs, using a systematic series of ascertained cases (n = 106), as well as a second series of chronic in-patients (n = 36). The parent-offspring correlation in age at onset, for cases with a definite diagnosis in the systematically ascertained series, was estimated at 0.346 (95% confidence interval 0.134, 0.528). Schulz did not test for differences between the two series and between males and females, but our reanalysis, using correlational methods and a mixed linear model, did not detect any significant differences. These results are consistent with previous findings that age at onset of schizophrenia is influenced by familial factors which may be genetic.

Development of a parent version of the Manchester-Minneapolis quality of life survey for use by parents and carers of UK children: MMQL-UK (PF)

PubMed Central

Hutchings, Hayley A; Upton, Penney; Cheung, Wai-Yee; Maddocks, Alison; Eiser, Christine; Williams, John G; Russell, Ian T; Jackson, Sonia; Jenney, Meriel EM

2008-01-01

Background Although it is now widely endorsed that children should as far as possible rate their own health related quality of life (HRQL), there are situations where proxy information on child HRQL may be useful, especially where a child is too ill or young to provide their own HRQL assessment. There is limited availability of generic HRQL scales that have a parallel child and parent version and that are reliable, valid, brief, comprehensible and suitable for use in UK populations. The aims of this study were therefore to develop and validate a parent version of the anglicised Manchester-Minneapolis Quality of Life child form (MMQL-UK (CF)) and to determine the level of association between the child and parent versions of this form. Methods This study was undertaken concurrently with the anglicisation and validation of the MMQL, a measure of HRQL developed for use with children in North America. At that time, no parent version existed, so the MMQL form for children (MMQL-UK (CF)) was used as the basis for the development of the MMQL-UK parent form (PF). The sample included a control group of healthy children and their parents and five exemplar groups; children diagnosed with asthma, diabetes or inflammatory bowel disease and their parents, children in remission from cancer and their parents and children in public care and their carers. Consistency of the MMQL-UK (PF) components were assessed by calculating Cronbach's alpha. Validation of the parent questionnaire was undertaken by comparing MMQL-UK (PF) component scores with comparable components on the proxy PedsQL™ quality of life scales, comparing MMQL-UK (PF) component scores between parents of healthy and chronic disease children and by comparison of component scores from children and their parents or carers. Reproducibility and responsiveness were assessed by retesting parents by follow-up questionnaires. Results A total of 874 children (completing MMQL-UK (CF)) and 572 parents or carers (completing MMQL-UK (PF)) took part in the study. The internal consistency of all the MMQL-UK (PF) components exceeding the accepted criterion of 0.70 and the construct validity was good with moderate correlations being evident between comparable components of the MMQL-UK (PF) and the proxy PedsQL™. Discriminant validity was demonstrated with significant differences being identified between parents of healthy children and those with chronic conditions. Intra-class correlations exceeded 0.65 for all MMQL-UK (PF) components demonstrating good reproducibility. Weak to moderate levels of responsiveness were demonstrated for all but social functioning. The MMQL-UK (PF) showed moderate parent-child correlation with the MMQL-UK (CF) for all components. The best correlations were seen for those components measuring the same construct (Pearson's r ranged from 0.31 to 0.61, p < 0.01 for equivalent components). Conclusion The MMQL-UK (PF) showed moderate to good correlations with the MMQL-UK (CF) component scores. The MMQL-UK (PF) will be of use when comparing child and parent/carer perception of the impact of a child's condition on their HRQL or where the child is too ill or young to provide their own report. PMID:18307771

Psychosocial Experiences of Chronic Illness in Individuals with an Intellectual Disability: A Systematic Review of the Literature

ERIC Educational Resources Information Center

Flynn, Samantha; Hulbert-Williams, Nicholas; Hulbert-Williams, Lee; Bramwell, Ros

2015-01-01

Background: Increased life expectancy has led to an increase in diagnoses of chronic illness in people with an intellectual disability; despite this increase, research about the psychological impact is rare. This review explored the psychosocial experiences of chronic illness in adults with an intellectual disability, revealing potential…

Life after the Shock! The Impact on Families of Caring for Young Children with Chronic Illness

ERIC Educational Resources Information Center

Ashton, Jean

2004-01-01

The stresses experienced by most families include limitations on time, conditions of employment, financial burdens and sibling rivalry. For the families of a child with a chronic illness, these stresses are often compounded, making family functioning problematic. Chronic illness is marked by permanency and the need for ongoing vigilance with…

Outcomes of On-Line Financial Education for Chronically Ill Rural Women

ERIC Educational Resources Information Center

Haynes, Deborah C.; Haynes, George W.; Weinert, Clarann

2011-01-01

This research was part of a larger longitudinal study of chronically ill rural women to determine if computer technology could be effective in allowing the women to take control of their own well-being, including finances. The current study examined whether chronically ill rural women can effectively use on-line personal finance educational…

When Parents Have Problems: A Book for Teens and Older Children with an Abusive, Alcoholic, or Mentally Ill Parent.

ERIC Educational Resources Information Center

Miller, Susan B.

This book was written for teenagers and older children who have abusive, alcoholic, or mentally ill parents. Emphasis is placed on young people in such situations using their intelligence, understanding that parents are fallible, viewing the future with optimism, facing reality, and seeing the good in other people rather than assuming everyone…

Parental evaluation of processes of care in relation to the child, parent and family characteristics.

PubMed

Groleger Sršen, Katja; Vidmar, Gaj; Sočan, Gregor; Zupan, Anton

2014-09-01

The Measure of Processes of Care (MPOC) is a questionnaire for parents used to evaluate the behaviours of healthcare providers. We applied its 20-item version (MPOC-20) to explore the associations between parental evaluation of processes of care and child, parent and family characteristics in Slovenia. A novelty of our approach was the emphasis on the role of a key person. Parents of 235 children who were admitted as inpatients or outpatients of six institutions (hospitals and health centres) because of chronic illness or disability participated in the study. Parents were asked to fill in a general questionnaire on several characteristics of the child, child's health problems, the family and the therapy programmes, and MPOC-20. Univariate associations of the five MPOC-20 scale scores with child, parent and family characteristics were tested first. Multiple linear regression was used for modelling scale scores in relation to child, parent and family characteristics. The analyses singled out availability of a key person as the factor most consistently and unequivocally influencing parental satisfaction. We also found a general positive effect of male sex of the child on the MPOC-20 scores. Neither the present age of children nor age at the onset of health problems was found to be associated with MPOC-20 scores. We found no notable association of the number of health problems with the MPOC-20 scores, but observed clear differences when comparing parental satisfaction with processes of care between different participating institutions.

Chronic Illness & Mental Health

MedlinePlus

... chronic medical conditions have a higher risk of depression. The same factors that increase risk of depression ... a chronic or long-term illness. People with depression are at higher risk for other medical conditions. ...

Online self-management interventions for chronically ill patients: cognitive impairment and technology issues.

PubMed

Archer, Norm; Keshavjee, Karim; Demers, Catherine; Lee, Ryan

2014-04-01

As the fraction of the population with chronic diseases continues to grow, methods and/or technologies must be found to help the chronically ill to take more responsibility to self-manage their illnesses. Internet based and/or mobile support for disease self-management interventions have often proved effective, but patients with chronic illnesses may have co-occurring cognitive impairment, making it more difficult for them to cope with technologies. Many older patients are also not familiar with technologies or they may have cognitive disabilities or dementia that reduce their ability to self-manage their healthcare. On-line solutions to the needs of chronically ill patients must be investigated and acted upon with care in an integrated manner, since resources invested in these solutions will be lost if patients do not adopt and continue to use them successfully. To review the capabilities of online and mobile support for self-management of chronic illnesses, and the impacts that age and disease-related issues have on these interventions, including cognitive impairment and lack of access or familiarity with Internet or mobile technologies. This study includes a review of the co-occurrence of cognitive impairment with chronic diseases, and discusses how cognitive impairment, dyadic caregiver patient support, patient efficacy with technology, and smart home technologies can impact the effectiveness and sustainability of online support for disease self-management. Disease self-management interventions (SMIs) using online patient centered support can often enable patients to manage their own chronic illnesses. However, our findings show that cognitive impairment often co-occurs in patients with chronic disease. This, along with age-related increases in multiple chronic illnesses and lack of technology efficacy, can be obstacles to Internet and mobile support for chronic disease self-management. Patients with chronic diseases may have greater than expected difficulties in using Internet and mobile technologies for disease self-management, often due to cognitive impairment or unfamiliarity with technology. Approaches to dealing with such barriers include suitable integration of solutions involving patient-caregiver dyads, better design of online applications, careful attention to technology adoption and sustainability, and smart home technologies. Copyright © 2014 Elsevier Ireland Ltd. All rights reserved.

Interviews with children of persons with a severe mental illness: investigating their everyday situation.

PubMed

Ostman, Margareta

2008-01-01

Research on children of persons with a severe mental illness focuses predominantly on parents' and others' perceptions. Children of mentally ill parents form a vulnerable group that has not been adequately paid attention to in psychiatric care institutions. Comparatively little is known about the children's recognition of their parents and the everyday situation of these families. The aim of the study was to investigate experiences of their life situation in children 10-18 years of age in a family with a parent with a severe mental illness. Eight children were interviewed concerning their everyday life situation. The interviews were analysed inspired from using thematic analysis. From the analysis of the material emerged aspects concerning the following themes: need for conversation, love for their family, maturity, experience of fear and blame, feelings of loneliness, responsibility and associated stigma. This study highlights the situation experienced by children of severely mentally ill persons who also are parents. The study may be found to be a basis for inspiring structured interventions and treatments programmes including children of the adult patients seeking psychiatric treatment.

Parental physical illness as a risk for psychosocial maladjustment in children and adolescents: epidemiological findings from a national survey in Germany.

PubMed

Barkmann, Claus; Romer, Georg; Watson, Maggie; Schulte-Markwort, Michael

2007-01-01

The authors assessed the risk for psychosocial maladjustment in a population-based sample of dependent children of parents with serious physical illness. In the context of The Hamburg Health Survey, a wide range of data on current life situation and health status was collected from a representative sample of families with children and adolescents between 4 and 18 years old (N=1,950). For 4- to 18-year-old children and adolescents in Germany, the prevalence of a serious physical illness in a parent was 4.1%. The adjusted risk of psychosocial maladjustment in this target group, depending on the case definition, is elevated, with internalizing problems being more prevalent than externalizing problems. Although problems for affected boys decline with puberty, they increase for girls. In this age-group, girls and boys appear to be under particular strain when the respective same-sex parent has a serious physical illness. Exposure to serious parental physical illness is an epidemiologically relevant risk factor for psychosocial maladjustment in children and adolescents that needs to be better recognized by medical professionals.

Perceived resource support for chronic illnesses among diabetics in north-western China.

PubMed

Zhong, Huiqin; Shao, Ya; Fan, Ling; Zhong, Tangshen; Ren, Lu; Wang, Yan

2016-06-01

A high level of social support can improve long-term diabetes self-management. Support from a single source has been evaluated. This study aims to analyze support from multiple and multilevel sources for diabetic patients by using the Chronic Illness Resources Survey (CIRS). Factors influencing the utilization of the CIRS were also evaluated. A total of 297 patients with diabetes were investigated using the CIRS and Perceived Diabetes Self-management Scale in Shihezi City, China. Descriptive statistics were used to explain demographic variables and scores of the scales. Factors affecting the utilization of chronic illness resources were determined through univariate analysis and then examined by multivariate logistic regression analysis. Of the 297 diabetic patients surveyed, 67% failed to reach the standard (more than 3 points) of utilizing chronic illness resources. Moreover, utilization of chronic illness resources was positively moderately correlated with self-management of diabetes (r = 0.75, P < 0.05). According to the multivariate logistic regression analysis, age (OR, 3.42; 95%CI, 1.19-9.84) and monthly income (OR, 5.27; 95%CI, 1.86-14.90) were significantly positively associated with the CIRS score. Individuals with high school (OR, 2.61; 95%CI, 1.13-6.05) and college (OR, 3.02; 95%CI, 1.13-8.04) degrees obtained higher scores in the survey than those with elementary school education. Results indicated that utilization of resources and support for chronic illness self-management, particularly personal adjustment and organization, were not ideal among diabetics in the communities of north-western China. Improved utilization of chronic illness resources was conducive for proper diabetes self-management. Furthermore, the level of utilization of chronic illness resources increased with age, literacy level, and monthly income.

Neighbourly support of people with chronic illness; is it related to neighbourhood social capital?

PubMed

Waverijn, Geeke; Heijmans, Monique; Groenewegen, Peter P

2017-01-01

The neighbourhood may provide resources for health. It is to date unknown whether people who live in neighbourhoods with more social capital have more access to practical and emotional support by neighbours, or whether this is a resource only available to those who are personally connected to people in their neighbourhood. We investigated whether support by neighbours of people with chronic illness was related to neighbourhood social capital and to individual neighbourhood connections. Furthermore, we investigated whether support received from neighbours by people with chronic illness differed according to demographic and disease characteristics. We collected data on support by neighbours and individual connections to neighbours among 2272 people with chronic illness in 2015. Data on neighbourhood social capital were collected among 69,336 people in 3425 neighbourhoods between May 2011 and September 2012. Neighbourhood social capital was estimated with ecometric measurements. We conducted multilevel regression analyses. People with chronic illness were more likely to receive practical and emotional support from neighbours if they had more individual connections to people in their neighbourhood. People with chronic illness were not more likely to receive practical and emotional support from neighbours if they lived in a neighbourhood with more social capital. People with chronic illness with moderate physical disabilities or with comorbidity, and people with chronic illness who lived together with their partner or children, were more likely to receive support from neighbours. To gain more insight into the benefits of neighbourhood social capital, it is necessary to differentiate between the resources only accessible through individual connections to people in the neighbourhood and resources provided through social capital on the neighbourhood level. Copyright © 2016 Elsevier Ltd. All rights reserved.

A literature review on self-care of chronic illness: definition, assessment and related outcomes.

PubMed

Ausili, Davide; Masotto, Matteo; Dall'Ora, Chiara; Salvini, Lorena; Di Mauro, Stefania

2014-01-01

Chronic illnesses care represents a challenging issue for people well-being and future health systems' sustainability. Promotion of self-care is considered a key point for chronically ill patients' care. The aim of this literature was to explore: how self-care of chronic illness has been theoretically defined; how self-care can be assessed in clinical and research settings; what associations exist between self-care and health outcomes of chronically ill patients. A wide range of definitions and terminologies related to self-care of chronic illness has been found in the literature. Although some common elements useful to explain the concept of self-care have been identified, the physical, cognitive, emotional and social processes underlying self-care remain controversial and poorly defined. Valid and reliable disease-specific assessment tools have been developed and used in a growing number of studies; however, the lack of utilization of standardized instruments in clinical practice has been referred by many authors. Significant correlations between self-care of chronic illness and outcome measures e.g. general health status, quality of life and healthcare costs, are reported by a limited number of studies. Supporting patient self-care is recognized as a crucial factor in chronic illness care. A deeper analysis of variables and processes influencing self-care could help for a full description of the phenomenon. A systematic evaluation of self-care in health professionals' everyday clinical practice is strongly recommended. The development of general non-disease-specific assessment tools could facilitate the evaluation of complex patients, especially those with multiple co-morbidities. Although self-care has been recognized as a vital intermediate outcome, further large-scale studies clarifying the association between self-care and patients' and health systems' outcomes are needed.

Attitudes toward mental illness in adults by mental illness-related factors and chronic disease status: 2007 and 2009 Behavioral Risk Factor Surveillance System.

PubMed

Kobau, Rosemarie; Zack, Matthew M

2013-11-01

We examined how attitudes toward mental illness treatment and its course differ by serious psychological distress, mental illness treatment, chronic disease, and sociodemographic factors using representative state-based data. Using data from jurisdictions supporting the Behavioral Risk Factor Surveillance System's Mental Illness and Stigma Module (35 states, the District of Columbia, and Puerto Rico), we compared adjusted proportions of adults agreeing that "Treatment can help people with mental illness lead normal lives" (treatment effectiveness) and that "People are generally caring and sympathetic to people with mental illness" (supportive environment), by demographic characteristics, serious psychological distress, chronic disease status, and mental illness treatment. Attitudes regarding treatment effectiveness and a supportive environment for people with mental illness varied within and between groups. Most adults receiving mental illness treatment agreed that treatment is effective. Fewer adults with serious psychological distress than those without such distress agreed that treatment is effective. Fewer of those receiving treatment, those with psychological distress, and those with chronic disease perceived the environment as supportive. These data can be used to target interventions for population subgroups with less favorable attitudes and for surveillance.

Giving patients responsibility or fostering mutual response-ability: family physicians' constructions of effective chronic illness management.

PubMed

Thille, Patricia H; Russell, Grant M

2010-10-01

Current visions of family medicine and models of chronic illness management integrate evidence-based medicine with collaborative, patient-centered care, despite critiques that these constructs conflict with each other. With this potential conflict in mind, we applied a critical discursive psychology methodology to present discursive patterns articulated by 13 family physicians in Ontario, Canada, regarding care of patients living with multiple chronic illnesses. Physicians constructed competing versions of the terms "effective chronic illness management" and "patient involvement." One construction integrated individual responsibility for health with primacy of "evidence," resulting in a conceptualization consistent with paternalistic care. The second constructed effective care as involving active partnership of physician and patient, implying a need to foster the ability of both practitioners and patients to respond to complex challenges as they arose. The former pattern is inconsistent with visions of family medicine and chronic illness management, whereas the latter embodies it.

Violence by Parents Against Their Children: Reporting of Maltreatment Suspicions, Child Protection, and Risk in Mental Illness.

PubMed

McEwan, Miranda; Friedman, Susan Hatters

2016-12-01

Psychiatrists are mandated to report suspicions of child abuse in America. Potential for harm to children should be considered when one is treating parents who are at risk. Although it is the commonly held wisdom that mental illness itself is a major risk factor for child abuse, there are methodologic issues with studies purporting to demonstrate this. Rather, the risk from an individual parent must be considered. Substance abuse and personality disorder pose a separate risk than serious mental illness. Violence risk from mental illness is dynamic, rather than static. When severe mental illness is well-treated, the risk is decreased. However, these families are in need of social support. Copyright © 2016 Elsevier Inc. All rights reserved.

What Do Children with Chronic Diseases and Their Parents Think About Pediatricians? A Qualitative Interview Study.

PubMed

Konstantynowicz, Jerzy; Marcinowicz, Ludmiła; Abramowicz, Paweł; Abramowicz, Magdalena

2016-08-01

Objectives The aim of this study was to determine how pediatric patients and their parents perceive health care during hospital stays, what are their expectations of doctor behaviors, and which components of care do they consider to be the most important. Methods A qualitative descriptive study was carried out using the open interview technique. Twenty-six parents and 22 children undergoing hospital treatment participated. Results Our analysis identified two major themes: (1) doctor verbal and non-verbal behaviors, which included informing and explaining, conversations on topics other than the illness, tone of voice and other behaviors; and (2) perceived strategies used by doctors. This category included claims of doctors' intentional use of medical jargon to avoid addressing parental questions directly. Parents admitted that they did not understand medical vocabulary, but they also thought they might understand more of the medical issues if the doctor spoke using terms comprehensible to them. Conlcusions Our study shows the importance of interpersonal relationship affecting patient perception of quality of pediatric care. Parents of pediatric patients perceive that doctors behave in ways that deflect parents' questions and avoid providing them with medical information. Such behaviors include doctors excusing themselves by saying they are busy and using medical jargon. Medical students and doctors should be trained to communicate effectively with patients and their parents and develop skills to convey information in a simple and comprehensible way.

PETS-D (Parents Education Through Simulation – Diabetes): Parents’ Qualitative Results

PubMed Central

Ramchandani, Neesha; Maguire, Laura L.; Stern, Kailyn; Quintos, Jose B.; Lee, Mary; Sullivan-Bolyai, Susan

2016-01-01

Objective Parents who have a child newly diagnosed with type 1 diabetes (T1D) must quickly learn daily diabetes self-management. An RCT was conducted using human patient simulation (HPS) to enhance parents learning diabetes self-management with children with new-onset T1D. The purpose of this study was to describe parents’ perspectives of using HPS to augment diabetes education. Methods A qualitative descriptive design was used with open-ended in-depth interviews of parents (n=49) post-intervention. Qualitative directed content analysis was used. Results The majority of parents were positive about learning with HPS. Although a few parents said the HPS was “hokey” or “creepy,” most reported the visual and hands-on learning was realistic and very beneficial. Seeing a seizure increased their fear although they would have panicked if they had not had that learning experience, and it helped build their diabetes self-management confidence. Recommendations included teaching others with the HPS (grandparents, siblings, babysitters, and school nurses). Conclusion HPS-enhanced education is an acceptable and viable option that was generally well-received by parents of children with new-onset T1D. Practice Implications The technique should be studied with parents of children with other chronic illnesses to see if the benefits found in this study are applicable to other settings. PMID:27021779

A center for self-management of chronic illnesses in diverse groups.

PubMed

Inouye, Jillian; Boland, Mary G; Nigg, Claudio R; Sullivan, Kathleen; Leake, Anne; Mark, Debra; Albright, Cheryl L

2011-01-01

Prevention and successful treatment of chronic disease require a scientific understanding of the impacts and interactions of ethnicity, culture, and illness on self-management interventions. This article presents one approach to developing effective methods to address the needs of ethnic minorities living with chronic illnesses. Described is the University of Hawaii Center for Ohana Self-Management of Chronic Illnesses (COSMCI) located in the School of Nursing & Dental Hygiene and funded by the National Institute of Nursing Research (Award Number P20NR010671). The interdisciplinary center focuses on family and community self-management interventions in ethnically diverse populations with chronic illnesses. Areas discussed are: 1) the operational structure for creating an environment conducive to interdisciplinary ohana self-management chronic illness research in ethnically diverse populations; and 2) the development of sustainable interdisciplinary, biobehavioral research capacity. The COSMCI uses a social cognitive theory framework to guide the application of established self-management interventions to Asian and Pacific Island populations (API) through three conceptually linked research projects on HIV infection, type 2 diabetes, and chronic obstructive pulmonary disease. COSMI addresses the feasibility of sharing of lessons learned among the approaches taken. The interdisciplinary nature of COSMCI increases the potential success of the intervention efforts. Hawaii Medical Journal Copyright 2010.

Posttraumatic growth in parents caring for a child with a life-limiting illness: A structural equation model.

PubMed

Cadell, Susan; Hemsworth, David; Smit Quosai, Trudy; Steele, Rose; Davies, Elizabeth; Liben, Stephen; Straatman, Lynn; Siden, Harold

2014-03-01

When parents first meet their child, they take on the entwined joys and burdens of caring for another person. Providing care for their child becomes the basic expectation, during health and illness, through the developmental milestones, into adulthood and beyond. For those parents who have a child who is born with or is later diagnosed with a life-limiting illness, parents also become caregivers in ways that parents of predominantly well children do not. While the circumstances are undisputedly stressful, for some parents benefits can co-occur along with the negative outcomes. This article tests two structural equation models of possible factors that allow these parent caregivers to experience growth in the circumstances. The diagnosis and illness of a child in the context of pediatric palliative care is a very complex experience for parents. The stresses are numerous and life-changing and yet the parents in this research demonstrated growth as measured by the Post Traumatic Growth Inventory. It appears that particular personal resources reflected in personal well-being are a precursor to the process of positive meaning making, which then, in turn, contributes to growth. The path to posttraumatic growth is not a simple one, but this research contributes to further elucidating it.

'Don't put the parent out': parents' perspectives of being present during an inter-hospital transfer.

PubMed

Masterson, Kate; Brenner, Maria

2016-05-01

To understand Irish parents' experiences of the inter-hospital transfer of their acutely ill child from a regional hospital to a tertiary children's hospital. Much of the literature on inter-hospital transfer focuses on the medical outcome of children who have been transferred for specialist care. While parental presence during this journey is the focus of discussion papers, little is known about the experience of parents as service users. A qualitative design using a Husserlian phenomenological approach was adopted for this study. Semi-structured interviews were conducted with ten parents between March and October 2014 to explore their experiences of parental presence during the transfer of an acutely ill child. Data were analysed using the modified Van Kaam method. Two key themes emerged 'don't put the parent out' and 'being a parent'. Given a choice, all parents interviewed would have wished to stay with their child during transfer and the findings portray the specific contribution of parents during the journey. Not being permitted to travel with their acutely ill child had a negative effect on parents' perceptions of their ability to continue to parent their child during transfer to specialist paediatric services. To address this there is a need for parents to have the choice, when at all possible, to stay with their child at this time. There is a need to maximise the facilitation of parental presence in an Irish context through the introduction of guidelines to support staff involved in the transfer of an acutely ill child. © 2016 John Wiley & Sons Ltd.

Family adjustment across cultural groups in autistic spectrum disorders.

PubMed

Lobar, Sandra L

2014-01-01

This pilot ethnomethodological study examined perceptions of parents/caregivers of children diagnosed with autistic spectrum disorders concerning actions, norms, understandings, and assumptions related to adjustment to this chronic illness. The sample included 14 caregivers (75% Hispanic of various ethnic groups). Maximum variation sampling was used to compare participants on variables that were inductively derived via constant comparative methods of analysis. The following action categories emerged: "Seeking Diagnosis," "Engaging in Routines to Control behavior," "Finding Therapies (Types of Therapies)," "Finding School Accommodations," "Educating Others," "Rising to Challenges," and "Finding the Role of Spiritual and Religious Belief."

Chronic illness and Hmong shamans.

PubMed

Helsel, Deborah; Mochel, Marilyn; Bauer, Robert

2005-04-01

Among the challenges health care personnel in California's central valley face has been finding ways to help Hmong Americans manage chronic illness. Interviews were conducted with 11 Hmong shamans diagnosed with diabetes or hypertension and were qualitatively analyzed to ascertain respondents' understanding and management of their illnesses. Hmong shamans are influential individuals within their communities and are often the resource persons to whom patients turn for information on health. Understanding the shamans' perspective on chronic illness was seen as a gateway to understanding how the broader Hmong American community perceived these conditions. The concept of chronic illness was not well understood, resulting in sporadic medication and dietary regimens, limited awareness of potential complications, and a persistent impression that these illnesses could be cured rather than managed. Suggestions for patient educators include family and community involvement in care regimens and the use of descriptive terminology to identify the disease.

Sleep and Culture in Children with Medical Conditions

PubMed Central

Koinis-Mitchell, Daphne

2010-01-01

Objectives To provide an integrative review of the existing literature on the interrelationships among sleep, culture, and medical conditions in children. Methods A comprehensive literature search was conducted using PubMed, Medline, and PsychINFO computerized databases and bibliographies of relevant articles. Results Children with chronic illnesses experience more sleep problems than healthy children. Cultural beliefs and practices are likely to impact the sleep of children with chronic illnesses. Few studies have examined cultural factors affecting the relationship between sleep and illness, but existing evidence suggests the relationship between sleep and illness is exacerbated for diverse groups. Conclusions Sleep is of critical importance to children with chronic illnesses. Cultural factors can predispose children both to sleep problems and to certain medical conditions. Additional research is needed to address the limitations of the existing literature, and to develop culturally sensitive interventions to treat sleep problems in children with chronic illnesses. PMID:20332222

An Exploratory Study of the Relationship of Family Support and Coping with Adjustment: Implications for College Students with a Chronic Illness

ERIC Educational Resources Information Center

Wodka, Ericka L.; Barakat, Lamia P.

2007-01-01

To examine the role of family support and coping in the adjustment of adolescents with chronic illness (CI) transitioning into college, college freshmen and sophomores (N[subscript chronic illness] = 32, N[subscript primarily negative life event] = 53, N[subscript primarily positive life event] = 16) were administered standard measures. CI group…

Nutritional Needs of the Handicapped/Chronically Ill Child. Manual I: Nutrition Program Planning. Presentations from a National Interdisciplinary Symposium.

ERIC Educational Resources Information Center

Ekvall, Shirley M., Ed.; And Others

The following papers were delivered at a symposium on improving the nutritional status of a child who is chronically ill or handicapped: (1) "Planning Comprehensive Health Services for the Chronically Ill/Handicapped Child; (2) "Future National Directions in Maternal and Child Health"; (3) "Nutrition Services in a State Crippled Children's…

Reserve-building activities attenuate treatment burden in chronic illness: The mediating role of appraisal and social support

PubMed Central

Schwartz, Carolyn E; Zhang, Jie; Michael, Wesley; Eton, David T; Rapkin, Bruce D

2018-01-01

This study examines the importance of four psychosocial factors—personality, cognitive appraisal of quality of life, social support, and current reserve-building—in predicting treatment burden in chronically ill patients. Chronically ill patients (n = 446) completed web-based measures. Structural equation modeling was used to investigate psychosocial factors predicting treatment burden. Reserve-building activities indirectly reduced treatment burden by: (1) reducing health worries appraisals, (2) reducing financial difficulties, (3) increasing calm and peaceful appraisals, and (4) increasing perceived social support. These findings point to key behaviors that chronically ill people can use to attenuate their treatment burden. PMID:29785278

Tools to assess living with a chronic illness: A systematic review.

PubMed

Ambrosio, Leire; Portillo, Mari Carmen

2018-05-16

To analyse the currently available instruments to assess living with a chronic illness and related aspects. A review of the evidence was made using the databases: Medline, CINHAL, PsycINFO, Cochrane Library, Embase and Cuiden. The criteria that limited the search were: the language, English and / or Spanish and studies carried out in an adult population. Years of article publication were not used as a limit. A total of 16 instruments were identified and analysed that apparently measured the concept of living with a chronic illness and/or related aspects. According to the name of the instrument, four seemed to evaluate the concept of living with a chronic illness while the rest of the instruments evaluated aspects intrinsically related to the concept of "living with", such as attributes or the meaning of living with a chronic illness. Different instruments were identified to evaluate daily living for the chronically ill patient, as well as related aspects. According to this review, further validation studies are required in other populations and/or contexts in order to achieve valid and reliable instruments that could be used in clinical practice. Copyright © 2018 Elsevier España, S.L.U. All rights reserved.

Practice Wisdom on Custodial Parenting with Mental Illness: A Strengths View

ERIC Educational Resources Information Center

Zeman, Laura Dreuth; Buila, Sarah

2006-01-01

Social work principles of strengths, empowerment, and consumer-centered care for persons with mental illness are currently being adapted to broader contexts. This article presents study findings on practice wisdom about custodial parents with mental illness, a potentially increasing group of consumers in light of mental health reform. The research…

Absence from school related to cancer and other chronic conditions.

PubMed Central

Charlton, A; Larcombe, I J; Meller, S T; Morris Jones, P H; Mott, M G; Potton, M W; Tranmer, M D; Walker, J J

1991-01-01

Absence from school during the first year after starting major treatment for cancer or chronic or orthopaedic conditions was examined. Retrospective data were collected on 72 children and obtained from hospital records, school registers, and interviews with parents and teachers. Median initial absences caused by treatment were 91, 29-5, and 15 days for cancer, chronic, and orthopaedic patients respectively. The mean proportions of the remaining school time in the year occupied by absences caused by treatment and those not caused by treatment were respectively 17% and 17% for oncology patients, 8% and 12% for chronic patients, and 2% and 11% for orthopaedic patients. The only significant factor associated with the amount of absence caused by treatment was the type of illness. Increased absence not caused by treatment was associated with the amount of treatment time and the patient being a girl. The proportion of absence not caused by treatment decreased if the mother was educated beyond the age of 18. The possible reasons for and effects of excess absence are discussed. PMID:1953006

Quick screening tool for patients with severe negative emotional reactions to chronic illness: psychometric study of the negative emotions due to chronic illness screening test (NECIS).

PubMed

Huang, Yun-Hsin; Wu, Chih-Hsun; Chen, Hsiu-Jung; Cheng, Yih-Ru; Hung, Fu-Chien; Leung, Kai-Kuan; Lue, Bee-Horng; Chen, Ching-Yu; Chiu, Tai-Yuan; Wu, Yin-Chang

2018-01-16

Severe negative emotional reactions to chronic illness are maladaptive to patients and they need to be addressed in a primary care setting. The psychometric properties of a quick screening tool-the Negative Emotions due to Chronic Illness Screening Test (NECIS)-for general emotional problems among patients with chronic illness being treated in a primary care setting was investigated. Three studies including 375 of patients with chronic illness were used to assess and analyze internal consistency, test-retest reliability, criterion-related validity, a cut-off point for distinguishing maladaptive emotions and clinical application validity of NECIS. Self-report questionnaires were used. Internal consistency (Cronbach's α) ranged from 0.78 to 0.82, and the test-retest reliability was 0.71 (P < 0.001). Criterion-related validity was 0.51 (P < 0.001). Based on the 'severe maladaptation' and 'moderate maladaptation' groups defined by using the 'Worsening due to Chronic Illness' index as the analysis reference, the receiver-operating characteristic curve analysis revealed an area under the curve of 0.81 and 0.82 (ps < 0.001), and a cut-off point of 19/20 was the most satisfactory for distinguishing those with overly negative emotions, with a sensitivity and specificity of 83.3 and 69.0%, and 68.5 and 83.0%, respectively. The clinical application validity analysis revealed that low NECIS group showed significantly better adaptation to chronic illness on the scales of subjective health, general satisfaction with life, self-efficacy of self-care for disease, illness perception and stressors in everyday life. The NECIS has satisfactory psychometric properties for use in the primary care setting. © The Author 2017. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Individual care plans for chronically ill patients within primary care in the Netherlands: Dissemination and associations with patient characteristics and patient-perceived quality of care.

PubMed

Jansen, Daphne L; Heijmans, Monique; Rijken, Mieke

2015-06-01

To examine the use of individual care plans (ICPs) within primary chronic illness care in the Netherlands, and to explore the relationships between ICP use, patient characteristics, and patient-perceived quality of care. Cross-sectional study using survey data from a panel of chronically ill patients and medical registration data provided by their general practices. A sample of 1377 patients with somatic chronic disease(s) randomly selected in general practices throughout the Netherlands, supplemented with a sample of 225 COPD patients, also recruited from general practices. (i) Percentage of ICP use based on self-report by chronically ill patients, and (ii) patient-perceived quality of care as assessed using the Patient Assessment of Chronic Illness Care (PACIC). ICP use among the total generic sample was low (9%), but slightly higher (13%) among patients diagnosed with diabetes or COPD, diseases for which disease management programmes have been set up in the Netherlands. Patients with a low educational level and patients with poor(er) self-rated health were more likely to have an ICP. Compared with patients without an ICP, patients with an ICP more often reported that the care they received was patient-centred, proactive, planned, and included collaborative goal setting, problem-solving, and follow-up support. Findings reveal a discrepancy between practice and policy aspirations regarding ICP use in primary chronic illness care. More research is needed to gain insight into the effectiveness of ICPs to improve the quality of chronic illness care in various patient populations.

Effectiveness of a cough management algorithm at the transitional phase from acute to chronic cough in Australian children aged <15 years: protocol for a randomised controlled trial.

PubMed

O'Grady, Kerry-Ann F; Grimwood, Keith; Toombs, Maree; Sloots, Theo P; Otim, Michael; Whiley, David; Anderson, Jennie; Rablin, Sheree; Torzillo, Paul J; Buntain, Helen; Connor, Anne; Adsett, Don; Meng Kar, Oon; Chang, Anne B

2017-03-03

Acute respiratory infections (ARIs) are leading causes of hospitalisation in Australian children and, if recurrent, are associated with increased risk of chronic pulmonary disorders later in life. Chronic (>4 weeks) cough in children following ARI is associated with decreased quality-of-life scores and increased health and societal economic costs. We will determine whether a validated evidence-based cough algorithm, initiated when chronic cough is first diagnosed after presentation with ARI, improves clinical outcomes in children compared with usual care. A multicentre, parallel group, open-label, randomised controlled trial, nested within a prospective cohort study in Southeast Queensland, Australia, is underway. 750 children aged <15 years will be enrolled and followed weekly for 8 weeks after presenting with an ARI with cough. 214 children from this cohort with persistent cough at day 28 will be randomised to either early initiation of a cough management algorithm or usual care (107 per group). Randomisation is stratified by reason for presentation, site and total cough duration at day 28 (<6 and ≥6 weeks). Demographic details, risk factors, clinical histories, examination findings, cost-of-illness data, an anterior nasal swab and parent and child exhaled carbon monoxide levels (when age appropriate) are collected at enrolment. Weekly contacts will collect cough status and cost-of-illness data. Additional nasal swabs are collected at days 28 and 56. The primary outcome is time-to-cough resolution. Secondary outcomes include direct and indirect costs of illness and the predictors of chronic cough postpresentation. The Children's Health Queensland (HREC/15/QRCH/15) and the Queensland University of Technology University (1500000132) Research Ethics Committees have approved the study. The study will inform best-practice management of cough in children. ACTRN12615000132549. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

A meta-ethnographic synthesis on phenomenographic studies of patients’ experiences of chronic illness

PubMed Central

Röing, Marta

2015-01-01

Phenomenography is a qualitative research approach developed within an educational framework, focusing on the qualitative experience of learning. It is also being used, to a lesser degree, in healthcare research. In the present study, we conducted a meta-ethnographic synthesis of phenomenographic studies on chronic illness, in order to give a broader perspective of how chronic illness can be experienced. Our aim was not to describe patients’ various individual experiences of illness, but instead to identify the different ways chronic illness can be experienced by patients. Our synthesis and phenomenographic interpretation of 12 selected articles found that patients’ experiences of chronic illness can be described in terms of a different lived body, a struggle with threat to identity and self-esteem, a diminished lifeworld, and a challenging reality. These experiences relate to each other in a process of recurring loops, where the different ways of experiencing continue to influence each other over time. According to these findings, the use of phenomenography as a research approach has the potential to add to the understanding of how chronic illness can be experienced. Patients may benefit from seeing that their illness can be experienced in many different ways and that it has many aspects, which then can lead to a better understanding and coping with their illness. We suggest that it may be worthwhile to expand the scope of phenomenography outside pedagogics. This presupposes a revision of the application to include a wider and more comprehensive description, for instance, of the different ways illness and healthcare phenomena can be experienced, and how these different ways are related to each other, with less focus on hierarchical relations. PMID:25690674

Parental health shocks, child labor and educational outcomes: Evidence from Tanzania.

PubMed

Alam, Shamma Adeeb

2015-12-01

This paper examines the impact of parental illness on children's education. We find that only father's illness decreases children's school attendance. Father's illness also has long-term impacts on child education, as it decreases children's likelihood of completing primary school and leads to fewer years of schooling. However, we find no evidence that father's illness affects schooling through increased child labor. Instead, father's illness decreases household's income and reduces school attendance possibly because of the reduced ability of the family to afford education. In contrast, mother's illness and illness of other household members have no effect on children's schooling. Copyright © 2015. Published by Elsevier B.V.

Changes in Parental Hopes for Seriously Ill Children.

PubMed

Hill, Douglas L; Nathanson, Pamela G; Carroll, Karen W; Schall, Theodore E; Miller, Victoria A; Feudtner, Chris

2018-04-01

Hopes of parents of children with serious illness play an important role in decision-making and coping. Little is known about how parent hopes change over time. We describe the changes in parent hopes across multiple domains and time intervals, examine hopes in a subgroup of parents whose child died, and explore the maintenance of domains over time. In a mixed-methods prospective cohort study on decision-making, parents of seriously ill children reported demographic characteristics and hopes at baseline and reported any changes in hopes at 4-, 8-, 12-, 16-, and 20-month follow-up visits. Hopes were coded into 9 domains. Hope changes and domain changes were identified for each parent at each visit. One hundred and ninety-nine parents of 158 patients most often reported hopes in the domains of quality of life (75%), physical body (69%), future well-being (47%), and medical care (34%). Hope percentages increased over time for quality of life (84%), future well-being (64%), and broader meaning (21%). The hope domains reported by parents of children who died were similar to the rest of the sample. The majority of parents who completed 5 to 6 follow-up visits changed at least 1 domain. At the individual parent level, some domains revealed considerable change over time, whereas other domains were stable among a subset of parents. The specific hopes and overall areas of hope of parents of seriously ill children vary over time, although most hopes fall within 4 major areas. Accordingly, clinicians should regularly check with parents about their current hopes. Copyright © 2018 by the American Academy of Pediatrics.

The Role of Lay Health Workers in Pediatric Chronic Disease: A Systematic Review

PubMed Central

Raphael, Jean L.; Rueda, Anna; Lion, K. Casey; Giordano, Thomas P.

2013-01-01

Background Children with chronic diseases represent a high-cost and resource-intensive population of children. With continued gaps in chronic disease management and persistent fragmentation in the health care system, stakeholders are seeking new strategies to address the needs of these children. Objective To systematically assess the effectiveness of lay health worker interventions in improving health care utilization, symptom management, and family psychosocial outcomes for children with chronic conditions. Data Source PubMed, PsycINFO, and Web of Science (January 1961- February 2013). Study Eligibility Criteria, Participants, and Interventions We developed a strategy to search citations to identify relevant articles. Search terms included randomized controlled trial (RCT), lay worker, parent mentor, peer mentor, peer educator, community health workers, community health aids, patient advocate, patient facilitator, patient liaison, promotoras (es), care ambassadors, patient navigator, and non-professional. Additional studies were identified by searching the reference lists of retrieved articles and contacting clinical experts. RCTs of lay health worker interventions for children with chronic conditions were included. Studies were restricted to those concentrated on children 0–18 years of age with chronic illnesses. Study Appraisal and Synthesis Methods Abstracts were independently screened by 2 reviewers. Articles with relevant abstracts underwent full text review and were evaluated for inclusion criteria. A structured tool was used to abstract data from selected articles. Due to heterogeneous interventions and outcomes, we did not conduct a meta-analysis. Results The search yielded 736 unique articles, of which 17 met inclusion criteria. All interventions focused on specific conditions: asthma, type I diabetes, obesity, and failure to thrive. Interventions were heterogeneous in frequency, mode, and duration of interactions between lay health workers and subjects. Several interventions were multi-faceted, including both one-on-one and group interactions. Improved outcomes most commonly reported were reduced urgent care use, decreases in symptoms, fewer missed work and school days, and increased parental quality of life. One study demonstrated that lay health worker interventions were cost-effective. Conclusions Lay health workers interventions in children with chronic conditions may lead to modest improvements in urgent care use, symptoms, and parental psychosocial outcomes. Such interventions may also be cost-effective. Future research should focus on interventions targeted toward other chronic conditions such as sickle cell disease or cystic fibrosis and medically complex children whose conditions are non-categorical. PMID:24011745

Parents' early healthcare transition experiences with preterm and acutely ill infants: a scoping review.

PubMed

Ballantyne, M; Orava, T; Bernardo, S; McPherson, A C; Church, P; Fehlings, D

2017-11-01

Parents undergo multiple transitions following the birth of an ill infant: their infant's illness-health trajectory, neonatal intensive care unit hospitalization and transfers from one healthcare setting to another, while also transitioning to parenthood. The objective of this review was to map and synthesize evidence on the experiences and needs of parents of preterm or ill infants as they transition within and between healthcare settings following birth. The scoping review followed Arskey and O'Malley's () framework, enhanced by Levac et al. (). Relevant studies were identified through a comprehensive search strategy of scientific and grey literature databases, online networks, Web of Science and citation lists of relevant articles. Inclusion criteria encompassed a focus on infants undergoing a healthcare transition, and the experiences and needs of parents during transition. Studies were appraised for design quality, and data relevant to parent experiences were extracted and underwent thematic analysis. A total of 7773 records were retrieved, 90 full texts reviewed and 11 articles synthesized that represented a total sample of 435 parents of preterm or ill infants. Parents reported on their experiences in response to their infant's transition within and between hospitals and across levels of neonatal intensive care unit, intermediate and community hospital care. Ten studies used qualitative research methods, while one employed quantitative survey methods. Four key themes were identified: that of parent distress throughout transition, parenting at a distance, sources of stress and sources of support. Parents' stress resulted from not being informed or involved in the transition decision, inadequate communication and perceived differences in cultures of care across healthcare settings. Opportunities to improve parents' early transition experiences include enhanced engagement, communication, information-sharing and shared decision-making between health care providers and parents. Future areas of research should focus on early transition interventions to advance parent capacity, confidence and closeness as the primary nurturer. © 2017 John Wiley & Sons Ltd.

Children of mentally ill parents-a pilot study of a group intervention program.

PubMed

Christiansen, Hanna; Anding, Jana; Schrott, Bastian; Röhrle, Bernd

2015-01-01

The transgenerational transmission of mental disorders is one of the most prominent risk factors for the development of psychological disorders. Children of mentally ill parents are a vulnerable high risk group with overall impaired development and high rates of psychological disorders. To date there are only a few evidence based intervention programs for this group overall and hardly any in Germany. We translated the evidence based Family Talk Intervention by Beardslee (2009) and adapted it for groups. First results of this pilot study are presented. This investigation evaluates a preventive group intervention for children of mentally ill parents. In a quasi-experimental design three groups are compared: an intervention group (Family Talk Intervention group: n = 28), a Wait Control group (n = 9), and a control group of healthy children (n = 40). Mean age of children was 10.41 years and parental disorders were mostly depressive/affective disorders (n = 30), but a small number also presented with Attention-Deficit/Hyperactivity Disorder (n = 7). Children of mentally ill parents showed higher rates of internalizing/externalizing disorders before and after the intervention compared to children of parents with no disorders. Post intervention children's knowledge on mental disorders was significantly enhanced in the Family Talk Intervention group compared to the Wait Control group and the healthy control group. Parental ratings of externalizing symptoms in the children were reduced to normal levels after the intervention in the Family Talk Intervention group, but not in the Wait Control group. This pilot study of a group intervention for children of mentally ill parents highlights the importance of psycho-education on parental mental disorders for children. Long-term effects of children's enhanced knowledge about parental psychopathology need to be explored in future studies.

Parent stress and child behaviour among young children with type 1 diabetes.

PubMed

Hilliard, M E; Monaghan, M; Cogen, F R; Streisand, R

2011-03-01

Parents of young children with type 1 diabetes (T1D) are responsible for executing a complex daily management regimen and are at risk for elevated levels of stress. Normative misbehaviour during the preschool years can complicate T1D management, and interpretation of behavioural concerns may vary because of child health status and parent stress. Within a paediatric transactional model framework, child characteristics (e.g. behaviour problems, metabolic control) and parent functioning (e.g. parenting stress, anxiety) likely impact one another. Parents of 2- to 6-year-old children with T1D completed self-report measures, including the Pediatric Inventory for Parents (PIP), State-Trait Anxiety Inventory (STAI), Eyberg Child Behavior Inventory (ECBI), and 24-h Recall Interviews. Medical data were obtained by parent report and medical record review. It was hypothesized that greater parent stress and child blood glucose variability would be significantly associated with greater parent-reported child behaviour concerns. Moderate levels of parent stress and child behaviour problems were endorsed; however, parents perceived children's misbehaviour as problematic, particularly with relation to tasks relevant to diabetes management (e.g. bedtimes and mealtimes). Structural equation modelling indicated that greater general anxiety and paediatric parenting stress was associated with parent report of more problematic child behaviour. Blood glucose variability did not significantly contribute to this relationship. The stress experienced by parents of young children with chronic illness appears to relate to their perception of their children's behaviour problems. Parents' experiences with developmentally normative misbehaviour may interfere with disease management and exacerbate parents' stress and the subsequent impact on well-being. Implications for supporting parents and children with T1D are discussed. © 2010 Blackwell Publishing Ltd.

A qualitative systematic review of the reasons for parental attendance at the emergency department with children presenting with minor illness.

PubMed

Butun, Ahmet; Hemingway, Pippa

2018-01-01

Over 5 million children attend the Emergency Department (ED) annually in England with an ever-increasing paediatric emergency caseload echoed globally. Approximately 60% of children present with illness and the majority have non-urgent illness creating burgeoning pressures on children's ED and this crisis resonates globally. To date no qualitative systematic review exists that focuses on the parental reasons for childhood attendance at the ED in this sub-group. To identify parental reasons for attending ED for their children presenting with minor illness. A qualitative systematic review was conducted against inclusion/exclusion criteria. Five electronic databases and key journals were searched in June 2015. 471 studies were identified and following study selection, 4 qualitative studies were included. Nine themes were identified e.g. dissatisfaction with family medical services, perceived advantages of ED and 'child suffering' with novel and insightful sub-themes of 'hereditary anxiety', 'taking it off our hands', ED as a 'magical place'. This novel qualitative systematic review examined parental attendance presenting with childhood minor illness of interest to emergency care reformers and clinicians. ED attendance is complex and multifactorial but parents provide vital insight to ED reformers on parental reasons for ED attendance in this sub-group. Copyright © 2017 Elsevier Ltd. All rights reserved.

Care for chronic illness in Australian general practice – focus groups of chronic disease self-help groups over 10 years: implications for chronic care systems reforms

PubMed Central

Martin, Carmel M; Peterson, Chris; Robinson, Rowena; Sturmberg, Joachim P

2009-01-01

Background Chronic disease is a major global challenge. However, chronic illness and its care, when intruding into everyday life, has received less attention in Asia Pacific countries, including Australia, who are in the process of transitioning to chronic disease orientated health systems. Aim The study aims to examine experiences of chronic illness before and after the introduction of Australian Medicare incentives for longer consultations and structured health assessments in general practice. Methods Self-help groups around the conditions of diabetes, epilepsy, asthma and cancer identified key informants to participate in 4 disease specific focus groups. Audio taped transcripts of the focus groups were coded using grounded theory methodology. Key themes and lesser themes identified using a process of saturation until the study questions on needs and experiences of care were addressed. Thematic comparisons were made across the 2002/3 and 1992/3 focus groups. Findings At times of chronic illness, there was need to find and then ensure access to 'the right GP'. The 'right GP or specialist' committed to an in-depth relationship of trust, personal rapport and understanding together with clinical and therapeutic competence. The 'right GP', the main specialist, the community nurse and the pharmacist were key providers, whose success depended on interprofessional communication. The need to trust and rely on care providers was balanced by the need for self-efficacy 'to be in control of disease and treatment' and 'to be your own case manager'. Changes in Medicare appeared to have little penetration into everyday perceptions of chronic illness burden or time and quality of GP care. Inequity of health system support for different disease groupings emerged. Diabetes, asthma and certain cancers, like breast cancer, had greater support, despite common experiences of disease burden, and a need for research and support programs. Conclusion Core themes around chronic illness experience and care needs remained consistent over the 10 year period. Reforms did not appear to alleviate the burden of chronic illness across disease groups, yet some were more privileged than others. Thus in the future, chronic care reforms should build from greater understanding of the needs of people with chronic illness. PMID:19161636

Paradise regained: how elderly people who are chronically mentally ill reinvent a social self.

PubMed

van Dongen, E

2001-01-01

Throughout their lives, chronic mentally ill people go through a series of disruptive events and periods of suffering. In general, the literature suggests that people with long-standing mental illnesses are extremely vulnerable and cannot maintain themselves without assistance. When old age is added to this mix, the result is a heavy burden for both the patient and the caregiver. While the negative consequences, for both patient and caregiver, of suffering chronic illness during old age must not be ignored, neither should the positive periods in these people's lives. There are times when the mutual identification between cold and young yields vivid examples of the latter's ability to reconstitute a social self. In this paper I look at chronic illness in old age as a struggle on the part of the sufferer to reconcile her/his experiences of suffering in the light of approaching death. I attempt to show that the process of aging with a chronic mental illness involves not only decay and suffering, but also resilience and vitality.

State Maternity/Parental Leave Laws. Facts on Working Women No. 90-1.

ERIC Educational Resources Information Center

Women's Bureau (DOL), Washington, DC.

The status of state maternity/parental leave laws throughout the United States is depicted in eight figures and three tables. Information is reported by state for maternity/parental leave laws, months of available leave, maternity/family illness laws, days of leave for family illness, temporary disability insurance laws, temporary disability…

Adolescent Mental Health Consumers' Self-Stigma: Associations with Parents' and Adolescents' Illness Perceptions and Parental Stigma

ERIC Educational Resources Information Center

Moses, Tally

2010-01-01

Currently, little is known about adolescents' self-stigma experiences as mental health (MH) treatment recipients. Hence, this study addresses the following two questions: (a) what are adolescents' and parents' perceptions of stigma and perceptions of the cause, controllability, and anticipated outcome (illness perceptions) of adolescents' MH…

The experience of Chinese American parents of children with life-limiting illness: a comprehensive review.

PubMed

Wang, Jinjiao; Kearney, Joan A

2013-07-01

Life-limiting childhood illness is a traumatic experience presenting parents with psychological, physical, and social challenges. While cultural influences affect all parents coping with the life-limiting illness and end-of-life period of their child, little is known about the experiences of Chinese American parents. The purpose of this comprehensive literature review was to describe Chinese American parents' experiences during their children's end-of-life period from a culturally informed perspective. Important themes in the literature are revealed including culture-based phenomena regarding philosophy of life and illness that can affect treatment choices, cultural mores that influence parental behaviour in Western health-care systems, specific communication patterns within families and between families and providers, certain coping risks, and gender-based roles and caregiving activities that have implications for provider communication patterns. The findings are consonant with the larger literature regarding the impact of traditional culture and values on Chinese family and health behaviours. Health professionals must be sensitive to Chinese American parents' communication styles, unspoken concerns, and unresolved cultural conflicts in American health-care settings. Educational interventions may be very helpful in this regard.

Nutritional Needs of the Child with a Handicap or Chronic Illness. Manual II: Clinical Nutrition. Presentations from a National Interdisciplinary Symposium.

ERIC Educational Resources Information Center

Ekvall, Shirley M.; Wheby, Elizabeth A.

The following papers were presented at a symposium on clinical nutrition for the child who is chronically ill or handicapped: (1) "Food Allergy"; (2) "Anemia and the Chronically Ill or Handicapped Child"; (3) "Nutrition and Neurotransmitters--Clinical Implications"; (4) "The Importance of Lipid Type in the Diet after Burn Injury"; (5) "Advances of…

Knowledge transfer in the field of parental mental illness: objectives, effective strategies, indicators of success, and sustainability.

PubMed

Lauritzen, Camilla; Reedtz, Charlotte

2015-01-01

Mental health problems are often transmitted from one generation to the next. However, transferring knowledge about interventions that reduce intergenerational transmission of disease to the field of parental mental illness has been very difficult. One of the most critical issues in mental health services research is the gap between what is generally known about effective treatment and what is provided to consumers in routine care. In this article we discuss several aspects of knowledge transfer in the field of parental mental illness. Effective strategies and implementation prerequisites are explored, and we also discuss indicators of success and sustainability. Altogether, this article presents a rationale for the importance of preventive strategies for children of mentally ill parents. Furthermore, the discussion shows how complex it is to change clinical practice.

The views and experiences of severely mentally ill mothers--a qualitative study.

PubMed

Diaz-Caneja, Angeles; Johnson, Sonia

2004-06-01

The majority of women with severe mental illness are mothers. Little is known about their experiences and the extent to which their needs are met. Semi-structured interviews were carried out with 22 women with schizophrenia, bipolar affective disorder or severe depression with psychotic symptoms in Inner London. Participants' experiences, views about services and needs for support in parenting were discussed. Interviews were transcribed verbatim and qualitative thematic analysis carried out. Most participants who looked after their children described motherhood as rewarding and central to their lives. However, they described the demands associated with parenting and at the same time coping with severe mental illness as considerable, and some feared that their children would be adversely affected by their illnesses. Parenting responsibilities created practical impediments to engaging with mental health services. Fear of losing custody or access to children dominated interactions with mental health and social services, making most participants reluctant to disclose difficulties in parenting to professionals. A widespread assumption that mentally ill women are inherently poor parents, regardless of the facts of individual cases, was described, and stigma was seen as affecting children as well as mothers. Services were perceived as offering little continuing support in relation to parenting, intervening only in crises. Little attention has so far been paid in research and service development to the fact that the majority of mentally ill women are mothers. Strategies for assessing and meeting the resulting unmet needs should be developed and evaluated.

THE COMPARISON OF INTELLIGENCE QUOTIENTS OF ATOPIC AND NONATOPIC CHILDREN IN IBADAN, NIGERIA

PubMed Central

Daramola, O O M; Ayoola, O O; Ogunbiyi, A O

2010-01-01

Background: Atopy-related illnesses such as atopic dermatitis and asthma are chronic illnesses, and children suffering from such illnesses are subjected to frequent absenteeism from school. Studies have shown that the performance of children with asthma was comparable to their healthy counterparts despite their absenteeism at school, in contrast to findings in other chronic illnesses like epilepsy. Aim: In the present study, we investigated the association between atopy and intelligence quotient (IQ) scores in a group of Nigerian children in Ibadan, a city in southwestern Nigeria. Materials and Methods: This is a cross-sectional study of children in an urban elementary school. Questionnaires to ascertain the presence of atopy-associated conditions such as hay fever, atopic dermatitis, asthma, allergic rhinitis, and allergic conjunctivitis were administered to the parents of 128 pupils in the 3rd to 6th grades of elementary school. Based on the responses to the questionnaire, pupils were categorized as being atopic and nonatopic. All the pupils underwent the Standard Progressive Matrices IQ test. The IQ scores were then compared among these two groups of children. Results: Out of the children studied, 26.6% were found to have atopy and after adjusting for factors such as age and sex, the IQ scores in this atopic group were not found to be statistically different from the scores in the nonatopic group (r = 2.122872, P = 0.009). Conclusion: IQ scores were not statistically significantly different for children with and without atopy. Thus, the presence of atopy does not appear to be associated with low IQ scores and hence, may not be related to poor school performance. PMID:21063510

Transmission of risk from parents with chronic pain to offspring: an integrative conceptual model

PubMed Central

Stone, Amanda L.; Wilson, Anna C.

2017-01-01

Offspring of parents with chronic pain are at increased risk for pain and adverse mental and physical health outcomes (Higgins et al, 2015). Although the association between chronic pain in parents and offspring has been established, few studies have addressed why or how this relation occurs. Identifying mechanisms for the transmission of risk that leads to the development of chronic pain in offspring is important for developing preventive interventions targeted to decrease risk for chronic pain and related outcomes (eg, disability and internalizing symptoms). This review presents a conceptual model for the intergenerational transmission of chronic pain from parents to offspring with the goal of setting an agenda for future research and the development of preventive interventions. Our proposed model highlights 5 potential mechanisms for the relation between parental chronic pain and pediatric chronic pain and related adverse outcomes: (1) genetics, (2) alterations in early neurobiological development, (3) pain-specific social learning, (4), general parenting and family health, and (5) exposure to stressful environment. In addition, the model presents 3 potential moderators for the relation between parent and child chronic pain: (1) the presence of chronic pain in a second parent, (2) timing, course, and location of parental chronic pain, and (3) offspring’s characteristics (ie, sex, developmental stage, race or ethnicity, and temperament). Such a framework highlights chronic pain as inherently familial and intergenerational, opening up avenues for new models of intervention and prevention that can be family centered and include at-risk children. PMID:27380502

Transmission of risk from parents with chronic pain to offspring: an integrative conceptual model.

PubMed

Stone, Amanda L; Wilson, Anna C

2016-12-01

Offspring of parents with chronic pain are at increased risk for pain and adverse mental and physical health outcomes (Higgins et al, 2015). Although the association between chronic pain in parents and offspring has been established, few studies have addressed why or how this relation occurs. Identifying mechanisms for the transmission of risk that leads to the development of chronic pain in offspring is important for developing preventive interventions targeted to decrease risk for chronic pain and related outcomes (eg, disability and internalizing symptoms). This review presents a conceptual model for the intergenerational transmission of chronic pain from parents to offspring with the goal of setting an agenda for future research and the development of preventive interventions. Our proposed model highlights 5 potential mechanisms for the relation between parental chronic pain and pediatric chronic pain and related adverse outcomes: (1) genetics, (2) alterations in early neurobiological development, (3) pain-specific social learning, (4), general parenting and family health, and (5) exposure to stressful environment. In addition, the model presents 3 potential moderators for the relation between parent and child chronic pain: (1) the presence of chronic pain in a second parent, (2) timing, course, and location of parental chronic pain, and (3) offspring's characteristics (ie, sex, developmental stage, race or ethnicity, and temperament). Such a framework highlights chronic pain as inherently familial and intergenerational, opening up avenues for new models of intervention and prevention that can be family centered and include at-risk children.

[Children of mentally ill parents. A study of problem awareness in clinical routine practice].

PubMed

Bohus, M; Schehr, K; Berger-Sallawitz, F; Novelli-Fischer, U; Stieglitz, R D; Berger, M

1998-05-01

The risk of developing clinically relevant psychiatric disorders in the lifetime course is significantly greater among children of mentally ill parents. A child-adapted programme of information concerning the nature and symptomatology of parental illness is considered to be an important preventive factor, and lies within the domain of the psychiatrist's or therapist's responsibilities. During the developmental phase of a prevention project at Freiburg University's Department of Psychiatry and Psychotherapy, both clinical practice and the level of problem awareness among patients and the therapists were evaluated. Over a period of one year, consecutive interviews involving 114 patients with children under 18 years of age, as well as their respective therapists, were conducted. The results showed that: scarcely any exchanges between children and therapists took place; the extent to which children are informed about parental illness must be considered as small; a high percentage of such children are already evaluated by their parents as disturbed, and the pressing need for support exists.

Children's experiences of living with a parent with mental illness: A systematic review of qualitative studies using thematic analysis.

PubMed

Yamamoto, Rumi; Keogh, Brian

2018-03-01

WHAT IS KNOWN ABOUT THE SUBJECT?: There are many qualitative studies that explore what it is like for children who live with a parent who has a mental illness. These studies are sometimes criticized because they have small sample sizes which limits their application. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: We conducted a systematic review of qualitative papers with an aim to strengthening our understanding of what it is like for children who live with a parent who has a mental illness. We used stringent criteria to make sure that only the voices of children affected by parental mental illness were included in the review. In addition, the paper presents a timely update on previous reviews completed in this area. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: The findings of this review highlight the impact that parental mental illness has on children and the important role that mental health nurses can play in maximizing opportunities for building resilience in affected children. Mental health nurses are in a key position to provide timely and age-appropriate information and support to both parents and children to assist in the development of appropriate coping and support mechanisms. Introduction This paper brings together what is known about what it is like for children who live with a parent with a mental illness with a view to strengthening our understanding of their experiences. This paper presents an update on previous reviews that were completed in this area and used a systematic approach and stringent inclusion/exclusion criteria to ensure that the voices of children were central in the included papers. A systematic review of this nature could not be located in the literature. Aims This paper presents the findings of a systematic review which explored the experiences of children who were affected by parental mental illness. Methods CINAHL, PubMed, PsychINFO, Pubmesh and EMBASE were searched for qualitative studies which explored children's experiences, and eight studies were included following review and quality appraisal. Pertinent data were extracted, coded and analysed using a thematic approach. Results Four themes emerged from the analytic process which described the children's understanding of mental illness, their relationship with their parents, their coping strategies and their social connections. Implications for Practice Mental health nurses need to recognize the psychosocial needs of children, and to acknowledge, the wider impact mental illness has of the family. © 2017 John Wiley & Sons Ltd.

The impact of chronic physical illness, maternal depressive symptoms, family functioning, and self-esteem on symptoms of anxiety and depression in children.

PubMed

Ferro, Mark A; Boyle, Michael H

2015-01-01

The present study extends earlier research identifying an increased risk of anxiety among children with chronic physical illness (CwCPI) by examining a more complete model that explains how physical illness leads to increased symptoms of anxiety and depression. We tested a stress-generation model linking chronic physical illness to symptoms of anxiety and depression in a population-based sample of children aged 10 to 15 years. We hypothesized that having a chronic physical illness would be associated with more symptoms of anxiety and depression, increased levels of maternal depressive symptoms, more family dysfunction, and lower self-esteem; and, that maternal depressive symptoms, family dysfunction, and child self-esteem would mediate the influence of chronic physical illness on symptoms of anxiety and depression. Data came from the National Longitudinal Survey of Children and Youth (N = 10,646). Mediating processes were analyzed using latent growth curve modeling. Childhood chronic physical illness was associated with increases in symptoms of anxiety and depression, β = 0.20, p < 0.001. Mediating effects were also observed such that chronic physical illness resulted in increases in symptoms of maternal depression and family dysfunction, leading to declines in child self-esteem, and in turn, increases in symptoms of anxiety and depression. CwCPI are at-risk for symptoms of anxiety and depression. Some of this elevated risk appears to work through family processes and child self-esteem. This study supports the use of family-centered care approaches among CwCPI to minimize burden on families and promote healthy psychological development for children.

The impact of illness-related shame on psychological health and social relationships: Testing a mediational model in students with chronic illness.

PubMed

Trindade, Inês A; Duarte, Joana; Ferreira, Cláudia; Coutinho, Mariana; Pinto-Gouveia, José

2018-05-01

This study explores the impact of illness-related shame on the quality of social relationships and psychological health in chronic patients. We aimed to examine the roles of fear of receiving compassion from others and experiential avoidance as potential mediators of this relationship. Although some studies have demonstrated the negative impact of chronic illness-related shame on psychological functioning, the mechanisms that may underlie this link remain understudied. The sample was comprised by 115 college students, which had been diagnosed with at least 1 chronic illness. Participants completed self-report measures on an online platform. This study's design was cross-sectional. A path analysis was conducted using structural equation modelling. Results showed that the impact of illness-related shame on both psychological health (R 2  = .45) and the quality of social relationships (R 2  = .33) was fully accounted by fear of compassion from others and experiential avoidance. This model revealed an excellent fit. Fear of receiving compassion from others was the main mediator of the illness-related shame link with the quality of social relationships (β = -.22). The main mediator of the association between shame-related chronic illness and psychological health was experiential avoidance (β = -.21).This study shed light on possible psychological mechanisms linking feelings of shame associated with having a chronic condition and impaired social relationships and mental health. On one hand, resisting feelings of compassion and care from others and, on the other hand, avoiding difficult internal experiences and situations that might trigger them seem to underlie the impact of shame on psychological and social functioning in chronic patients. Copyright © 2018 John Wiley & Sons, Ltd.

Pre-travel advice seeking from GPs by travellers with chronic illness seen at a travel clinic.

PubMed

Gagneux-Brunon, Amandine; Andrillat, Carole; Fouilloux, Pascale; Daoud, Fatiha; Defontaine, Christiane; Charles, Rodolphe; Lucht, Frédéric; Botelho-Nevers, Elisabeth

2016-03-01

Travellers are ageing and frequently report chronic illness. Pre-travel health advice is crucial, particularly in this subgroup, and general practitioners (GPs) are first in line for treatment adjustment before departure. Our aim is to evaluate pre-travel health advice seeking from GPs by travellers with chronic illness seen at a travel clinic. A cross-sectional observational survey using a questionnaire was conducted between August 2013 and July 2014 in travellers attending the travel medicine clinic of a tertiary university hospital in France. During the study, 2019 travellers were included. Mean age was 39.4 years (±18.8). Three hundred and ninety-one (19.4%) travellers reported a history of a chronic illness. Arterial hypertension and diabetes mellitus were the most frequently reported illnesses, affecting, respectively, 168 (8.3%) travellers and 102 (5.1%). Hajj pilgrims were more likely to report a history of chronic illness than other travellers. Only 810 (40.1%) travellers sought pre-travel advice from their GP. Six hundred and fifty-two (40.1%) healthy travellers and 158 (40.5%) travellers reporting chronic illness sought pre-travel advice from their GP (P = 0.96). Travellers with a history of chronic illness do not seek pre-travel health advice from their GP more frequently than healthy travellers. Travel health specialists are generally not the best practitioners to manage the care of underlying medical conditions presenting risks during travel. However, GPs offer continuity and disease management expertise to improve the specificity of pre-travel planning. Thus, ongoing collaboration between the traveller, GP and travel health specialist is likely to yield the best outcomes. © International Society of Travel Medicine, 2016. All rights reserved. Published by Oxford University Press. For permissions, please e-mail: journals.permissions@oup.com.

Children's experiences of parental mental illness: a literature review.

PubMed

Gladstone, Brenda M; Boydell, Katherine M; Seeman, Mary V; McKeever, Patricia D

2011-11-01

This paper provides a review of published qualitative research on children's experiences of parental mental illness. We undertook a comprehensive search of Medical Literature Analysis and Retrieval System Online, PsycINFO, Cumulative Index to Nursing and Allied Health Literature, Sociological Abstracts and Applied Social Sciences Index and Abstracts databases, as well as citation searches in Web of Science and manual searches of other relevant journals and reference lists of primary papers. Although 20 studies met the search criteria, only 10 focused exclusively on children's descriptions of their experience--the remainder elicited adults' perspectives on children's experiences of parental mental illnesses. Findings are organized under three themes: the impact of illness on children's daily life, how children cope with their experiences and how children understand mental illness. Despite references to pervasive knowledge gaps in the literature, significant information has been accumulated about children's experiences of parental mental illness. Considerable variability in research findings and tensions remain unresolved. For example, evidence is mixed as to children's knowledge and understanding of mental illnesses and how best to deploy resources to help them acquire optimal information. Furthermore, children's desire to be recognized as important to their parents' well-being conflicted with adults' perceptions that children should be protected from too much responsibility. Nevertheless, the cumulative evidence remains a key reason for advocating for psychoeducation and peer-support group interventions for children, which are endorsed by child and adult study participants alike. © 2011 Blackwell Publishing Asia Pty Ltd.

Beyond fighting fires and chasing tails? Chronic illness care plans in Ontario, Canada.

PubMed

Russell, Grant; Thille, Patricia; Hogg, William; Lemelin, Jacques

2008-01-01

Recent work has conceptualized new models for the primary care management of patients with chronic illness. This study investigated the experience of family physicians and patients with a chronic illness management initiative that involved the joint formulation of comprehensive individual patient care plans. A qualitative evaluation, framed by phenomenology, immediately followed a randomized controlled trial examining the effect of external facilitators in enhancing the delivery of chronic condition care planning in primary care. The study, set in Ontario family practices, used semistructured in-depth interviews with a purposive sample of 13 family physicians, 20 patients, and all 3 study facilitators. Analysis used independent transcript review and constant comparative methods. Despite the intervention being grounded in patient-centered principles, family physicians generally viewed chronic illness management from a predominantly biomedical perspective. Only a few enthusiasts viewed systematic care planning as a new approach to managing patients with chronic illness. Most family physicians found the strategy to be difficult to implement within existing organizational and financial constraints. For these participants, care planning conflicted with preexisting concepts of their role and of their patient's abilities to become partners in care. The few patients who noticed the process spoke favorably about their experience. Although the experiences of the enthusiastic family physicians were encouraging, we found important individual-level barriers to chronic illness management in primary care. These issues seemed to transcend existing organizational and resource constraints.

Talking with a child about a parent's terminal illness

MedlinePlus

... gov/ency/patientinstructions/000848.htm Talking with a child about a parent's terminal illness To use the ... your child's anxiety. How to Talk to Your Child You may wonder when it is the right ...

What is left unsaid: an interpretive description of the information needs of parents of children with asthma.

PubMed

Archibald, Mandy M; Caine, Vera; Ali, Samina; Hartling, Lisa; Scott, Shannon D

2015-02-01

Parents of children with asthma provide the vast majority of day-to-day asthma care. Understanding their information needs is an essential step to provide meaningful and effective family-centered asthma education. To gain insight into the information needs and information deficits of parents of children with asthma, we conducted an interpretive descriptive study to capture the perspectives of 21 parents from diverse backgrounds whose 23 children with asthma had a range of illness trajectories and management scenarios. Parents were purposively sampled from two asthma clinics and one pediatric emergency department in a large urban center in North America. Semi-structured interviews were conducted in 2011-2012. In data analysis, parents' self-identified information needs were distinguished from analysts' interpretations of information deficits. Participants' knowledge did not always reflect time since diagnosis, and information needs and deficits persisted for years. Parents often reported receiving little or no little or no education about asthma and its management. An asthma management information hierarchy was identified, starting with the most foundational, recognizing severity; followed by acute management; prevention versus crisis orientation; and knowing "about" asthma. In the absence of adequate and accurate education, parents' beliefs about the nature of asthma as an acute rather than chronic condition shaped their asthma management decisions and information-seeking behaviors. Information deficits were affected by interactions with health care providers. These parents' pervasive unmet information needs and deficits highlight the need for comprehensive, problem-oriented asthma education. © 2015 Wiley Periodicals, Inc.

Factors influencing quality of life and disease severity in Hungarian children and young adults with cystic fibrosis.

PubMed

Bodnar, Reka; Kadar, Laszlo; Holics, Klara; Ujhelyi, Rita; Kovacs, Lajos; Bolbas, Katalin; Szekely, Gyongyi; Gyurkovits, Kalman; Solyom, Eniko; Meszaros, Agnes

2014-06-02

The aim of our study was to evaluate factors affecting cystic fibrosis (CF) patients' health-related quality of life (HRQoL) and to assess the level of agreement on HRQol between children and their parents. Fifty-nine patients (mean age: 14.03 ± 4.81 years) from 5 Hungarian CF centres completed the survey. HRQoL was measured using The Cystic Fibrosis Questionnaire-Revised (CFQ-R). Parents were asked to fill out a questionnaire about their smoking habits, educational level and history of chronic illness. Disease severity was assessed using the physician-reported Shwachman-Kulczycki (SK) score system. Spirometry, Body Mass Index (BMI) percentile (pc), hospitalisation and Pseudomonas aeruginosa (PA) infection were examined as physiologic parameters of CF, and the impact of these factors on HRQoL was assessed. A multivariate regression analysis was performed to identify the most important factors affecting HRQoL. The level of significance was set to 0.05. Passive smoking and parental educational level and chronic diseases status did not have a significant impact on the patients' HRQoL (p > 0.05). Significantly lower SK scores and spirometry values were found in low BMI pc patients (p < 0.001), in hospitalised (p < 0.01) and in PA-infected patients (p < 0.01), than in the adequate-weight, non-hospitalised and PA culture-negative subgroup. Lower CFQ-R scores were detected in hospitalised patients than in non-hospitalised patients in their Physical functioning domain. PA-infected patients had HRQoL scores that were significantly worse in the Body image (p < 0.01) and Respiratory symptoms (p < 0.05) domains than the PA culture-negative patients. Patients with a low BMI pc (<25th BMI pc) had significantly lower scores in the Eating, Body image and Treatment burden domains, than the adequate-weight patients (>25th BMI pc) (p < 0.01). A strong child-parent agreement was found in the Physical functioning domain (r = 0.77, p < 0.01). Passive smoking, parental educational level and chronic diseases of parents do not affect the HRQoL of CF patients. In contrast, hospitalisation, PA infection and malnutrition have a significant and negative impact on patients' HRQoL and the clinical severity of the disease. Parents and children were consistent in their scoring of symptoms and behaviours that were observable.

The Impact of Family Behaviors and Communication Patterns on Chronic Illness Outcomes: A Systematic Review

PubMed Central

Rosland, Ann-Marie; Heisler, Michele; Piette, John D.

2013-01-01

In general, social support from family members affects chronic illness outcomes, but evidence on which specific family behaviors are most important to adult patient outcomes has not been summarized. We systematically reviewed studies examining the effect of specific family member behaviors and communication patterns on adult chronic illness self-management and clinical outcomes. Thirty studies meeting inclusion criteria were identified, representing 22 participant cohorts, and including adults with arthritis, chronic cardiovascular disease, diabetes, and/or end stage renal disease. Family emphasis on self-reliance and personal achievement, family cohesion, and attentive responses to symptoms were associated with better patient outcomes. Critical, overprotective, controlling, and distracting family responses to illness management were associated with negative patient outcomes. Study limitations included cross-sectional designs (11 cohorts), however results from longitudinal studies were similar. Findings suggest that future interventions aiming to improve chronic illness outcomes should emphasize increased family use of attentive coping techniques and family support for the patient’s autonomous motivation. PMID:21691845

Parents served by assertive community treatment: parenting needs, services, and attitudes.

PubMed

White, Laura M; McGrew, John H; Salyers, Michelle P

2013-03-01

Assertive Community Treatment (ACT) is an evidence-based practice for individuals with severe mental illness. Although at least half of all people with severe mental illness are parents, little is known about their experiences as parents and as recipients of mental health interventions like ACT. The purpose of the current study was to examine the experiences of parent consumers served by ACT. Seventeen parents being served by ACT teams were interviewed about parenting, parenting needs, severe mental illness, satisfaction with ACT services, and suggestions for improved parent-focused treatment services. All parents identified at least one positive aspect of parenting and most parents (77%) also identified negative aspects of parenting. Loss of custody emerged as a significant parenting problem, with most parents (88%) experiencing custody loss at least once. Parents expressed interest in numerous parent-focused services, including family therapy, parenting skills, communication skills training, resources for children, and peer support groups. Most participants with adult children (88%) reported having no unmet parent-related needs and high satisfaction (4.63 of 5) with ACT services, whereas parents with young children (78%) reported having several unmet parenting needs and relatively lower satisfaction (3.78 out of 5) with ACT services. The ACT treatment model may not be adequately serving parents of young, dependent children. Findings suggest the need for more attention and focus on parent consumers, including identification of parental status and improved parent-related treatment services and support. PsycINFO Database Record (c) 2013 APA, all rights reserved

Validity and reliability of the Iranian version of the Pediatric Quality of Life Inventory™ 4.0 (PedsQL™) Generic Core Scales in children

PubMed Central

2012-01-01

Background This study aimed to investigate the reliability and validity of the Iranian version of the Pediatric Quality of Life Inventory™ 4.0 (PedsQL™ 4.0) Generic Core Scales in children. Methods A standard forward and backward translation procedure was used to translate the US English version of the PedsQL™ 4.0 Generic Core Scales for children into the Iranian language (Persian). The Iranian version of the PedsQL™ 4.0 Generic Core Scales was completed by 503 healthy and 22 chronically ill children aged 8-12 years and their parents. The reliability was evaluated using internal consistency. Known-groups discriminant comparisons were made, and exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) were conducted. Results The internal consistency, as measured by Cronbach's alpha coefficients, exceeded the minimum reliability standard of 0.70. All monotrait-multimethod correlations were higher than multitrait-multimethod correlations. The intraclass correlation coefficients (ICC) between the children self-report and parent proxy-reports showed moderate to high agreement. Exploratory factor analysis extracted six factors from the PedsQL™ 4.0 for both self and proxy reports, accounting for 47.9% and 54.8% of total variance, respectively. The results of the confirmatory factor analysis for 6-factor models for both self-report and proxy-report indicated acceptable fit for the proposed models. Regarding health status, as hypothesized from previous studies, healthy children reported significantly higher health-related quality of life than those with chronic illnesses. Conclusions The findings support the initial reliability and validity of the Iranian version of the PedsQL™ 4.0 as a generic instrument to measure health-related quality of life of children in Iran. PMID:22221765

Validity and reliability of the Iranian version of the Pediatric Quality of Life Inventory™ 4.0 (PedsQL™) Generic Core Scales in children.

PubMed

Amiri, Parisa; Eslamian, Ghazaleh; Mirmiran, Parvin; Shiva, Niloofar; Jafarabadi, Mohammad Asghari; Azizi, Fereidoun

2012-01-05

This study aimed to investigate the reliability and validity of the Iranian version of the Pediatric Quality of Life Inventory™ 4.0 (PedsQL™ 4.0) Generic Core Scales in children. A standard forward and backward translation procedure was used to translate the US English version of the PedsQL™ 4.0 Generic Core Scales for children into the Iranian language (Persian). The Iranian version of the PedsQL™ 4.0 Generic Core Scales was completed by 503 healthy and 22 chronically ill children aged 8-12 years and their parents. The reliability was evaluated using internal consistency. Known-groups discriminant comparisons were made, and exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) were conducted. The internal consistency, as measured by Cronbach's alpha coefficients, exceeded the minimum reliability standard of 0.70. All monotrait-multimethod correlations were higher than multitrait-multimethod correlations. The intraclass correlation coefficients (ICC) between the children self-report and parent proxy-reports showed moderate to high agreement. Exploratory factor analysis extracted six factors from the PedsQL™ 4.0 for both self and proxy reports, accounting for 47.9% and 54.8% of total variance, respectively. The results of the confirmatory factor analysis for 6-factor models for both self-report and proxy-report indicated acceptable fit for the proposed models. Regarding health status, as hypothesized from previous studies, healthy children reported significantly higher health-related quality of life than those with chronic illnesses. The findings support the initial reliability and validity of the Iranian version of the PedsQL™ 4.0 as a generic instrument to measure health-related quality of life of children in Iran.

The well-being of children in food-insecure households: results from The Eastern Caribbean Child Vulnerability Study 2005.

PubMed

Racine, Elizabeth F; Jemison, Kyle; Huber, Larissa R; Arif, Ahmed A

2009-09-01

To examine the relationship between food insecurity and child well-being indicators. Cross-sectional survey conducted in 2344 households with children. The main exposure measure was food insecurity status, which was categorized as food secure or food insecure based on two or more food insecurity questions answered in the affirmative. Multiple logistic regression analysis was used to model the association between food insecurity status and selected child well-being indicators. Barbados, St. Lucia and St. Vincent and the Grenadines (hereafter St. Vincent), three Eastern Caribbean countries, 2005. A random sample of households with children was identified by the governments of Barbados, St. Lucia and St. Vincent. In-home interviews were conducted by social workers. One-third (33%) of households were categorized as food insecure. Food-insecure households were more likely to include a chronically ill parent (OR = 2.48; 95% CI 1.76, 3.49), a recently divorced parent (OR = 1.92; 95% CI 1.21, 3.05), a child requiring multiple visits to a health-care provider for a disability (OR = 3.98; 95% CI 1.20, 13.19) or injury (OR = 1.78; 95% CI 1.12, 2.83), a child with a learning disability (OR = 2.08; 95% CI 1.16, 3.74) or a child with a physical disability (OR = 2.54; 95% CI 1.22, 5.32) after adjustment for poverty and other demographic variables. The results indicate that food-insecure households were more likely to be burdened by child disability (learning and physical), family system disruption (recent divorce and chronic illness) and child health-care needs (for disability and injury) than food-secure households. The implementation of programmes and policies to minimize food insecurity in the Eastern Caribbean may be warranted.

Offspring of Parents with Chronic Pain: A Systematic Review and Meta-Analysis of Pain, Health, Psychological, and Family Outcomes

PubMed Central

Higgins, Kristen S.; Birnie, Kathryn A.; Chambers, Christine T.; Wilson, Anna C.; Caes, Line; Clark, Alexander J.; Lynch, Mary; Stinson, Jennifer; Campbell-Yeo, Marsha

2015-01-01

Offspring of parents with chronic pain may be at risk for poorer outcomes than offspring of healthy parents. The objective of this research was to provide a comprehensive mixed-methods, systematic synthesis of all available research on outcomes in offspring of parents with chronic pain. A systematic search was conducted for published articles in English examining pain, health, psychological, or family outcomes in offspring of parents with chronic pain. Fifty-nine eligible articles were identified (31 population-based, 25 clinical, 3 qualitative), including offspring from birth to adulthood and parents with varying chronic pain diagnoses (e.g., mixed pain samples, arthritis). Meta-analysis was used to synthesize the results from population-based and clinical studies, while meta-ethnography was used to synthesize the results of qualitative studies. Increased pain complaints were found in offspring of mothers and of fathers with chronic pain, and when both parents had chronic pain. Newborns of mothers with chronic pain were more likely to have adverse birth outcomes, including low birthweight, preterm delivery, caesarean section, intensive care admission, and mortality. Offspring of parents with chronic pain had greater externalizing and internalizing problems and poorer social competence and family outcomes. No significant differences were found on teacher-reported externalizing problems. The meta-ethnography identified six key concepts (developing independence, developing compassion, learning about health and coping, missing out, emotional health, and struggles communicating with parents). Across study designs, offspring of parents with chronic pain had poorer outcomes than other offspring, although the meta-ethnography noted some constructive impact of having a parent with chronic pain. PMID:26172553

Helping parents with mental illnesses and their children: a call for family-focused mental health care.

PubMed

Mason, Carolyn; Subedi, Sree

2006-07-01

1. Large numbers of individuals with mental illnesses are parents to minor children. 2. Recommendations to improve services suggest that services provided by the adult mental health system and child service agencies be coordinated. 3. Nursing care intersects both the adult and child systems, and nurses have the expertise to offer a variety of services. 4. There is an urgent need to improve family-focused mental health nursing care to benefit parents with mental illnesses, their children and families, and the overall community and society.

Culture and Chronic Illness: Raising Children with Disabling Conditions in a Culturally Diverse World. Papers presented at an Invitational Conference (Racine, Wisconsin, June 1992).

ERIC Educational Resources Information Center

Pediatrics, 1993

1993-01-01

This special supplement presents two background papers, three working papers, and key recommendations from a conference on culture and chronic illness in childhood. The meeting had as its goal the identification of the state of knowledge on the interface among culture, chronic illness, child development, and family functioning, for the purpose of…

A shared respite—The meaning of place for family well-being in families living with chronic illness

PubMed Central

Årestedt, Liselott; Benzein, Eva; Persson, Carina; Rämgård, Margareta

2016-01-01

Living with chronic illness is a family affair that involves ongoing changes and challenges in everyday life. When life changes, the environment is important for family health and well-being. The relation between a place and a family is rarely described, and therefore the aim of this study was to explore the meaning of place for family well-being in families living with chronic illness. A qualitative design was chosen. Data were collected by photovoice combined with narrative family research interviews with 10 families living with chronic illness. A phenomenological hermeneutic analysis was used to interpret the data. The results showed that the meaning of place for family well-being in families living with chronic illness can be described as “a shared respite.” This main theme included three subthemes: “a place for relief,” “a place for reflection,” and “a place for re-creation.” These results were further understood by means of the concept place security. Feeling well means having place security in these families. Through knowledge about the meaning of place for family well-being, health care personnel can stimulate families living with chronic illness to find respite in places that contribute to well-being, both in familiar and new places. PMID:26956097

A shared respite--The meaning of place for family well-being in families living with chronic illness.

PubMed

Årestedt, Liselott; Benzein, Eva; Persson, Carina; Rämgård, Margareta

2016-01-01

Living with chronic illness is a family affair that involves ongoing changes and challenges in everyday life. When life changes, the environment is important for family health and well-being. The relation between a place and a family is rarely described, and therefore the aim of this study was to explore the meaning of place for family well-being in families living with chronic illness. A qualitative design was chosen. Data were collected by photovoice combined with narrative family research interviews with 10 families living with chronic illness. A phenomenological hermeneutic analysis was used to interpret the data. The results showed that the meaning of place for family well-being in families living with chronic illness can be described as "a shared respite." This main theme included three subthemes: "a place for relief," "a place for reflection," and "a place for re-creation." These results were further understood by means of the concept place security. Feeling well means having place security in these families. Through knowledge about the meaning of place for family well-being, health care personnel can stimulate families living with chronic illness to find respite in places that contribute to well-being, both in familiar and new places.

Communicating about prognosis: ethical responsibilities of pediatricians and parents.

PubMed

Mack, Jennifer W; Joffe, Steven

2014-02-01

Clinicians are sometimes reluctant to discuss prognosis with parents of children with life-threatening illness, usually because they worry about the emotional impact of this information. However, parents often want this prognostic information because it underpins informed decision-making, especially near the end of life. In addition, despite understandable clinician concerns about its emotional impact, prognostic disclosure can actually support hope and peace of mind among parents struggling to live with a child's illness. Children, too, may need to understand what is ahead to manage uncertainty and make plans for the ways their remaining life will be lived. In this article, we describe the ethical issues involved in disclosure of prognostic information to parents and children with life-threatening illness and offer practical guidance for these conversations.

Quality of life, psychosocial strains and coping in parents of children with haemophilia.

PubMed

Wiedebusch, S; Pollmann, H; Siegmund, B; Muthny, F A

2008-09-01

Quality of life in parents of children suffering from haemophilia may be diminished by the illness burden experienced in daily life and by non-adaptive ways of coping. The aim of this study was to examine the relation between parents' quality of life, their perceived psychosocial strains and ways of coping, and to compare parents' outcome to other paediatric illness groups (juvenile idiopathic arthritis, type 1 diabetes). In a cross-sectional study, parents completed a questionnaire concerning quality of life, psychosocial strains, coping strategies and needs as well as sociodemographic and illness parameters. Study participants were recruited in an ambulant haemophilia centre. A total of 55 parents (32 mothers, 23 fathers; age = 39.6; SD = 8.6) of children suffering from haemophilia (age = 11.0; SD = 6.4) took part in the study. Comparison groups were parents of children with juvenile idiopathic arthritis (n = 161) and parents of children with type 1 diabetes (n = 69). Compared to parents from other paediatric illness groups, the parents of children with haemophilia experience less impact on their quality of life and lower psychosocial strains. Quality of life was predicted by the coping strategy 'improving marital relationship' (beta = 0.48) and by emotional strains and worries concerning future (beta = -0.43; explained variance 49%). Parents reported a pronounced need for further information on the comprehensive management of haemophilia. In the psychosocial care of families with a child suffering from -haemophilia, reducing psychosocial strains and strengthening adaptive coping strategies may be a preventive intervention for improving parents' quality of life.

Communication with children about a parent's advanced cancer and measures of parental anxiety and depression: a cross-sectional mixed-methods study.

PubMed

Hailey, Claire E; Yopp, Justin M; Deal, Allison M; Mayer, Deborah K; Hanson, Laura C; Grunfeld, Gili; Rosenstein, Donald L; Park, Eliza M

2018-01-01

Parents with advanced cancer are faced with difficult decision-making about communication about their illness with their children. The objectives of this study were to describe how parents communicated with their children about advanced cancer and to explore associations between communication and parental depression and anxiety. This was a cross-sectional, mixed-methods study of 42 patients with stage IV solid tumor malignancies who had at least one child less than 18 years of age. Participants completed a semi-structured interview and the Hospital Anxiety and Depression Scale (HADS). We used multiple linear regression to evaluate the association between extent of communication and HADS Anxiety and Depression scores. Interview data were analyzed using standard qualitative content and thematic techniques and triangulated with survey data. Higher HADS Anxiety scores, but not HADS Depression scores, were cross-sectionally associated with greater extent of parental communication (p = 0.003), even when controlling for performance status and children's ages. In qualitative analyses, parents who acknowledged the terminal nature of their illness or experienced higher symptom burden were more likely to report that they also communicated more extensively with children. A third of parents (n = 14, 33%) described difficulty with illness-related communication with their children. In this pilot study, parents with advanced cancer who reported more illness-related communication with their children also reported more symptoms of general anxiety. Future interventions should address psychological distress relevant to parenting and further assess how parental communication may be linked to parental mood symptoms.

Parental Mental Illness. Building Community Systems for Young Children.

ERIC Educational Resources Information Center

Hendrick, Victoria; Daly, Kathleen

Families are the principal influence on development in the first years of life, so the mental health of parents is an issue that affects every child in California. The most common mental health concerns facing parents involve stress and anxiety. These needs can be addressed through public health messages that de-stigmatize mental illness and…

Children of mentally ill parents—a pilot study of a group intervention program

PubMed Central

Christiansen, Hanna; Anding, Jana; Schrott, Bastian; Röhrle, Bernd

2015-01-01

Objective: The transgenerational transmission of mental disorders is one of the most prominent risk factors for the development of psychological disorders. Children of mentally ill parents are a vulnerable high risk group with overall impaired development and high rates of psychological disorders. To date there are only a few evidence based intervention programs for this group overall and hardly any in Germany. We translated the evidence based Family Talk Intervention by Beardslee (2009) and adapted it for groups. First results of this pilot study are presented. Method: This investigation evaluates a preventive group intervention for children of mentally ill parents. In a quasi-experimental design three groups are compared: an intervention group (Family Talk Intervention group: n = 28), a Wait Control group (n = 9), and a control group of healthy children (n = 40). Mean age of children was 10.41 years and parental disorders were mostly depressive/affective disorders (n = 30), but a small number also presented with Attention-Deficit/Hyperactivity Disorder (n = 7). Results: Children of mentally ill parents showed higher rates of internalizing/externalizing disorders before and after the intervention compared to children of parents with no disorders. Post intervention children's knowledge on mental disorders was significantly enhanced in the Family Talk Intervention group compared to the Wait Control group and the healthy control group. Parental ratings of externalizing symptoms in the children were reduced to normal levels after the intervention in the Family Talk Intervention group, but not in the Wait Control group. Discussion: This pilot study of a group intervention for children of mentally ill parents highlights the importance of psycho-education on parental mental disorders for children. Long-term effects of children's enhanced knowledge about parental psychopathology need to be explored in future studies. PMID:26539129

Parental mental illness and eating disorders in offspring.

PubMed

Bould, Helen; Koupil, Ilona; Dalman, Christina; DeStavola, Bianca; Lewis, Glyn; Magnusson, Cecilia

2015-05-01

To investigate which parental mental illnesses are associated with eating disorders in their offspring. We used data from a record-linkage cohort study of 158,679 children aged 12-24 years at the end of follow-up, resident in Stockholm County from 2001 to 2007, to investigate whether different parental mental illnesses are risk factors for eating disorders in their offspring. The outcome measure was diagnosis of any eating disorder, either from an ICD or DSM-IV code, or inferred from an appointment at a specialist eating disorder clinic. Mental illness in parents is a risk factor for eating disorders in female offspring (Adjusted Hazard Ratio (AHR) 1.57 (95% CI 1.42, 1.92), p < 0.0001). Risk of eating disorders is increased if there is a parental diagnosis of bipolar affective disorder (AHR 2.28 (95% CI 1.39, 3.72), p = 0.004), personality disorder (AHR 1.57 (95% CI 1.01, 2.44), p = 0.043) or anxiety/depression (AHR 1.57 (95% CI 1.32, 1.86), p < 0.0001). There is a lack of statistical evidence for an association with parental schizophrenia (AHR 1.41 (95% CI 0.96, 2.07), p = 0.08), and somatoform disorder (AHR 1.25 (95% CI 0.74, 2.13), p = 0.40). There is no support for a relationship between parental substance misuse and eating disorders in children (AHR 1.08 (95% CI 0.82, 1.43), p = 0.57). Parental mental illness, specifically parental anxiety, depression, bipolar affective disorder, and personality disorders, are risk factors for eating disorders in their offspring. © 2014 Wiley Periodicals, Inc.

Systematic review of positive youth development programs for adolescents with chronic illness.

PubMed

Maslow, Gary R; Chung, Richard J

2013-05-01

The Positive Youth Development (PYD) framework has been successfully used to support at-risk youth. However, its effectiveness in fostering positive outcomes for adolescents with chronic illness has not been established. We performed a systematic review of PYD-consistent programs for adolescents with chronic illness. Data sources included PubMed, CINAHL, and PsychINFO. Guided by an analytic framework, we searched for studies of PYD-consistent programs serving adolescents and young adults aged 13 through 24 with chronic illness. References were screened iteratively with increasing depth until a focused cohort was obtained and reviewed in full. The authors separately reviewed the studies using structured analysis forms. Relevant study details were abstracted during the review process. Fifteen studies describing 14 programs were included in the analysis. Three comprehensive programs included all 3 core components of a PYD program, including opportunities for youth leadership, skill building, and sustained connections between youth and adults. Four programs were primarily mentoring programs, and 7 others focused on youth leadership. Programs served youth with a variety of chronic illnesses. The quality and type of evaluation varied considerably, with most reporting psychosocial outcomes but only a few including medical outcomes. The PYD-consistent programs identified in this review can serve as models for the development of youth development programs for adolescents with chronic illness. Additional study is needed to evaluate such programs rigorously with respect to both psychosocial and health-related outcomes. PYD-consistent programs have the potential to reach youth with chronic illness and promote positive adult outcomes broadly.

Psychological interventions for mental health disorders in children with chronic physical illness: a systematic review.

PubMed

Bennett, Sophie; Shafran, Roz; Coughtrey, Anna; Walker, Susan; Heyman, Isobel

2015-04-01

Children with chronic physical illness are significantly more likely to develop common psychiatric symptoms than otherwise healthy children. These children therefore warrant effective integrated healthcare yet it is not established whether the known, effective, psychological treatments for symptoms of common childhood mental health disorders work in children with chronic physical illness. EMBASE, MEDLINE, PsycINFO and CINAHL databases were searched with predefined terms relating to evidence-based psychological interventions for psychiatric symptoms in children with chronic physical illness. We included all studies (randomised and non-randomised designs) investigating interventions aimed primarily at treating common psychiatric symptoms in children with a chronic physical illness in the review. Two reviewers independently assessed the relevance of abstracts identified, extracted data and undertook quality analysis. Ten studies (209 children, including 70 in control groups) met the criteria for inclusion in the review. All studies demonstrated some positive outcomes of cognitive behavioural therapy for the treatment of psychiatric symptoms in children with chronic physical illness. Only two randomised controlled trials, both investigating interventions for symptoms of depression, were found. There is preliminary evidence that cognitive behavioural therapy has positive effects in the treatment of symptoms of depression and anxiety in children with chronic physical illness. However, the current evidence base is weak and fully powered randomised controlled trials are needed to establish the efficacy of psychological treatments in this vulnerable population. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

Post-millennial trends of socioeconomic inequalities in chronic illness among adults in Germany.

PubMed

Hoebel, Jens; Kuntz, Benjamin; Moor, Irene; Kroll, Lars Eric; Lampert, Thomas

2018-03-27

Time trends in health inequalities have scarcely been studied in Germany as only few national data have been available. In this paper, we explore trends in socioeconomic inequalities in the prevalence of chronic illness using Germany-wide data from four cross-sectional health surveys conducted between 2003 and 2012 (n = 54,197; ages 25-69 years). We thereby expand a prior analysis on post-millennial inequality trends in behavioural risk factors by turning the focus to chronic illness as the outcome measure. The regression-based slope index of inequality (SII) and relative index of inequality (RII) were calculated to estimate the extent of absolute and relative socioeconomic inequalities in chronic illness, respectively. The results for men revealed a significant increase in the extent of socioeconomic inequalities in chronic illness between 2003 and 2012 on both the absolute and relative scales (SII 2003  = 0.06, SII 2012  = 0.17, p-trend = 0.013; RII 2003  = 1.18, RII 2012  = 1.57, p-trend = 0.013). In women, similar increases in socioeconomic inequalities in chronic illness were found (SII 2003  = 0.05, SII 2012  = 0.14, p-trend = 0.022; RII 2003  = 1.14, RII 2012  = 1.40, p-trend = 0.021). Whereas in men this trend was driven by an increasing prevalence of chronic illness in the low socioeconomic group, the trend in women was predominantly the result of a declining prevalence in the high socioeconomic group.

WPA guidance on the protection and promotion of mental health in children of persons with severe mental disorders

PubMed Central

BROCKINGTON, IAN; CHANDRA, PRABHA; DUBOWITZ, HOWARD; JONES, DAVID; MOUSSA, SUAAD; NAKKU, JULIET; QUADROS FERRE, ISABEL

2011-01-01

This guidance details the needs of children, and the qualities of parenting that meet those needs. Parental mental disorders can damage the foetus during pregnancy through the action of drugs, prescribed or abused. Pregnancy and the puerperium can exacerbate or initiate mental illness in susceptible women. After their birth, the children may suffer from the social disadvantage associated with severe mental illness. The parents (depending on the disorder, its severity and its persistence) may have intermittent or prolonged difficulties with parenting, which may sometimes result in childhood psychological disturbance or child maltreatment. This guidance considers ways of preventing, minimizing and remedying these effects. Our recommendations include: education of psychiatrists and related professions about the effect of parental mental illness on children; revision of psychiatric training to increase awareness of patients as caregivers, and to incorporate relevant assessment and intervention into their treatment and rehabilitation; the optimum use of pharmacological treatment during pregnancy; pre-birth planning when women with severe mental illness become pregnant; development of specialist services for pregnant and puerperal women, with assessment of their efficacy; community support for parenting by mothers and fathers with severe mental disorders; standards of good practice for the management of child maltreatment when parents suffer from mental illness; the importance of multi-disciplinary teamwork when helping these families, supporting their children and ensuring child protection; the development of child and adolescent mental health services worldwide. PMID:21633678

The experiences of chronically ill patients and registered nurses when they negotiate patient care in hospital settings: a feminist poststructural approach: A qualitative study that explores negotiation of patient care between patients and chronically ill patients in hospital settings.

PubMed

Griscti, Odette; Aston, Megan; Martin-Misener, Ruth; Mcleod, Deborah; Warner, Grace

2016-07-01

The aim of this study was to understand the experiences of chronically ill patients and registered nurse in negotiating patient care in hospital. Specifically, we explored how social and institutional discourses shaped power relations and negotiation of patient care. Current literature indicates that although nurses embrace this notion, such partnerships are not easily implemented. Most existing studies focus on the role of the nurse as the leader of the partnership with little attention paid to how social and institutional values, beliefs and practices shape nurse/patient power relations; or how these relationships are negotiated between nurses and patients. The theoretical and methodological approaches used in this study are based on the precepts of Foucault and feminist poststructural theorists. In depth interviews were conducted with eight chronically ill patients and 10 registered nurses. Both nurses and patients commented about the relationships that develop between nurses and chronically ill patients and how these relationships facilitate negotiation of patient care. Both parties described challenging moments and how institutional discourses may hinder positive negotiations of care. In this paper we highlight three themes that emerged: getting to know each other, they are not the sickest patients and finding time to listen. This study offers an innovative way of unpacking negotiation of care between chronically ill patients and registered nurses. It exposes how social and institutional discourses play a pivotal role in shaping negotiations between nurses and chronically ill patients. Negotiating care with chronically ill patients is not as asymmetric as portrayed in some of the literature and tends to be based on mutual agreements between nurses and patients. Nurses make it a point to listen to patients' needs and resist institutional discourses that preclude them from spending time with patients. © 2016 John Wiley & Sons Ltd.

The epidemiology of chronic critical illness in the United States*.

PubMed

Kahn, Jeremy M; Le, Tri; Angus, Derek C; Cox, Christopher E; Hough, Catherine L; White, Douglas B; Yende, Sachin; Carson, Shannon S

2015-02-01

The epidemiology of chronic critical illness is not well characterized. We sought to determine the prevalence, outcomes, and associated costs of chronic critical illness in the United States. Population-based cohort study using data from the United States Healthcare Costs and Utilization Project from 2004 to 2009. Acute care hospitals in Massachusetts, North Carolina, Nebraska, New York, and Washington. Adult and pediatric patients meeting a consensus-derived definition for chronic critical illness, which included one of six eligible clinical conditions (prolonged acute mechanical ventilation, tracheotomy, stroke, traumatic brain injury, sepsis, or severe wounds) plus at least 8 days in an ICU. None. Out of 3,235,741 admissions to an ICU during the study period, 246,151 (7.6%) met the consensus definition for chronic critical illness. The most common eligibility conditions were prolonged acute mechanical ventilation (72.0% of eligible admissions) and sepsis (63.7% of eligible admissions). Among patients meeting chronic critical illness criteria through sepsis, the infections were community acquired in 48.5% and hospital acquired in 51.5%. In-hospital mortality was 30.9% with little change over the study period. The overall population-based prevalence was 34.4 per 100,000. The prevalence varied substantially with age, peaking at 82.1 per 100,000 individuals 75-79 years old but then declining coincident with a rise in mortality before day 8 in otherwise eligible patients. Extrapolating to the entire United States, for 2009, we estimated a total of 380,001 cases; 107,880 in-hospital deaths and $26 billion in hospital-related costs. Using a consensus-based definition, the prevalence, hospital mortality, and costs of chronic critical illness are substantial. Chronic critical illness is particularly common in the elderly although in very old patients the prevalence declines, in part because of an increase in early mortality among potentially eligible patients.

Time spent on health related activities associated with chronic illness: a scoping literature review.

PubMed

Jowsey, Tanisha; Yen, Laurann; W, Paul Mathews

2012-12-03

The management of health care, particularly for people with chronic conditions, combines the activities of health professionals, patients, informal carers and social networks that support them. Understanding the non-professional roles in health management requires information about the health related activities (HRA) that are undertaken by patients and informal carers. This understanding allows management planning that incorporates the capacity of patients and informal carers, as well as identifying the particular skills, knowledge and technical support that are necessary. This review was undertaken to identify how much time people with chronic illness and their informal carers spend on HRA. Literature searches of three electronic databases (CINAHL, Medline, and PubMed) and two journals (Time and Society, Sociology of Health and Illness) were carried out in 2011 using the following search terms (and derivatives): chronic illness AND time AND consumer OR carer. The search was aimed at finding studies of time spent on HRA. A scoping literature review method was utilised. Twenty-two peer reviewed articles published between 1990 and 2010 were included for review. The review identified limited but specific studies about time use by people with a chronic illness and/or their carers. While illness work was seen as demanding, few studies combined inquiry about both defined tasks and defined time use. It also identified methodological issues such as consistency of definition and data collection methods, which remain unresolved. While HRA are seen as demanding by people doing them, few studies have measured actual time taken to carry out a comprehensive range of HRA. The results of this review suggest that both patients with chronic illness and informal carers may be spending 2 hours a day or more on HRA. Illnesses such as diabetes may be associated with higher time use. More empirical research is needed to understand the time demands of self-management, particularly for those affected by chronic illness.

The use of mixed methods in studying a chronic illness.

PubMed

Jason, Leonard A; Reed, Jordan

This article explores mixed methods approaches with an illness called Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). Qualitative and Quantitative data were used to investigate the epidemiology of this illness, as well as explore attributions based on the name of the illness, and finally treatment approaches. In each of the domains within the ME and CFS research reviewed, our analyses were richer and our findings ultimately more impactful when we integrated qualitative and quantitative research methods. The use of a multiphase mixed methods research program provided our team unique vantage points for better understanding social and community issues involving this controversial chronic illness. Further, this approach allowed us to implement the insights gained through an advocacy lens to change policy, recommend and evaluate treatments, and amplify voices within the patient population. In this way, we believe that the practice of methodological pluralism is especially applicable and effective to the study of chronic illness, and believe other investigators will benefit from the use of these approaches with similar disenfranchised and unfairly treated populations.

The Stigmatization of Mental Illness in Children and Parents. Data Trends #124

ERIC Educational Resources Information Center

Research and Training Center on Family Support and Children's Mental Health, 2005

2005-01-01

"Data Trends" reports present summaries of research on mental health services for children and adolescents and their families. The article summarized in this "Data Trends" reviews theory and research on stigma and mental health with a focus on the stigmatization of mental illness in the family when either a child or a parent has a mental illness.…

[Informing members of families affected by fragile X syndrome of this diagnosis].

PubMed

Carrasco, M

2001-10-01

Fragile X syndrome (FXS) is a genetic disorder that may seriously affect the development of patients. One of the hardest tasks for the professionals of medicine is to tell the parents that their child is suffering a serious illness that may cause some permanent handicap. This normally implies drastic changes in live projects and expectations for the parents. The knowledge of diagnosis and the supply of information to the parents give rise to an important emotional impact on both parents and the rest of the family. In general terms, the patient implies more than a single ill person--a genetic illness such as FXS, which causes serious cognitive and behavioural disturbances, implies three situations that the family has to face: on one hand, the family has to accept a new world that had never been known; a son or daughter with a genetic disorder unknown not only for them, but also for most of the professionals they have visited before having a diagnosis, and in many cases with special needs and serious behavioural disturbances. On the other hand, the family must accept that the diagnosis may not be restricted to the patient, because some other members of the family could be suffering from the same illness. Finally, they have to face the fact that one of the parents has transmitted the illness, that is, 'the genetic guilt' in the illness of their son or daughter.

Analysis of a support group for children of parents with mental illnesses: managing stressful situations.

PubMed

Gladstone, Brenda M; McKeever, Patricia; Seeman, Mary; Boydell, Katherine M

2014-09-01

We report an ethnographic analysis of a psycho-education and peer-support program for school-aged children of parents with mental illnesses. We conducted a critical discourse analysis of the program manual and observed group interactions to understand whether children shared program goals predetermined by adults, and how, or if, the intervention was responsive to their needs. Children were expected to learn mental illness information because "knowledge is power," and to express difficult feelings about being a child of a mentally ill parent that was risky. Participants used humor to manage group expectations, revealing how they made sense of their parents' problems, as well as their own. Suggestions are made for determining good mental health literacy based on children's preferences for explaining circumstances in ways they find relevant, and for supporting children's competencies to manage relationships that are important to them. © The Author(s) 2014.

A qualitative study of programs for parents with serious mental illness and their children: building practice-based evidence.

PubMed

Nicholson, Joanne; Hinden, Beth R; Biebel, Kathleen; Henry, Alexis D; Katz-Leavy, Judith

2007-10-01

The rationale for the development of effective programs for parents with serious mental illness and their children is compelling. Using qualitative methods and a grounded theory approach with data obtained in site visits, seven existing programs for parents with mental illness and their children in the United States are described and compared across core components: target population, theory and assumptions, funding, community and agency contexts, essential services and intervention strategies, moderators, and outcomes. The diversity across programs is strongly complemented by shared characteristics, the identification of which provides the foundation for future testing and the development of an evidence base. Challenges in program implementation and sustainability are identified. Qualitative methods are useful, particularly when studying existing programs, in taking steps toward building the evidence base for effective programs for parents with serious mental illness and their children.

Parenting challenges in the setting of terminal illness: a family-focused perspective.

PubMed

Zaider, Talia I; Salley, Christina G; Terry, Rachel; Davidovits, Michael

2015-03-01

In the advanced stages of illness, families with dependent children experience disruption across all dimensions of family life. The need for family support during palliative care is well recognized, yet little is understood about how parents and their children navigate these difficult circumstances. This review summarizes the current body of research on parenting challenges in advanced cancer. To date, the study of parental cancer has focused predominantly on the early stages of disease and its impact on children and adolescents. Less is known about how families with minor children prepare for parental loss. Evidence suggests that having dependent children influences parents' treatment decisions at the end of life, and that a central concern for children and parents is optimizing time spent together. Parents may feel an urgency to engage in accelerated parenting, and maintaining normalcy remains a consistent theme for the ill and healthy parent alike. There is a growing evidence base affirming the importance of responsive communication prior to death. Advancing knowledge about the parenting experience at the end of life is critical for ensuring effective support to the entire family, as it accommodates and prepares for the loss of a vital member.

Developing an Australian-first recovery model for parents in Victorian mental health and family services: a study protocol for a randomised controlled trial.

PubMed

Maybery, Darryl; Goodyear, Melinda; Reupert, Andrea; Sheen, Jade; Cann, Warren; Dalziel, Kim; Tchernagovski, Phillip; O'Hanlon, Brendan; von Doussa, Henry

2017-05-26

A considerable number of people with a mental illness are parents caring for dependent children. For those with a mental illness, parenting can provide a sense of competence, belonging, identity and hope and hence is well aligned to the concept of personal recovery. However, little research has focused on the recovery journey of those who are parents and have a mental illness. This randomised controlled trial aims to (i) evaluate the effectiveness of an intervention model of recovery for parents (Let's Talk about Children) in three different mental health service sectors and (ii) examine the economic value of a larger roll out (longer term) of the parent recovery model. A two arm parallel randomised controlled trial will be used with participants, who are being treated for their mental illness in adult mental health, non-government community mental health or family welfare services. The study will involve 192 parents, who are considered by their treating practitioner to be sufficiently well to provide informed consent and participate in an intervention (Let's Talk about Children) or control group (treatment as usual). Participant randomisation will occur at the level of the treating practitioner and will be based on whether the randomised practitioner is trained in the intervention. Outcomes are compared at pre, post intervention and six-month follow-up. Recovery, parenting and family functioning, and quality of life questionnaires will be used to measure parent wellbeing and the economic benefits of the intervention. This is the first randomised controlled trial to investigate the efficacy of a parenting intervention on recovery outcomes and the first to provide an economic evaluation of an intervention for parents with a mental illness. An implementation model is required to embed the intervention in different sectors. The trial was retrospectively registered: ACTRN12616000460404 on the 8/4/2016.

Emotional abuse among children: a study in Jeddah, Saudi Arabia.

PubMed

Elarousy, W; Al-Jadaani, M

2013-10-01

Emotional abuse is the most hidden and underestimated form of child maltreatment. We report an exploratory study in Saudi Arabia of the rate and types of emotional abuse among children and its association with selected variables. A convenience sample of 60 children aged 12-18 years was recruited from 3 malls in Jeddah. A specially designed, self-administered questionnaire was completed in confidence by the children with the consent of parents. Overall 90% of participants reported at least 1 form of rejecting emotional abuse and 61.7% at least 1 form of ignoring or terrorizing types of abuse. Chronic illness among parents was significantly positively correlated with terrorizing emotional abuse. There was a statistically significant negative correlation between mothers' relationship with the child and ignoring and terrorizing types of emotional abuse. Further research is needed about the community prevalence, correlates and consequences of child emotional abuse in Saudi Arabia.

Anaphylaxis: how do you live with it?

PubMed

Mandell, Deena; Curtis, Ruth; Gold, Milton; Hardie, Susan

2005-11-01

This article reports on a study of the needs of families coping with life-threatening allergies in a child. Due to the scarcity of publications on the psychosocial dimensions of anaphylaxis, the authors draw on selected literature on family coping with chronic illness, asthma, and allergy to provide a conceptual context for the research and discussion of findings. Using qualitative methodology, parents from 17 families were interviewed about their experiences adjusting to a diagnosis of anaphylaxis in a child. From participants' responses about the nature and sources of information and support, parenting dilemmas, family activities, anxieties, challenges, and coping strategies, the authors identify patterns in the adaptive processes related to predictable developmental and episodic events that increase anxiety and support needs. Social work clinicians and other family-serving professionals can help families maintain an optimal balance between protective and debilitating anxiety. Potential interventions in community and health settings are suggested.

High-quality chronic care delivery improves experiences of chronically ill patients receiving care

PubMed Central

Cramm, Jane Murray; Nieboer, Anna Petra

2013-01-01

Objective Investigate whether high-quality chronic care delivery improved the experiences of patients. Design This study had a longitudinal design. Setting and Participants We surveyed professionals and patients in 17 disease management programs targeting patients with cardiovascular diseases, chronic obstructive pulmonary disease, heart failure, stroke, comorbidity and eating disorders. Main Outcome Measures Patients completed questionnaires including the Patient Assessment of Chronic Illness Care (PACIC) [T1 (2010), 2637/4576 (58%); T2 (2011), 2314/4330 (53%)]. Professionals' Assessment of Chronic Illness Care (ACIC) scores [T1, 150/274 (55%); T2, 225/325 (68%)] were used as a context variable for care delivery. We used two-tailed, paired t-tests to investigate improvements in chronic illness care quality and patients' experiences with chronic care delivery. We employed multilevel analyses to investigate the predictive role of chronic care delivery quality in improving patients' experiences with care delivery. Results Overall, care quality and patients' experiences with chronic illness care delivery significantly improved. PACIC scores improved significantly from 2.89 at T1 to 2.96 at T2 and ACIC-S scores improved significantly from 6.83 at T1 to 7.18 at T2. After adjusting for patients' experiences with care delivery at T1, age, educational level, marital status, gender and mental and physical quality of life, analyses showed that the quality of chronic care delivery at T1 (P < 0.001) and changes in care delivery quality (P < 0.001) predicted patients' experiences with chronic care delivery at T2. Conclusion This research showed that care quality and changes therein predict more positive experiences of patients with various chronic conditions over time. PMID:24123243

Psychological complaints among children in joint physical custody and other family types: Considering parental factors

PubMed Central

Fransson, Emma; Turunen, Jani; Hjern, Anders; Östberg, Viveca; Bergström, Malin

2016-01-01

Aims: Increasing proportions of Scandinavian children and children in other Western countries live in joint physical custody, moving between parents’ homes when parents live apart. Children and parents in non-intact families are at risk of worse mental health. The potential influence of parental ill-health on child well-being in the context of differing living arrangements has not been studied thoroughly. This study investigates the psychological complaints of children in joint physical custody in comparison to children in sole parental care and nuclear families, while controlling for socioeconomic differences and parental ill-health. Methods: Data were obtained from Statistics Sweden’s yearly Survey of Living Conditions 2007–2011 and child supplements with children 10–18 years, living in households of adult participants. Children in joint physical custody (n=391) were compared with children in sole parental care (n=654) and children in nuclear families (n=3,639), using a scale of psychological complaints as the outcome measure. Results: Multiple regression modelling showed that children in joint physical custody did not report higher levels of psychological complaints than those in nuclear families, while children in sole parental care reported elevated levels of complaints compared with those in joint physical custody. Adding socioeconomic variables and parental ill-health only marginally attenuated the coefficients for the living arrangement groups. Low parental education and parental worry/anxiety were however associated with higher levels of psychological complaints. Conclusions: Psychological complaints were lower among adolescents in joint physical custody than in adolescents in sole parental care. The difference was not explained by parental ill-health or socioeconomic variables. PMID:26553250

Program for the Chronically Ill.

ERIC Educational Resources Information Center

Schoenherr, Arline; Schnarr, Barbara

The program for chronically ill students in the Detroit public schools is described. Forms are presented listing needed information and implications for teachers of the following conditions: diabetes, sickle cell anemia, chronic renal failure, congenital heart disease, hemophilia, rheumatoid arthritis, asthma, leukemia, and cystic fibrosis. The…

Psychosocial Impact of Terminal Chronic Illness.

ERIC Educational Resources Information Center

Chubon, Robert A.

1988-01-01

Development of a terminal chronic illness creates a spectrum of problems which call for counseling interventions to assist in the individual's adjustment. This overview, intended to raise the consciousness of rehabilitation counselors, outlines the three stages of terminal illness, followed by an examination of resulting lifestyle and relationship…

An Internet discussion board for parents of mentally ill young children.

PubMed

Scharer, Kathleen

2005-01-01

This paper reports parents' use of electronic bulletin board for social support during a pilot study of an Internet intervention. Parents participated for a mean of 13.83 weeks. The convenience sample consisted of six parents. Data were from site access information and parents' postings. Excluding one mother who checked frequently for messages, mothers have an average of 5.2 postings. Excluding this one mother, the postings/ accesses ratio was greater than 60%. Parents made postings in four categories of "child's illness" having 37 comments and 36 comments for "group maintenance". While the study findings cannot be generalized, these results suggest that parents will use electronic discussion boards.

Exploring views on satisfaction with life in young children with chronic illness: an innovative approach to the collection of self-report data from children under 11.

PubMed

Christie, Deborah; Romano, Gabriella; Barnes, Jacqueline; Madge, Nicola; Nicholas, David B; Koot, Hans M; Armstrong, Daniel F; Shevlin, Mark; Kantaris, Xenya; Khatun, Hasina; Sutcliffe, Alastair G

2012-01-01

The objective of this study was to explore young children's views on the impact of chronic illness on their life in order to inform future development of a patient-based self-report health outcome measure. We describe an approach to facilitating self-report views from young children with chronic illness. A board game was designed in order to obtain qualitative data from 39 children with a range of chronic illness conditions and 38 healthy controls ranging in age from 3 to 11 years. The format was effective in engaging young children in a self-report process of determining satisfaction with life and identified nine domains. The board game enabled children aged 5-11 years with chronic illness to describe the effects of living with illness on home, family, friends, school and life in general. It generated direct, non-interpreted material from children who, because of their age, may have been considered unable or limited their ability to discuss and describe how they feel. Obtaining this information for children aged 4 and under continues to be a challenge.

The efficacy of a senior outreach program in the reduction of hospital readmissions and emergency department visits among chronically ill seniors.

PubMed

Prior, Michael K; Bahret, Beverly A; Allen, Reva I; Pasupuleti, Sudershan

2012-01-01

This study reports on the effectiveness of a community-based senior outreach program in decreasing rehospitalizations and emergency department visits among chronically ill seniors. Participants had been repeatedly hospitalized with chronic illnesses and were subsequently served in an in-home program designed to address their psychosocial and medical needs. Participation in the program was found to be related to lower hospital readmission rates and emergency department usage. Clients also reported decreased financial concerns and depression and anxiety and increased social support. The study adds to the growing body of work supporting community-based programs as effective strategies for decreasing health care usage and improving quality of life for chronically ill seniors.

Within the web: the family-practitioner relationship in the context of chronic childhood illness.

PubMed

Dickinson, Annette R; Smythe, Elizabeth; Spence, Deb

2006-12-01

This hermeneutic phenomenological study explores the relationship between health professionals and families who have a child with a chronic illness. Study participants included 10 family groups who had a child with a chronic illness and 12 practitioners from the disciplines of nursing, medicine, dietetics, physiotherapy and speech therapy. Data were collected by narrative audiotaped interviewing. The results of this study revealed that chronic childhood illness 'throws' families and practitioners together into a web of relationships, which must work for the sake of the child. However, children are usually excluded from the relationship. To understand and manage the child's illness, practitioners and families 'go around' and act 'in-between' relationships. While the quality of the relationship from the family perspective is not essential, relationships are more successful when practitioners recognize the uniqueness of each family web. The nature of the relationship is often simple, yet it coexists with complexity.

Parental quality of life in complex paediatric neurologic disorders of unknown aetiology.

PubMed

van Nimwegen, K J M; Kievit, W; van der Wilt, G J; Schieving, J H; Willemsen, M A A P; Donders, A R T; Verhaak, C M; Grutters, J P C

2016-09-01

Complex paediatric neurology (CPN) patients generally present with non-specific symptoms, such as developmental delay, impaired movement and epilepsy. The diagnostic trajectory in these disorders is usually complicated and long-lasting, and may be burdensome to the patients and their parents. Additionally, as caring for a chronically ill child can be stressful and demanding, parents of these patients may experience impaired health-related quality of life (HRQoL). This study aims to assess parental HRQoL and factors related to it in CPN. Physical and mental HRQoL of 120 parents was measured and compared to the general population using the SF-12 questionnaire. Parents also completed this questionnaire for the measurement of patient HRQoL. Additional questionnaires were used to measure parental uncertainty (Visual Analogue Scale) and worry phenomena (Penn State Worry Questionnaire), and to obtain socio-demographic data. A linear mixed model with random effect was used to investigate which of these variables were associated with parental HRQoL. As compared to the general population, HRQoL of these parents appeared diminished. Fathers showed both lowered physical (51.76, p < 0.05) and mental (49.41, p < 0.01) HRQoL, whereas mothers only showed diminished mental (46.46, p < 0.01) HRQoL. Patient HRQoL and parental worry phenomena were significantly correlated with overall and mental parental HRQoL. The reduction in parental mental HRQoL is alarming, also because children strongly rely on their parents and parental mental health is known to influence children's health. Awareness of these problems among clinicians, and supportive care if needed are important to prevent exacerbation of the problems. Copyright © 2016 European Paediatric Neurology Society. Published by Elsevier Ltd. All rights reserved.

Illness representations as mediators of the relationship between dispositional optimism and depression in patients with chronic tinnitus: a cross-sectional study.

PubMed

Vollmann, Manja; Scharloo, Margreet; Langguth, Berthold; Kalkouskaya, Natallia; Salewski, Christel

2013-01-01

Both dispositional optimism and illness representations are related to psychological health in chronic patients. In a group of chronic tinnitus sufferers, the interplay between these two variables was examined. Specifically, it was tested to what extent the relationship between dispositional optimism and depression is mediated by more positive illness representations. The study had a cross-sectional design. One hundred and eighteen patients diagnosed with chronic tinnitus completed questionnaires assessing optimism (Life Orientation Test-Revised [LOT-R]), illness representations (Illness Perceptions Questionnaire-Revised [IPQ-R]) and depression (Hospital Anxiety and Depression Scale [HADS]). Correlation analysis showed that optimism was associated with more positive illness representations and lower levels of depression. Simple mediation analyses revealed that the relationship between optimism and depression was partially mediated by the illness representation dimensions consequences, treatment control, coherence, emotional representations and internal causes. A multiple mediation analysis indicated that the total mediation effect of illness representations is particularly due to the dimension consequences. Optimism influences depression in tinnitus patients both directly and indirectly. The indirect effect indicates that optimism is associated with more positive tinnitus-specific illness representations which, in turn, are related to less depression. These findings contribute to a better understanding of the interplay between generalised expectancies, illness-specific perceptions and psychological adjustment to medical conditions.

Using Freire's Participatory Educational Method to Understand the Experience of Living With Chronic Illness in the Current Age of Globalization.

PubMed

Camargo Plazas, Maria del Pilar; Cameron, Brenda L

2015-06-01

Many approaches and efforts have been used to better understand chronic diseases worldwide. Yet, little is known about the meaning of living with chronic illness under the pressures of globalization and neoliberal ideologies. Through Freire's participatory educational method, this article presents an innovative approach to understanding the multiple dimensions of living with chronic illness. In this way, we hope to use an innovative approach to address the impact of globalization on the daily life of chronically ill people and thus expand to the body of knowledge on nursing. This article uses Freire's participatory educational method to understand the multiple dimensions of living with chronic illness. This qualitative study follows an interpretive inquiry approach and uses a critical hermeneutic phenomenological method and critical research methodologies. Five participants were recruited for this participatory educational activity. Data collection methods included digitally recorded semistructured individual interviews and a Freire's participatory educational method session. Data analysis included a thematic analysis. Participants reported lacking adequate access to healthcare services because of insurance policies; a general perception that they were an unwanted burden on the healthcare system; and a general lack of government support, advocacy, and political interest. This research activity assisted participants to gain a new critical perspective about the condition of others with chronic diseases and thus provided an enlightening opportunity to learn about the illnesses and experiences of others and to realize that others experienced the same oppression from the healthcare system. Participants became agents of change within their own families and communities. Chronic diseases cause many economic and social consequences in their victims. These findings urge us to move from merely acknowledging the difficulties of people who live with chronic illness in an age of globalization to taking the actions necessary to bring about healthcare, social, and political reform through a process of conscientization and mutual transformation.

Economic hardship associated with managing chronic illness: a qualitative inquiry

PubMed Central

Jeon, Yun-Hee; Essue, Beverley; Jan, Stephen; Wells, Robert; Whitworth, Judith A

2009-01-01

Background Chronic illness and disability can have damaging, even catastrophic, socioeconomic effects on individuals and their households. We examined the experiences of people affected by chronic heart failure, complicated diabetes and chronic obstructive pulmonary disease to inform patient centred policy development. This paper provides a first level, qualitative understanding of the economic impact of chronic illness. Methods Interviews were conducted with patients aged between 45 and 85 years who had one or more of the index conditions and family carers from the Australian Capital Territory and Western Sydney, Australia (n = 66). Content analysis guided the interpretation of data. Results The affordability of medical treatments and care required to manage illness were identified as the key aspects of economic hardship, which compromised patients' capacity to proactively engage in self-management and risk reduction behaviours. Factors exacerbating hardship included ineligibility for government support, co-morbidity, health service flexibility, and health literacy. Participants who were on multiple medications, from culturally and linguistically diverse or Indigenous backgrounds, and/or not in paid employment, experienced economic hardship more harshly and their management of chronic illness was jeopardised as a consequence. Economic hardship was felt among not only those ineligible for government financial supports but also those receiving subsidies that were insufficient to meet the costs of managing long-term illness over and above necessary daily living expenses. Conclusion This research provides insights into the economic stressors associated with managing chronic illness, demonstrating that economic hardship requires households to make difficult decisions between care and basic living expenses. These decisions may cause less than optimal health outcomes and increased costs to the health system. The findings support the necessity of a critical analysis of health, social and welfare policies to identify cross-sectoral strategies to alleviate such hardship and improve the affordability of managing chronic conditions. In a climate of global economic instability, research into the economic impact of chronic illness on individuals' health and well-being and their disease management capacity, such as this study, provides timely evidence to inform policy development. PMID:19818128

Parent Perceptions of Family Social Supports in Families With Children With Epilepsy.

PubMed

Decker, Kim A; Miller, Wendy R; Buelow, Janice M

2016-12-01

When a child is diagnosed with epilepsy, not only has the child's life been disrupted but also the family's sense of normalcy. Although there is considerable literature discussing family concerns and social support issues in families with chronically ill children, a major gap lies in the exploration of how the specifics of childhood epilepsy affect parents and family operations. The purpose of this study was to identify psychosocial care needs of parents of children with epilepsy. Utilizing the Family Systems Nursing theory as a framework, this correlation study examined the relationships among social and community support, family needs, family empowerment, and family quality of life in 29 primary caregivers of a child with epilepsy. These families felt highly supported; they had low needs and high perceptions of empowerment. There was a negative association between social supports and the total family needs survey scale and the subscales of financial support, help regarding explaining to others, and professional support. There was no association between family empowerment or quality of life with parental perceptions of social support. In general, as parental perceptions of family needs increased, perceptions of familial social supports decreased. Further research is recommended to investigate varying socioeconomic status effects in families with children with pediatric epilepsy.

Strategies and Issues in Supporting Children Whose Parents Have a Mental Illness within the School System

ERIC Educational Resources Information Center

Reupert, Andrea; Maybery, Darryl

2007-01-01

It has been estimated that over 20 percent of children live in families where one parent has, or has had, a mental illness. Given the role of schools in children's academic as well as psychosocial development, it was considered important to identify effective strategies that school personnel have used in supporting such children. Parents and…

Effects of loneliness on illness perception in persons with a chronic disease.

PubMed

Özkan Tuncay, Fatma; Fertelli, Tülay; Mollaoğlu, Mukadder

2018-04-01

To determine the effects of loneliness on illness perception in persons with a chronic disease. How an illness is perceived not only affects all dimensions of a person's life but also plays an important role in his/her coping with the complications and consequences of the disease. One of the factors that influence the illness perception is loneliness. The study is a descriptive study. The study sample included 206 individuals over the 18 years of age, conscious, having had a chronic illness at least 1 year, having no communication problems and agreeing to participate in the study after being informed about the study. Data were collected with the Personal Information Form, the Illness Perception Questionnaire and the University of California Los Angeles Loneliness Scale. The forms were administered to the participants in an unoccupied patient room, and the data were collected through face-to-face interviews. The results of the study revealed that individuals with a chronic disease perceived emotional symptoms accompanying the disease more intensely that they accepted their disease was a chronic one and that their personal control and treatment control of the disease were at a middle level. The mean score the participants obtained from the University of California Los Angeles Loneliness Scale was 38.49 ± 11.15. There was a significant negative correlation between this mean score and the mean scores obtained from the following subscales consequences, treatment control, illness perception and emotional representations. In this study, it was concluded that the participants perceived their loneliness level as moderate and that their illness perception was negatively affected as their loneliness levels increased. The knowledge of clinical nurses about perception of patients with chronic illnesses and conditions affecting that perception will enhance compliance with the illness management or treatment strategies. Clinical nurses should observe residents closely for signs of depression and loneliness and support their sense of coherence to reduce emotional and social loneliness. © 2018 John Wiley & Sons Ltd.

[Between taking responsibility and becoming independent. Adolescents with a mentally ill parent].

PubMed

Stelling, Kirsten; Habers, Ingeborg; Jungbauer, Johannes

2008-01-01

By now there is a relatively broadly based basic research as to burden and developmental risks in children of mentally ill parents. Nevertheless, hardly any studies exist focusing the living situation of teenagers concerned. This article presents results from an in-depth interview study with 15 adolescents (15 to 21 years old) who have a mentally ill parent. Particularly, the living situation of the study participants was explored from the perspective of developmental psychology, i. e. considering age-specific developmental tasks. The results show that, in many cases, daily life and future perspectives of adolescents are greatly affected by the mental illness of a parent. Based on the results of the study, the article presents conclusions for further research and psychosocial practice. Generally, professional assistance for children of mentally ill people should be on hand as early as possible. When planning specific help offers for adolescents affected, compatibility to their emotional life-world should be taken into consideration. Involving peer counsellors and offering web-based psychological assistance can contribute to better get in touch with adolescent clients.

["Nicht von schlechten Eltern - NischE": A Family Orientated Collaborative Care Approach to Support Children in Families with Mentally Ill Parents].

PubMed

Wabnitz, Pascal; Kronmüller, Klaus-Thomas; Wieskus-Friedemann, Erwin; Kliem, Sabine; Hoppmann, Johannes; Burek, Monika; Löhr, Michael; Kemper, Ulrich; Nienaber, André

2016-11-01

"Nicht von schlechten Eltern - NischE": A Family Orientated Collaborative Care Approach to Support Children in Families with Mentally Ill Parents The present work describes the setting- and multi-professional offer "NischE" in Gütersloh, a systemic approach for the care of children and their mentally ill parents. Children of mentally ill parents are a special risk group for developing their own mental illness. The aim of the collaborative care model between child and adolescent psychiatry, youth services and adult psychiatry is to enable affected families in terms of family-focused practice a low threshold access to different services. For this purpose, two positions have been created to advise the affected families and support access to the help system in the sense of a systemic case management in a project. The article describes the background and the need for the development of the offer, the current scientific knowledge base on the subject and illustrates the procedure using a case study from practice.

Cognitive functioning and behaviour of epileptic children in parents' assessment.

PubMed

Talarska, Dorota; Steinborn, Barbara; Michalak, Michał

2011-01-01

Cognitive functioning and behaviour of chronically ill children are affected by many factors, including anxiety due to hospitalization, persistent symptoms of sickness and adverse side effects of medications. The aim of this work was to seek out parents' opinion concerning cognitive functioning and behaviour of children with epilepsy. The study comprised 156 children with epilepsy aged 7-18 and treated in the Department of Developmental Neurology at Karol Marcinkowski Poznan University of Medical Sciences and in an outpatient clinic. The research tool used was the questionnaire Quality of Life in Childhood Epilepsy (QOLCE) completed by parents. Assessment of cognitive functioning and behaviour was based on the analysis of the areas V (cognitive processes) and VII (behaviour). Parents assessed children's functioning in the areas of cognitive processes and behaviour at a similar level - 55 points. In the area of cognitive processes, concentration while performing some tasks and reading was assessed as the worst. A significant difference in caregivers' assessment was found according to age, frequency of seizures and duration of disease. In the area analysing the child's behaviour, parents indicated getting angry easily and not being upset by other people's opinions. The display of aggression towards others got the lowest number of comments. The children's functioning was assessed by parents as rather poor in both analysed areas. Parents of children treated with polytherapy noticed more difficulties in cognitive functioning and behaviour than parents of children treated with one medication.

Understanding stigma in chronic health conditions: implications for nursing.

PubMed

Engebretson, Joan

2013-10-01

This article explores the social processes in stigmatization and the theoretical background on the impact in chronic illness. Review of literature from social sciences and applications to health issues. Understanding the social utility of stigmatization in preserving social cohesion and protecting the social order is an important function. However, this process can be harmful when applied to persons with chronic illness, such as HIV-AIDS, and psychiatric illness. These individuals often become shamed, ostracized, isolated, discredited, and socially and economically marginalized. Recent theoretical work on stigma has identified several issues and patient responses that may have implications in many other chronic conditions. Stigma is based on visible or nonvisible health conditions and can be both externally imposed or perceived in a process of self-stigma. Understanding stigma can aid clinicians in providing supportive help for patients with chronic illness. Stigma has been well researched in a few chronic illnesses; however, future studies in other conditions are much needed. Recognizing the underlying social factors has potential use in health-promoting behaviors. Sensitivity to stigma allows health professionals to critically reflect on ways the healthcare environment may add to stigma for their patients. ©2013 The Author(s) ©2013 American Association of Nurse Practitioners.

Illness Perception and Information Behaviour of Patients with Rare Chronic Diseases

ERIC Educational Resources Information Center

Katavic, Snježana Stanarevic; Tanackovic, Sanjica Faletar; Badurina, Boris

2016-01-01

Introduction: This study examined possible correlations between health information behaviour and illness perception among patients with rare chronic diseases. Illness perception is related to coping strategies used by patients, and some health information behaviour practices may be associated with better coping and more positive perception of…

A Therapeutic Approach for Treating Chronic Illness and Disability among College Students

ERIC Educational Resources Information Center

Haemmelmann, Katie L.; McClain, Mary-Catherine

2013-01-01

Research in chronic illness and disability (CID) in college students has demonstrated that students with disabilities encounter more difficulties psychosocially than their nondisabled counterparts. Subsequently, these difficulties impact the ability of these students to successfully adapt. Using the illness intrusiveness model in combination with…

Coping strategies in episodic and chronic tension-type headache.

PubMed

Rollnik, J D; Karst, M; Fink, M; Dengler, R

2001-03-01

To study the importance of coping with illness strategies in tension-type headache (TTH). The pathophysiology of TTH is complex, and coping with illness strategies might contribute to the transformation to a chronic form. We examined 89 subjects (mean age, 45.6 +/- 14.8 years; range, 18 to 72 years) with episodic (n = 37) and chronic (n = 52) TTH. Patients were required to fill in a Freiburg Questionnaire of Coping with Illness (FQCI), a von Zerssen Depression Scale, quality-of-life questionnaires, and a headache home diary (over 4 weeks). In addition, pressure pain thresholds (temporal muscles) and total tenderness scores were obtained. Patients with chronic TTH exhibited poorer quality-of-life measures, slightly more depressive symptoms, and significantly stronger avoidance behavior and endurance strategies on FQCI scales F4 and F5 (P< .05). There was no difference between episodic and chronic TTH with respect to measures of muscle tenderness or pain thresholds. We conclude that disadvantageous coping with illness strategies might contribute to a transformation to chronic TTH.

'You are Okay': a support and educational program for children with mild intellectual disability and their parents with a mental illness: study protocol of a quasi-experimental design.

PubMed

Riemersma, Ivon; van Santvoort, Floor; Janssens, Jan M A M; Hosman, Clemens M H; van Doesum, Karin T M

2015-12-24

Children of parents with a mental illness or substance use disorder (COPMI) have an increased risk of developing social-emotional problems themselves. Fear of stigmatisation or unawareness of problems prevents children and parents from understanding each other. Little is known about COPMI with mild intellectual disabilities (ID), except that they have a high risk of developing social-emotional problems and require additional support. In this study, we introduce a program for this group, the effectiveness of which we will study using a quasi-experimental design based on matching. The program 'You are okay' consists of a support group for children and an online educational program for parents. The goal of the program is to increase children and parents' perceived competence with an aim to prevent social-emotional problems in children. Children between ten and twenty years old with mild ID (IQ between 50 and 85) and at least one of their parents with a mental illness will be included in the study. The children will receive part time treatment or residential care from an institute for children with mild ID and behavioural problems. Participants will be assigned to the intervention or the control group. The study has a quasi-experimental design. The children in the intervention group will join a support group, and their parents will be offered an online educational program. Children in the control group will receive care as usual, and their parents will have no extra offer. Assessments will be conducted at baseline, post-test, and follow up (6 months). Children, parents, and social workers will fill out the questionnaires. The 'You are okay' program is expected to increase children and parents' perceived competence, which can prevent (further) social-emotional problem development. Because the mental illness of parents can be related to the behavioural problems of their children, it is important that children and parents understand each other. When talking about the mental illness of parents becomes standard in children's treatment, stigmatisation and the fear for stigmatisation can decrease. Dutch Trial Register NTR4845 . Registered 9 October 2014.

Care Partnerships: Toward Technology to Support Teens’ Participation in Their Health Care

PubMed Central

Hong, Matthew K.; Wilcox, Lauren; Machado, Daniel; Olson, Thomas A.; Simoneaux, Stephen F.

2016-01-01

Adolescents with complex chronic illnesses, such as cancer and blood disorders, must partner with family and clinical caregivers to navigate risky procedures with life-altering implications, burdensome symptoms and lifelong treatments. Yet, there has been little investigation into how technology can support these partnerships. We conducted 38 in-depth interviews (15 with teenage adolescents with chronic forms of cancer and blood disorders, 15 with their parents, and eight with clinical caregivers) along with nine non-participant observations of clinical consultations to better understand common challenges and needs that could be supported through design. Participants faced challenges primarily concerning: 1) teens’ limited participation in their care, 2) communicating emotionally-sensitive information, and 3) managing physical and emotional responses. We draw on these findings to propose design goals for sociotechnical systems to support teens in partnering in their care, highlighting the need for design to support gradually evolving partnerships in care. PMID:28164178

Striving for balance between caring and restraint: young adults' experiences with parental multiple sclerosis.

PubMed

Moberg, Julie Y; Larsen, Dorte; Brødsgaard, Anne

2017-05-01

To explore and describe how young adults between 18-25 years of age experienced growing up with a parent with multiple sclerosis and how these experiences continue to influence their daily lives. Chronic parental illness is occurring in about 10% of families worldwide, but little is known about how the children experience growing up with a parent with multiple sclerosis during their childhood and into young adulthood. We chose a qualitative design using a phenomenological approach based on Giorgi. Exploratory and open-ended interviews with 14 young adults were conducted. The essence of the phenomenon of having a parent with multiple sclerosis was synthesized into 'Striving for balance between caring and restraint' from two themes 'caring' and 'restraint' and eight subthemes. Participants' experiences of caring for parents with multiple sclerosis continued influencing their other close relationships, in which they tended to assume responsibility while concealing some of their feelings and desires. Most participants showed restraint among parents with and without multiple sclerosis, friends and partners. It seems that one of the greatest challenges of having a parent with multiple sclerosis is achieving a balance between caring for others and asserting one's own desires. Healthcare professionals can support the family by encouraging family members to participate in consultations and to assist the parents in providing information about multiple sclerosis and its symptoms to the children. Parents might need assistance in applying for help with domestic chores or referrals to support groups for their children or other family members. © 2016 John Wiley & Sons Ltd.

Characterizing the Pain Narratives of Parents of Youth With Chronic Pain.

PubMed

Noel, Melanie; Beals-Erickson, Sarah E; Law, Emily F; Alberts, Nicole M; Palermo, Tonya M

2016-10-01

Questionnaire-based research has shown that parents exert a powerful influence on and are profoundly influenced by living with a child with chronic pain. Examination of parents' pain narratives through an observational lens offers an alternative approach to understanding the complexity of pediatric chronic pain; however, the narratives of parents of youth with chronic pain have been largely overlooked. The present study aimed to characterize the vulnerability-based and resilience-based aspects of the pain narratives of parents of youth with chronic pain. Pain narratives of 46 parents were recorded during the baseline session as part of 2 clinical trials evaluating a behavioral intervention for parents of youth with chronic pain. The narratives were coded for aspects of pain-related vulnerability and resilience. Using exploratory cluster analysis, 2 styles of parents' pain narratives were identified. Distress narratives were characterized by more negative affect and an exclusively unresolved orientation toward the child's diagnosis of chronic pain, whereas resilience narratives were characterized by positive affect and a predominantly resolved orientation toward the child's diagnosis. Preliminary support for the validity of these clusters was provided through our finding of differences between clusters in parental pain catastrophizing about child pain (helplessness). Findings highlight the multidimensional nature of parents' experience of their child's pain problem. Clinical implications in terms of assessment and treatment are discussed.

Pilot undergraduate course teaches students about chronic illness in children: an educational intervention study.

PubMed

Montenegro, Roberto E; Birnie, Krista D; Fisher, Paul Graham; Dahl, Gary V; Binkley, John; Schiffman, Joshua D

2014-01-01

Recent data question whether medical education adequately prepares physicians to care for the growing number of children with chronic medical conditions. We describe a 10-week course designed to provide undergraduate students with the knowledge and skills required to understand and care for children with chronic or catastrophic illnesses. The course presented the illness experience from the child's perspective and thus presented information in a manner that was efficient, conducive, and memorable. The curriculum was designed like a graduate-level seminar that included workshops, lectures, readings, writing, and lively discussions. This is an educational intervention study that used survey data to assess changes in attitudes among and between participants completing this course versus students not exposed to this course. We used Somers' D test and Fisher's z-transformation to perform both pre- and post-nonparametric comparisons. Course participants were more likely to change their attitudes and agree that chronically ill children "feel comfortable talking with their peers about their condition" (P=0.003) and less likely to agree that these children "want to be treated differently," "want more sympathy," or "care less about romantic relationships" (P = 0.003, 0.002 and 0.02, respectively). Controls were more likely to continue to agree that chronically ill children "want to be treated differently" (P = 0.009) and "care less about romantic relationships" (P = 0.02), and less likely to agree that these children "talk openly" or "feel comfortable talking with their peers about their condition" (P = 0.04). This classroom-based course serves as a feasible and cost-effective model for universities and medical schools to aid in improving student attitudes toward treating chronically ill children. The course provides the unique opportunity to learn directly from those who care for and those who have lived with chronic illness.

Understanding the school experiences of children and adolescents with serious chronic illness: a systematic meta-review.

PubMed

Lum, A; Wakefield, C E; Donnan, B; Burns, M A; Fardell, J E; Marshall, G M

2017-09-01

Serious chronic illness can have a detrimental effect on school attendance, participation and engagement, leaving affected students at risk of failing to meet their developmental potential. An improved understanding of factors that help to explain or mitigate this risk can help educators and health professionals deliver the most effective support. This meta-review critiqued the available evidence examining the link between six chronic illnesses (asthma, cancer, chronic kidney diseases, heart diseases, cystic fibrosis and gastrointestinal diseases) and children's and adolescents' school experiences and outcomes, as well as investigating the medical, school, psychosocial and sociodemographic factors that are linked to poorer or better school outcomes. We searched CINAHL, Cochrane Database, EMBASE, ERIC, MEDLINE, ProQuest Theses and Dissertations, and PsycINFO (2000-2015). Systematic and narrative reviews, and meta-analyses, of original studies examining students' subjective school experiences and objective school outcomes were eligible. We used the Preferred Reporting Items for Systematic Reviews and Meta-analyses criteria to critically appraise all systematic reviews. The Grading of Recommendations Assessment, Development, and Evaluation system guided our recommendations for practice and research. Eighteen reviews of 172 studies including more than 40 000 students were eligible. Therefore, we chose to conduct a meta-review to provide an overview of the literature on the relationship between chronic illness and school experiences and outcomes. We also explored the associated medical, school, psychosocial and sociodemographic factors affecting the relationship between illness and school experiences and outcomes. Students with chronic illness demonstrate mixed school experiences and outcomes that are often worse than students without chronic illness. Modifiable factors, such as students' engagement with school, may be novel yet appropriate targets of educational support to ensure that these students reach their full schooling potential. © 2017 John Wiley & Sons Ltd.

Patients understanding of depression associated with chronic physical illness: a qualitative study

PubMed Central

2014-01-01

Background Detection of depression can be difficult in primary care, particularly when associated with chronic illness. Patient beliefs may affect detection and subsequent engagement with management. We explored patient beliefs about the nature of depression associated with physical illness. Methods A qualitative interview study of patients registered with general practices in Leeds, UK. We invited patients with coronary heart disease or diabetes from primary care to participate in semi-structured interviews exploring their beliefs and experiences. We analysed transcripts using a thematic approach, extended to consider narratives as important contextual elements. Results We interviewed 26 patients, including 17 with personal experience of depression. We developed six themes: recognising a problem, complex causality, the role of the primary care, responsibility, resilience, and the role of their life story. Participants did not consistently talk about depression as an illness-like disorder. They described a change in their sense of self against the background of their life stories. Participants were unsure about seeking help from general practitioners (GPs) and felt a personal responsibility to overcome depression themselves. Chronic illness, as opposed to other life pressures, was seen as a justifiable cause of depression. Conclusions People with chronic illness do not necessarily regard depression as an easily defined illness, especially outside of the context of their life stories. Efforts to engage patients with chronic illness in the detection and management of depression may need further tailoring to accommodate beliefs about how people view themselves, responsibility and negative views of treatment. PMID:24555886

Self-esteem in adolescents with chronic physical illness vs. controls in Northern Russia.

PubMed

Zashikhina, Anna; Hagglof, Bruno

2014-01-01

This work aims to study self-esteem in adolescents with diabetes, asthma and epilepsy; compare the results with those of the representative sample of healthy adolescents; and evaluate the predictive value of certain demographic, family-related, and disease-related factors on self-esteem. A total of 148 chronically ill adolescents and 301 matched healthy counterparts completed the Rosenberg Self Esteem Scale and the "I think I am" questionnaire. Adolescents' parents answered socio-economic status questions. Disease severity was evaluated by doctors of the outpatient clinic. Comparison analysis of the three disease groups revealed highest self-esteem perception in adolescents with diabetes, and lowest in adolescents with epilepsy. Unexpectedly, adolescents with diabetes scored higher than their healthy counterparts. There were no significant differences between the reports of adolescents with asthma and controls. In the epilepsy group, self-esteem was predicted mostly by disease severity and socio-economic status in diabetes and asthma groups, as well as by age and gender. The maintenance of positive self-esteem in adolescents with diabetes and asthma is a very reassuring finding. The other results of our study provide support for recognizing adolescents with epilepsy as a vulnerable group in the society. A multidisciplinary professional approach targeted on adolescents with epilepsy is needed, with focus on factors connected with maturation and gender issues.

Cancer in working-age is not associated with childhood adversities.

PubMed

Korpimäki, Sonja K; Sumanen, Markku P T; Sillanmäki, Lauri H; Mattila, Kari J

2010-05-01

Early life events are studied as potential causes of cancer. The objective here was to study childhood adversities in the etiology of cancer. The material comprised a population based random sample of 25 898 individuals among the Finnish working-aged population. In 1998 they were requested through six questions in a postal questionnaire to recall their childhood adversities. The cases consisted of people with cancer diagnosed 2000-2006 and registered in the Finnish Cancer Registry (n = 384). The rest of the sample consisted of cancer-free controls. The most common adversities were prolonged financial difficulties, serious conflicts in the family and someone in the family having been seriously or chronically ill. The cancer patients reported more prolonged financial difficulties and someone seriously or chronically ill in the family. They reported less parental divorce than the controls. The associations were not statistically significant after adjusting for age, sex, education, and health behaviour. Nor was there a significant difference in the total number of childhood adversities between the study group and the controls. On the whole, these cancer patients had not experienced more childhood adversities than the controls. According to our findings, there is no cause to attribute development of cancer in working age to childhood adversities. This information may also give relief to other family members.

Race, unemployment rate, and chronic mental illness: a 15-year trend analysis.

PubMed

Lo, Celia C; Cheng, Tyrone C

2014-07-01

Before abating, the recession of the first decade of this century doubled the US unemployment rate. High unemployment is conceptualized as a stressor having serious effects on individuals' mental health. Data from surveys administered repeatedly over 15 years (1997-2011) described changes over time in the prevalence of chronic mental illness among US adults. The data allowed us to pinpoint changes characterizing the White majority--but not Black, Hispanic, or Asian minorities--and to ask whether such changes were attributable to economic conditions (measured via national unemployment rates). We combined 1.5 decades' worth of National Health Interview Survey data in one secondary analysis. We took social structural and demographic factors into account and let adjusted probability of chronic mental illness indicate prevalence of chronic mental illness We observed, as a general trend, that chronic mental illness probability increased as the unemployment rate rose. A greater increase in probability was observed for Blacks than Whites, notably during 2007-2011, the heart of the recession Our results confirmed that structural risk posed by the recent recession and by vulnerability to the recession's effects was differentially linked to Blacks. This led to the group's high probability of chronic mental illness, observed even when individual-level social structural and demographic factors were controlled. Future research should specify the particular kinds of vulnerability that created the additional disadvantage experienced by Black respondents.

Perceptions of chronically ill and healthy consumers about electronic personal health records: a comparative empirical investigation.

PubMed

Cocosila, Mihail; Archer, Norm

2014-07-23

To develop a model of consumer perceptions of electronic personal health records (PHRs) and validate it in a comparative study between consumers who report having a chronic illness and those who report being well. A model of PHR use motivators and barriers was built and tested through a national survey across Canada. Data were collected from 800 individuals, 18 years or older. Half reported having a chronic illness or disability and half reported being well. Analyses were performed with structural equation modelling techniques. A total of 389 answers from chronically ill and 383 from well participants were collected. Perceived usefulness was the key explanation of the intention to use PHRs for both ill and well people (total effect of 0.601 and 0.565, respectively) followed by security, privacy and trust in PHRs (total effect of 0.377 and 0.479, respectively). Conversely, computer anxiety was perceived as a significant barrier (total effect of -0.327 for ill individuals and -0.212 for well individuals). The model proposed was appropriate in explaining key consumer positive and negative perceptions on electronic PHR use. We found little difference in perceptions of electronic PHRs between chronically ill and well individuals, although self-reporting their health status might have influenced the results. To increase the adoption rate of electronic PHRs among both chronically ill and well consumers it is necessary to reinforce consumer perceptions of the usefulness of and trust in these eHealth technologies while mitigating their anxieties about computer use in general. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.