Outcomes that matter: A qualitative study with persons with schizophrenia and their primary caregivers in India

PubMed Central

Balaji, Madhumitha; Chatterjee, Sudipto; Brennan, Beth; Rangaswamy, Thara; Thornicroft, Graham; Patel, Vikram

2012-01-01

Background Involving persons with schizophrenia and their families in designing, implementing and evaluating mental health services is increasingly emphasised. However, there is little information on desired outcomes from the perspectives of these stakeholders from low and middle income countries (LMIC). Aims To explore and define outcomes desired by persons with schizophrenia and their primary caregivers from their perspectives. Method In-depth interviews were held with 32 persons with schizophrenia and 38 primary caregivers presenting for care at one rural and one semi-urban site in India. Participants were asked what changes they desired in the lives of persons affected by the illness and benefits they expected from treatment. Data was analysed using thematic and content analysis. Results Eleven outcomes were desired by both groups: symptom control; employment/education; social functioning; activity; fulfilment of duties and responsibilities; independent functioning; cognitive ability; management without medication; reduced side-effects; self-care; and self-determination. Social functioning, employment/education and activity were the most important outcomes for both groups; symptom control and cognitive ability were more important to persons with schizophrenia while independent functioning and fulfilment of duties were more important to caregivers. Conclusions Interventions for schizophrenia in India should target both clinical and functional outcomes, addressing the priorities of both affected persons and their caregivers. Their effectiveness needs to be evaluated independently from both perspectives. PMID:22981055

Effectiveness of a Stress-Relief Initiative for Primary Caregivers of Adolescents with Intellectual Disability

ERIC Educational Resources Information Center

Hu, Jung; Lin, Jin-Ding; Yen, Chia-Feng; Loh, Ching-Hui; Hsu, Shang-Wei; Lin, Lan-Ping; Wu, Sheng-Ru

2010-01-01

Background: This study provides a perspective on the mental health status and analyses the effectiveness of a stress-relief program for primary caregivers of adolescents with intellectual disability (ID). Method: Seventy-seven primary caregivers of people with ID were recruited (intervention group, n = 31; non-intervention group, n = 46) to the…

[22q11.2 deletion: handicap-related problems and coping strategies of primary caregivers].

PubMed

Briegel, Wolfgang; Schneider, Marco; Schwab, K Otfried

2009-11-01

To investigate handicap-related problems of children and adolescents with 22q11.2 deletion syndrome and their primary caregivers' coping strategies. Primary caregivers of 153 subjects aged 2-16 years were anonymously asked to fill out questionnaires, e.g., the Handicap Related Problems for Parents Inventory. Primary caregivers of 96 subjects (53 males, 43 females; mean age: 7;0 [2;1-16;11] years) sent back questionnaires. Patient's behaviour and discipline were the most important handicap-related problems. Significant correlations could be found between the patient's age and his/her relationship with the primary caregiver (rho=0.228; p=.029) and other family members (rho=0.293; p=.004). Compared to other parents of physically handicapped children or those with multiple handicaps, these parents did not experience increased stress. The more the coping strategies "self-fulfillment" and "intensification of partnership" were used, the lower parental stress was (p=.012, p=.025, respectively). "Focusing on the handicapped child" was positively correlated with high parental stress (p=.000). With regard to parental stress and coping strategies, primary caregivers of children and adolescents with 22q11.2 deletion do not significantly differ from other parents of physically handicapped children. As handicap-related family problems increase with the patient's age, a growing need for counseling, especially for aspects of parenting and discipline, and for treatment can be presumed.

Cultural significance of primary teeth for caregivers in Northeast Brazil.

PubMed

Nations, Marilyn K; Calvasina, Paola Gondim; Martin, Michele N; Dias, Hilma Fontenele

2008-04-01

This anthropological study critically evaluates Brazilian caregivers' symbolic production and significance of their malnourished offspring's primary teeth, as well as their own, and describes popular dental practices. From January to June 2004, ethnographic interviews of 27 poor, low-literacy mothers were conducted at a public Malnutrition Treatment Center in Fortaleza, Ceará State. Participant observation of clinical pathways and home environments supplemented the data. Content analysis was performed. Results confirm that primary teeth are imbued with cultural significance in Northeast Brazil. Mothers examine mouths, perceive signs of decay, associate primary with permanent tooth healthiness, identify ethnodental illnesses, seek assistance, and perform rituals with exfoliated teeth. The mother's motivation to care for primary teeth is sparked by her memories of past toothache and attempts to avoid stigma and discrimination. Social determinants, not mothers' beliefs or behaviors, are the most critical obstacles to effective dental care. Legitimizing lay knowledge and empowering caregivers and children can improve oral health in Northeast Brazil.

Stroke survivors' and informal caregivers' experiences of primary care and community healthcare services - A systematic review and meta-ethnography.

PubMed

Pindus, Dominika M; Mullis, Ricky; Lim, Lisa; Wellwood, Ian; Rundell, A Viona; Abd Aziz, Noor Azah; Mant, Jonathan

2018-01-01

To describe and explain stroke survivors and informal caregivers' experiences of primary care and community healthcare services. To offer potential solutions for how negative experiences could be addressed by healthcare services. Systematic review and meta-ethnography. Medline, CINAHL, Embase and PsycINFO databases (literature searched until May 2015, published studies ranged from 1996 to 2015). Primary qualitative studies focused on adult community-dwelling stroke survivors' and/or informal caregivers' experiences of primary care and/or community healthcare services. A set of common second order constructs (original authors' interpretations of participants' experiences) were identified across the studies and used to develop a novel integrative account of the data (third order constructs). Study quality was assessed using the Critical Appraisal Skills Programme checklist. Relevance was assessed using Dixon-Woods' criteria. 51 studies (including 168 stroke survivors and 328 caregivers) were synthesised. We developed three inter-dependent third order constructs: (1) marginalisation of stroke survivors and caregivers by healthcare services, (2) passivity versus proactivity in the relationship between health services and the patient/caregiver dyad, and (3) fluidity of stroke related needs for both patient and caregiver. Issues of continuity of care, limitations in access to services and inadequate information provision drove perceptions of marginalisation and passivity of services for both patients and caregivers. Fluidity was apparent through changing information needs and psychological adaptation to living with long-term consequences of stroke. Potential limitations of qualitative research such as limited generalisability and inability to provide firm answers are offset by the consistency of the findings across a range of countries and healthcare systems. Stroke survivors and caregivers feel abandoned because they have become marginalised by services and they do not

Coping and adaptive strategies of traumatic brain injury survivors and primary caregivers.

PubMed

Adams, Deana; Dahdah, Marie

2016-06-27

Qualitative research methods allowed the investigator to contribute to the development of new theories and to examine change in processes over time, which added rich detail to existing knowledge of the use of coping and adaptive strategies by traumatic brain injury survivors and their primary caregivers (Ponsford, Sloan, & Snow, 2013). The advantages of phenomenological study were that it allows flexibility to explore and understand meanings attached by people to well-studied concepts such as coping, resiliency, and adaptation or compensation. Phenomenological study was sensitive to contextual factors. It also permitted the study of in-depth dynamics of coping and adaptive strategies of TBI survivors and primary caregivers, while understanding the social and psychological implications of the phenomenon. To explore the needs and deficits of adult traumatic brain injury (TBI) survivors and primary caregivers; and to identify their self-initiated coping and adaptive strategies. Significant to this study was the development of coping and adaptive strategies by the participants after their discharge from inpatient and rehabilitation treatment. The compensatory skills taught in treatment settings did not transfer to the home environment. Therefore, these strategies developed independently from previous treatment recommendations contributed to the development of theory related to rehabilitation and counseling. Distinctive to this study was the similarity of coping and adaptive strategies developed from both mild and severe traumatic brain injury survivors. This study consisted of eleven with TBI and six primary caregivers (N = 17), who participated in a series of semi-structured interviews aimed at discovering the coping and adaptive strategies utilized in dealing with the effects of brain injury. A Qualitative Phenomenological design was employed. Patience and understanding, support, and professional help were identified by TBI survivors and caregivers as being their

Posttraumatic growth and its correlates in primary caregivers of schizophrenic patients

PubMed Central

Balaban, Ozlem Devrim; Yazar, Menekse Sila; Aydin, Erkan; Agachanli, Ruken; Yumrukcal, Huseyin

2017-01-01

Context: The concept of posttraumatic growth (PTG) is important to focus on positive outcomes of a challenging process like caregiving. Aims: The aim of the present study is to investigate the factors inclusively considered to be related to PTG in primary caregivers of schizophrenic patients. Settings and Design: This cross-sectional study was conducted with caregivers of patients with schizophrenia between January 2013 and February 2014 at a mental health hospital. Materials and Methods: The study was carried out on 109 schizophrenic patients followed up at Bakirkoy Prof. Dr. Mazhar Osman Research and Training Hospital for Psychiatry, Neurology, and Neurosurgery, and 109 family members who are the primary caregivers of the patients. All caregivers were evaluated with Posttraumatic Growth Inventory, Multidimensional Scale of Perceived Social Support, Ways of Coping Inventory, and the Basic Personality Traits Inventory and Religious Orientation Scale. Statistical Analysis: Kruskal–Wallis and Mann–Whitney U-test were used in quantitative analysis of data. Spearman's correlation analysis was used in the determination of correlation between variables. Linear regression analysis was used in the determination of predictors of PTG. Results: Optimistic and problem-focused coping, perceived social support (total and all three - family, friends, significant others - domains), personality traits such as extraversion, conscientiousness, and openness to experience, and religiousness were found to be related with PTG. Religiousness, perceived social support, and openness to experience were independent predictors of PTG. Conclusions: Interventions to caregivers of schizophrenic patients on the domains of social support and coping strategies may contribute to caring process in a positive change. PMID:29497186

Prevalence of depression and its associated factors among primary caregivers of patients with severe mental illness in southwest, Ethiopia.

PubMed

Derajew, Habtamu; Tolessa, Daniel; Feyissa, Garumma Tolu; Addisu, Fikir; Soboka, Matiwos

2017-03-09

Depression is a serious mental illness that affects patients' treatment outcome and caregiver's day to day life. The prevalence of depression among caregivers of patients with severe mental illness is greater than the general population. Little is known about depression among primary caregivers of patients with severe mental illness in Ethiopia. This study is aimed at assessing prevalence of depression and associated factors among primary caregivers of patients with mental illness. A cross-sectional study was conducted among primary caregivers of patients with severe mental illness in Jimma University Teaching Hospital. Patient health questionnaire (PHQ-9) was used to assess depression. A multidimensional scale of perceived social support (MSPSS) was used to assess perceived social support; Cut down, Annoyed, Guilty, Eye opener (CAGE) scale was used to assess alcohol use disorder. After conducting descriptive analyses, logistic regression analysis was finally used for bivariate and multivariable analysis. The overall prevalence of depression among primary caregivers of patients with mental illness was 12 (19%). Out of those caregivers with depressions, 11.3, 3.5 and 4.2% had moderate, moderately severe and severe types of depression respectively. The prevalence of depression among female primary caregivers was 25% (n = 40). Being single (aOR 2.62, 95% CI = 1.07, 6.41), giving care more than six hours per day (aOR 3.75, 95% CI = 1.51, 9.33) and caring for a patient who had more than once episodes of suicidal attempts (aOR 1.48, 95% CI = 1.07, 3.42) were positively associated with depression among caregivers of patients with mental illness. We found that the prevalence of depression among primary caregivers was high. Depression among caregivers was associated with giving care more than six hours per day and caring for a patient who had two or more episodes of suicidal attempts. The prevalence of depression among female caregivers was higher than that

Parental burden, coping, and family functioning in primary caregivers of children with Joubert syndrome.

PubMed

Luescher, J L; Dede, D E; Gitten, J C; Fennell, E; Maria, B L

1999-10-01

Children with Joubert syndrome have physical and intellectual disabilities. The purpose of this study was to assess the impact of Joubert syndrome on parental burden, coping, and family functioning. Forty-nine primary caregivers were surveyed. Forty-three primary caregivers were mothers and six were fathers; their mean age was 34 years. The following measures were used: Beck Depression Inventory, Child Development Inventory, Caregiver Strain Index, Family Assessment Device, and Ways of Coping Checklist-Revised. The data show that caregiver burden is not related to the severity of the child's illness, but that caregivers report significant burden. Higher burden was associated with the use of palliative coping methods, and family functioning was problematic. The results of this study suggest that for parents of children with Joubert syndrome, degree of parental burden depends more on the parents' coping skills and the level of family functioning rather than on the degree of the child's impairment. These findings highlight the importance of assessing caregiver burden, as well as decreased family functioning or coping abilities, since these problems often can be managed with psychologic intervention.

[Association between anxiety and coping strategies employed by primary caregivers of bedridden patients].

PubMed

Cedillo-Torres, Arianna Gabriela; Grijalva, María Guadalupe; Santaella-Hidalgo, Guadalupe B; Cuevas-Abad, Martha; González Pedraza-Avilés, Alberto

2015-01-01

The primary caregiver faces a set of problems derived from the responsibility to provide care to his patient; this leads to the creation of complex psychological responses that act as a mechanism known as cognitive and behavioral coping. The objective was to determine if there was a correlation between the level of anxiety and the coping strategies used by primary caregivers of bedridden patients. Transversal, descriptive and correlational study. Beck Anxiety Inventory and the Coping Strategies Inventory were used. We used Spearman's rank correlation coefficient, a significance level of 0.05 and the statistical program SPSS, version 15. We included 60 primary caregivers. The most common score for anxiety was moderate (28 %). The most frequently used strategy was problem solving (average = 14.7). By relating the level of anxiety and coping strategies a significant correlation was obtained with problem solving: r = 0.260; self-criticism, r = 0.425; wishful thinking, r = 0.412; and social withdrawal, r = 0.453. The anxiety has an impact on the way caregivers cope; most of the population who have moderate to severe anxiety use desadaptive strategies focused on emotion.

[Coping and subjective burden in primary caregivers of dependent elderly relatives in Andalusia, Spain].

PubMed

Pérez-Cruz, Margarita; Muñoz-Martínez, M Ángeles; Parra-Anguita, Laura; Del-Pino-Casado, Rafael

To analyse the relationship between the type of coping and subjective burden in caregivers of dependent elderly relatives in Andalusia (Spain). Cross-sectional study. Primary Health Care (autonomous community of Andalusia, Spain). A convenience sample of 198 primary caregivers of dependent elderly relatives. Coping (Brief COPE), subjective burden (caregiver stress index), objective burden (functional capacity [Barthel Index], cognitive impairment [Pfeiffer Test], behavioural problems of the care recipient [Neuropsychiatric Inventory], and caregivers' dedication to caring), gender and kinship. Most caregivers were women (89.4%), daughters of the care recipient (57.1%), and shared home with him/her (69.7%). On controlling for objective burden, gender and kinship, it was found that subjective burden was positively associated with dysfunctional coping (β=0.28; P<.001) and negatively with emotion-focused coping (β=-0.25; P=.001), while no association was found with problem-focused coping. Dysfunctional coping may be a risk factor for subjective burden, and emotion-focused coping may be a protective factor for that subjective burden regardless of the objective burden, and gender and kinship of the caregivers. Copyright © 2016 Elsevier España, S.L.U. All rights reserved.

Correlates of caregiver burden among family caregivers of older Korean Americans.

PubMed

Casado, Banghwa; Sacco, Paul

2012-05-01

Despite the rapid growth of older ethnic minority populations, knowledge is limited about informal caregiving among these groups. Our aim was to identify correlates of caregiver burden among family caregivers of older Korean Americans (KAs). A cross-sectional survey collected data from 146 KA caregivers. Using a modified stress-appraisal model, we examined background and context characteristics (caregiver sex, relationship to care recipient, college education, English proficiency, time in caregiving role, family support network, friend support network), a primary stressor (care recipient functional dependency), a primary appraisal (caregiving hours), and resources (family agreement, care management self-efficacy, service use self-efficacy) as potential correlates of caregiver burden. Interactions between the primary stressor, primary appraisal, and resources were also tested. Being female and the care recipient's spouse were associated with higher burden. Conversely, a larger family support network, greater family agreement, and greater care management self-efficacy were associated with lower burden. A significant interaction was detected between functional dependency and family agreement; higher levels of family agreement moderated the association between care recipient functional dependency and caregiver burden. Interventions to reduce caregiver burden in KA caregivers may be more effective if they include approaches specifically designed to build family support, improve family agreement, and increase caregivers' self-efficacy.

Mental health of primary caregivers for children and adolescents with HIV/AIDS in Cuba.

PubMed

Santiesteban, Yasel; Castro, Marta; Calvo, Marina

2012-04-01

An HIV diagnosis, like that of any another chronic illness, alters family dynamics. Although the whole family is affected, usually only one member is the primary caregiver of the sick person. Children and adolescents with HIV/AIDS need care according to their physical, psychological and social needs, requiring responsible caregivers who maintain adequate physical and mental health. To describe general mental health characteristics of primary caregivers of Cuban children and adolescents from across the country diagnosed with HIV/AIDS at the Pedro Kourí Tropical Medicine Institute. A descriptive study was carried out from November 2009 through March 2010. Twenty-six caregivers met inclusion criteria and 13 participated. A psychological assessment was made of each caregiver's mental health, including both externally evaluated and self reported factors associated with physical or psychological problems. Clinical interview and observation, psychiatric examination and various psychological tests were used. A simple descriptive analysis of caregiver characteristics, qualitative information and test results was made. Most caregivers were women, infected with HIV/AIDS themselves, unemployed and without a partner. They presented symptoms of anxiety but no clinical psychiatric diagnoses. The study group reported dissatisfaction with family functioning and partner relationships, as well as problems related to HIV and poor employment prospects. Caregivers studied described complex intra- and interpersonal life dynamics influenced by their HIV infection. Their mental health status, evaluated through a combination of objective and subjective factors reveals a complex reality, indicating the need for a more comprehensive and efficient approach to caregivers' health care, integrating attention to both physical and mental health.

[The resilience and health status of primary caregivers of schizophrenia patients].

PubMed

Fan, Ya-Chi; Chen, Mei-Bih; Lin, Kuan-Chia; Bai, Ya-Mei; Wei, Shiow-Jing

2014-12-01

Resilience has been shown to have a positive effect on health status. However, little research has been conducted on the impact of resilience on the health of primary caregivers of schizophrenia patients. This study investigated the correlations between resilience and the health status of caregivers of schizophrenia patients. A cross-sectional, descriptive research design was used. Data collection was conducted using a set of questionnaires that included a demographic datasheet, the SOC-13 (Sense of Coherence), the DASS-21 (Depression Anxiety Stress Scales), and the SF-36 (short form). Seventy caregivers of schizophrenia patients were enrolled as participants at the psychiatric inpatient department of a medical center. SPSS 17.0 and SAS.9.2 statistical software packages were used to conduct descriptive analysis, the Sobel test, and Tobit model analysis. (1) The mean QOL (quality of life) scale score was 67.46 (SD = 17.74). Nearly one-fifth (18.6%) of caregivers were classified in the low to high depression range; 17.1% were classified in the low to high anxiety level; and 10% were classified in low to high stress level. (2) Duration of the caring period correlated negatively with caregiver QOL; having a concomitant disease significantly impacted QOL and resilience; and number of patient hospitalization days correlated negatively with level of caregiver anxiety. (3) The numbers of incidents of patient violence and patient suicide attempts correlated negatively with caregiver resilience and QOL. (4) Resilience was a mediator between care-giver demographic data and QOL. (5) Caregiver resilience was a predictor of QOL, depression, anxiety, and stress. The findings of the present study increase our understanding of the impact of resilience on the health status of caregivers of schizophrenia patients. The authors hope these finding may be referenced in the development of resilience-based nursing caring models in the future.

Family Caregiver Marginalization is Associated with Decreased Primary and Subspecialty Asthma Care in Head Start Children.

PubMed

Sadreameli, S Christy; Riekert, Kristin A; Matsui, Elizabeth C; Rand, Cynthia S; Eakin, Michelle N

2018-05-03

Urban minority children are at risk for poor asthma outcomes and may not receive appropriate primary or subspecialty care. We hypothesized that preschool children with asthma whose caregivers reported more barriers to care would be less likely to have seen their primary care provider (PCP) or an asthma subspecialist and more likely to have had a recent emergency department (ED) visit for asthma. The Barriers to Care Questionnaire (BCQ) measures expectations, knowledge, marginalization, pragmatics, and skills. We assessed asthma control via TRACK and these outcomes: PCP visits for asthma in past six months, subspecialty care (allergist or pulmonologist) in past two years, and ED visits in past three months. 395 caregivers (96% African-American, 82% low-income, 96% Medicaid) completed the BCQ. Sixty percent(N=236) of children had uncontrolled asthma, 86% had seen a PCP, 23% had seen a subspecialist, and 29% had an ED visit. Barriers related to marginalization were associated with decreased likelihood of PCP (OR 0.95, p=0.014) and subspecialty visits (OR 0.92, p=0.019). Overall BCQ score was associated with decreased likelihood of subspecialty care (OR 0.98, p=0.027). Barriers related to expectations, knowledge, pragmatics, and skills were not associated with any of the care outcomes. Among low-income, predominantly African-American preschool children with asthma, primary and subspecialty care were less likely if caregivers reported past negative experiences with the healthcare system (marginalization). Clinicians who serve at-risk populations should be sensitive to families' past experiences and should consider designing interventions to target the most commonly reported barriers. Copyright © 2018. Published by Elsevier Inc.

Co-creating healthful eating behaviors with very young children: The impact of information overload on primary caregivers.

PubMed

Norton, Julie L; Raciti, Maria M

2017-01-01

Primary caregivers of very young children are subject to excessive and often disparate information regarding the instilling of healthful eating behaviors. Our study focuses on the integration of the operant resources of primary caregivers (i.e., their knowledge and modeling skills) and that of their very young children (i.e., their self-regulation of energy intake and food preferences) to co-create healthful eating behaviors as a measure to curb overweight and obesity in adulthood. Our two-stage qualitative study makes original contributions demonstrating that primary caregivers' efforts to co-create healthful eating behaviors with their very young children are adversely affected by information overload.

Pediatric caregiver attitudes toward email communication: survey in an urban primary care setting.

PubMed

Dudas, Robert Arthur; Crocetti, Michael

2013-10-23

Overall usage of email communication between patients and physicians continues to increase, due in part to expanding the adoption of electronic health records and patient portals. Unequal access and acceptance of these technologies has the potential to exacerbate disparities in care. Little is known about the attitudes of pediatric caregivers with regard to their acceptance of email as a means to communicate with their health care providers. We conducted a survey to assess pediatric caregiver access to and attitudes toward the use of electronic communication modalities to communicate with health care providers in an urban pediatric primary care clinic. Participants were pediatric caregivers recruited from an urban pediatric primary care clinic in Baltimore, Maryland, who completed a 35-item questionnaire in this cross-sectional study. Of the 229 caregivers who completed the survey (91.2% response rate), 171 (74.6%) reported that they use email to communicate with others. Of the email users, 145 respondents (86.3%) stated that they would like to email doctors, although only 18 (10.7%) actually do so. Among email users, African-American caregivers were much less likely to support the expanded use of email communication with health care providers (adjusted OR 0.34, 95% CI 0.14-0.82) as were those with annual incomes less than US $30,000 (adjusted OR 0.26, 95% CI 0.09-0.74). Caregivers of children have access to email and many would be interested in communicating with health care providers. However, African-Americans and those in lower socioeconomic groups were much less likely to have positive attitudes toward email.

Pediatric Caregiver Attitudes Toward Email Communication: Survey in an Urban Primary Care Setting

PubMed Central

2013-01-01

Background Overall usage of email communication between patients and physicians continues to increase, due in part to expanding the adoption of electronic health records and patient portals. Unequal access and acceptance of these technologies has the potential to exacerbate disparities in care. Little is known about the attitudes of pediatric caregivers with regard to their acceptance of email as a means to communicate with their health care providers. Objective We conducted a survey to assess pediatric caregiver access to and attitudes toward the use of electronic communication modalities to communicate with health care providers in an urban pediatric primary care clinic. Methods Participants were pediatric caregivers recruited from an urban pediatric primary care clinic in Baltimore, Maryland, who completed a 35-item questionnaire in this cross-sectional study. Results Of the 229 caregivers who completed the survey (91.2% response rate), 171 (74.6%) reported that they use email to communicate with others. Of the email users, 145 respondents (86.3%) stated that they would like to email doctors, although only 18 (10.7%) actually do so. Among email users, African-American caregivers were much less likely to support the expanded use of email communication with health care providers (adjusted OR 0.34, 95% CI 0.14-0.82) as were those with annual incomes less than US $30,000 (adjusted OR 0.26, 95% CI 0.09-0.74). Conclusions Caregivers of children have access to email and many would be interested in communicating with health care providers. However, African-Americans and those in lower socioeconomic groups were much less likely to have positive attitudes toward email. PMID:24152542

Collateral benefits of the family check-up in early childhood: primary caregivers' social support and relationship satisfaction.

PubMed

McEachern, Amber D; Fosco, Gregory M; Dishion, Thomas J; Shaw, Daniel S; Wilson, Melvin N; Gardner, Frances

2013-04-01

This research investigated potential collateral benefits of the Family Check-Up (FCU) intervention, namely, primary caregivers' perceived social support and couple relationship satisfaction. A subsample of 435 low-income families with a 2-year-old child was recruited to participate in a randomized controlled trial assessing preventative effects of the FCU. Longitudinal growth models were used to evaluate intention-to-treat effects of the FCU on increases in primary caregivers' ratings of social support satisfaction with perceived social support and significant-other relationships, and indirect effects on primary caregivers through improvements in children's behavior problems. Support was found for a model in which reductions in child problem behavior from ages 2 to 4 predicted positive change in caregiver-rated social support and relationship satisfaction over a 3-year period. This indirect effects model is discussed with respect to implications for early childhood prevention research focused on improving family functioning. (PsycINFO Database Record (c) 2013 APA, all rights reserved).

Psychological status and quality of life among primary caregivers of individuals with mental illness: a hospital based study.

PubMed

Jeyagurunathan, Anitha; Sagayadevan, Vathsala; Abdin, Edimansyah; Zhang, YunJue; Chang, Sherilyn; Shafie, Saleha; Rahman, Restria Fauziana Abdul; Vaingankar, Janhavi Ajit; Chong, Siow Ann; Subramaniam, Mythily

2017-05-19

This study aimed to explore the psychological status and quality of life among primary caregivers of individuals suffering from various mental illnesses including early psychosis, chronic schizophrenia, depressive disorders, anxiety disorders and dementia. A total of 350 primary caregivers with relatives seeking treatment at a tertiary psychiatric hospital were recruited for this study. Socio-demographic data was obtained and the brief version of the World Health Organisation Quality of Life instrument was used to assess caregiver's quality of life (QOL). Psychological status among primary caregivers was assessed using the General Anxiety Disorder - 7 item (GAD-7) and Patient Health Questionnaire - 9 item (PHQ-9) scales. Family Interview Schedule (FIS) was used to assess the impact of caregiving relating to social problems, interpersonal strain among family members, work related problems and financial difficulties as a result of their relative's illness. The socio-demographic and clinical correlates of QOL, PHQ-9 and GAD-7 were examined using multiple linear and logistic regression analyses. Associations between QOL domains and psychological status was examined using multiple linear regression analyses. The mean age of the primary caregivers was 49.7 years (SD = 13.2), ranging from 21 to 82 years, with a preponderance of females (67.6%), aged 50-64 years old (45.7%). Majority were of Chinese ethnicity (57.5%), had secondary level education (43.1%), were married (65.2%), and employed (64.9%). 18.3% of primary caregivers had symptoms of depression (based on PHQ-9 cut-off point of 10 or greater) while 12.7% had symptoms of anxiety (based on GAD-7 cut-off point of 10 or greater). Multiple linear and logistic regression analyses revealed that primary caregivers aged between 35-49 years and 50-64 years, unemployed, living with others, providing care to those diagnosed with dementia and who had higher FIS scores were significantly more likely to report symptoms

Double Bind: Primary Caregivers of Children with Special Health Care Needs and Their Access to Leave Benefits

PubMed Central

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

2013-01-01

Objective Family leave benefits are a critical tool allowing parents to miss work to care for their ill children. We examined whether access to benefits varies by level of childcare responsibilities among employed parents of children with special health care needs (CSHCN). Methods We conducted telephone interviews with three successive cohorts of employed parents of CSHCN, randomly sampled from a California children’s hospital. At Wave 1 (November 2003 to January 2004) we conducted 372 parent interviews. At Wave 2 (November 2005 to January 2006) we conducted 396 parent interviews. At Wave 3 (November 2007 to December 2008) we conducted 393 parent interviews. We pooled these samples for bivariate and multivariate regression analyses, using wave indicators and sample weights. Results Parents with more childcare responsibilities (primary caregivers) reported less access to sick leave/vacation (65% vs. 82%, P<.001), access to paid leave outside of sick leave/vacation (41% vs. 51%, P<.05), and FMLA eligibility (2890025; vs. 44%, P<.001) than secondary caregivers. Part-time employment and female gender largely explained two of the three associations between more childcare responsibilities and less access to leave benefits. Even in the context of part-time employment, however, primary caregivers were just as likely as secondary caregivers both to miss work due to their child’s illness and to report being unable to miss work when they needed to. Conclusions Due in part to employment and gender differences, leave benefits among parents of CSHCN are skewed away from primary caregivers and toward secondary caregivers. Thus, primary caregivers may face particularly difficult choices between employment and childcare responsibilities. Reducing this disparity in access to benefits may improve health for CSHCN and their families. PMID:23477748

Access to leave benefits for primary caregivers of children with special health care needs: a double bind.

PubMed

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

2013-01-01

Family leave benefits are a key tool that allow parents to miss work to care for their ill children. We examined whether access to benefits varies by level of childcare responsibilities among employed parents of children with special health care needs (CSHCN). We conducted telephone interviews with 3 successive cohorts of employed parents of CSHCN, randomly sampled from a California children's hospital. At Wave 1 (November 2003 to January 2004), we conducted 372 parent interviews. At Wave 2 (November 2005 to January 2006), we conducted 396 parent interviews. At Wave 3 (November 2007 to January 2008), we conducted 393 parent interviews. We pooled these samples for bivariate and multivariate regression analyses by using wave indicators and sample weights. Parents with more childcare responsibilities (primary caregivers) reported less access to sick leave/vacation (65% vs 82%, P < .001), access to paid leave outside of sick leave/vacation (41% vs 51%, P < .05), and eligibility for Family and Medical Leave Act benefits (28% vs 44%, P < .001) than secondary caregivers. Part-time employment and female gender largely explained 2 of the 3 associations between more childcare responsibilities and less access to leave benefits. Even in the context of part-time employment, however, primary caregivers were just as likely as secondary caregivers both to miss work due to their child's illness and to report being unable to miss work when they needed to. Due in part to employment and gender differences, leave benefits among parents of CSHCN are skewed away from primary caregivers and toward secondary caregivers. Thus, primary caregivers may face particularly difficult choices between employment and childcare responsibilities. Reducing this disparity in access to benefits may improve the circumstances of CSHCN and their families. Copyright © 2013 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.

Child-rearing practices of primary caregivers of HIV-infected children: An integrative review of the literature.

PubMed

Klunklin, Pimpaporn; Harrigan, Rosanne C

2002-08-01

The number of human immunodeficiency virus (HIV)-infected children has increased because of the HIV and acquired immunodeficiency syndrome epidemic. Yet little is known about the child-rearing practices of these children's primary caregivers. The purpose of this article is to describe what is known about the child-rearing practices of primary caregivers of HIV-infected children. The review covers a 10-year period from 1990 to 2000. Three electronic bibliographic databases (MEDLINE, CINAHL, and AIDSLINE) were explored. Key words used were HIV-positive children, caregivers, and child-rearing. A total of 50 papers were examined. Using the Matrix Method, each paper was evaluated according to five frames of reference: journal, purpose, sample, method, and findings. Content analysis was used to identity salient themes. Themes that emerged were: caregiver, child, and interactions or child-rearing practices. These findings affirm the parent-child interaction model generated by Kathryn E. Barnard and support this framework as a tool for investigating the relationships between these children and their caregivers. Copyright 2002, Elsevier Science (USA). All rights reserved.

Can symptom relief be provided in the home to palliative care cancer patients by the primary caregivers? An Indian study.

PubMed

Chellappan, Sheeba; Ezhilarasu, Punitha; Gnanadurai, Angela; George, Reena; Christopher, Solomon

2014-01-01

A large proportion of cancer deaths occur in the developing world, with limited resources for palliative care. Many patients dying at home experience difficult symptoms. The objective of this study was to assess the feasibility of a structured training program on symptom management along with an acute symptom management kit for primary caregivers of cancer patients receiving home care. Descriptive design was used. Thirty primary caregivers of cancer patients attending the palliative care clinic in Vellore, South India, were provided training on the administration of drugs for acute symptoms. A plastic box with partitions for drugs specific to symptom was provided. On follow-up visits, the usage of the kit, drugs used, and routes of administration were noted. A structured questionnaire with a 4-point scale was used to assess primary caregiver views and satisfaction. Of primary caregivers, 96.7% used a kit. The common medications used were morphine, metoclopramide, dexamethasone, and benzodiazepines. Seventy-three percent of primary caregivers administered subcutaneous injections at home. Hospital visits for acute symptoms reduced by 80%; 90% were satisfied with the training received; 73% stated it was not a burden to treat the patient at home. The training program and acute symptom management kit were favorably received and appropriately used by caregivers of diverse backgrounds. Rural backgrounds and illiteracy were not barriers to acceptance. Healthcare professionals should train caregivers during hospital visits, empowering them to manage acute symptoms and provide simple nursing care. This is doubly important in countries where resources are limited and palliative care facilities scarce.

An organizing framework for informal caregiver interventions: detailing caregiving activities and caregiver and care recipient outcomes to optimize evaluation efforts

PubMed Central

2011-01-01

Background Caregiver interventions may help improve the quality of informal care. Yet the lack of a systematic framework specifying the targets and outcomes of caregiver interventions hampers our ability to understand what has been studied, to evaluate existing programs, and to inform the design of future programs. Our goal was to develop an organizing framework detailing the components of the caregiving activities and the caregiver and care recipient outcomes that should be affected by an intervention. In so doing, we characterize what has been measured in the published literature to date and what should be measured in future studies to enable comparisons across interventions and across time. Methods Our data set comprises 121 reports of caregiver interventions conducted in the United States and published between 2000 and 2009. We extracted information on variables that have been examined as primary and secondary outcomes. These variables were grouped into categories, which then informed the organizing framework. We calculated the frequency with which the interventions examined each framework component to identify areas about which we have the most knowledge and under-studied areas that deserve attention in future research. Results The framework stipulates that caregiver interventions seek to change caregiving activities, which in turn affect caregiver and care recipient outcomes. The most frequently assessed variables have been caregiver psychological outcomes (especially depression and burden) and care recipient physical and health care use outcomes. Conclusions Based on the organizing framework, we make three key recommendations to guide interventions and inform research and policy. First, all intervention studies should assess quality and/or quantity of caregiving activities to help understand to what extent and how well the intervention worked. Second, intervention studies should assess a broad range of caregiver and care recipient outcomes, including

High Functioning Autism Spectrum Disorders in Adults: Consequences for Primary Caregivers Compared to Schizophrenia and Depression

ERIC Educational Resources Information Center

Grootscholten, Inge A. C.; van Wijngaarden, Bob; Kan, Cornelis C.

2018-01-01

Primary caregivers experience consequences from being in close contact to a person with autism spectrum disorder (ASD). This study used the Involvement Evaluation Questionnaire to explore the level of consequences of 104 caregivers involved with adults with High Functioning ASD (HF-ASD) and compared these with the consequences reported by…

Non-pharmacological interventions for caregivers of stroke survivors.

PubMed

Legg, Lynn A; Quinn, Terry J; Mahmood, Fahd; Weir, Christopher J; Tierney, Jayne; Stott, David J; Smith, Lorraine N; Langhorne, Peter

2011-10-05

A substantial component of care is provided to stroke survivors by informal caregivers. However, providing such care is often a new and challenging experience and has been linked to a number of adverse outcomes. A range of interventions targeted towards stroke survivors and their family or other informal caregivers have been tested in randomised controlled trials (RCTs).  To evaluate the effect of interventions targeted towards informal caregivers of stroke survivors or targeted towards informal caregivers and the care recipient (the stroke survivor). We searched the Cochrane Stroke Group Trials Register (March 2011), CENTRAL (The Cochrane Library Issue 2010, Issue 4), MEDLINE (1950 to August 2010), EMBASE (1980 to December 2010), CINAHL (1982 to August 2010), AMED (1985 to August 2010), PsycINFO (1967 to August 2010) and 11 additional databases. In an effort to identify further published, unpublished and ongoing studies, we searched conference proceedings and trials registers, scanned reference lists of relevant articles and contacted authors and researchers. There were no language restrictions. We included RCTs if they evaluated the effect of non-pharmacological interventions (compared with no care or routine care) on informal caregivers of stroke survivors. We included trials of interventions delivered to stroke survivors and informal caregivers only if the stroke survivor and informal caregiver were randomised as a dyad. We excluded studies which included stroke survivors and caregivers if the stroke survivors were the primary target of the intervention. Two review authors selected studies for inclusion, independently extracted data and assessed methodological quality. We sought original data from trialists. We categorised interventions into three groups: support and information, teaching procedural knowledge/vocational training type interventions, and psycho-educational type interventions. The primary outcome was caregivers' stress or strain. We resolved

Greater Experience of Negative Non-Target Emotions by Patients with Neurodegenerative Diseases Is Related to Lower Emotional Well-Being in Caregivers.

PubMed

Chen, Kuan-Hua; Wells, Jenna L; Otero, Marcela C; Lwi, Sandy J; Haase, Claudia M; Levenson, Robert W

2017-01-01

Behavioral symptoms in patients with neurodegenerative diseases can be particularly challenging for caregivers. Previously, we reported that patients with frontotemporal dementia (FTD) and Alzheimer's disease (AD) experienced emotions that were atypical or incongruent with a given situation (i.e., non-target emotions). We tested the hypothesis that greater experience of non-target emotions by patients is associated with lower caregiver emotional well-being. 178 patients with FTD, AD, or other neurodegenerative diseases and 35 healthy individuals watched 3 films designed to induce amusement, sadness, and disgust, and then reported their emotions during the films. Caregivers of the patients reported their own emotional well-being on the Medical Outcomes Study 36-item Short-Form Health Survey. In response to the amusement and sadness (but not disgust) films, greater experience of non-target emotions by patients was related to lower caregiver emotional well-being. These effects were specific to patients' experience of negative non-target emotions (i.e., not found for positive non-target emotions or for negative or positive target emotions). The findings reveal a previously unstudied patient behavior that is related to worse caregiver emotional well-being. Future research and clinical assessment may benefit from evaluating non-target emotions in patients. © 2017 S. Karger AG, Basel.

Predictors of depressive symptoms in primary caregivers of young children with or at risk for developmental delay.

PubMed

Feldman, M; McDonald, L; Serbin, L; Stack, D; Secco, M L; Yu, C T

2007-08-01

Despite extensive research with families raising children with or at risk for developmental delay (DD), it is not clear whether primary caregivers of these children are at increased risk for depressive symptoms. Discrepant findings in the literature may be owing to heterogeneity of child problems. More research is needed on child, parent and family variables that may increase risk for, or resilience to, caregiver depressive symptoms. Some studies have found that parental resources (e.g. social support and coping strategies) may buffer the effects of parental distress, while other studies have highlighted the role of parental self-efficacy. We examined Beck Depression Inventory (BDI) scores in 178 primary caregivers (mainly biological mothers) who had 2-year-old children with or at risk for DD owing to: (a) low birthweight, prematurity or multiple birth (n = 58), (b) other known reasons (e.g. Down syndrome, spina bifida) (n = 67), or (c) unknown reasons (n = 69). We found that 20% (n = 35) of the caregivers scored above the BDI clinical cut-off for depression. Analysis of variance revealed that caregivers with elevated BDI scores had higher child behaviour problem and escape-avoidance coping scores, and lower social support and parent self-efficacy, compared with caregivers without depressive symptoms. Caregivers with children who had DD for unknown reasons had higher BDI scores than caregivers of the other two groups of children. Regression analyses showed that child behaviour problems, escape-avoidance coping strategies and social support predicted caregiver BDI scores, but caregiver self-efficacy only did so when entered independently of social support. Only social support mediated and (marginally) moderated the relationship between child behaviour problems and caregiver depressive symptoms. These findings suggest that early intervention programmes should carefully consider the interaction of child characteristics (e.g. Diagnosis and behaviour problems

What cancer means to the patients and their primary caregivers in the family-accounted Korean context: A dyadic interpretation.

PubMed

Jeong, Ansuk; An, Ji Yeong; Park, Jong Hyock; Park, Keeho

2017-11-01

When cancer hits a family, the entire family members start to adapt to the new status. This study aimed to investigate the main issue of the family with cancer patient and their way of solving it. In-depth interviews were conducted as a qualitative research. Thirty-three participants described their experience either as cancer patients or as family caregivers. Guided by the grounded theory, we identified the main concern of the families being primary caregiver selection. The primary caregiver was determined by the conditions of the patient and the family, but the primary caregiver accepted his/her role believing no alternative was plausible in the family. The processes of the entire family have change since cancer showed their "adapting living," which was identified as the core variable. On the basis of the current study's limitations, suggestions were made for future studies in which cultural attributes are distinguished from the medical system attributes. Copyright © 2016 John Wiley & Sons, Ltd.

Primary caregivers of in-home oxygen-dependent children: predictors of stress based on characteristics, needs and social support.

PubMed

Wang, Kai-Wei K; Lin, Hung-Ching; Lee, Chin-Ting; Lee, Kuo-Sheng

2016-07-01

To identify the predictors of primary caregivers' stress in caring for in-home oxygen-dependent children by examining the association between their levels of stress, caregiver needs and social support. Increasing numbers of primary caregivers of oxygen-dependent children experience caregiving stress that warrants investigation. The study used a cross-sectional design with three psychometric scales - Modified-Parenting Stress Index, Caregiver Needs Scale and Social Support Index. The data collected during 2010-2011 were from participants who were responsible for their child's care that included oxygen therapy for ≧6 hours/day; the children's ages ranged from 3 months-16 years. Descriptive statistics and multivariable linear regression were used. A total of 104 participants (M = 34, F = 70) were recruited, with an average age of 39·7 years. The average age of the oxygen-dependent children was 6·68 years and their daily use of oxygen averaged 11·39 hours. The caregivers' overall levels of stress were scored as high and information needs were scored as the highest. The most available support from family and friends was emotional support. Informational support was mostly received from health professionals, but both instrumental and emotional support were important. Levels of stress and caregiver needs were significantly correlated. Multivariable linear regression analyses identified three risk factors predicting stress, namely, the caregiver's poor health status, the child's male gender and the caregiver's greater financial need. To support these caregivers, health professionals can maintain their health status and provide instrumental, emotional, informational and financial support. © 2016 John Wiley & Sons Ltd.

Congruence between Disabled Elders and Their Primary Caregivers

ERIC Educational Resources Information Center

Horowitz, Amy; Goodman, Caryn R.; Reinhardt, Joann P.

2004-01-01

Purpose: This study examines the extent and independent correlates of congruence between disabled elders and their caregivers on several aspects of the caregiving experience. Design and Methods: Participants were 117 visually impaired elders and their caregivers. Correlational analyses, kappa statistics, and paired t tests were used to examine the…

Primary caregivers of schizophrenia outpatients: burden and predictor variables.

PubMed

Grandón, Pamela; Jenaro, Cristina; Lemos, Serafín

2008-04-15

This article explores family burden in relation to relatives' coping strategies and social networks, as well as in relation to the patients' severity of positive and negative symptoms. Data on the severity of symptoms (Positive and Negative Syndrome Scale for Schizophrenia [PANSS]), social functioning (Social Functioning Scale [SFS]), caregivers burden (Interview on Objective and Subjective Family Burden or Entrevista de Carga Familiar Objetiva y Subjetiva [ECFOS]), coping skills (Family Coping Questionnaire [FCQ]), and social support (Social Network Questionnaire [SNQ]) were gathered from a randomized sample of 101 Chilean outpatients and their primary caregivers, mostly mothers. Low levels of burden were typically found, with the exception of moderate levels on general concerns for the ill relative. A hierarchical regression analysis with four blocks showed that clinical characteristics, such as higher frequency of relapses, more positive symptoms and lower independence-performance, together with lower self-control attributed to the patient, decrease in social interests, and less affective support, predict burden. The results support the relevance of psychoeducational interventions where families' needs are addressed.

The experience of being a grandmother who is the primary caregiver for her HIV-positive grandchild.

PubMed

Caliandro, G; Hughes, C

1998-01-01

The number of grandparents assuming care for their grandchildren is increasing, and this affects grandparents both positively and negatively. The current study builds on an earlier study of the effects of social support, stress, and level of illness on caregiving of children with acquired immune deficiency syndrome (AIDS) that identified both positive and negative effects of caregiving. To identify the lived experience of African American and Latino grandmothers as the primary caregivers for their grandchildren who are human immunodeficiency virus (HIV)-infected or have AIDS and to identify the similarities and differences between the two groups. Using Van Manen's method for hermeneutical phenomenological research, the lived experiences of 10 African American and Latino grandmothers who were the primary caregivers for their HIV-positive grandchildren were investigated. Additionally, the similarities and differences between the two groups were studied. Four themes identified were (a) upholding the primacy of the family, (b) living in the child-centered present, (c) being strong as mature women, and (d) living within a constricting environment. Twelve subthemes expanded and clarified the meaning of these themes. Although there were differences related to family structure and cultural backgrounds, the grandmothers were more alike than different.

The multidimensional burden of informal caregivers in primary malignant brain tumor.

PubMed

Bayen, Eléonore; Laigle-Donadey, Florence; Prouté, Myrtille; Hoang-Xuan, Khê; Joël, Marie-Eve; Delattre, Jean-Yves

2017-01-01

Informal caregivers (ICs) provide care and improve the quality of life of patients with malignant brain tumor. We analyze the impact of their involvement on themselves from a triple perspective. Home-dwelling patients with primary malignant brain tumor underwent a medical examination. ICs burden was evaluated by a self-administered postal questionnaire. Objective burden (Informal Care Time, ICT), subjective burden (Zarit Burden Inventory, ZBI), and financial burden (valuation of lost earnings using the Replacement and Opportunity Cost Methods, RCM, OCM) were evaluated. ICs (N = 84) were principally women (87 %) and spouses (64 %), of mean age 55 years, who assisted patients of mean age 53 years and with a mean KPS score of 61 (range = 30-90, med = 60). Subjective burden was moderate (mean ZBI = 30). Objective burden was high (mean ICT = 11.7 h/day), mostly consisting of supervision time. Higher subjective and objective burden were associated with poorer functional status (KPS) but not with a higher level of cognitive disorders in multivariate analyses. Other independent associated factors were bladder dysfunction and co-residency for objective burden and working and a poor social network for subjective burden. The 56 working ICs made work arrangements (75 %) that impacted their wages (36 %) and careers (30 %). Financial burden due to uncompensated caregiving hours for Activities of Daily Living had a mean monetary value from Є677(RCM) to Є1683(OCM) per month (i.e., ranging from Є8124 to Є20196 per year). IC burden is multidimensional. Greater provision of formal care, more IC support programs, and economic interventions targeting IC employment and finances are needed.

The role of primary caregiver vocabulary knowledge in the development of bilingual children’s vocabulary skills

PubMed Central

Buac, Milijana; Gross, Megan; Kaushanskaya, Margarita

2015-01-01

Purpose The current study examined the impact of environmental factors (SES, the percent of language exposure to English and to Spanish, and primary caregivers’ vocabulary knowledge) on bilingual children’s vocabulary skills. Method We measured vocabulary skills of 58 bilingual children between the ages of 5 and 7 who spoke Spanish as their native language and English as their second language. Data related to language environment in the home, specifically the percent of language exposure to each language and SES, were obtained from primary caregiver interviews. Primary caregivers’ vocabulary knowledge was measured directly using expressive and receptive vocabulary assessments in both languages. Results Multiple regression analyses indicated that primary caregivers’ vocabulary knowledge, the child’s percent exposure to each language, and SES were robust predictors of children’s English, but not Spanish, vocabulary skills. Conclusions These findings indicate that in the early school age, primary caregiver vocabulary skills have a stronger impact on bilingual children’s second-language than native-language vocabulary. PMID:24824882

Factors of caregiver burden and family functioning among Taiwanese family caregivers living with schizophrenia.

PubMed

Hsiao, Chiu-Yueh; Tsai, Yun-Fang

2015-06-01

To assess the degree of caregiver burden and family functioning among Taiwanese primary family caregivers of people with schizophrenia and to test its association with demographic characteristics, family demands, sense of coherence and family hardiness. Family caregiving is a great concern in mental illness. Yet, the correlates of caregiver burden and family functioning in primary family caregivers of individuals with schizophrenia still remain unclear. A cross-sectional descriptive study. A convenience sample of 137 primary family caregivers was recruited from two psychiatric outpatient clinics in Taiwan. Measures included a demographic information sheet and the Chinese versions of the Family Stressors Index, Family Strains Index, 13-item Sense of Coherence Scale, 18-item Caregiver Burden Scale, Family Hardiness Index and Family Adaptability, Partnership, Growth, Affection, and Resolve Index. Data analysis included descriptive statistics, Pearson's product-moment correlation coefficients, t-test, one-way analysis of variance and a stepwise multiple linear regression. Female caregivers, additional dependent relatives, increased family demands and decreased sense of coherence significantly increased caregiver burden, whereas siblings as caregivers reported lower degrees of burden than parental caregivers. Family caregivers with lower family demands, increased family hardiness and higher educational level had significantly enhanced family functioning. Sense of coherence was significantly correlated with family hardiness. Our findings highlighted the importance of sense of coherence and family hardiness in individual and family adaptation. Special attention needs to focus on therapeutic interventions that enhance sense of coherence and family hardiness, thereby improving the perception of burden of care and family functioning. Given the nature of family caregiving in schizophrenia, understanding of correlates of caregiver burden and family functioning would help

Caregiver burden for informal caregivers of patients with dementia: A systematic review.

PubMed

Chiao, C-Y; Wu, H-S; Hsiao, C-Y

2015-09-01

Dementia is an irreversible illness. The caregiver is expected to assume increased responsibility as the condition of the person with dementia declines. It is important to explore the factors constituting caregiver burden on the informal caregivers of people with dementia. The purpose of this article is to identify the factors constituting caregiver burden on the informal caregivers of people with dementia living in the community. A systematic review of the four databases, including PubMed, PsycINFO, CINAHL and the Cochrane Library, was carried out to access relevant articles published between 2003 and 2012. Twenty-one articles met the inclusion criteria of this study. Behavioural problems or psychological symptoms were the primary factor of the person with dementia that is associated with caregiver burden. Caregiver socio-demographical factors and psychological factors were the two primary factors of the caregiver burden. Several results of this study were based on studies that had their own limitations. Furthermore, the concept of caregiver 'burden' was not clearly defined in some of the studies; instead, the term was broadly defined. Factors of caregiver burden in regard to people with dementia living in the community were clarified in this review study. By identifying all of the factors, healthcare professionals can deliver appropriate assistance to relieve caregiver burden and improve the quality of caregiving for people with dementia. It is important to identify the factors of the burden on the caregivers of people with dementia living in the community to prevent early nursing home placement, deterioration of caregiver's health and reduce the adverse health outcomes for care recipients. A health-related policy should be formulated to help informal caregivers receive more professional assistance. Training opportunities should be provided for family caregivers to reduce the impact of caregiving on the delivery of effective care. © 2015 International Council of

[Validation of the abbreviated Zarit scales for measuring burden syndrome in the primary caregiver of an elderly patient].

PubMed

Vélez Lopera, Johana María; Berbesí Fernández, Dedsy; Cardona Arango, Doris; Segura Cardona, Angela; Ordóñez Molina, Jaime

2012-07-01

To determine which abbreviated Zarit Scale (ZS) better evaluates the burden of the caregiver of an elderly patient in Medellin, Colombia. Validation study. Primary Care setting in the city of Medellin. Primary caregiver of dependent elderly patients over 65 years old. Sensitivity, specificity, positive predictive value, and negative predictive value for the different abbreviated Zarit scales, plus performing a reliability analysis using the Cronbach Alpha coefficient. The abbreviated scales obtained a sensitivity of between 36.84 and 81.58%, specificity between 95.99 and 100%, positive predictive values between 71.05 and 100%, and negative predictive values of between 91.64 and 97.42%. The scale that better determined caregiver burden in Primary Care was the Bedard Screening scale, with a sensitivity of 81.58%, a specificity of 96.35% and positive and negative predictive values of 75.61% and 97.42%, respectively. Copyright © 2010 Elsevier España, S.L. All rights reserved.

The responsibility continuum: never primary, coresident and caregiver--heterogeneity in the African-American grandmother experience.

PubMed

Lee, Rosalyn D; Ensminger, Margaret E; LaVeist, Thomas A

2005-01-01

This article examines diversity among 542 African-American grandmothers from the Woodlawn Longitudinal Study. Women were categorized on the basis of their household composition, degree of care provided to grandchildren, and status of primary caregiver to grandchildren during lifetime. Overall, 67.7% of the sample engaged in parenting and exchange behaviors at high or moderate levels. Twenty-seven percent of the sample coresided with and provided care to grandchildren, 28% did not coreside but had been primary caregivers in the past, and 45% did not coreside and had never been primarily responsible for a grandchild. Heterogeneity was found among seven grandmother types on economic measures, life events, and grandchild characteristics. Grandmothers with earlier primary responsibility and those currently in homes of three or more generations were associated with poor outcomes. Policy and practice can be informed by additional research on status, context, and timing of assumption of responsibilities for grandchildren.

Toddlers' Emotional Reactions to Separation from Their Primary Caregivers: Successful Home--School Transition

ERIC Educational Resources Information Center

Xu, Yaoying

2006-01-01

The purpose of this study was to examine toddlers' emotional reactions to separation from their primary caregivers through the observation on a group of toddlers (18-30 months old) at a university preschool classroom. Interactional ethnography with ethnographic perspective and sociolinguistic discourse analysis was used as the theoretical…

Caregiving and Multigenerational Families.

ERIC Educational Resources Information Center

Baum, Martha; Page, Mary

1991-01-01

Examined possibility that extension of traditional family household boundaries foreshadows expanded caregiving system as family lines grow longer. Study of 25 4-generation families found that 1 primary caregiver, either spouse or daughter, generally shouldered responsibility for members in adversity. Caregiving system encompassing more than two…

The awareness of primary caregivers in South Africa of the human rights of their children with intellectual disabilities.

PubMed

Huus, K; Dada, S; Bornman, J; Lygnegård, F

2016-11-01

Besides the right to freedom, human rights can be seen as a basic requirement also for the maintenance of human dignity and the opportunity to thrive - particularly in the case of children with disabilities. It is imperative to explore primary caregivers' awareness of the human rights of their children with intellectual disabilities in view of the role they may play in either facilitating or restricting these rights. This paper explores the awareness of 219 primary caregivers of the human rights of their children with intellectual disabilities. A descriptive survey design was used with a custom-designed questionnaire that employed a deductive content analysis based on the articles of the United Nations Convention on the Rights of a Child. Comparisons were drawn between the awareness of primary caregivers from urban and those from rural areas. The majority (85.5%) of participants agreed that their child with intellectual disability had rights. Three broad kinds of right were mentioned (in descending order): provision rights, protection rights and participation rights. Participants from both urban and rural areas mentioned education (a provision right) most frequently. However, participants from urban areas were more aware of the different rights that existed than were their counterparts from rural areas. Primary caregivers in both rural and urban areas are aware of the rights of their children with disabilities, although there are significant differences between them. © 2016 John Wiley & Sons Ltd.

Caregiver education to promote appropriate use of preventive asthma medications: what is happening in primary care?

PubMed

Frey, Sean M; Fagnano, Maria; Halterman, Jill S

2016-01-01

To describe actions taken by providers at primary care visits to promote daily use of preventive asthma medication, and determine whether patient or encounter variables are associated with the receipt of asthma medication education. As part of a larger study in Rochester, NY, caregivers of children (2-12 years old) with asthma were approached before an office visit for well-child, asthma-specific or other illness care from October 2009 to January 2013. Eligibility required persistent symptoms and a prescription for an inhaled asthma controller medication. Caregivers were interviewed within two weeks to discuss the health care encounter. We identified 185 eligible children from six urban primary care offices (27% Black, 38% Hispanic, 65% Medicaid). Overall, 42% of caregivers reported a discussion of appropriate preventive medication use, fewer than 25% received an asthma action plan, and 17% reported "ideal" medication education (both discussing proper medication use and completing an asthma action plan); no differences were seen upon comparing well-child and asthma-specific visits with other visits. Well-child and asthma-specific visits together were more likely, compared with other visits, to include a recommendation for a follow-up visit (43% versus 23%, p = 0.007). No patient factors were associated with report of preventive medication education. Guideline-recommended education for caregivers about preventive-asthma medication is not occurring in the majority of primary care visits for urban children with symptomatic persistent asthma. Novel methods to deliver asthma education may be needed to promote appropriate preventive medication use and reduce asthma morbidity.

Exploring the collective hospice caregiving experience.

PubMed

Wittenberg-Lyles, Elaine; Kruse, Robin L; Oliver, Debra Parker; Demiris, George; Petroski, Greg

2014-01-01

Collective caregiving, performed by caregivers working in pairs (informal primary and secondary caregivers working together), is common in the hospice setting. Research suggests that caregiving pairs may experience different caregiver outcomes. However, little is known about how caregiving pairs differ from solo caregivers (informal primary caregivers) on outcome measures. The goal of this study was to determine whether being in a caregiver pair affected caregiver anxiety and depression and how outcomes changed over time. A mixed model analysis was used. Hospice caregivers (260 solo caregivers and 44 caregivers in 22 pairs) who participated in a larger, randomized controlled trial completed caregiver measures upon hospice admission and periodically until the death of the patient or hospice decertification. Measured were caregiver quality of life, social support, anxiety, and depression. Caregiver pairs had higher anxiety and depression scores than solo caregivers. Emotional, financial, and physical quality of life were associated with decreased depression, whereas only emotional and financial quality of life were correlated with lower levels of anxiety. Social support was associated with lower levels of depression and anxiety. Despite assumptions that social support is positively facilitated vis-a-vis collective caregiving, caregiving pairs may be at higher risk for anxiety and depression. Future research is needed to address why individuals become anxious and/or depressed when working as part of a caregiving pair.

Embedding Intervention Targets into Caregiving Routines and Other Activities of the Families Choice.

ERIC Educational Resources Information Center

Hollingshead, Lorie; Harris, Kristy; Stremel, Kathleen

This training module on embedding intervention targets into caregiving routines and other activities of the families' choice is from the Mississippi Early Education Program for Children with Multiple Disabilities, a program designed to train Individuals with Disabilities Education Act Part H service coordinators and service providers to use family…

Effects of Support on the Attitude of the Primary Caregiver of a Child with Down Syndrome.

ERIC Educational Resources Information Center

Heritage, Jeannette G.; And Others

Parents of children with mental or physical handicaps often experience overwhelming feelings of stress and anxiety. Research indicates that support for the primary caregiver can help alleviate some stressors involved in raising a child with a handicap. This study examined how level of support affects feelings of satisfaction the primary caregiver…

Depression and caregiver burden experienced by caregivers of Jordanian patients with stroke.

PubMed

Kamel, Andaleeb Abu; Bond, A Elaine; Froelicher, Erika Sivarajan

2012-04-01

Many stroke survivors will be cared for at home, primarily by their relatives. Providing care to a family member with a chronic disabling disease can be both emotionally and physically distressing for the caregivers. The purpose of this study was to investigate the relationship between patients' characteristics, duration of caregiving, daily caregiving time, caregiver's characteristics, caregiver depression and burden in caregivers of patients with stroke. A cross-sectional design was used with a convenience sample of 116 subjects. The Center of Epidemiologic Studies of Depression and the Caregiver Strain Index were used to identify caregiver depression and burden, respectively. Logistic regression analysis identified the influence of independent variables on caregiver depression and caregiver burden. Caregivers had high scores for depression and burden indices. Caregivers' health, receiving professional home health care and caregivers' burden were related to caregiver depression. Functional disabilities of patients with stroke and depression of caregivers were related to caregiver burden. To decrease caregiver depression and burden, nurses must provide caregivers with instructions for home management of patients with stroke. Development of specialized stroke home health services in Jordan that targets patients with stroke and their caregivers are recommended. © 2012 Blackwell Publishing Asia Pty Ltd.

Family caregiving or caregiving alone: who helps the helper?

PubMed

Sims-Gould, Joanie; Martin-Matthews, Anne

2007-01-01

This study advances the understanding of family caregiving by examining the relationship between adult children caregivers and their helpers. Specifically, it focuses on examining "who helps whom" and extends analyses beyond the dyadic focus of caregiving in later life. The focus on helping and caregiving addresses the variety of contributions and responsibilities involving not only the caregiver who was the target respondent in this research, but also others identified as helpers in the provision of care. The data for this study are derived from the Work and Eldercare Research group of CARNET: The Canadian Aging Research Network. Secondary analysis of CARNET data focuses on data collected from 250 individuals with significant caregiving responsibilities for at least one older person. Findings extend Kahn & Antonucci's convoys of social support model (1981) and Cantor's model of social care (1991) by disentangling some of the dimensions of helping and caregiving, such as the distinction between direct and assistive help.

Psychosocial factors of caregiver burden in child caregivers: results from the new national study of caregiving.

PubMed

Cohen, Steven A; Cook, Sarah; Kelley, Lauren; Sando, Trisha; Bell, Allison E

2015-08-07

Over 50 million informal caregivers in the United States provide care to an aging adult, saving the economy hundreds of billions of dollars annually from costly hospitalization or institutionalization. Despite the benefits associated with caregiving, caregiver stress can lead to negative physical and mental health consequences, or "caregiver burden". Given these potential negative consequences of caregiver burden, it is important not only to understand the multidimensional components of burden but to also understand the experience from the perspective of the caregiver themselves. Therefore, the objectives of our study are to use exploratory factor analysis to obtain a set of latent factors among a subset of caregiver burden questions identified in previous studies and assess their reliability. All data was obtained from the 2011 National Study of Caregiving (NSOC). Exploratory factor analysis (EFA) was performed to identify a set of latent factors assessing four domains of caregiver burden in "child caregivers": those informal caregivers who provide care to a parent or stepparent. Sensitivity analysis was also conducted by repeating the EFA on demographic subsets of caregivers. After multiple factor analyses, four consistent caregiver burden factors emerged from the 23 questions analyzed: Negative emotional, positive emotional, social, and financial. Reliability of each factor varied, and was strongest for the positive emotional domain for caregiver burden. These domains were generally consistent across demographic subsets of informal caregivers. These results provide researchers a more comprehensive understanding of caregiver burden to target interventions to protect caregiver health and maintain this vital component of the US health care system.

Exploring Spirituality in Family Caregivers of Patients With Primary Malignant Brain Tumors Across the Disease Trajectory

PubMed Central

Newberry, Alyssa G.; Jean Choi, Chien-Wen; Donovan, Heidi S.; Schulz, Richard; Bender, Catherine; Given, Barbara; Sherwood, Paula

2013-01-01

Purpose/Objectives To determine whether the perceived level of spirituality in family caregivers of patients with primary malignant brain tumors (PMBTs) changes across the disease trajectory. Design Ongoing descriptive, longitudinal study. Setting Southwestern Pennsylvania. Sample 50 family caregivers of patients with PMBT. Methods Caregivers and care recipients were recruited at time of diagnosis. Participants were interviewed at two subse-quent time points, four and eight months following diagnosis. Main Research Variables Care recipients’ symptoms, neuro-psychologic status, and physical function, as well as caregiver social support. Findings Results showed no significant difference in spirituality scores reported at baseline and eight months (p = 0.8), suggesting that spirituality may be a stable trait across the disease trajectory. Conclusions Spirituality remains relatively stable along the course of the disease trajectory. Reports of caregiver depressive symptoms and anxiety were lower when paired with higher reports of spirituality. Implications for Nursing Clinicians can better identify caregivers at risk for negative outcomes by identifying those who report lower levels of spirituality. Future interventions should focus on the development and implementation of interventions that provide protective buffers such as increased social support. Knowledge Translation Spirituality is a relatively stable trait. High levels of spirituality can serve as a protective buffer from negative mental health outcomes. Caregivers with low levels of spirituality may be at risk for greater levels of burden, anxiety, and stress. PMID:23615145

Breadwinning Moms, Caregiving Dads: Double Standard in Social Judgments of Gender Norm Violators

ERIC Educational Resources Information Center

Gaunt, Ruth

2013-01-01

This study explores the role of gender ideologies in moderating social judgments of gender norm violators. Three hundred and eleven participants evaluated a male or a female target who was either a primary breadwinner or a primary caregiver. Attributions of personal traits, moral emotions, and marital emotions were examined. Results showed that…

Relationship Between Caregiving Burden and Anger Level in Primary Caregivers of Individuals With Chronic Mental Illness.

PubMed

Bademli, Kerime; Lök, Neslihan; Kılıc, Ayten Kaya

2017-06-01

The objective of this study was answer to the question: to what extent are the anger of the caregivers of patients diagnosed with schizophrenia and their perceived level of burden are related? The study is a descriptive and correlational study. The information form prepared by the researchers which questions the socio-demographic information of the individuals along with the "Caregiving Burden Inventory" which examines the burden of the caregiver as well as "Trait Anger and Anger Expression Style Scale (TAAES)" which determines the anger levels of the caregivers were used. The caregiving burdens of the caregivers according to the score averages were determined as 11.88±9.78 for time and dependency burden, 11.93±8.46 for developmental burden, 8.47±6.63 for physical burden, 5.61±5.26 for social burden, 6.29±5.25 for emotional burden and the total burden score was determined as 44.19±26.75. According to the trait anger and anger expression style scale score averages; trait anger was determined as 15.12±5.95, anger expression as 9.70±3.43, anger-in as 15.22±4.02, anger control as 28.05±5.57 and anger total score average as 68.11±9.97. According to the results obtained from this study, caregivers of schizophrenia patients experience developmental, physical, social and emotional burdens in addition to trait anger. The caregivers of schizophrenia patients need knowledge and support in order to control the burden and the anger they experience during the caregiving process. Copyright © 2016 Elsevier Inc. All rights reserved.

Children's adjustment following Hurricane Katrina: the role of primary caregivers.

PubMed

Gil-Rivas, Virginia; Kilmer, Ryan P

2013-01-01

Hurricane Katrina severely disrupted the lives of many children and families in the central Gulf Coast of the United States. Face-to-face interviews with child-caregiver dyads were conducted at approximately 1 year posthurricane (T1) and 6-10 months later (T2). The contribution of several factors-caregiver's self-reported symptomatology and coping advice and child perceptions of caregiver distress, unavailability, warmth, and caregiver-child conflict-to child-reported posttraumatic stress symptoms (PTSS) and depressive symptoms was examined. Findings provide partial support for the importance of the caregiving context to children's adjustment. Specifically, higher levels of caregiver-child conflict at T1 were associated with more PTSS at T2, controlling for baseline symptoms. In contrast, higher levels of caregiver education were negatively related to child PTSS at T2. After adjusting for objective hurricane exposure and symptoms at T1, none of the caregiving variables was related to child-reported depressive symptoms at T2. The implications of these findings for efforts to promote children's adjustment after disaster are discussed. © 2013 American Orthopsychiatric Association.

Onset aging conditions of adults with an intellectual disability associated with primary caregiver depression.

PubMed

Lin, Lan-Ping; Hsu, Shang-Wei; Kuo, Meng-Ting; Wu, Jia-Lin; Chu, Cordia; Lin, Jin-Ding

2014-03-01

Caregivers of adults with an intellectual disability experience depressive symptoms, but the aging factors of the care recipients associated with the depressive symptoms are unknown. The objective of this study was to analyze the onset aging conditions of adults with an intellectual disability that associated with the depression scores of their primary caregivers. A cross-sectional survey was administered to gather information from 455 caregivers of adults with an intellectual disability about their symptoms of depression which assessed by a 9-item Patient Health Questionnaire (PHQ-9). The 12 aging conditions of adults with an intellectual disability include physical and mental health. The results indicate that 78% of adults with an intellectual disability demonstrate aging conditions. Physical conditions associated with aging include hearing decline (66.3%), vision decline (63.6%), incontinence (44%), articulation and bone degeneration (57.9%), teeth loss (80.4), physical strength decline (81.2%), sense of taste and smell decline (52.8%), and accompanied chronic illnesses (74.6%). Mental conditions associated with aging include memory loss (77%), language ability deterioration (74.4%), poor sleep quality (74.2%), and easy onset of depression and sadness (50.3%). Aging conditions of adults with an intellectual disability (p<0.001) was one factor that significantly affected the presence of depressive symptom among caregivers after controlling demographic characteristics. Particularly, poor sleep quality of adults with an intellectual disability (yes vs. no, OR=3.807, p=0.002) was statistically correlated to the occurrence of significant depressive symptoms among their caregivers. This study suggests that the authorities should reorient community services and future policies toward the needs of family caregivers to decrease the burdens associated with caregiving. Copyright © 2014 Elsevier Ltd. All rights reserved.

Caring for seniors living with dementia means caring for their caregivers too.

PubMed

Poirier, Annie; Voyer, Philippe; Légaré, France; Morin, Michèle; Witteman, Holly O; Kröger, Edeltraut; Martineau, Bernard; Rodríguez, Charo; Giguere, Anik Mc

2018-01-22

To improve the care of seniors living with dementia, current initiatives typically target better identification and treatment of the patient. Our recent survey, however, shows we should also focus more on the needs of the informal caregivers who care for this population in primary care settings. This three-round Delphi survey sought caregivers' views on the most frequent and difficult decisions that seniors with dementia, their informal caregivers, and health care providers face in primary care settings in the province of Quebec. Respondents consisted of 31 health care professionals, informal caregivers, managers, representatives of community-based organizations devoted to these seniors, and clinical researchers involved in the organization of care or services to seniors with dementia. When we asked respondents to rank 27 common but difficult decisions involving benefit/harm trade-offs, 83% ranked the decision to choose an option to reduce the burden of informal caregivers as one of the five most important decisions. Choosing a treatment to manage agitation, aggression or psychotic symptoms followed closely, with 79% of respondents selecting it as one of the five most important decisions. Our results point to the importance of attending to the needs of informal caregivers and improving the management of behavioural and psychological symptoms of dementia.

Family caregiving challenges in advanced colorectal cancer: patient and caregiver perspectives.

PubMed

Mosher, Catherine E; Adams, Rebecca N; Helft, Paul R; O'Neil, Bert H; Shahda, Safi; Rattray, Nicholas A; Champion, Victoria L

2016-05-01

Family caregivers of advanced colorectal cancer patients may be at increased risk for psychological distress. Yet their key challenges in coping with the patient's illness are not well understood. Soliciting both patient and caregiver perspectives on these challenges would broaden our understanding of the caregiving experience. Thus, the purpose of this research was to identify caregivers' key challenges in coping with their family member's advanced colorectal cancer from the perspective of patients and caregivers. Individual, semi-structured qualitative interviews were conducted with 23 advanced colorectal cancer patients and 23 primary family caregivers. Interview data were analyzed via thematic analysis. In nearly all cases, patient and caregiver reports of the caregiver's key challenge were discrepant. Across patient and caregiver reports, caregivers' key challenges included processing emotions surrounding the patient's initial diagnosis or recurrence and addressing the patient's practical and emotional needs. Other challenges included coping with continual uncertainty regarding the patient's potential functional decline and prognosis and observing the patient suffer from various physical symptoms. Findings suggest that eliciting the perspectives of both patients and caregivers regarding caregivers' challenges provides a more comprehensive understanding of their experience. Results also point to the need to assist caregivers with the emotional and practical aspects of caregiving.

Baby boomer caregiver and dementia caregiving: findings from the National Study of Caregiving

PubMed Central

Moon, Heehyul; Dilworth-Anderson, Peggye

2015-01-01

Background: previous studies have well documented the characteristics of baby boomers but less is known about the experiences of boomer caregivers (CGs) of people with dementia. Objective: the purpose of this study was to compare the characteristics of boomer CGs of people with dementia with those of boomer CGs for people without dementia and to ascertain factors associated with outcomes. Design: we selected baby boomer CGs from the National Study of Caregiving (NSOC) with 650 primary boomer CGs (138 CGs of people with dementia and 512 CGs of people without dementia). Methods: the Stress Process Model (SPM) was used to examine the effects of resources (the use of paid help and informal support) and stressors (primary: level of CG care activities and interrupted sleep; secondary: strain of caregiving on work, other care and social activities) on CGs' down, depressed or hopeless feelings and self-perceived general health. T-tests and chi-square tests were used to compare SPM domain differences and ordinary least-square multiple regression analysis was used to investigate predictors of CGs' outcomes. Results: high blood pressure and arthritis were the most prevalent chronic diseases in both groups. Boomer CGs of people with dementia reported providing more help with daily activities, higher level of caregiving and social activity conflict, experiencing more interrupted sleep and more down, depressed or hopeless feelings than CGs of people without dementia. Different factors predicted boomer CGs' outcomes. Conclusion: the current results yield important information about the considerable differences between two baby boomer CG groups within the caregiving experiences. The findings highlight the need to provide tailored interventions to boomer CGs to help them cope with caregiving stress to improve their physical and mental health. PMID:25359299

‘I felt pain. Deep pain…’: Experiences of primary caregivers of stroke survivors with aphasia in a South African township

PubMed Central

2018-01-01

Background Aphasia is an acquired impairment in language and in the cognitive processes that underlie language. Aphasia affects the quality of life of the person with aphasia (PWA) and his or her families in various ways in diverse contexts and cultures. It is therefore important that speech language therapists understand how different contextual and cultural factors may mediate experiences. Purpose The aim of the study was to describe the caregiving experience of female caregivers of PWA residing in Tembisa, a township situated in the east of Johannesburg. Method Qualitative, semi-structured interviews were conducted with primary caregivers of PWA. Purposive sampling was used to recruit 14 primary caregivers of PWA who were daughters, daughters-in-law or wives of the PWA. The interviews were conducted in participants’ first language and analysed by the researcher, who is proficient in isiZulu. Data were analysed according to the principles of thematic analysis. Results Findings indicated that caregivers are unfamiliar with aphasia and the support available to them. Participants experienced frustration and found communication to be challenging owing to their lack of communication strategies. The participants’ experiences reflected their context-specific experiences, such as feminisation of caregiving, barriers to healthcare, the influence of low health literacy and contextual perspectives on stroke and aphasia. Conclusions Contextual factors of caregivers in Tembisa have an influence on the experiences between caregivers and PWA, the feelings of individuals and families and health-seeking behaviours of individuals and families. PMID:29535917

Caregiving burden and psychological distress in Chinese spousal caregivers: gender difference in the moderating role of positive aspects of caregiving.

PubMed

Wong, Daniel Fu Keung; Ng, Ting Kin; Zhuang, Xiao Yu

2018-05-21

This study endeavors to advance the current literature by examining the gender differences in the caregiving experiences and the stress-buffering role of positive aspects of caregiving (PAC) among Chinese spousal caregivers of frail elders in Hong Kong. Forty-nine husband caregivers and 121 wife caregivers of frail elders in Hong Kong (N = 170) responded to the Positive Aspects of Caregiving (PAC) scale, the Zarit Burden Interview (ZBI), the 21-item Depression, Anxiety, and Stress Scales (DASS-21), and demographic questions. These spousal caregivers were diverse in age, and their care receivers were diverse in terms of age and health condition. As predicted, there were significant gender differences in the moderating effects of PAC on the relationships of caregiving burden to depression, anxiety, and overall psychological distress. While PAC significantly buffered the effects of caregiving burden on depression, anxiety, and overall psychological distress for wife caregivers, the moderating effects of PAC were not significant for husband caregivers. Unexpectedly, wife caregivers reported lower PAC, higher caregiving burden, and higher psychological distress. As these findings suggest that PAC is lower but more beneficial for Chinese wife caregivers than Chinese husband caregivers, helping professionals are recommended to use strengths-based interventions that target PAC when working with Chinese wife caregivers.

A service user co-facilitated intervention to reduce mental illness stigma among primary healthcare workers: Utilizing perspectives of family members and caregivers.

PubMed

Rai, Sauharda; Gurung, Dristy; Kaiser, Bonnie N; Sikkema, Kathleen J; Dhakal, Manoj; Bhardwaj, Anvita; Tergesen, Cori; Kohrt, Brandon A

2018-06-01

Service users' involvement as cofacilitators of mental health trainings is a nascent endeavor in low- and middle-income countries, and the role of families on service user participation in trainings has received limited attention. This study examined how caregivers perceive and facilitate service user's involvement in an antistigma program that was added to mental health Gap Action Program (mhGAP) trainings for primary care workers in Nepal. Service users were trained as cofacilitators for antistigma and mhGAP trainings delivered to primary care workers through the REducing Stigma among HealthcAre ProvidErs (RESHAPE) program. Key informant interviews (n = 17) were conducted with caregivers and service users in RESHAPE. Five themes emerged: (a) Caregivers' perceived benefits of service user involvement included reduced caregiver burden, learning new skills, and opportunities to develop support groups. (b) Caregivers' fear of worsening stigma impeded RESHAPE participation. (c) Lack of trust between caregivers and service users jeopardized participation, but it could be mitigated through family engagement with health workers. (d) Orientation provided to caregivers regarding RESHAPE needed greater attention, and when information was provided, it contributed to stigma reduction in families. (e) Time management impacted caregivers' ability to facilitate service user participation. Engagement with families allows for greater identification of motivational factors and barriers impacting optimal program performance. Caregiver involvement in all program elements should be considered best practice for service user-facilitated antistigma initiatives, and service users reluctant to include caregivers should be provided with health staff support to address barriers to including family. (PsycINFO Database Record (c) 2018 APA, all rights reserved).

Coping and emotional discomfort in primary caregivers of cancer patients.

PubMed

Pérez-Sánchez, Ivonne Nalliely; Rascón-Gasca, María Luisa; Villafaña-Tello, José de Jesús Salvador

2014-01-01

To assess the psychometric properties of the Carer's Assessment of Managing Index. To compare coping styles in caregivers of patients with terminal cancer (CPTC) and caregivers of patients on oncologic treatment (CPOT). To revise the association between coping styles, socio-demographic variables, and emotional discomfort in caregivers. A cross-sectional and correlational study was conducted, in which 133 caregivers, 59 CPOT and 74 CPTC, were interviewed. Emotional discomfort (depression, anxiety, caregiver's burden) and coping styles were measured. The instrument was defined by three factors (alternate perception of events, active coping, and emotional regulation), with an internal consistency of α = 0.78. The alternate perception of events was the only coping style with statistically significant difference between CPOT and CPTC, and CPOT score higher in this regard. Different coping styles allow for more accurate prediction of emotional discomfort in CPTC, which showed more symptoms of anxiety, depression, caregiver's burden and physical illness. The study found a high occurrence of behaviors such as crying, screaming, smoking, anxiety eating and alcohol consumption in both CPOT and CPTC, all of which related to intense emotional discomfort. Active coping scores were higher when the caregivers had social support and a higher level of education (bachelor's degree or postgraduate studies). Active coping scores went down when different aspects of the caregiver's life were affected, when physical or psychological symptoms were present, and when the caregivers had more time in their role.

Physical disability contributes to caregiver stress in dementia caregivers.

PubMed

Bruce, David G; Paley, Glenys A; Nichols, Pamela; Roberts, David; Underwood, Peter J; Schaper, Frank

2005-03-01

Previous findings of studies on the impact of physical illness on caregiver health have been inconsistent. The authors wanted to determine whether physical disability, as determined by the SF-12 survey that provides information on both physical and mental health problems, contributes to caregiver stress. The authors interviewed 91 primary caregivers (aged 38-85 years) of persons with dementia who had been referred by their family physicians for the first time for formal support services or memory evaluation. Caregivers completed the SF-12 version of the Medical Outcomes Study Short Form Health Survey that generates Mental Component Summary (MCS) and Physical Component Summary (PCS) scores and reported on caregiver stress and concurrent medical conditions and medications. Most caregivers reported stress (76.9%), having medical conditions (72.4%), or taking medications (67%). The MCS but not the PCS scores were significantly lower than community norms, indicating an excess of disability due to mental health problems. Nevertheless, 40.7% had PCS scores indicating some degree of physical disability. Using multiple logistic regression analysis, PCS scores but not the presence of medical problems were independently associated with caregiver stress. Chronic disability as assessed by SF-12 PCS scores is independently associated with caregiver stress. These data suggest that caregivers of persons with dementia should be assessed for disabling physical conditions and mental health problems. In addition, reducing the impact of physical disability could ameliorate caregiver stress.

Schizophrenia in Malaysian families: A study on factors associated with quality of life of primary family caregivers

PubMed Central

2011-01-01

Background Schizophrenia is a chronic illness which brings detrimental effects in the caregivers' health. This study was aimed at highlighting the socio-demographic, clinical and psychosocial factors associated with the subjective Quality of Life (QOL) of Malaysian of primary family caregivers of subjects with schizophrenia attending an urban tertiary care outpatient clinic in Malaysia. Methods A cross-sectional study was performed to study patient, caregiver and illness factors associated with the QOL among 117 individuals involved with caregiving for schizophrenia patients. The study used WHOQOL-BREF to assess caregivers' QOL and Brief Psychiatric Rating Scale (BPRS) to assess the severity of patients' symptoms. Social Readjustment Rating Scale (SRRS) assessed the stress level due to life events. Results The mean scores of WHOQOL-BREF in physical, psychological, social and environmental domains were 66.62 (14.36), 61.32 (15.52), 62.77 (17.33), 64.02 (14.86) consecutively. From multiple regression analysis, factors found to be significantly associated with higher QOL were higher educational level among caregivers in social and environmental domains; caregivers not having medical problem/s in physical and psychological domains; later onset and longer illness duration of illness in social domains; patients not attending day care program in environmental domain; lower BPRS score in physical and environmental domains. SRRS score of caregivers was also found to have a significant negative correlation with QOL in environmental and psychological domains. Other factors were not significantly associated with QOL. Conclusion Caregivers with more social advantages such as higher educational level and physically healthier and dealing with less severe illness had significantly higher QOL in various aspects. Supporting the caregivers in some of these modifiable factors in clinical practice is important to achieve their higher level QOL. PMID:21651770

Explanatory models and distress in primary caregivers of patients with acute psychotic presentations: A study from South India.

PubMed

Joy, Deepa S; Manoranjitham, S D; Samuel, P; Jacob, K S

2017-11-01

Emotional distress among caregivers of people with mental illness is common, changes overtime and requires appropriate coping strategies to prevent long-term disability. Explanatory models, which underpin understanding of disease and illness, are crucial to coping. To study the association of explanatory models and distress among caregivers of people with acute psychotic illness. A total of 60 consecutive patients and their primary caregivers who presented to the Department of Psychiatry, Christian Medical College, Vellore, were recruited for the study. Positive and Negative Syndrome Scale (PANSS), Short Explanatory Model Interview (SEMI) and the General Health Questionnaire-12 (GHQ-12) were used to assess severity of psychosis, explanatory models of illness and emotional distress. Standard bivariate and multivariable statistics were employed. Majority of the caregivers simultaneously held multiple models of illness, which included medical and non-medical perspectives. The GHQ-12 score were significantly lower in people who held multiple explanatory models of illness when compared to the caregivers who believed single explanations. Explanatory models affect coping in caregivers of patients with acute psychotic presentations. There is a need to have a broad-based approach to recovery and care.

Projecting the effects of long-term care policy on the labor market participation of primary informal family caregivers of elderly with disability: insights from a dynamic simulation model.

PubMed

Ansah, John P; Matchar, David B; Malhotra, Rahul; Love, Sean R; Liu, Chang; Do, Young

2016-03-23

Using Singapore as a case study, this paper aims to understand the effects of the current long-term care policy and various alternative policy options on the labor market participation of primary informal family caregivers of elderly with disability. A model of the long-term care system in Singapore was developed using System Dynamics methodology. Under the current long-term care policy, by 2030, 6.9 percent of primary informal family caregivers (0.34 percent of the domestic labor supply) are expected to withdraw from the labor market. Alternative policy options reduce primary informal family caregiver labor market withdrawal; however, the number of workers required to scale up long-term care services is greater than the number of caregivers who can be expected to return to the labor market. Policymakers may face a dilemma between admitting more foreign workers to provide long-term care services and depending on primary informal family caregivers.

Feasibility and Preliminary Effects of an Intervention Targeting Schema Development for Caregivers of Newly Admitted Hospice Patients

PubMed Central

Mazurek Melnyk, Bernadette

2013-01-01

Abstract Background The transition to hospice care is a stressful experience for caregivers, who report high anxiety, unpreparedness, and lack of confidence. These sequelae are likely explained by the lack of an accurate cognitive schema, not knowing what to expect or how to help their loved one. Few interventions exist for this population and most do not measure preparedness, confidence, and anxiety using a schema building a conceptual framework for a new experience. Objective The purpose of this study was to test the feasibility and preliminary effects of an intervention program, Education and Skill building Intervention for Caregivers of Hospice patients (ESI-CH), using an innovative conceptual design that targets cognitive schema development and basic skill building for caregivers of loved ones newly admitted to hospice services. Design A pre-experimental one-group pre- and post-test study design was used. Eighteen caregivers caring for loved ones in their homes were recruited and twelve completed the pilot study. Depression, anxiety, activity restriction, preparedness, and beliefs/confidence were measured. Results Caregivers reported increased preparedness, more helpful beliefs, and more confidence about their ability to care for their loved one. Preliminary trends suggested decreased anxiety levels for the intervention group. Caregivers who completed the intervention program rated the program very good or excellent, thought the information was helpful and timely, and would recommend it to friends. Conclusions Results show promise that the ESI-CH program may assist as an evidence-based program to support caregivers in their role as a caregiver to a newly admitted hospice patient. PMID:23384244

Multimedia material about velopharynx and primary palatoplasty for orientation of caregivers of children with cleft lip and palate.

PubMed

Costa, Tarcila Lima da; Souza, Olivia Mesquita Vieira de; Carneiro, Homero Aferri; Chiquito Netto, Cristianne; Pegoraro-Krook, Maria Inês; Dutka, Jeniffer de Cássia Rillo

2016-01-01

The objective of this study was to describe the process of elaboration and evaluation of multimedia material for caregivers about velopharynx, speech, and primary palatoplasty in babies with cleft lip and palate. The elaboration of the material involved an interdisciplinary relationship between the fields of Speech Language Pathology and Audiology, Dentistry and Arts. The definition and execution of the following activities were based on the principles of art education involving the following: characterization of audience, characterization of content, identification and elaboration of illustrations, characterization of educational approach, elaboration of text and narratives, definition of audiovisual sequence, and video preparation. The material was evaluated with the participation of 41 caregivers of patients with cleft lip and palate involving the comparison between acquired knowledge using an evaluation script applied before and after presenting the material. An increase was observed in correct responses regarding the role of velopharynx and the importance of primary palatoplasty for speech. The multimedia was effective in optimizing the knowledge of caregivers, suggesting the importance of such material during orientation.

Caregiver negative affect is a primary determinant of caregiver report of pediatric asthma quality of life.

PubMed

Price, Marcella R; Bratton, Donna L; Klinnert, Mary D

2002-12-01

Quality of life has increased in popularity as an outcome measure in health research. However, the measurement of quality of life has been questioned on methodologic grounds, as it often shows little association with objective measures of disease status. For this report we studied the determinants of pediatric asthma caregiver report of quality of life and its relationship to disease burden. Ninety-eight children who were admitted to a Pediatric Day Program for an asthma evaluation were enrolled in an outcome study. A complete set of medical records for the 2-year period before and after the admission was collected and systematically coded for health care utilization. Using the Pediatric Asthma Caregiver's Quality of Life Questionnaire, data were collected at baseline, discharge, and year after the admission. Caregiver negative affect (anxiety and depression), measured with the Brief Symptom Inventory, was also collected at baseline and discharge. Caregiver report of quality of life was unrelated to health care utilization at baseline but instead was significantly related to baseline caregiver negative affect. A significant relationship between health care utilization and quality of life was present at followup. The Emotional Function scale from the quality of life measure can account for most of the relationship between quality of life and negative affect. Caregiver affect may have a considerable influence on report of quality of life. Understanding the individual characteristics of the respondent is important when using a quality of life instrument as an outcome measure.

Contribution of Benson's Relaxation Technique and Brief Psycho-Educational Intervention on Quality of Life of Primary Caregivers of Iranian Children with Chronic Diseases.

PubMed

Mowla, Forough; Khanjari, Sedigheh; Inanlou, Mehrnoush

Chronic diseases leave a significant effect on not only the afflicted children but also their parents. Chronic diseases in children may also influence their parents' or primary caregivers' quality of life (QoL). To determine the effectiveness of a Brief Psycho-educational Intervention (BPI) and Benson's Relaxation Technique (BRT) on the QoL of primary caregivers of children with chronic diseases. The present quasi-experimental pre-test post-test design was conducted on 100 parents with children who had one chronic disease (50 in each of the control and intervention groups) and were admitted to two state-run pediatric hospitals in Tehran, Iran in 2014. The primary caregivers' QoL was assessed using the SF-36 questionnaire before (T1) and four weeks after the intervention (T2). The training was done in four 60-70minute sessions over one week with a 4-week follow-up. Paired t-test, independent t-test, chi-square and Fisher's exact tests were used to analyze the data. On average, large effect sizes (ES≥0.80) were observed after interventions in SF-36 subscales that measured the effect of emotional roles. Small (0.20-0.49) to moderate (0.50-0.79) ESs were found in subscales measuring physical functioning, physical-role, bodily pain, vitality, social functioning and mental health. General health scores remained relatively unchanged at T2. These results suggested that BPI and BRT were effective strategies to improve the QoL of primary caregivers. Furthermore, interventions with low cost, and good safety and outcome could improve the QoL of primary caregivers of children with chronic diseases. Copyright © 2017 Elsevier Inc. All rights reserved.

Positive aspects of caregiving and its correlates in caregivers of schizophrenia: a study from north India.

PubMed

Kate, N; Grover, S; Kulhara, P; Nehra, R

2013-06-01

OBJECTIVE. To study the positive aspects of caregiving and its correlates in primary caregivers of patients with schizophrenia. METHODS. A total of 100 patients with schizophrenia and their primary caregivers were evaluated. Regarding the caregivers, their positive aspects of caregiving were assessed on the Scale for Positive Aspects of Caregiving Experience (SPACE). To examine the correlates of positive aspects of caregiving, they were also assessed on the Family Burden Interview (FBI) Schedule, the Involvement Evaluation Questionnaire (IEQ), coping checklist, the Social Support Questionnaire, the World Health Organization Quality of Life-BREF (Hindi version), the WHO Quality of Life-Spirituality, Religiousness and Personal Beliefs Scale, as well as the General Health Questionnaire-12. The patients were assessed on the Positive and Negative Syndrome Scale (PANSS) and the Global Assessment of Functioning Scale. RESULTS. On the SPACE, the highest mean score was seen in the domain of motivation for the caregiving role (2.7), followed by that of caregiver satisfaction (2.4) and caregiver gains (2.3). The mean score was least for the domain of self-esteem and social aspect of caring (1.9). The SPACE domain of caregiver satisfaction correlated negatively with many aspects of burden as assessed by FBI Schedule and coping as assessed by the coping checklist; whereas the self-esteem and social aspect of caring domain correlated positively with worrying-urging II domain and the total IEQ score. No significant correlations between the SPACE and socio-demographics as well as most of the clinical variables were noted. Motivation for the caregiving had a positive correlation with the PANSS negative symptom scale. Multiple correlations were found between the SPACE and quality of life, suggesting that higher positive caregiving experience was associated with better quality of life in caregivers. CONCLUSION. Caregivers of patients with schizophrenia do enjoy positive aspects of

Associations between child disabilities and caregiver discipline and violence in low- and middle-income countries.

PubMed

Hendricks, Charlene; Lansford, Jennifer E; Deater-Deckard, Kirby; Bornstein, Marc H

2014-01-01

Using nationally representative samples of 45,964 two- to nine-year-old children and their primary caregivers in 17 developing countries, this study examined the relations between children's cognitive, language, sensory, and motor disabilities and caregivers' use of discipline and violence. Primary caregivers reported on their child's disabilities and whether they or anyone in their household had used nonviolent discipline, psychological aggression, and physical violence toward the target child and believed that using corporal punishment is necessary. Logistic regression analyses supported the hypothesis that children with disabilities are treated more harshly than children without disabilities. The findings suggest that policies and interventions are needed to work toward the United Nations' goals of ensuring that children with disabilities are protected from abuse and violence. © 2013 The Authors. Child Development © 2013 Society for Research in Child Development, Inc.

Mental health of primary family caregivers with children with intellectual disability who receive a home care programme.

PubMed

Shu, B-C; Lung, F-W; Huang, C

2002-03-01

The aims of the present study were to describe the change in mental health over time in a group of family caregivers with a child with intellectual disability (ID) and to explore the effect of a home care service on the psychological well-being of the caregiver. The authors identified children with ID who received home care services in the southern part of Taiwan. A total of 46 primary family caregivers (age range = 21-65 years) were recruited for the present study. The study design was a quasi-experimental follow-up analysis. The children with ID and their families regularly received home-based care. The 12-item version of the Chinese Health Questionnaire (CHQ) was used to evaluate the subjects' mental health at three time points: (1) baseline, (2) 3 months and (3) 9 months. The validity and reliability of the CHQ have been tested in Taiwan. The Generalized Estimating Equation was used to conduct longitudinal data analyses. The authors found that the family caregivers showed a significant improvement in their mental health by month 9. The preliminary findings of this study accredit the effect of home care services and suggest that home care services are necessary for family caregivers.

Systematic Review of Interventions to Improve the Provision of Information for Adults with Primary Brain Tumors and Their Caregivers

PubMed Central

Langbecker, Danette; Janda, Monika

2014-01-01

Background: Adults with primary brain tumors and their caregivers have significant information needs. This review assessed the effect of interventions to improve information provision for adult primary brain tumor patients and/or their caregivers. Methods: We included randomized or non-randomized trials testing educational interventions that had outcomes of information provision, knowledge, understanding, recall, or satisfaction with the intervention, for adults diagnosed with primary brain tumors and/or their family or caregivers. PubMed, MEDLINE, EMBASE, and Cochrane Reviews databases were searched for studies published between 1980 and June 2014. Results: Two randomized controlled, 1 non-randomized controlled, and 10 single group pre–post trials enrolled more than 411 participants. Five group, four practice/process change, and four individual interventions assessed satisfaction (12 studies), knowledge (4 studies), and information provision (2 studies). Nine studies reported high rates of satisfaction. Three studies showed statistically significant improvements over time in knowledge and two showed greater information was provided to intervention than control group participants, although statistical testing was not performed. Discussion: The trials assessed intermediate outcomes such as satisfaction, and only 4/13 reported on knowledge improvements. Few trials had a randomized controlled design and risk of bias was either evident or could not be assessed in most domains. PMID:25667919

Healthcare use and cost in dementia caregivers: Longitudinal results from the Predictors Caregiver Study

PubMed Central

Zhu, Carolyn W.; Scarmeas, Nikolaos; Ornstein, Katherine; Albert, Marilyn; Brandt, Jason; Blacker, Deborah; Sano, Mary; Stern, Yaakov

2014-01-01

OBJECTIVE: To examine the effects of caregiver and patient characteristics on caregivers’ medical care use and cost. METHODS: 147 caregiver/patient dyads were followed annually for 6 years in 3 academic AD centers in the US. Logistic, negative binomial, and generalized linear mixed models were used to examine overall effects of caregiver/patient characteristics on caregivers’ hospitalizations, doctor visits, outpatient tests and procedures, and prescription and over-the-counter medications. RESULTS: Patients’ comorbid conditions and dependence were associated with increased healthcare use and costs of caregivers. Increases in caregiver depressive symptoms are associated with increases in multiple domains of caregivers’ healthcare use and costs. DISCUSSION: Findings suggest that we should expand our focus on dementia patients to include family caregivers to obtain a fuller picture of effects of caregiving. Primary care providers should integrate caregivers’ needs in healthcare planning and delivery. Clinical interventions that treat patients and caregivers as a whole will likely achieve the greatest beneficial effects. PMID:24637299

Validity and reliability of Turkish Caregiver Burden Scale among family caregivers of haemodialysis patients.

PubMed

Cil Akinci, Ayse; Pinar, Rukiye

2014-02-01

To investigate the validity and reliability of the Caregiver Burden Scale in family members who provide primary care for haemodialysis patients. In Turkey, there is a need for a multi-dimensional instrument to evaluate the caregiver burden in people who provide care for patients with chronic diseases. A methodological study. The study sample consisted of 161 family members who provide primary care for haemodialysis patients. The forward-backward translation method was used to develop the Turkish Caregiver Burden Scale. The reliability was based on internal consistency investigated by Cronbach's alpha and item-total correlation. The factorial construct validity of the scale was tested with confirmatory factor analysis. By means of convergent and divergent validity, correlation between Caregiver Burden Scale and 36-Item Short Form Health Survey (SF-36) and correlation between Caregiver Burden Scale and the Maslach Burnout Scale were investigated. Cronbach's alpha and item-total correlations results suggested that there was good internal reliability. We found five underlying factors similar to original Scale's five-factor solution. The confirmatory factor analysis five-factor model represented an acceptable fit. Factor loadings were significant, with standardised loadings ranging from 0·43-0·81. By means of divergent validity, all sub-dimension scores and the total score of the Caregiver Burden Scale were negatively correlated with the SF-36, whereas there was a positive correlation with the emotional exhaustion and depersonalisation subscales of the Maslach Burnout Scale as expected. These results suggest that the Caregiver Burden Scale is a reliable and valid instrument which can be used with confidence in Turkish caregivers for haemodialysis patients to screen caregiver burden. The burden experienced by people who provide care for patients with chronic diseases can be evaluated with the Caregiver Burden Scale. Additionally, the Caregiver Burden Scale can be used

Changes in Adult Child Caregiver Networks

ERIC Educational Resources Information Center

Szinovacz, Maximiliane E.; Davey, Adam

2007-01-01

Purpose: Caregiving research has typically relied on cross-sectional data that focus on the primary caregiver. This approach neglects the dynamic and systemic character of caregiver networks. Our analyses addressed changes in adult child care networks over a 2-year period. Design and Methods: The study relied on pooled data from Waves 1 through 5…

TCARE: Tailored Caregiver Assessment and Referral

ERIC Educational Resources Information Center

Montgomery, Rhonda; Kwak, Jung

2008-01-01

Care managers, including nurses and social workers, often lack information that would help them more effectively target services to caregivers' needs. Useful information includes the type of services that will be most helpful for caregivers and the best time to start using these services. Generally, caregivers are simply told what services they…

Web-based health interventions for family caregivers of elderly individuals: A Scoping Review.

PubMed

Wasilewski, Marina B; Stinson, Jennifer N; Cameron, Jill I

2017-07-01

For the growing proportion of elders globally, aging-related illnesses are primary causes of morbidity causing reliance on family members for support in the community. Family caregivers experience poorer physical and mental health than their non-caregiving counterparts. Web-based interventions can provide accessible support to family caregivers to offset declines in their health and well-being. Existing reviews focused on web-based interventions for caregivers have been limited to single illness populations and have mostly focused on the efficacy of the interventions. We therefore have limited insight into how web-based interventions for family caregiver have been developed, implemented and evaluated across aging-related illness. To describe: a) theoretical underpinnings of the literature; b) development, content and delivery of web-based interventions; c) caregiver usage of web-based interventions; d) caregiver experience with web-based interventions and e) impact of web-based interventions on caregivers' health outcomes. We followed Arksey and O'Malley's methodological framework for conducting scoping reviews which entails setting research questions, selecting relevant studies, charting the data and synthesizing the results in a report. Fifty-three publications representing 32 unique web-based interventions were included. Over half of the interventions were targeted at dementia caregivers, with the rest targeting caregivers to the stroke, cancer, diabetes and general frailty populations. Studies used theory across the intervention trajectory. Interventions aimed to improve a range of health outcomes for caregivers through static and interactive delivery methods Caregivers were satisfied with the usability and accessibility of the websites but usage was generally low and declined over time. Depression and caregiver burden were the most common outcomes evaluated. The interventions ranged in their impact on health and social outcomes but reductions in perception of

Caring for frail elders with musculoskeletal conditions and family caregivers' subjective well-being: The role of multidimensional caregiver burden.

PubMed

Lu, Nan; Liu, Jinyu; Lou, Vivian W Q

2015-01-01

The present study examined the unique set of correlates of each dimension of the burden experienced by family caregivers of frail elders with musculoskeletal (MSK) conditions in China, and the role of caregiver burden in between caregiver stressors and subjective well-being. The data was derived from a community sample of 494 elder-caregiver dyads from six urban districts of Shanghai (China). The elders were aged 75 or above, needed assistance in activities of daily living (ADL) and had MSK conditions. The family caregivers were these elders' primary caregivers and at the age of 18 or older. Path analysis was used to examine the proposed model. Care recipients' functional health, cognitive status and behavioral problems affected the multiple dimensions of caregiver burden differently. These three stressors also indirectly affected caregivers' subjective well-being through physical, social and developmental burden. The findings highlighted the mediator role of caregiver burden in between caregiver stressors and subjective well-being, which supported burden-as-mediator theory in understanding family caregiving for frail elders with musculoskeletal conditions in a Chinese context. The focus of intervention should be varied according to the levels of the primary stressors. Policy and intervention implications with regard to the ways of helping Chinese families care for their frail elders with MSK conditions were discussed. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.

Informal Caregiving of Hospice Patients

PubMed Central

Pottie, Colin G.; Burch, Karen A.; Irwin, Scott A.

2014-01-01

Abstract Background: Informal caregivers play a critical role in the provision of care to hospice patients. The care they provide often impacts their physical and psychological well-being. Objective: This study synthesized 58 articles pertaining to informal hospice caregiving, focusing on caregivers' satisfaction with hospice services, the physical and psychological well-being of caregivers, the predictors of caregivers' well-being, the direct impact of hospice services on caregivers, and the effectiveness of targeted interventions for hospice caregivers. Method: A systematic literature review of journal articles published between 1985 and 2012 was conducted. Results: The studies reviewed found hospice caregivers to experience clinically significant levels of anxiety, depression, and stress; however, results for caregiver burden and quality of life were mixed. Caregivers' perceptions regarding the meaningfulness of care as well as their levels of social support were associated with enhanced psychological outcomes. Conclusions: Beyond satisfaction with hospice services, the direct impact of standard hospice care on caregivers remains uncertain. Caregiver intervention studies have demonstrated promising outcomes signifying a need for additional investigations into hospice-specific interventions that improve caregiver outcomes. Additional research and resources are needed to assist hospice caregivers, with the ultimate goal of minimizing their psychiatric and physical morbidity and enhancing their caregiving and subsequent bereavement processes. PMID:24992371

The Relationship Between True Colors Temperament Types of Primary Caregivers and Literacy Development: An Exploratory Analysis.

ERIC Educational Resources Information Center

Calahan, Charles A.

1996-01-01

Examines the relationship between the "True Colors" temperament type of the primary caregiver and the readiness to involve her child in the social context of extracurricular reading activities (a summer reading program) intended to promote literacy development. Finds that the "Gold" and "Blue" types involved their children in organized, structured…

Validation of a model of family caregiver communication types and related caregiver outcomes.

PubMed

Wittenberg, Elaine; Kravits, Kate; Goldsmith, Joy; Ferrell, Betty; Fujinami, Rebecca

2017-02-01

interventions that target specific caregiver types.

Vulnerabilities and caregiving in an ethnically diverse HIV-infected population.

PubMed

Moody, Anissa L; Morgello, Susan; Gerits, Pieter; Byrd, Desiree

2009-04-01

The current study aimed to identify the primary informal caregivers of a group of urban HIV+ adults (n = 250) and to determine relationships between demographic, medical, and substance use characteristics and caregivers types. Reported caregiver types included 36.8% familial, 22.4% significant other, and 22.8% institutional or other caregiver relationships. The remaining 18% of the sample reported having no individual that rendered informal care. Factors associated with the absence of an informal caregiver included African American race and low education. Hispanic participants reported the highest frequency of family caregivers while participants with a history of substance disorder were less likely to identify a significant other as a caregiver. This study demonstrates the evolving nature of informal caregiving in HIV, race- and education-related disparities in the absence of primary caregivers, and the importance of sociocultural and demographic factors in the study of HIV caregiving.

Stress and Coping in Primary Caregivers of Children with a Disability: A Qualitative Study Using the Lazarus and Folkman Process Model of Coping

ERIC Educational Resources Information Center

Kelso, Tara; French, Davina; Fernandez, Miguel

2005-01-01

Twenty-six primary caregivers of children with a disability took part in focus groups or interviews to discuss their perceptions of stress and the coping process. Research was framed within the Process Model of Stress and Coping (Lazarus & Folkman, 1984). Findings provided a snapshot of the common stresses encountered by caregivers and indicate…

Primary caregivers' satisfaction with clinicians' response to them as informal carers of young people with first-episode psychosis: a qualitative study.

PubMed

McCann, Terence V; Lubman, Dan I; Clark, Eileen

2012-01-01

To explore first-time primary caregivers' experience of the way mental health nurses and other mental health clinicians respond to them as carers of young people with first-episode psychosis. Caregivers have a key role in supporting family members/relatives with mental illness, but their contribution is undervalued frequently by mental health nurses and other mental health clinicians. Design.  Qualitative interpretative phenomenological analysis. A qualitative interpretative design was undertaken, using semi-structured, audio-recorded interviews. Twenty primary caregivers were recruited through Orygen Youth Health, a first-episode psychosis centre in Melbourne. Interpretative phenomenological analysis was used to identify themes in the data. Two competing themes were identified in the data, highlighting caregivers' contrasting experience with mental health nurses and other mental health clinicians. First, most clinical staff were approachable and supportive. Second, several carers felt their contribution was undervalued by some clinical staff. This was as a consequence of being excluded from clinical deliberations because of clinical staffs' concerns and young people's requests about maintaining confidentiality regarding treatment, as well as carers feeling their role was not taken seriously by clinical staff. First-time primary carers have positive and negative experiences with first-episode psychosis mental health nurses and other clinicians, and these competing events are interrelated. Experiences are affected directly by the manner they are treated by clinical staff and this may, in turn, affect carers' commitment to caring, the way they engage with clinical staff on subsequent occasions and towards the first-episode psychosis service generally. Greater appreciation is needed of the contribution, experience and difficulties caregivers encounter in their role and in engaging with mental health nurses and other clinicians. Additional training is required for

The forms and mechanisms of stress proliferation: the case of AIDS caregivers.

PubMed

Pearlin, L I; Aneshensel, C S; LeBlanc, A J

1997-09-01

Processes of stress proliferation are explored in a sample of informal caregivers to people with AIDS. Proliferation refers to the tendency for stressors to beget stressors. Two forms of proliferation are explored, each based on the distinction between primary and secondary stressors. Among AIDS caregivers, primary stressors are the hardships rooted in the caregiving role. Secondary stressors result from primary stressors, but arise in roles and activities outside of caregiving. One form of proliferation is the expansion of primary stressors, reflected in an increase in role overload and a growing sense of being a captive of the caregiver role. Expansion is largely driven by the course of AIDS and the elevation of demands it places on the caregiver. The second form of proliferation is the surfacing of secondary stressors in social and leisure life and in the occupational realm. This form arises from the strains imposed by the emerging caregiver role on the other roles and activities of the caregiver. It is proposed that the systematic assessment of proliferated stressors can help illuminate the dynamic connections between stress and health.

Beliefs about the causes of schizophrenia among Aymara and non-Aymara patients and their primary caregivers in the Central-Southern Andes.

PubMed

Caqueo-Urízar, Alejandra; Breslau, Joshua; Gilman, Stephen E

2015-02-01

The aim of this study is to investigate differences in the beliefs about the causes of schizophrenia between Aymara and non-Aymara patients with schizophrenia and their primary caregivers. Ethnic background plays an important role in the formation of beliefs regarding the causes of schizophrenia, and there have been no prior studies on such beliefs among the Aymara, an indigenous community with a population of about 2 million people living in the Andes. We focused on three systems of beliefs distinguished in the literature: biological, psychosocial and magical-religious. The sample comprised 253 patients (n=117 Aymara, and n=136 non-Aymara) of public mental health centers in Chile (33.6%), Peru (33.6%) and Bolivia (32.8%) with a diagnosis of schizophrenia, and each patient's primary caregiver. We administered to patients and caregivers a questionnaire with scales assessing the perceived causes of schizophrenia. Linear regression models were fitted to compare differences in the levels of causal beliefs between Aymara and non-Aymara patients and caregivers, and to identify socio-demographic and clinical predictors of different types of beliefs about the causes of schizophrenia. Adjusted for socio-demographic and clinical covariates, levels of psychosocial beliefs were significantly higher for Aymara caregivers (0.33, 95% confidence interval (CI)=0.05, 0.62) than non-Aymara caregivers. Contrary to expectations, beliefs about the causes of schizophrenia among Aymara are not more magical-religious than those of their non-Aymara counterparts. It may be necessary for mental health staff members to evaluate beliefs about the disorder, especially in ethnic minorities, before applying a standard model of treatment. © The Author(s) 2014.

Role of Social Support in Predicting Caregiver Burden

PubMed Central

Rodakowski, Juleen; Skidmore, Elizabeth R.; Rogers, Joan C.; Schulz, Richard

2012-01-01

Objective To examine the unique contribution of social support to burden in caregivers of adults aging with spinal cord injuries (SCI). Design Secondary analyses of cross-sectional data from a large cohort of adults aging with SCI and their primary caregivers. Setting Multiple community locations in Pittsburgh, PA, and Miami, FL. Participants Caregivers of community-dwelling adults aging with SCI (n=173) were interviewed as part of a multisite randomized clinical trial. The mean age of caregivers was 53 years (SD=15) and of care-recipients 55 years (SD=13). Interventions Not applicable. Main Outcome Measures The primary outcome was caregiver burden measured with the Abridged Version of the Zarit Burden Interview. A hierarchical multiple regression analysis examined social supports (social integration, received social support, and negative social interactions) effect on burden in caregivers of adults aging while controlling for demographic characteristics and caregiving characteristics. Results After controlling for demographic characteristics and caregiving characteristics, social integration (β̂ =−.16, P<.05), received social support (β̂ =−.15, P<.05), and negative social interactions (β̂ =.21, P<.01) were significant independent predictors of caregiver burden. Conclusions Findings demonstrate that social support is an important factor associated with burden in caregivers of adults aging with SCI. Social support should be considered for assessments and interventions designed to identify and reduce caregiver burden. PMID:22824248

Association of impairments of older persons with caregiver burden among family caregivers: Findings from rural South India.

PubMed

Ajay, Shweta; Kasthuri, Arvind; Kiran, Pretesh; Malhotra, Rahul

In India, owing to cultural norms and a lack of formal long-term care facilities, responsibility for care of the older person falls primarily on the family. Based on the stress process model, we assessed the association of type and number of impairments of older persons (∼primary stressors) with caregiver burden among their family caregivers in rural South India. All impaired older persons (aged ≥60, with impairment in activities of daily living (ADL) or cognition or vision or hearing) residing in 8 villages in Bangalore district, Karnataka, India, and their primary informal caregivers were interviewed. Caregiver burden was measured using the Zarit Burden Interview (ZBI; higher score indicating greater perceived burden). Linear regression models, adjusting for background characteristics of older persons and caregivers, assessed the association of type of impairment (physical [Yes/No], cognitive [Yes/No], vision [Yes/No] and hearing [Yes/No]) and number (1 or 2 or 3 or 4) of older person impairments with caregiver burden. A total of 140 caregivers, caring for 149 older persons, were interviewed. The mean (standard deviation) ZBI score was 21.2 (12.9). Of the various older person impairments, ZBI score was associated only with physical impairment (β=6.6; 95% CI: 2.1-11.1). Relative to caregivers of older person with one impairment, those caring for an older person with all 4 impairments had significantly higher ZBI score (β=13.9; CI: 2.5-25.4). Caregivers of older persons with multiple impairments, especially physical impairment, are vulnerable. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

Subjective Caregiver Burden and Caregiver Satisfaction: The Role of Partner Relationship Quality and Reciprocity.

PubMed

Tough, Hannah; Brinkhof, Martin W; Siegrist, Johannes; Fekete, Christine

2017-10-01

To explore the effect of relationship quality and reciprocity in partnerships on subjective caregiver burden and caregiver satisfaction in partners of persons with a severe physical disability (spinal cord injury). Cross-sectional, observational. Community setting. Caregiving partners of persons with spinal cord injury (N=118). Not applicable. Subjective caregiver burden measured by the Zarit Burden Interview (short form) and caregiver satisfaction measured by a single item on feelings of satisfaction resulting from the caregiver role. Caregiving partners who rated their relationship quality as high encountered less subjective caregiver burden (β=-1.10; 95% confidence interval [CI], -1.47 to -0.72; P<.001) and more caregiver satisfaction (odds ratio [OR], 1.18; 95% CI, 1.01-1.45; P=.049). These associations persisted even after controlling for sociodemographic characteristics, lesion severity of the care receiver, and objective caregiver burden. Partners who indicated high reciprocity in their relationship to the care receiver indicated less subjective caregiver burden and more caregiver satisfaction when relationship quality was excluded from the final models; however, the effect of reciprocity on subjective burden (β=-.38; 95% CI, -3.71 to 2.95; P=.82) and caregiver satisfaction (OR, 1.21; 95% CI, 0.28-5.22; P=.80) disappeared when including relationship quality. Results highlight the importance of relationship quality as a target for couple interventions aimed at reducing subjective caregiver burden and increasing satisfaction in the caregiving role. Copyright © 2016 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.

Addressing Social Determinants of Health by Integrating Assessment of Caregiver-Child Attachment into Community Based Primary Health Care in Urban Kenya

PubMed Central

Bryant, John H.; Bryant, Nancy H.; Williams, Susanna; Ndambuki, Racheal Nduku; Erwin, Paul Campbell

2012-01-01

A principle strategic insight of the Final Report for WHO’s Commission on Social Determinants of Health (SDOH) is that the nurturant qualities of the environments where children grow up, live, and learn matter the most for their development. A key determinant of early childhood development is the establishment of a secure attachment between a caregiver and child. We report initial field-tests of the integration of caregiver-child attachment assessment by community health workers (CHWs) as a routine component of Primary Health Care (PHC), focusing on households with children under 5 years of age in three slum communities near Nairobi, Kenya. Of the 2,560 children assessed from July–December 2010, 2,391 (90.2%) were assessed as having a secure attachment with a parent or other caregiver, while 259 (9.8%) were assessed as being at risk for having an insecure attachment. Parent workshops were provided as a primary intervention, with re-enforcement of teachings by CHWs on subsequent home visits. Reassessment of attachment by CHWs showed positive changes. Assessment of caregiver-child attachment in the setting of routine home visits by CHWs in a community-based PHC context is feasible and may yield valuable insights into household-level risks, a critical step for understanding and addressing the SDOH. PMID:23202764

Addressing social determinants of health by integrating assessment of caregiver-child attachment into community based primary health care in urban Kenya.

PubMed

Bryant, John H; Bryant, Nancy H; Williams, Susanna; Ndambuki, Racheal Nduku; Erwin, Paul Campbell

2012-10-12

A principle strategic insight of the Final Report for WHO's Commission on Social Determinants of Health (SDOH) is that the nurturant qualities of the environments where children grow up, live, and learn matter the most for their development. A key determinant of early childhood development is the establishment of a secure attachment between a caregiver and child. We report initial field-tests of the integration of caregiver-child attachment assessment by community health workers (CHWs) as a routine component of Primary Health Care (PHC), focusing on households with children under 5 years of age in three slum communities near Nairobi, Kenya. Of the 2,560 children assessed from July-December 2010, 2,391 (90.2%) were assessed as having a secure attachment with a parent or other caregiver, while 259 (9.8%) were assessed as being at risk for having an insecure attachment. Parent workshops were provided as a primary intervention, with re-enforcement of teachings by CHWs on subsequent home visits. Reassessment of attachment by CHWs showed positive changes. Assessment of caregiver-child attachment in the setting of routine home visits by CHWs in a community-based PHC context is feasible and may yield valuable insights into household-level risks, a critical step for understanding and addressing the SDOH.

The Role of Primary Caregiver Vocabulary Knowledge in the Development of Bilingual Children's Vocabulary Skills

ERIC Educational Resources Information Center

Buac, Milijana; Gross, Megan; Kaushanskaya, Margarita

2014-01-01

Purpose: The present study examined the impact of environmental factors (socioeconomic status [SES], the percent of language exposure to English and to Spanish, and primary caregivers' vocabulary knowledge) on bilingual children's vocabulary skills. Method: Vocabulary skills were measured in 58 bilingual children between the ages of 5…

Caregiving experiences predict changes in spiritual well-being among family caregivers of cancer patients.

PubMed

Adams, Rebecca N; Mosher, Catherine E; Cannady, Rachel S; Lucette, Aurelie; Kim, Youngmee

2014-10-01

Although enhanced spiritual well-being has been linked to positive mental health outcomes among family caregivers of cancer patients, little is known regarding predictors of spiritual well-being in this population. The current study aimed to examine caregiving experiences as predictors of change in family caregivers' spiritual well-being during the initial months following the patient's cancer diagnosis. Seventy family caregivers of newly diagnosed cancer patients (74% female, mean age = 59 years) participated in this longitudinal survey. Caregivers completed baseline questionnaires shortly before staying with the patient at an American Cancer Society Hope Lodge. Baseline questionnaires assessed caregiving experiences (i.e., self-esteem related to caregiving, family support for providing care, impact of caregiving on finances, and impact of caregiving on one's schedule). In addition, caregivers' spiritual well-being (i.e., meaning in life, peace, and faith) was assessed at baseline and 4-month follow-up. In univariate analyses, all caregiving experiences studied were associated with one or more aspects of spiritual well-being at 4-month follow-up. However, in the multivariate analysis, the only caregiving experience associated with aspects of spiritual well-being at 4-month follow-up was caregivers' perceptions of family support. Specifically, lack of family support was associated with lower levels of meaning and peace. Findings point to the importance of family support in facilitating the search for meaning and peace shortly after a loved one's cancer diagnosis and suggest that interventions targeting caregivers' support system may enhance their spiritual well-being. Copyright © 2014 John Wiley & Sons, Ltd.

Caregivers Create a Veteran-Centric Community in VHA Medical Foster Homes.

PubMed

Haverhals, Leah M; Manheim, Chelsea E; Gilman, Carrie V; Jones, Jacqueline; Levy, Cari

2016-01-01

The Veteran's Health Administration's Medical Foster Home program offers a unique long-term care option for veterans who require nursing-home- or assisted-living-level care. Veterans in a medical foster home reside with community-based caregivers who provide 24-hr-a-day care and monitoring. The veterans often remain in the medical foster home until end of life. Support and oversight is provided to the caregiver from the Veteran's Health Administration's community-based medical team. This qualitative descriptive study is based on secondary analysis of interviews with 20 medical foster home caregivers from 7 programs across the United States. The study's research aims are to describe and explain (a) the type of care backgrounds and skills these caregivers possess, (b) caregivers' primary motivations to open their homes to veterans who often have complex medical and social needs, and (c) how caregivers function in their role as primary caregiver for veterans. Findings indicated that caregivers interviewed had worked in long-term care settings and/or cared for family members. A strong desire to serve veterans was a primary motivation for caregivers, rather than financial gain. The caregivers' long-term care skills aided them in building and sustaining the unique medical foster home family-like community.

The impact of caregiver-mediated JASPER on child restricted and repetitive behaviors and caregiver responses.

PubMed

Harrop, Clare; Gulsrud, Amanda; Shih, Wendy; Hovsepyan, Lilit; Kasari, Connie

2017-05-01

Restricted and repetitive behaviors (RRBs) are a core feature of autism spectrum disorder (ASD). Compared to the social-communication impairments, we know considerably less about why children engage in RRBs and if and how to intervene with these behaviors. As a result, early intervention has typically focused on social-communication. In this study, we were interested in understanding how child RRBs changed following an intervention targeting social-communication behaviors and if caregiver training changed how they responded to their child's RRBs. Eighty-six toddlers with ASD and their caregivers received one of two interventions: caregivers were either actively coached while playing with their child (JASPER) or attended information sessions about ASD. On three different occasions (when they entered the study, following 10 weeks of intervention and 6-months after) caregivers were filmed playing with their child. From these recordings, we coded child RRBs and caregiver responses to these behaviors. Child RRBs remained relatively stable following intervention in both groups, but increased when the children returned at 6-months. Caregivers who received one-on-one coaching (JASPER) responded to a greater number of their child's RRBs and their responses were rated as more successful. Our study showed that a short-term social-communication intervention delivered through caregivers had "spillover effects" on how they also responded to their child's RRBs. Interventions targeting social-communication behaviors should also examine how these treatments affect child RRBs and how caregiver responses to these behaviors may change following training. Autism Res 2017, 10: 983-992. © 2016 International Society for Autism Research, Wiley Periodicals, Inc. © 2017 International Society for Autism Research, Wiley Periodicals, Inc.

Enantioselective Effects of Chiral Pesticides on their Primary Targets and Secondary Targets.

PubMed

Yang, Ye; Zhang, Jianyun; Yao, Yijun

2017-01-01

Enantioselectivity has been well recognized in the environmental fate and effects of chiral pesticides. Enantiospecific action of the optical enantiomers on the biological molecules establishes the mechanistic basis for the enantioselective toxicity of chiral pesticides to both target and non-target organisms. We undertook a structured search of bibliographic databases for research literature concerning the enantioselective effects of chiral pesticides, including insecticides, herbicides and fungicides, on biomolecules in various species by using some key words. The results of the relevant literatures were reviewed in the text and summarized in tables. Pesticides generally exert their activity on the target organisms via disrupting the primary target biomolecules. In non-target species, effects of pesticides on the secondary targets distinguished from the primary ones make great contribution to their toxicity. Recent investigations have provided convincing evidence of enantioselective toxicity of chiral pesticides to both target and non-target species which is recognized to result from their enantiospecific action on the primary or secondary targets in organisms. This review confirms that chiral pesticides have enantiospecific effects on both primary and secondary target biomolecules in organisms. Future studies regarding toxicological effects of chiral pesticides should focus on the relationship between the enantiomeric difference in the compound-biomolecules interaction and the enantioselectivity in their toxicity.

Predictors of Depressive Symptoms in Primary Caregivers of Young Children with or at Risk for Developmental Delay

ERIC Educational Resources Information Center

Feldman, M.; McDonald, L.; Serbin, L.; Stack, D.; Secco, M. L.; Yu, C. T.

2007-01-01

Background: Despite extensive research with families raising children with or at risk for developmental delay (DD), it is not clear whether primary caregivers of these children are at increased risk for depressive symptoms. Discrepant findings in the literature may be owing to heterogeneity of child problems. More research is needed on child,…

Factors affecting caregivers' ability to make environmental modifications.

PubMed

Messecar, D C

2000-12-01

This study explored factors that family caregivers described as affecting their ability to use environmental modifications. Intensive interviews and participant observation were used to collect detailed data from 24 primary family caregivers. Several factors that affect the caregivers' ability to implement modification strategies were identified in the analysis. These factors included attributes of the elderly individual, attributes of the modification, quality of the caregiver-elderly relationship, caregivers' skills, personal resources of the caregiver, and the informal and formal supports available. Of these factors, the most important were the salient skills that caregivers need to implement environmental modifications. These findings point to the importance of caregivers receiving skills training in this important dimension of caregiving. Intervention should be based on a collaborative approach that ensures the caregiver and care receiver's needs and preferences are respected.

Does caregiver participation in decision making within child welfare agencies influence children's primary and mental health care service use?

PubMed

Jolles, M P; Wells, R

2017-03-01

Many children in contact with child welfare agencies do not receive needed health services. These agencies have used participatory decision making (PDM) practices as a way to increase families' use of recommended services. However, we lack evidence of whether caregiver participation in PDM increases children's use of health services. This study uses a national sample of children involved with child welfare to compare their health service use between those children serve through a PDM practice and those who did not experience it. Cross-sectional analyses using the 2009-2010 National Survey of Child and Adolescent Well-Being. Propensity score analysis accounted for observed selection bias. PDM practice was measured as whether the caregiver was included in decision-making during service planning meetings. Health service use was measured as child's receipt of any primary or mental health care services in the past year. Primary health care need was measured using standardized measures and caseworker report. The sample was comprised of children ages 2-17 with primary or mental health needs in contact with a child welfare agency. In the unmatched sample of 1,358 children, 14% were served through a PDM service practice, and 12% had a primary health care and 37% a mental health need. Families served through PDM were also reported by caseworkers as more cooperative during the child welfare investigation, and with fewer reports of domestic violence and agency re-referrals (P < 0.05). Analyses using matched samples showed that for primary health care, 59% of PDM children received services compared with 40% for non-PDM children (P = 0.004). Group differences were not significant for mental health services. Lower-risk families were more likely to be served through PDM which was positively associated with child use of primary health services. Inclusion of caregivers in decision making may not be sufficient to overcome barriers to children's mental health service use. �

Concordance of patient and caregiver reports in evaluating quality of life in patients with malignant gliomas and an assessment of caregiver burden

PubMed Central

Jacobs, Daniel I.; Kumthekar, Priya; Stell, Becky V.; Grimm, Sean A.; Rademaker, Alfred W.; Rice, Laurie; Chandler, James P.; Muro, Kenji; Marymont, MaryAnne; Helenowski, Irene B.; Wagner, Lynne I.; Raizer, Jeffrey J.

2014-01-01

Background Given the neurocognitive impairment experienced by many patients with malignant gliomas, caregiver reports can be critical in assessing the quality of life (QOL) of these patients. In this study, we explored whether assessment of patient QOL by the primary caregiver shows concordance with the patient's self-reported QOL, and we quantified the burden faced by caregivers. Methods QOL of 45 patients was evaluated by both the patient and primary caregiver on 3 or more separate occasions using the Functional Assessment of Cancer Therapy-Brain (FACT-Br) instrument, and concordance between the 2 reports was evaluated. Caregiver burden was measured using the Caregiver Quality of Life Index-Cancer (CQOL-C) instrument. Results Overall, good concordance was observed between the patient and caregiver FACT-Br reports (intraclass correlation coefficient = 0.74). Patient-reported FACT-Br scores were 4.75 (95% CI, 1.44–8.05) points higher than paired caregiver reports on the 200-point scale (P = .008); however, this difference did not achieve clinical significance. Caregiver burden, as measured by the CQOL-C, was significantly greater among caregivers in this study than those previously reported for caregivers of patients with lung, breast, or prostate cancer (P < .001). Conclusions Despite minor discrepancies in caregiver assessments of patient QOL relative to patient self-reports, our results suggest that the caregiver assessments can serve as adequate proxies for patient reports. Our results also illustrate the particularly heavy burden faced by caregivers of patients with malignant glioma. Further research into both of these areas is warranted. PMID:26034616

Economic burden to primary informal caregivers of hospitalized older adults in Mexico: a cohort study.

PubMed

López-Ortega, Mariana; García-Peña, Carmen; Granados-García, Víctor; García-González, José Juan; Pérez-Zepeda, Mario Ulises

2013-02-08

The burden of out of pocket spending for the Mexican population is high compared to other countries. Even patients insured by social security institutions have to face the cost of health goods, services or nonmedical expenses related to their illness. Primary caregivers, in addition, experience losses in productivity by taking up responsibilities in care giving activities. This situation represents a mayor economic burden in an acute care setting for elderly population. There is evidence that specialized geriatric services could represent lower overall costs in these circumstances and could help reduce these burdens.The aim of this study was to investigate economic burden differences in caregivers of elderly patients comparing two acute care services (Geriatric and Internal Medicine). Specifically, economic costs associated with hospitalization of older adults in these two settings by evaluating health care related out of pocket expenditures (OOPE), non-medical OOPE and indirect costs. A comparative analysis of direct and indirect costs in hospitalised elderly patients (60-year or older) and their primary informal caregivers in two health care settings, using a prospective cohort was performed. Economic burden was measured by out of pocket expenses and indirect costs (productivity lost) due to care giving activities. The analysis included a two-part model, the first one allowing the estimation of the probability of observing any health care related and non-medical OOPE; and the second one, the positive observations or expenditures. A total of 210 subjects were followed during their hospital stay. Of the total number of subjects 95% reported at least one non-medical OOPE, being daily transportation the most common expense. Regarding medical OOPE, medicines were the most common expense, and the mean numbers of days without income were 4.12 days. Both OOPE and indirect costs were significantly different between type of services, with less overall economic burden to

Changes in Perceived Filial Obligation Norms Among Coresident Family Caregivers in Japan

PubMed Central

Tsutsui, Takako; Muramatsu, Naoko; Higashino, Sadanori

2014-01-01

Purpose of the Study: Japan introduced a nationwide long-term care insurance (LTCI) system in 2000, making long-term care (LTC) a right for older adults regardless of income and family availability. To shed light on its implications for family caregiving, we investigated perceived filial obligation norms among coresident primary family caregivers before and after the policy change. Design and Methods: Descriptive and multiple regression analyses were conducted to examine changes in perceived filial obligation norms and its subdimensions (financial, physical, and emotional support), using 2-wave panel survey data of coresident primary family caregivers (N = 611) in 1 city. The baseline survey was conducted in 1999, and a follow-up survey 2 years later. Results: On average, perceived filial obligation norms declined (p < .05). Daughters-in-law had the most significant declines (global and physical: p < .01, emotional: p < .05) among family caregivers. In particular, physical support, which Japan’s LTC reform targeted, declined significantly among daughters and daughters-in-law (p < .01). Multiple regression analysis indicated that daughters-in-law had significantly lower perceived filial obligation norms after the policy introduction than sons and daughters (p < .01 and p < .05, respectively), controlling for the baseline filial obligation and situational factors. Implications: Our research indicates declining roles of daughters-in-law in elder care during Japan’s LTCI system implementation period. Further international efforts are needed to design and implement longitudinal studies that help promote understanding of the interplay among national LTC policies, social changes, and caregiving norms and behaviors. PMID:24009170

Changes in perceived filial obligation norms among coresident family caregivers in Japan.

PubMed

Tsutsui, Takako; Muramatsu, Naoko; Higashino, Sadanori

2014-10-01

Japan introduced a nationwide long-term care insurance (LTCI) system in 2000, making long-term care (LTC) a right for older adults regardless of income and family availability. To shed light on its implications for family caregiving, we investigated perceived filial obligation norms among coresident primary family caregivers before and after the policy change. Descriptive and multiple regression analyses were conducted to examine changes in perceived filial obligation norms and its subdimensions (financial, physical, and emotional support), using 2-wave panel survey data of coresident primary family caregivers (N = 611) in 1 city. The baseline survey was conducted in 1999, and a follow-up survey 2 years later. On average, perceived filial obligation norms declined (p < .05). Daughters-in-law had the most significant declines (global and physical: p < .01, emotional: p < .05) among family caregivers. In particular, physical support, which Japan's LTC reform targeted, declined significantly among daughters and daughters-in-law (p < .01). Multiple regression analysis indicated that daughters-in-law had significantly lower perceived filial obligation norms after the policy introduction than sons and daughters (p < .01 and p < .05, respectively), controlling for the baseline filial obligation and situational factors. Our research indicates declining roles of daughters-in-law in elder care during Japan's LTCI system implementation period. Further international efforts are needed to design and implement longitudinal studies that help promote understanding of the interplay among national LTC policies, social changes, and caregiving norms and behaviors. © The Author 2013. Published by Oxford University Press on behalf of The Gerontological Society of America.

Characteristics and Concerns of Caregivers of Adults With Traumatic Brain Injury.

PubMed

Powell, Janet M; Wise, Elizabeth K; Brockway, Jo Ann; Fraser, Robert; Temkin, Nancy; Bell, Kathleen R

To describe the characteristics of caregivers of adults with traumatic brain injury (TBI) and their concerns in the first months after community discharge of the TBI survivor. Secondary analysis of data collected during a parallel-group randomized controlled trial. Community. A total of 153 consecutively enrolled caregivers of adults with moderate to severe TBI discharged to the community following acute and/or rehabilitation care at a Level I trauma center with 71 caregivers in the treatment group identifying concerns as part of the intervention procedures. Caregiver demographics, caregiver-survivor relationship characteristics, caregiver activity changes, and concerns targeted by caregivers for education and problem-solving via biweekly phone calls. Thirty-nine percent of caregivers were spouses and 35% parents. Sixty-five percent lived in the same house as the survivor preinjury with 86% in touch daily to several times per week. Concerns targeted by more than one-third of caregivers related to managing their emotional adjustment, strategies for getting things done, managing survivor emotions and behaviors, and engaging in healthful habits. Caregivers of TBI survivors targeted personal concerns relating to their own emotional adjustment and participation as well as concerns relating to symptoms and recovery of the TBI survivor to address through education and problem-solving.

Does the Psychological Type of Primary Caregivers Relate to the Number of Books They Read to Their Children?

ERIC Educational Resources Information Center

Calahan, Charles A.

1995-01-01

Investigates whether the psychological type of 23 female primary caregivers related to the amount of reading they will do with their children. Finds a significant correlation between the personality-temperament type of mothers and the number of books they read to their children during an eight-week period. (RS)

Modifiable factors associated with caregiver burden among family caregivers of terminally ill Korean cancer patients.

PubMed

Yoon, Seok-Joon; Kim, Jong-Sung; Jung, Jin-Gyu; Kim, Sung-Soo; Kim, Samyong

2014-05-01

Higher caregiver burden is associated with poor quality of life among family caregivers. However, in Korea, very few studies have examined factors associated with caregiver burden. The present study investigated factors associated with caregiver burden among family caregivers of terminally ill Korean cancer patients, particularly modifiable factors as a potential target of intervention strategies. A cross-sectional study using self-administered questionnaires was performed. Sixty-four family caregivers of terminally ill cancer patients who were admitted to the hospice-palliative care unit of a university hospital in South Korea were included. To identify caregiver burden, the Caregiver Reaction Assessment scale (CRA) was used in this study. Time spent in providing care per day, number of visits per week from other family members, family functioning, and a positive subscale, self-esteem, of the CRA were deemed as modifiable factors. Other sociodemographic, caregiving characteristics of the subjects were non-modifiable factors. Longer time spent providing care per day, fewer weekly visits from other family members, poor family functioning, and low self-esteem were considered as modifiable factors associated with caregiver burden. Low monthly income and the spouse being the family caregiver were non-modifiable factors. Our study has practical significance in that it identifies modifiable factors that can be used to devise intervention strategies. Developing and applying such intervention strategies for alleviating the factors associated with high caregiver burden could be important for improving the quality of life of both patients and their families.

Associations between Child Disabilities and Caregiver Discipline and Violence in Low- and Middle-Income Countries

PubMed Central

Hendricks, Charlene; Lansford, Jennifer E.; Deater-Deckard, Kirby; Bornstein, Marc H.

2014-01-01

Using nationally representative samples of 45,964 2- to 9-year-old children and their primary caregivers in 17 developing countries, we sought to understand relations between children’s cognitive, language, sensory, and motor disabilities and caregivers’ use of discipline and violence. Primary caregivers reported on their child’s disabilities and whether they or anyone in their household had used nonviolent discipline, psychological aggression, and physical violence toward the target child and whether they believed that using corporal punishment is necessary. Logistic regression analyses supported the hypothesis that children with disabilities are treated more harshly than children without disabilities. The findings suggest that policies and interventions are needed to work toward the United Nations’ goals of ensuring that children with disabilities are protected from abuse and violence. PMID:23895329

The Dementia Services Mini-Screen: A Simple Method to Identify Patients and Caregivers Needing Enhanced Dementia Care Services

PubMed Central

Borson, Soo; Scanlan, James M.; Sadak, Tatiana; Lessig, Mary; Vitaliano, Peter

2014-01-01

Objective The National Alzheimer’s Plan calls for targeted health system change to improve outcomes for persons with dementia and their family caregivers. We explored whether dementia-specific service needs and gaps could be predicted from simple information that can be readily acquired in routine medical care settings. Method Primary family caregivers for cognitively impaired older adults (n=215) were asked about current stress, challenging patient behaviors, and prior-year needs and gaps in 16 medical and psychosocial services. Demographic data, caregiver stress, and patient clinical features were evaluated in regression analyses to identify unique predictors of service needs and gaps. Results Caregiver stress and patient behavior problems together accounted for an average of 24% of the whole-sample variance in total needs and gaps. Across all analyses, including total, medical, and psychosocial services needs and gaps, all other variables combined (comorbid chronic disease, dementia severity, age, caregiver relationship, and residence) accounted for an accounted for a mean of 3%, with no variable yielding more than 4% in any equation. We combined stress and behavior problem indicators into a simple screen. In early/mild dementia dyads (n=111) typical in primary care settings, the screen identified gaps in total and psychosocial care in 84% and 77%, respectively, of those with high stress/high behavior problems vs. 25% and 23%, respectively, of those with low stress/low behavior problems. Medical care gaps were dramatically higher in high stress/high behavior problem dyads (66%) than all others (12%). Conclusion A simple tool (likely completed in 1–2 minutes) which combines caregiver stress and patient behavior problems, the Dementia Services Mini-Screen, could help clinicians rapidly identify high need, high gap dyads. Health care systems could use it to estimate population needs for targeted dementia services and facilitate their development. PMID:24315560

Exploring conflict between caregiving and work for caregivers of elders with dementia: a cross-sectional, correlational study.

PubMed

Wang, Yu-Nu; Shyu, Yea-Ing Lotus; Tsai, Wen-Che; Yang, Pei-Shan; Yao, Grace

2013-05-01

To report the moderating effects of work-related conditions and interactive family-care-giving variables, including mutuality and preparedness, on caregiver role strain and mental health for family caregivers of patients with dementia. Few studies have examined the interrelationships among caregivers' working conditions, care-giving dynamics and caregiver well-being. Cross-sectional, correlational study. Data were collected by self-completed questionnaires from 176 primary family caregivers of patients with dementia in Taiwan from May 2005-January 2006. Caregiver role strain and mental health were analysed by multiple regressions using a hierarchical method to enter independent variables and two- and three-way interaction terms after controlling for caregiver age and gender, employment status, and work flexibility and the simple effect of each independent variable. More preparedness was associated with less role strain for family caregivers with less work/care-giving conflict. More care-giving demand was associated with poorer mental health only for caregivers with low work/care-giving conflict and with average and low preparedness, but not high preparedness. For family caregivers with less work/care-giving conflict, more preparedness decreased role strain and maintained mental health even when care-giving demand was high. These results provide a knowledge base for understanding complex family caregiver phenomena and serve as a guide for developing interventions. Future studies with longitudinal follow-ups are suggested to explore actual causal relationships. © 2012 Blackwell Publishing Ltd.

"Mi Bebé y Yo": A Primary Care Group for Latina/o Infants and Their Spanish-Speaking Caregivers

ERIC Educational Resources Information Center

Margolis, Kate L.; Dunn, Dena M.; Herbst, Rachel Becker; Bunik, Maya; Buchholz, Melissa; Martinez, Dailyn; Talmi, Ayelet

2015-01-01

Culturally informed health interventions for linguistic minorities are crucial in promoting optimal child development. "Mi Bebé y Yo" is a primary care group for Spanish-speaking, Latina/o caregivers and their babies during their first year. Group visits occur in conjunction with well-baby checks and are designed to support families with…

A pilot trial of a stress management intervention for primary caregivers of children newly diagnosed with cancer: preliminary evidence that perceived social support moderates the psychosocial benefit of intervention.

PubMed

Marsland, Anna L; Long, Kristin A; Howe, Chelsea; Thompson, Amanda L; Tersak, Jean; Ewing, Linda J

2013-05-01

(1) To examine the acceptability and feasibility of a stress management intervention for caregivers of children recently diagnosed with cancer. (2) To explore whether caregivers with lower baseline perceived social support derive greater benefit from the intervention than those with higher perceived support. 45 primary caregivers were randomly assigned to intervention or standard care. Of these, 37 completed measures of social support, depression, anxiety, and perceived stress at both pre-intervention (T1; mean = 24 days post-diagnosis) and post-intervention time points (T2; mean = 165 days post-diagnosis). Enrollment, retention, and satisfaction data support feasibility and acceptability of the intervention. There was no overall significant impact of participation in the intervention on levels of distress at T2. However, T1 social support moderated intervention response, with caregivers who perceived lower T1 support showing greater psychological benefit from the intervention. Primary caregivers with lower levels of perceived social support may benefit from preemptive stress management intervention.

Stakeholder Meeting: Integrated Knowledge Translation Approach to Address the Caregiver Support Gap.

PubMed

Holroyd-Leduc, Jayna M; McMillan, Jacqueline; Jette, Nathalie; Brémault-Phillips, Suzette C; Duggleby, Wendy; Hanson, Heather M; Parmar, Jasneet

2017-03-01

Family caregivers are an integral and increasingly overburdened part of the health care system. There is a gap between what research evidence shows is beneficial to caregivers and what is actually provided. Using an integrated knowledge translation approach, a stakeholder meeting was held among researchers, family caregivers, caregiver associations, clinicians, health care administrators, and policy makers. The objectives of the meeting were to review current research evidence and conduct multi-stakeholder dialogue on the potential gaps, facilitators, and barriers to the provision of caregiver supports. A two-day meeting was attended by 123 individuals. Three target populations of family caregivers were identified for discussion: caregivers of seniors with dementia, caregivers in end-of-life care, and caregivers of frail seniors with complex health needs. The results of this meeting can and are being used to inform the development of implementation research endeavours and policies targeted at providing evidence-informed caregiver supports.

Voices of Informal Caregivers and Community Stakeholders: Whether and How to Develop an Informal Caregiver Training Program

PubMed Central

Phillips, Sara S.; Ragas, Daiva M.; Tom, Laura S.; Hajjar, Nadia; Dong, XinQi; Simon, Melissa A.

2015-01-01

Our primary objective was to gather pilot data from caregivers and stakeholders to guide the development of a training program to assist informal caregivers in re-entering the job market. The goal of the program would be to help caregivers rebound from their incurred economic burden by transitioning into a paid caregiving or other health-service role. The economic burden they bear often necessitates a return to the workforce following caregiving; yet the act of returning is complicated by an extended absence from the workforce and a lack of experience in other verifiably skilled and paid roles. We interviewed 37 stakeholders and 25 caregivers of a chronically or terminally ill family member or friend in a suburban collar county close to Chicago. The interview questions considered the economic impact of illness, as well as the feasibility, logistics, and options of a training program for caregivers. Our data gathered from caregivers and leaders within this community support the acceptability of such a training program for informal caregivers, and also provide practical advice for development and implementation related to training cost, length, content, and instructional practices. PMID:26607814

Voices of Informal Caregivers and Community Stakeholders: Whether and How to Develop an Informal Caregiver Training Program.

PubMed

Phillips, Sara S; Ragas, Daiva M; Tom, Laura S; Hajjar, Nadia; Dong, XinQi; Simon, Melissa A

2016-06-01

Our primary objective was to gather pilot data from caregivers and stakeholders to guide the development of a training program to assist informal caregivers in re-entering the job market. The goal of the program would be to help caregivers rebound from their incurred economic burden by transitioning into a paid caregiving or other health-service role. The economic burden they bear often necessitates a return to the workforce following caregiving; yet the act of returning is complicated by an extended absence from the workforce and a lack of experience in other verifiably skilled and paid roles. We interviewed 37 stakeholders and 25 caregivers of a chronically or terminally ill family member or friend in a suburban collar county close to Chicago. The interview questions considered the economic impact of illness, as well as the feasibility, logistics, and options of a training program for caregivers. Our data gathered from caregivers and leaders within this community support the acceptability of such a training program for informal caregivers, and also provide practical advice for development and implementation related to training cost, length, content, and instructional practices.

Livelihood strategies and nutritional status of grandparent caregivers of AIDS orphans in Nyando District, Kenya.

PubMed

Wangui, Elizabeth Edna

2009-12-01

Although the growing role of grandparents as primary caregivers of AIDS orphans in sub-Saharan Africa has been established by previous research, few scholars have undertaken studies to explore the experiences of older persons in this new role. In this study, I used qualitative research methods to examine livelihood strategies that influenced the nutritional status of grandparent caregivers, a population largely neglected in the literature on African livelihoods. In this article I highlight the agency of older persons by identifying responses that promote their livelihood resilience. My research was guided by the sustainable livelihoods framework and involved in-depth individual interviews with 30 grandparent caregivers selected based on their nutritional status. Focus group discussions and key informant interviews were also conducted. Results indicate that the ability to mobilize new sources of labor for food production and new social networks to facilitate other forms of food entitlement are critical to nutritional status. These results are important in designing interventions targeting vulnerable grandparent caregivers.

(Cost)-effectiveness of family meetings on indicated prevention of anxiety and depressive symptoms and disorders of primary family caregivers of patients with dementia: design of a randomized controlled trial.

PubMed

Joling, Karlijn J; van Hout, Hein P J; Scheltens, Philip; Vernooij-Dassen, Myrra; van den Berg, Bernard; Bosmans, Judith; Gillissen, Freek; Mittelman, Mary; van Marwijk, Harm W J

2008-01-21

Dementia is a major public health problem with enormous costs to society and major consequences for both patients and their relatives. Family members of persons with dementia provide much of the care for older adults with dementia in the community. Caring for a demented relative is not easy and fraught with emotional strain, distress, and physical exhaustion. Family caregivers of dementia patients have an extremely high risk developing affective disorders such as major depression and anxiety disorder. Family meetings appear to be among the most powerful psychosocial interventions to reduce depression in caregivers. An American landmark study reported substantial beneficial effects of a multifaceted intervention where family meetings had a central place on depression in family caregivers as well as on delay of institutionalization of patients. These effects were not replicated in other countries yet. We perform the first trial comparing only structured family meetings with significant others versus usual care among primary family caregivers of community dwelling demented patients and measure the effectiveness on both depression and anxiety in the primary caregiver, both on disorder and symptom levels. In this randomized controlled trial effectiveness as well as cost-effectiveness of family meetings is evaluated. The intervention group receives four family meetings with family and close friends of the primary family caregiver of a community dwelling patient with a clinical diagnosis of dementia. Dyads of patients and their primary caregiver are followed up to one year after baseline assessment. The main outcome measures are the incidence of anxiety and depressive disorders assessed with the Mini-International Neuropsychiatric Interview (MINI) and the severity of anxiety and depressive symptoms in caregivers is measured by validated self report instruments: the Centre for Epidemiologic Studies Depression Scale (CES-D) for depression and the anxiety scales of the

Clinical Assessment of Family Caregivers in Dementia.

ERIC Educational Resources Information Center

Rankin, Eric D.; And Others

1992-01-01

Evaluated development of integrated family assessment inventory based on Double ABCX and Circumplex models of family functioning and its clinical utility with 121 primary family caregivers from cognitive disorders program. Proposed model predicted significant proportion of variance associated with caregiver stress and strain. Several aspects of…

Social support for diabetes illness management: supporting adolescents and caregivers.

PubMed

Idalski Carcone, April; Ellis, Deborah A; Weisz, Arlene; Naar-King, Sylvie

2011-10-01

The aim of this research study was to examine the relationship between 4 sources of social support (support for the adolescent from family, support for the adolescent from friends, support for the caregiver from another adult, and support to the family from the health care provider) and adolescents' diabetes outcomes (illness management behavior and health status) using a diverse sample of urban adolescents. One hundred forty-one adolescents with insulin-managed diabetes and their primary caregivers completed questionnaires assessing social support and illness management behavior. Glucose meters were downloaded and hemoglobin A1c assays were obtained. Structural equation modeling was used to test a model social support informed by social ecological theory. The results of the structural equation modeling indicated that support for the caregiver from another adult was directly and positively related to support for the adolescent from family and indirectly related to better illness management. Support for the adolescent from family was directly related to better diabetes management and, through better management, to better diabetes health. Support to the family from the health care provider was not related to support for the adolescent and support to the adolescent from friends was not related to illness management, as hypothesized. This study identifies a novel target for social support intervention to improve adolescents' illness management behavior-the caregivers of adolescents with diabetes. By enhancing the social support caregivers receive from other adults in their lives, caregivers' ability to support their adolescent children with diabetes might also be improved which, in turn, improves adolescents' illness outcomes.

Validity and reliability of the Early Childhood Caries Perceptions Scale (ECCPS) to assess health beliefs related to early childhood caries prevention among primary caregivers of children under 5 years of age.

PubMed

Pisarnturakit, Pagaporn P; Shaw, Bret R; Tanasukarn, Chanuantong; Vatanasomboon, Paranee

2012-09-01

Primary caregivers' child oral health care beliefs and practices are major factors in the prevention of Early Childhood Caries (ECC). This study assessed the validity and reliability of a newly-developed scale--the Early Childhood Caries Perceptions Scale (ECCPS)--used to measure beliefs regarding ECC preventive practices among primary caregivers of young children. The ECCPS was developed based on the Health Belief Model. The construct validity and reliability of the ECCPS were examined among 254 low-socioeconomic status primary caregivers with children under five years old, recruifed from 4 Bangkok Metropolitan Administration Health Centers and a kindergarten school. Exploratory factor analysis (EFA) revealed a four-factor structure. The four factors were labeled as Perceived Susceptibility, Perceived Severity, Perceived Benefits and Perceived Barriers. Internal consistency measured by the Cronbach's coefficient alpha for those four factors were 0.897, 0.971, 0.975 and 0.789, respectively. The ECCPS demonstrated satisfactory levels of reliability and validity for assessing the health beliefs related to ECC prevention among low-socioeconomic primary caregivers.

Needs of family caregivers in home care for older adults 1

PubMed Central

Bierhals, Carla Cristiane Becker Kottwitz; dos Santos, Naiana Oliveira; Fengler, Fernanda Laís; Raubustt, Kamila Dellamora; Forbes, Dorothy Anne; Paskulin, Lisiane Manganelli Girardi

2017-01-01

ABSTRACT Objective: to reveal the felt and normative needs of primary family caregivers when providing instrumental support to older adults enrolled in a Home Care Program in a Primary Health Service in the South of Brazil. Methods: using Bradshaw's taxonomy of needs to explore the caregiver's felt needs (stated needs) and normative needs (defined by professionals), a mixed exploratory study was conducted in three steps: Descriptive quantitative phase with 39 older adults and their caregiver, using a data sheet based on patient records; Qualitative exploratory phase that included 21 caregiver interviews, analyzed by content analysis; Systematic observation, using an observation guide with 16 caregivers, analyzed by descriptive statistics. Results: the felt needs were related to information about instrumental support activities and subjective aspects of care. Caregivers presented more normative needs related to medications care. Conclusion: understanding caregivers' needs allows nurses to plan interventions based on their particularities. PMID:28403338

Economic burden to primary informal caregivers of hospitalized older adults in Mexico: a cohort study

PubMed Central

2013-01-01

Background The burden of out of pocket spending for the Mexican population is high compared to other countries. Even patients insured by social security institutions have to face the cost of health goods, services or nonmedical expenses related to their illness. Primary caregivers, in addition, experience losses in productivity by taking up responsibilities in care giving activities. This situation represents a mayor economic burden in an acute care setting for elderly population. There is evidence that specialized geriatric services could represent lower overall costs in these circumstances and could help reduce these burdens. The aim of this study was to investigate economic burden differences in caregivers of elderly patients comparing two acute care services (Geriatric and Internal Medicine). Specifically, economic costs associated with hospitalization of older adults in these two settings by evaluating health care related out of pocket expenditures (OOPE), non-medical OOPE and indirect costs. Methods A comparative analysis of direct and indirect costs in hospitalised elderly patients (60-year or older) and their primary informal caregivers in two health care settings, using a prospective cohort was performed. Economic burden was measured by out of pocket expenses and indirect costs (productivity lost) due to care giving activities. The analysis included a two-part model, the first one allowing the estimation of the probability of observing any health care related and non-medical OOPE; and the second one, the positive observations or expenditures. Results A total of 210 subjects were followed during their hospital stay. Of the total number of subjects 95% reported at least one non-medical OOPE, being daily transportation the most common expense. Regarding medical OOPE, medicines were the most common expense, and the mean numbers of days without income were 4.12 days. Both OOPE and indirect costs were significantly different between type of services, with less

Family caregivers of individuals with frontotemporal dementia: examining the relationship between coping and caregiver physical and mental health.

PubMed

Wong, Cindy C; Wallhagen, Margaret I

2014-01-01

To identify strategies to assist family caregivers of individuals with frontotemporal dementia (FTD) in dealing with their caregiving demands, nurses must understand these family members' unique needs and how they currently deal with their demands. The purpose of this study was to examine the relationship between coping and caregiver physical and mental health among FTD family caregivers. Participants were primary caregivers of individuals with FTD (with behavioral symptoms) living at home (N = 61). A small positive association was noted between problem-focused coping and caregiver physical health (r = 0.29, p < 0.05), and a small but nonsignificant positive correlation was noted between emotion-focused coping and caregiver mental health (r = 0.21, p = 0.10). However, multiple regression analysis showed that emotion-focused coping (β = 0.46, p < 0.05) made a statistically significant, unique contribution to caregiver mental health and explained approximately 14% of its variance. These findings support the potential value of emotion-focused coping strategies when dealing with behavioral symptoms manifested by individuals with FTD. Copyright 2014, SLACK Incorporated.

Ethnic Differences in Caregiver Quality of Life in Pediatric Asthma

PubMed Central

Everhart, Robin S.; Mitchell, Daphne Koinis; McQuaid, Elizabeth L.; Kopel, Sheryl; Seifer, Ronald; Canino, Glorisa; Fritz, Gregory

2012-01-01

Objective The aim of this study was to determine ethnic and site differences in quality of life (QOL) in a sample of Latino (Puerto Rican and Dominican) and non-Latino White (NLW) caregivers of children with asthma in mainland US and Island PR. We also investigated ethnic and site differences in associations between caregiver QOL and indicators of asthma morbidity. Method Seven-hundred and eighty-seven children with asthma (7–16 years of age) and their primary caregivers participated. Primary caregivers completed a measure of QOL, child asthma control, and emergency department utilization, among other measures. Results Ethnic and site differences were found on total QOL scores (ΔF(1, 783) = 29.46, p < .001). Island PR caregivers reported worse QOL scores than RI Latino and NLW caregivers; RI Latino caregivers reported significantly worse QOL scores than NLW caregivers. In RI Latino and Island PR children, worse caregiver QOL was associated with asthma that was not in control and with 1 or more ED visits. Conclusion Latino caregivers may be experiencing a greater level of burden related to their child’s asthma than NLW caregivers. Caregiver QOL in pediatric asthma may be a reflection of broader, contextual stress that some Latino caregivers experience on a daily basis (e.g., cultural beliefs, acculturation). Future research should continue to investigate mechanisms that explain the burden associated with pediatric asthma in Latino families, as well as whether QOL assessments should consider the impact of everyday stressors on caregiver QOL in pediatric asthma. PMID:23027132

Family caregiver social problem-solving abilities and adjustment to caring for a relative with vision loss.

PubMed

Bambara, Jennifer K; Owsley, Cynthia; Wadley, Virginia; Martin, Roy; Porter, Chebon; Dreer, Laura E

2009-04-01

To examine the prevalence of persons at risk for depression among family caregivers of visually impaired persons and the extent to which social problem-solving abilities are associated with caregiver depressive symptomatology and life satisfaction. Family caregivers were defined as adults who accompanied their adult relative to an appointment at a low-vision rehabilitation clinic and self-identified themselves as the primary family caregiver responsible for providing some form of assistance for their relative due to vision impairment. Demographic variables, depressive symptoms, life satisfaction, caregiver burden, and social problem-solving abilities were assessed in caregivers. The patient's visual acuity and depressive symptoms and their relationship to the caregiver's depressive symptoms and life satisfaction were also examined. Ninety-six family caregivers were enrolled. Of those, 35.4% were identified as at risk for depression. Among caregivers, dysfunctional or ineffective social problem-solving abilities were significantly associated with greater depressive symptomatology and decreased life satisfaction after adjustment for caregiver burden and demographic and medical variables for both the caregiver and the visually impaired patient. Problem orientation or motivation to solving problems was also significantly associated with caregiver depression and satisfaction with life. A substantial number of caregivers of visually impaired adults experience psychosocial distress, particularly among those who possess poor social problem-solving abilities. These results underscore the need for routine screening and treatment of emotional distress among individuals caring for relatives with vision impairments. Future research should examine the extent to which psychosocial interventions targeting caregiver social problem-solving skills may be useful not only in improving caregiver quality of life but also in subsequently enhancing rehabilitation outcomes for the visually

Effects of a Psychological Intervention in a Primary Health Care Center for Caregivers of Dependent Relatives: A Randomized Trial

ERIC Educational Resources Information Center

Rodriguez-Sanchez, Emiliano; Patino-Alonso, Maria C.; Mora-Simon, Sara; Gomez-Marcos, Manuel A.; Perez-Penaranda, Anibal; Losada-Baltar, Andres; Garcia-Ortiz, Luis

2013-01-01

Purpose: To assess, in the context of Primary Health Care (PHC), the effect of a psychological intervention in mental health among caregivers (CGs) of dependent relatives. Design and Methods: Randomized multicenter, controlled clinical trial. The 125 CGs included in the trial were receiving health care in PHC. Inclusion criteria: Identifying…

[Desing and validation of a scale to measure caregiving dedication in caregivers of dependent older people].

PubMed

Serrano-Ortega, Natalia; Frías-Osuna, Antonio; Recio-Gómez, Juan M; Del-Pino-Casado, Rafael

2015-11-01

To develop and validate a scale to measure caregiving dedication regarding activities of daily living in caregivers of dependent older people. Cross-sectional study. Primary Health Care (Andalusia, Spain). a probabilistic sample of 200 caregivers of older relatives from Córdoba, Spain. Content validation by experts, construct validity (by exploratory factor analysis), divergent validity and reliability (internal consistency, test-retest reliability and inter-observers reliability). Cronbach's alpha was 0.86. Intraclass Correlation Coefficient was 0.96 for test-retest reliability and 0.88 for inter-observers reliability. When the sample was divided in two groups according to perceived burden level (presence and absence), the perceived burden was significantly different in each group (P=.001). The factor analysis revealed one only factor that explained 64% of the variance. The scale allows a suitable measure of caregiving dedication regarding activities of daily living in caregivers of older people, because this scale allows a quickly, easy administration, is well accepted by caregivers, has acceptable psychometric results and includes the frequency of caregiving, the kind of attended need and the dependence level in each need. Copyright © 2014 Elsevier España, S.L.U. All rights reserved.

Providing care to relatives with mental illness: reactions and distress among primary informal caregivers.

PubMed

Chang, Sherilyn; Zhang, Yunjue; Jeyagurunathan, Anitha; Lau, Ying Wen; Sagayadevan, Vathsala; Chong, Siow Ann; Subramaniam, Mythily

2016-03-25

The responsibility of caring for relatives with mental illness often falls on the family members. It has been reported that the reactions to or consequences of providing care are what rendered the role of a caregiver challenging and hence a source of distress. This present study thus aimed to identify socio-demographic correlates of caregiving experiences using the Caregiver Reaction Assessment (CRA) and to examine the associations between reactions to caregiving and psychological distress. A total of 350 caregivers with relatives seeking outpatient care at a tertiary psychiatric hospital were recruited for this study. Distress among caregivers was assessed using the Patient Health Questionnaire (PHQ-9). The CRA was administered to measure reactions from caregiving in four domains including impact on schedule and health (ISH), impact on finance (IF), lack of family support (LFS) and caregiver esteem (CE). Participants also completed a questionnaire that asked for their socio-demographic information. Multivariable linear regression analysis was first used with domains of CRA as outcome variables and socio-demographic variables as predictors in the models. The next set of multivariable linear regression analysis tested for the association between CRA domains and distress with CRA domain scores as outcome variables and PHQ-9 score as predictor, controlling for socio-demographic variables. Socio-demographic correlates of CRA domains identified were age, education, employment, income and ethnicity. Domain scores of CRA were significantly associated with PHQ-9 score even after controlling for socio-demographic variables. A higher distress score was associated with greater impact felt in the domain of ISH (β = 0.080, P < 0.001), IF (β = 0.064, P < 0.001), and LFS (β = 0.057, P < 0.001), and was associated with lower CE domain scores (β = -0.021, P < 0.05). This study identified several socio-demographic correlates of caregiving reaction in the different domains. Each

Self-administered acupressure for symptom management among Chinese family caregivers with caregiver stress: a randomized, wait-list controlled trial.

PubMed

Tiwari, Agnes; Lao, Lixing; Wang, Amy Xiao-Min; Cheung, Denise Shuk Ting; So, Mike Ka Pui; Yu, Doris Sau Fung; Lum, Terry Yat Sang; Yuk Fung, Helina Yin King; Yeung, Jerry Wing Fai; Zhang, Zhang-Jin

2016-10-28

Caregiving can be stressful, potentially creating physical and psychological strain. Substantial evidence has shown that family caregivers suffer from significant health problems arising from the demands of caregiving. Although there are programs supporting caregivers, there is little evidence regarding their effectiveness. Acupressure is an ancient Chinese healing method designed to restore the flow of Qi (vital energy) by applying external pressure to acupoints. A randomized, wait-list controlled trial was developed to evaluate the effectiveness of a self-administered acupressure intervention on caregiver stress (primary objective) and stress-related symptoms of fatigue, insomnia, depression, and health-related quality of life (secondary objectives) in Chinese caregivers of older family members. Two hundred Chinese participants, aged ≥ 21 years, who are the primary caregivers of an older family member and screen positive for caregiver stress and symptoms of fatigue/insomnia/depression will be recruited from a community setting in Hong Kong. Subjects will be randomized to receive either an immediate treatment condition (self-administered acupressure intervention) or a wait-list control condition. The self-administered acupressure intervention will include (i) an individual learning and practice session twice a week for 2 weeks, (ii) a home follow-up visit once a week for 2 weeks, and (iii) 15-min self-practice twice a day for 6 weeks. The wait-list control group will receive the same acupressure training after the intervention group has completed the intervention. We hypothesize that Chinese family caregivers in the intervention group will have lower levels of caregiver stress, fatigue, insomnia, depression, and higher health-related quality of life after completion of the intervention than participants in the wait-list control group. This study will provide evidence for the effectiveness of self-administered acupressure in reducing stress and improving

Intervention to improve social and family support for caregivers of dependent patients: ICIAS study protocol.

PubMed

Rosell-Murphy, Magdalena; Bonet-Simó, Josep M; Baena, Esther; Prieto, Gemma; Bellerino, Eva; Solé, Francesc; Rubio, Montserrat; Krier, Ilona; Torres, Pascuala; Mimoso, Sonia

2014-03-25

Despite the existence of formal professional support services, informal support (mainly family members) continues to be the main source of eldercare, especially for those who are dependent or disabled. Professionals on the primary health care are the ideal choice to educate, provide psychological support, and help to mobilize social resources available to the informal caregiver.Controversy remains concerning the efficiency of multiple interventions, taking a holistic approach to both the patient and caregiver, and optimum utilization of the available community resources. .For this reason our goal is to assess whether an intervention designed to improve the social support for caregivers effectively decreases caregivers burden and improves their quality of life. CONTROLled, multicentre, community intervention trial, with patients and their caregivers randomized to the intervention or control group according to their assigned Primary Health Care Team (PHCT). Primary Health Care network (9 PHCTs). Primary informal caregivers of patients receiving home health care from participating PHCTs. Required sample size is 282 caregivers (141 from PHCTs randomized to the intervention group and 141 from PHCTs randomized to the control group. a) PHCT professionals: standardized training to implement caregivers intervention. b) Caregivers: 1 individualized counselling session, 1 family session, and 4 educational group sessions conducted by participating PHCT professionals; in addition to usual home health care visits, periodic telephone follow-up contact and unlimited telephone support. Caregivers and dependent patients: usual home health care, consisting of bimonthly scheduled visits, follow-up as needed, and additional attention upon request.Data analysisDependent variables: Caregiver burden (short-form Zarit test), caregivers' social support (Medical Outcomes Study), and caregivers' reported quality of life (SF-12)INDEPENDENT VARIABLES: a) Caregiver: sociodemographic data

Caregiver burden of Mexican dementia patients: the role of dysexecutive syndrome, sleep disorders, schooling and caregiver depression.

PubMed

Rosas-Carrasco, Óscar; Guerra-Silla, María de Guadalupe; Torres-Arreola, Laura Del Pilar; García-Peña, Carmen; Escamilla-Jiménez, Cristopher Isaac; González-González, César

2014-01-01

As a result of the accelerated growth of the elderly population, reconfiguration of families and member roles, and the increase of mental disorders, it is necessary to investigate the effects of this set of factors on the caregivers of patients with dementia in Mexico. Mental disorders of individuals have a negative impact on their physical and emotional quality of life, leading to greater dependence and making the caring experience a heavy burden. Several studies (none in Mexico) have used either the characteristics of the patient or caregiver to determine the burden, but few studies have included both profiles within a single study. The objective of the present study was to analyze the characteristics of the patients and caregivers associated with caregiver burden. A multicenter study was carried out in six health institutions located in Mexico City, including 175 patients (and their caregivers) diagnosed with different types of dementia. We used the Spanish Caregiver Burden Screen. Descriptive analysis and logistic regressions were used to estimate the effect of the covariates on the caregiver burden. The results showed that patient variables have a greater impact on caregiver burden than caregiver-associated variables. Dysexecutive syndrome, sleep disorders, schooling and caregiver depression are associated with a higher level of caregiver burden. Caregiver burden is a complex phenomenon. The results of the present study showed the need to implement multifactorial interventions targeting the caregiver to reduce the burden, strengthen the skills for patient management to avoid depression, improve patient health, and diminish functional dependence and future hospitalization. © 2013 Japan Geriatrics Society.

Childhood Caregiving Roles, Perceptions of Benefits, and Future Caregiving Intentions among Typically Developing Adult Siblings of Individuals with Autism Spectrum Disorder

ERIC Educational Resources Information Center

Nuttall, Amy K.; Coberly, Ben; Diesel, Sara J.

2018-01-01

Typically developing siblings (TDS) of individuals with Autism Spectrum Disorder (ASD) frequently serve as caregivers during childhood, known as parentification, and primary caregivers for siblings in adulthood. In order to evaluate mechanisms linking these roles, we surveyed emerging-adult TDS (N = 108) about childhood parentification roles…

Circle of Care: Extending Beyond Primary Caregivers to Examine Collaborative Caretaking in Adolescent Development

PubMed Central

Margolis, Kathryn L.; Fosco, Gregory M.; Stormshak, Elizabeth A.

2013-01-01

In the contemporary family, which is increasingly shaped by multicultural influences, parents rarely are the sole caretakers of their children. To improve understanding of family dynamics, researchers must redefine caregiving networks to include multiple caregivers, such as extended family members. This study explored the influences of caregiving networks on youth depression by examining who youths perceived as caretakers, how many caretakers were in their networks, the youths’ connectedness with adults in their network, and harmony of relationships among adults within the network. Data from an ethnically diverse, urban sample of 180 middle school youths revealed participation of multiple caregivers for all groups, but ethnic differences existed in network composition. These differences in network composition are discussed within a socio-cultural context, considering how positive relationships with specific caregivers may buffer future depression. Longitudinal analyses confirmed the importance of positive relationships with caregiving networks for youth of color when predicting future depression. PMID:27453615

Family caregiver communication in oncology: advancing a typology.

PubMed

Goldsmith, Joy; Wittenberg, Elaine; Platt, Christine Small; Iannarino, Nicholas T; Reno, Jenna

2016-04-01

The quality of communication between the patient and family caregiver impacts quality of life and well-being for the two; however, providers have few tools to understand communication patterns and assess the communication needs and preferences of caregivers. The aims of this study were to examine family communication patterns among oncology patients and their caregivers and to identify common characteristics among four different types of family caregivers. Nurses recruited oncology patient-caregiver dyads through a large cancer treatment center in the Southeast. Patients and caregivers were separated from one another and interviewed during chemotherapeutic infusions. Interviews were recorded, transcribed, coded, and thematized. A sample of 24 patients and their caregivers (n = 48) were interviewed. The majority of dyads (21, 88%) shared the same family communication pattern. Common caregiver communication features support previous work identifying four caregiver communication types: Manager, Carrier, Partner, and Lone caregivers. Manager caregivers lead patients by utilizing extensive medical knowledge, whereas Carrier caregivers were led by patients and described tireless acts to maintain the family and avoid difficult conversations. Partner caregivers facilitated family involvement and open communication on a variety of topics, while Lone caregivers focused solely on biomedical matters and a hope for cure. Caregiver communication types were corroborated by patient-caregiver descriptions of caregiving. However, more information is needed to ascertain the variables associated with each caregiver type. Future work to improve identification of caregiver types and create targeted caregiver care plans will require further study of health literacy levels and tested communication interventions per type. Copyright © 2015 John Wiley & Sons, Ltd.

Family Caregiver Social Problem-Solving Abilities and Adjustment to Caring for a Relative with Vision Loss

PubMed Central

Bambara, Jennifer K.; Owsley, Cynthia; Wadley, Virginia; Martin, Roy; Porter, Chebon; Dreer, Laura E.

2009-01-01

Purpose To examine the prevalence of persons at risk for depression among family caregivers of visually impaired persons and the extent to which social problem-solving abilities are associated with caregiver depressive symptomatology and life satisfaction. Methods Family caregivers were defined as adults who accompanied their adult relative to an appointment at a low-vision rehabilitation clinic and self-identified themselves as the primary family caregiver responsible for providing some form of assistance for their relative due to vision impairment. Demographic variables, depressive symptoms, life satisfaction, caregiver burden, and social problem-solving abilities were assessed in caregivers. The patient’s visual acuity and depressive symptoms and their relationship to the caregiver’s depressive symptoms and life satisfaction were also examined. Results Ninety-six family caregivers were enrolled. Of those, 35.4% were identified as at risk for depression. Among caregivers, dysfunctional or ineffective social problem-solving abilities were significantly associated with greater depressive symptomatology and decreased life satisfaction after adjustment for caregiver burden and demographic and medical variables for both the caregiver and the visually impaired patient. Problem orientation or motivation to solving problems was also significantly associated with caregiver depression and satisfaction with life. Conclusions A substantial number of caregivers of visually impaired adults experience psychosocial distress, particularly among those who possess poor social problem-solving abilities. These results underscore the need for routine screening and treatment of emotional distress among individuals caring for relatives with vision impairments. Future research should examine the extent to which psychosocial interventions targeting caregiver social problem-solving skills may be useful not only in improving caregiver quality of life but also in subsequently enhancing

Psychometric Evaluation of Kingston Caregiver Stress Scale.

PubMed

Sadak, Tatiana; Korpak, Anna; Wright, Jacob D; Lee, Mee Kyung; Noel, Margaret; Buckwalter, Kathleen; Borson, Soo

2017-01-01

Standardized measurement of caregiver stress is a component of Medicare's new health care benefit supporting care planning for people with dementia. In this article we identify existing measures of caregiver stress, strain and burden and propose specific criteria for choosing tools that may be suitable for wide use in primary care settings. We reviewed 22 measures and identified one, the Kingston Caregiver Stress Scale (KCSS), which met all the proposed criteria but had not been studied in a U.S. We conducted a psychometric evaluation of KCSS to determine its potential usefulness as a care planning tool with a U.S. We examined the internal consistency, test-retest reliability, component structure, and relationship to depression and anxiety in 227 dementia caregivers at two U.S. sites. The KCSS has high internal consistency and test-retest reliability, a strong factor structure, and moderate to high correlations with caregiver depression and anxiety. KCSS is a good candidate for use as part of comprehensive care planning for people with dementia and their caregivers. Routine assessment of caregiver stress in clinical care may facilitate timely intervention and potentially improve both patient and caregiver outcomes.

Falls and Hospitalizations Among Persons With Dementia and Associated Caregiver Emotional Difficulties.

PubMed

Leggett, Amanda N; Polenick, Courtney A; Maust, Donovan T; Kales, Helen C

2018-03-19

Falls and hospitalizations are adverse health events commonly experienced by persons with dementia (PWDs). These events often require urgent care from a family caregiver and may increase caregiver stress. We examine falls and hospitalizations among PWDs as predictors of caregivers' reported care-related emotional difficulty, in addition to care-related stressors. Cross-sectional telephone survey of 652 informal caregivers for PWDs. A multinomial logistic regression examined falls (last month) and hospitalizations (prior year) experienced by PWDs as predictors of caregivers' care-related emotional difficulty, accounting for demographic characteristics and primary and secondary caregiving stressors. Over 20% of caregivers reported high levels of care-related emotional difficulty. Controlling for demographic characteristics and primary and secondary caregiving stressors, the PWD's prior month fall was significantly associated with greater care-related emotional difficulty; the PWD's hospitalizations were not associated with care-related emotional difficulty. Approximately 30% of PWDs had experienced a past year hospitalization and prior month fall, and one in five caregivers reported high emotional difficulty related to care. Although secondary strains and resources of caregiving were strong predictors of care-related emotional difficulty, PWDs' falls represent a significant stressor that increases odds of caregiver emotional difficulty over and above other strains. Consequently, a fall experienced by a PWD may represent a key time for clinicians to assess caregiver well-being.

Family caregiver mistreatment of the elderly: prevalence of risk and associated factors.

PubMed

Orfila, Francesc; Coma-Solé, Montserrat; Cabanas, Marta; Cegri-Lombardo, Francisco; Moleras-Serra, Anna; Pujol-Ribera, Enriqueta

2018-01-22

The detection of elder mistreatment is emerging as a public health priority; however, abusive behaviors exercised by caregivers are little known and rarely detected among primary health care professionals. This study aims to estimate the prevalence of risk of abuse against community-residing elderly with moderate to severe dependency whose caregivers are relatives. In addition, we aim to describe the association between such a risk and socio-demographic variables, cognitive and dependency state of the victim, and the scale of the caregiver's anxiety, depression, and burden. Cross-sectional study developed in 72 Primary Health Care teams from Barcelona, Spain. Participants were caregivers and their dependent care recipients (N = 829). Home interviews included the Caregiver Abuse Screen (CASE); self-reported abuse from care recipient; activities of daily living and cognitive state of the care recipient; anxiety and depression in caregivers and Caregiver Burden Scale. The relationship prior to the dependency, positive aspects of caregiving, and social support for the caregiver were also assessed. Multivariate analysis was performed using logistic regression with risk of abuse as dependent variable. Caregivers were mainly women (82.8%) with a mean age of 63.3 years. Caregivers and care recipients lived in the same household in 87.4% of cases, and 86.6% had enjoyed a good previous relationship. Care recipients were women (65.6%), with a mean age of 84.2 years, and 64.2% had moderate to severe cognitive impairment. CASE demonstrated a prevalence of 33.4% (95% CI: 30.3-36.7) of abuse risk by the caregiver. Logistic regression showed as statistically significant: caregiver burden (OR = 2.75; 95% CI: 1.74-4.33), caregiver anxiety (OR = 2.06; 95% CI: 1.40-3.02), caregiver perception of aggressive behavior in the care recipient (OR = 7.24; 95% CI: 4.99-10.51), and a bad previous relationship (OR = 4.66; 95% CI: 1.25-17.4). Prevalence of risk of abuse is

Targeting and managing behavioral symptoms in individuals with dementia: a randomized trial of a nonpharmacological intervention.

PubMed

Gitlin, Laura N; Winter, Laraine; Dennis, Marie P; Hodgson, Nancy; Hauck, Walter W

2010-08-01

To test the effects of an intervention that helps families manage distressing behaviors in family members with dementia. Two-group randomized trial. In home. Two hundred seventy-two caregivers and people with dementia. Up to 11 home and telephone contacts over 16 weeks by health professionals who identified potential triggers of patient behaviors, including communication and environmental factors and patient undiagnosed medical conditions (by obtaining blood and urine samples) and trained caregivers in strategies to modify triggers and reduce their upset. Between 16 and 24 weeks, three telephone contacts reinforced strategy use. Primary outcomes were frequency of targeted problem behavior and caregiver upset with and confidence managing it at 16 weeks. Secondary outcomes were caregiver well-being and management skills at 16 and 24 weeks and caregiver perceived benefits. Prevalence of medical conditions for intervention patients were also examined. At 16 weeks, 67.5% of intervention caregivers reported improvement in targeted problem behavior, compared with 45.8% of caregivers in a no-treatment control group (P=.002), and reduced upset with (P=.03) and enhanced confidence managing (P=.01) the behavior. Additionally, intervention caregivers reported less upset with all problem behaviors (P=.001), less negative communication (P=.02), less burden (P=.05), and better well-being (P=.001) than controls. Fewer intervention caregivers had depressive symptoms (53.0%) than control group caregivers (67.8%, P=.02). Similar caregiver outcomes occurred at 24 weeks. Intervention caregivers perceived more study benefits (P<.05), including ability to keep family members home, than controls. Blood and urine samples of intervention patients with dementia showed that 40 (34.1%) had undiagnosed illnesses requiring physician follow-up. Targeting behaviors upsetting to caregivers and modifying potential triggers improves symptomatology in people with dementia and caregiver well-being and

Using Narrative Approach for Anticipatory Grief Among Family Caregivers at Home

PubMed Central

Toyama, Hiroko; Honda, Akiko

2016-01-01

Family caregivers of patients with terminal-stage cancer have numerous roles as caregivers, which can influence their anticipatory grief. The purpose of this study was to clarify how talking to family caregivers of patients with terminal illness using the narrative approach can influence such caregivers’ process of anticipatory grief. We conducted the narrative approach as an intervention with two family caregivers several times and qualitatively analyzed their narratives. The results indicated that these family caregivers had two primary roles—family member and caregiver—and that family caregivers felt trapped in their caregiver role. The narrative approach helped them transition into the role needed for coping with the loss. PMID:28462354

Family Conflict as a Mediator of Caregiver Strain

ERIC Educational Resources Information Center

Scharlach, Andrew; Li, Wei; Dalvi, Tapashi B.

2006-01-01

The present study used structural equation modeling to examine the potential mediating effect of family conflict on caregiver strain in a randomly drawn household sample of 650 adults with primary care responsibility for an adult age 50 or older with a mental disability. Caregiver strain was directly influenced by the conflict, disagreements, and…

Caregiver knowledge and attitudes of preschool oral health and early childhood caries (ECC).

PubMed

Schroth, Robert J; Brothwell, Douglas J; Moffatt, Michael E K

2007-04-01

Prevention strategies are integral to improving the oral health for young Aboriginal children. For such to be effective, it is important to understand the social value that parents and caregivers ascribe to primary teeth. The purpose of this paper is to report caregiver knowledge and attitudes toward preschool oral health and early childhood caries (ECC) from 4 communities in Manitoba. Cross-sectional study, including a retrospective interview with caregivers. Children and their main caregivers served as the sample. Preschoolers underwent a comprehensive dental screening while caregivers completed a questionnaire that explored knowledge and attitudes toward preschool dental health. Caregiver responses were matched with findings from each child's examination. A majority agreed that primary teeth were important, that dental disease could lead to health problems and that a first dental visit should be made by age 1. Caregivers of children with ECC were more likely to believe that caries could not affect a child's health while those who believed primary teeth are important had children with significantly less decay. Most caregivers believed that primary teeth are important and correctly responded to inquiries about knowledge and attitudes toward oral health. Attitudes on the importance of baby teeth and bottle feeding after one year of age, the effect of rotten teeth on childhood health and night-time nursing emerged as variables most associated with the absence/presence of ECC and deft rates. Incorporating such questioning into caries risk assessments may be a useful means to determine a child's risk for ECC.

Caregiving between two cultures: an integrative experience.

PubMed

Jones, Patricia S; Zhang, Xinwei Esther; Jaceldo-Siegl, Karen; Meleis, Afaf I

2002-07-01

In 1995, more than half of elderly immigrants to the United States were born in Asia or the Pacific region. The purpose of this study was to describe the process of caring for elderly parents by Asian American women. Forty-one women (22 Chinese American and 19 Filipino American) caring for elderly parents were interviewed in a study based on Strauss and Corbin's grounded theory methodology (1990). Although the women were moderately acculturated, indications of being in transition were evident. Analysis of interview data led to development of a substantive theory of caregiving between two cultures, reflecting the paradox of living and caregiving by two sets of standards and worldviews. The primary strategies used to manage the caregiving challenges were connecting and calibrating. Through personal growth and finding meaning, the caregivers integrated the caregiver role into their lives and became more connected with their families and within themselves.

Emotional hyperreactivity in response to childhood abuse by primary caregivers in patients with borderline personality disorder.

PubMed

Lobbestael, Jill; Arntz, Arnoud

2015-09-01

One of the core postulated features of borderline personality disorder (BPD) is extreme emotional reactivity to a wide array of evocative stimuli. Findings from previous experimental research however are mixed, and some theories suggest specificity of hyper emotional responses, as being related to abuse, rejection and abandonment only. The current experiment examines the specificity of emotional hyperreactivity in BPD. The impact of four film clips (BPD-specific: childhood abuse by primary caregivers; BPD-nonspecific: peer bullying; positive; and neutral) on self-reported emotional affect was assessed in three female groups; BPD-patients (n = 24), cluster C personality disorder patients (n = 17) and non-patient controls (n = 23). Results showed that compared to the neutral film clip, BPD-patients reacted with more overall negative affect following the childhood abuse clip, and with more anger following the peer bullying clip than the two other groups. The current study was restricted to assessment of the impact of evocative stimuli on self-reported emotions, and the order in which the film clips were presented to the participants was fixed. Results suggest that BPD-patients only react generally excessively emotional to stimuli related to childhood abuse by primary caregivers, and with excessive anger to peer-bullying stimuli. These findings are thus not in line with the core idea of general emotional hyperreactvity in BPD. Copyright © 2015 Elsevier Ltd. All rights reserved.

Caregiving Statistics

MedlinePlus

... on Family Caregivers and Family Caregiving Caregiving Population Economics of Caregiving Impact on Family Caregiver's Health Caregiving ... services combined ($158 billion). Evercare Survey of the Economic Downturn and Its Impact on Family Caregiving; National ...

Caregiver Asthma Knowledge, Aptitude, and Practice in High Healthcare Utilizing Children: Effect of an Educational Intervention

PubMed Central

Madhok, Neha; Kipperman, Stacy

2013-01-01

Factors underlying high healthcare utilization among Hispanic and African American (AA) children with asthma are not well known. We hypothesized that low parental knowledge and suboptimal practices are associated with high healthcare utlization and sought to elucidate these factors and identify ethnicity-specific differences. We also hypothesized that a targeted educational intervention will decrease emergency department (ED) visits and hospitalizations. A 57-item questionnaire investigating asthma knowledge, aptitude, and practice was administered during a hospitalization to 268 caregivers (158 Hispanic and 110 AA) of high healthcare utilizer children. Responses were compared between ethnicities. Participants were randomized into an education group and a control group to investigate the impact of an in-hospital educational intervention on future ED visits and hospitalizations. More than 80% of caregivers knew that asthma is associated with muscle constriction and mucus production. Overall, 66.7%–86.9% of caregivers found preventive steps including allergen avoidance, regular primary care physician (PCP) follow–up, and medication adherence helpful, but only 45.2% reported adherence to controller medications. Similarly, caregivers found management steps, including albuterol use, avoidance of ineffective medications, and need to contact PCP helpful but 33% Hispanic caregivers contacted their child's PCP at the time of the exacerbation leading the current hospitalization, compared with 17% AA caregivers (P=0.006). Moreover, 40% and 30% Hispanic and 27% and 18% AA caregivers felt stressed and helpless, respectively, about their child's asthma. Despite high baseline levels of knowledge, there were fewer ED visits in the education group (1.56±1.94) compared with the control group (2.05±2.32) (P=0.02) 2 years after the intervention. Although Hispanic and AA caregivers of children with high healthcare utilization were knowledgeable of asthma pathophysiology, and

External Validity of the New York University Caregiver Intervention: Key Caregiver Outcomes Across Multiple Demonstration Projects.

PubMed

Fauth, Elizabeth B; Jackson, Mark A; Walberg, Donna K; Lee, Nancy E; Easom, Leisa R; Alston, Gayle; Ramos, Angel; Felten, Kristen; LaRue, Asenath; Mittelman, Mary

2017-06-01

The Administration on Aging funded six New York University Caregiver Intervention (NYUCI) demonstration projects, a counseling/support intervention targeting dementia caregivers and families. Three sites (Georgia, Utah, Wisconsin) pooled data to inform external validity in nonresearch settings. This study (a) assesses collective changes over time, and (b) compares outcomes across sites on caregiver burden, depressive symptoms, satisfaction with social support, family conflict, and quality of life. Data included baseline/preintervention ( N = 294) and follow-up visits (approximately 4, 8, 12 months). Linear mixed models showed that social support satisfaction increased ( p < .05) and family conflict decreased ( p < .05; Cohen's d = 0.49 and 0.35, respectively). Marginally significant findings emerged for quality of life increases ( p = .05) and burden decreases ( p < .10). Depressive symptoms remained stable. Slopes did not differ much by site. NYUCI demonstrated external validity in nonresearch settings across diverse caregiver samples.

Intervention to improve social and family support for caregivers of dependent patients: ICIAS study protocol

PubMed Central

2014-01-01

Background Despite the existence of formal professional support services, informal support (mainly family members) continues to be the main source of eldercare, especially for those who are dependent or disabled. Professionals on the primary health care are the ideal choice to educate, provide psychological support, and help to mobilize social resources available to the informal caregiver. Controversy remains concerning the efficiency of multiple interventions, taking a holistic approach to both the patient and caregiver, and optimum utilization of the available community resources. .For this reason our goal is to assess whether an intervention designed to improve the social support for caregivers effectively decreases caregivers burden and improves their quality of life. Methods/design Design: Controlled, multicentre, community intervention trial, with patients and their caregivers randomized to the intervention or control group according to their assigned Primary Health Care Team (PHCT). Study area: Primary Health Care network (9 PHCTs). Study participants: Primary informal caregivers of patients receiving home health care from participating PHCTs. Sample: Required sample size is 282 caregivers (141 from PHCTs randomized to the intervention group and 141 from PHCTs randomized to the control group. Intervention: a) PHCT professionals: standardized training to implement caregivers intervention. b) Caregivers: 1 individualized counselling session, 1 family session, and 4 educational group sessions conducted by participating PHCT professionals; in addition to usual home health care visits, periodic telephone follow-up contact and unlimited telephone support. Control: Caregivers and dependent patients: usual home health care, consisting of bimonthly scheduled visits, follow-up as needed, and additional attention upon request. Data analysis Dependent variables: Caregiver burden (short-form Zarit test), caregivers’ social support (Medical Outcomes Study), and

Cumulative stress and substantiated maltreatment: the importance of caregiver vulnerability and adult partner violence.

PubMed

Wekerle, Christine; Wall, Anne-Marie; Leung, Eman; Trocmé, Nico

2007-04-01

Our goal is to assess the effect of caregiver vulnerabilities, singly and in combination, on the substantiation of child abuse (physical, sexual) and neglect, while controlling for relevant background variables. We test the moderator role of adult partner violence in qualifying the relationship between caregiver vulnerabilities and maltreatment substantiation. Secondary analyses of the 1998 Canadian Incidence Study of Reported Child Maltreatment (CIS) are used to predict child protective service investigation substantiation versus non-substantiation from a range of caregiver vulnerability factors. Involvement in partner violence was examined as a moderator in the relation between caregiver vulnerabilities and maltreatment substantiation. The CIS is an epidemiological survey of first-reported cases to child protective services, using a random sample of child welfare agencies across Canada. Child welfare workers completed a research form on the child, primary caregiver, family, perpetrator, severity and type of maltreatment, as well as services and court outcomes. All maltreatment classifications were assigned according to the Canadian legal definition of child abuse and neglect. Hierarchical logistic regression analyses were used, with stepped entry of: (1) demographic factors, socioeconomic disadvantage, and caregiver's own history of maltreatment; (2) caregiver vulnerability factors; (3) involvement in partner violence; (4) the interaction between caregiver vulnerability and partner violence. Caregiver substance abuse was found to be the single most potent kind of caregiver vulnerability in predicting maltreatment substantiation. When the total number of vulnerabilities was used as the predictor, prediction across all types of maltreatment increased, especially for substantiated neglect. Analyses also showed that the presence of partner violence in the home exacerbated the effect of caregiver vulnerability on substantiation. The total number of caregiver

Caregivers as Healthcare Managers: Health-Management Activities, Needs and Caregiving Relationships for Colorectal Cancer Survivors with Ostomies

PubMed Central

McMullen, Carmit K.; Schneider, Jennifer; Altschuler, Andrea; Grant, Marcia; Hornbrook, Mark C.; Liljestrand, Petra; Krouse, Robert S.

2015-01-01

Purpose While the burdens and rewards of cancer caregiving are well-documented, few studies describe the activities involved in cancer caregiving. We employed a social-ecological perspective to explore the work of cancer caregiving for long-term colorectal cancer (CRC) survivors with ostomies. We focused on healthcare management, defined here as the ways in which informal caregivers participate in healthcare-related activities such as managing medical appointments and information, obtaining prescriptions and supplies, and providing transportation to obtain healthcare services. Methods This ethnographic study included 31 dyads consisting of long-term CRC survivors (>5 years post-surgery) and their primary informal caregivers. Survivors were members of integrated healthcare delivery systems. We interviewed participants using in-depth interviews and followed a subset using ethnographic methods. Medical record data ascertained survivors’ cancer and medical history. Results We classified families into a matrix of healthcare management resources (high vs. low) and survivors’ healthcare needs (high vs. low). We found that patients’ healthcare needs did not always correspond to their caregivers’ management activities. CRC survivors with high needs had more unmet needs when caregivers and survivors differed in the level of caregiver involvement they desired or regarded as optimal. This discrepancy was particularly evident in non-marital relationships. Conclusions As cancer survivors age and grow in number, it becomes increasingly important to understand how informal caregivers support survivors’ well-being. Framing healthcare management as a component of caregiving provides a useful perspective that could facilitate future research and interventions to support survivors, particularly those with significant sequelae from their cancer treatment. PMID:24691886

Leisure Activity and Caregiver Involvement in Middle-Aged and Older Adults With Down Syndrome.

PubMed

Mihaila, Iulia; Hartley, Sigan L; Handen, Benjamin L; Bulova, Peter D; Tumuluru, Rameshwari V; Devenny, Darlynne A; Johnson, Sterling C; Lao, Patrick J; Christian, Bradley T

2017-04-01

The present study examined leisure activity and its association with caregiver involvement (i.e., residence and time spent with primary caregiver) in 62 middle-aged and older adults with Down syndrome (aged 30-53 years). Findings indicated that middle-aged and older adults with Down syndrome frequently participated in social and passive leisure activities, with low participation in physical and mentally stimulating leisure activities. Residence and time spent with primary caregiver were associated with participation in physical leisure activity. The findings suggest a need for support services aimed at increasing opportunities for participating in physical and mentally stimulating leisure activity by middle-aged and older adults with Down syndrome. These support services should partner with primary caregivers in order to best foster participation in physical leisure activity.

The Children's Attention-Deficit Hyperactivity Disorder Telemental Health Treatment Study: Caregiver Outcomes.

PubMed

Vander Stoep, Ann; McCarty, Carolyn A; Zhou, Chuan; Rockhill, Carol M; Schoenfelder, Erin N; Myers, Kathleen

2017-01-01

The Children's Attention-deficit Hyperactivity Disorder (ADHD) Telemental Health Treatment Study (CATTS) tested the hypotheses that children and caregivers who received guideline-based treatment delivered through a hybrid telehealth service delivery model would experience greater improvements in outcomes than children and caregivers receiving treatment via a comparison delivery model. Here, we present caregiver outcomes. 88 primary care providers (PCPs) in seven geographically underserved communities referred 223 children (ages 5.5 - 12.9 years) to the randomized controlled trial. Over 22 weeks, children randomized to the CATTS service delivery model received six sessions of telepsychiatry and six sessions of caregiver behavior management training provided in person by community therapists who were trained and supervised remotely. Children randomized to the comparison Augmented Primary Care (APC) service model received management in primary care augmented by a single telepsychiatry consultation. Caregiver outcomes included changes in distress, as measured by the Patient Health Questionnaire (PHQ-9), Parenting Stress Index (PSI), Caregiver Strain Questionnaire (CSQ) and Family Empowerment Scale (FES). Caregivers completed five assessments. Multilevel mixed effects regression modeling tested for differences between the two service delivery models in caregiver outcomes from baseline to 25 weeks. Compared to caregivers of children in the APC model, caregivers of children in the CATTS service model showed statistically significantly greater improvements on the PHQ-9 (β = -1.41, 95 % CI = [-2.74, -0.08], p < .05), PSI (β = -4.59, 95 % CI = [-7.87, - 1.31], p < .001), CSQ (β = -5.41, 95 % CI = [- 8.58, -2.24], p < .001) and FES (β = 6.69, 95 % CI = [2.32, 11.06], p < .01). Improvement in child ADHD symptoms mediated improved caregiver scores on the PSI and CSQ. Improvement in child ODD behaviors mediated caregiver

Correlates of poor health among orphans and abandoned children in less wealthy countries: the importance of caregiver health.

PubMed

Thielman, Nathan; Ostermann, Jan; Whetten, Kathryn; Whetten, Rachel; O'Donnell, Karen

2012-01-01

More than 153 million children worldwide have been orphaned by the loss of one or both parents, and millions more have been abandoned. We investigated relationships between the health of orphaned and abandoned children (OAC) and child, caregiver, and household characteristics among randomly selected OAC in five countries. Using a two-stage random sampling strategy in 6 study areas in Cambodia, Ethiopia, India, Kenya, and Tanzania, the Positive Outcomes for Orphans (POFO) study identified 1,480 community-living OAC ages 6 to 12. Detailed interviews were conducted with 1,305 primary caregivers at baseline and after 6 and 12 months. Multivariable logistic regression models describe associations between the characteristics of children, caregivers, and households and child health outcomes: fair or poor child health; fever, cough, or diarrhea within the past two weeks; illness in the past 6 months; and fair or poor health on at least two assessments. Across the six study areas, 23% of OAC were reported to be in fair or poor health; 19%, 18%, and 2% had fever, cough, or diarrhea, respectively, within the past two weeks; 55% had illnesses within the past 6 months; and 23% were in fair or poor health on at least two assessments. Female gender, suspected HIV infection, experiences of potentially traumatic events, including the loss of both parents, urban residence, eating fewer than 3 meals per day, and low caregiver involvement were associated with poorer child health outcomes. Particularly strong associations were observed between child health measures and the health of their primary caregivers. Poor caregiver health is a strong signal for poor health of OAC. Strategies to support OAC should target the caregiver-child dyad. Steps to ensure food security, foster gender equality, and prevent and treat traumatic events are needed.

The influence of culture on the experiences of Korean, Korean American, and Caucasian-American family caregivers of frail older adults: a literature review.

PubMed

Kong, Eun-Hi

2007-03-01

The purpose of this review is to explore cultural influences on the experiences of Korean, Korean American, and Caucasian American family caregivers caring for frail older adults in terms of the selection of a primary caregiver, caregiving motivation, support/help-seeking, and negative emotional responses(depression and burden). Seven electronic databases were searched to retrieve studies from 1966 to 2005. Thirty-two studies were identified. This review supported cultural influences on the selection of primary caregiver, caregiving motivation, and support/help-seeking among the three caregiver groups. In Korean caregivers, the major primary caregivers were daughters-in-law while among Korean American and Caucasian American caregivers, the major primary caregivers were daughters or spouses. As a major caregiving motivation, Caucasian American caregivers reported filial affection while Korean caregivers and Korean American caregivers reported filial obligation. Korean caregivers reported higher extended family support, while Caucasian American caregivers reported higher utilization of formal support. Korean caregivers showed the highest levels of depression followed by Korean American caregivers and Caucasian American caregivers. In order to develop culturally appropriate interventions and policies, more research is needed to further explain these differences among the three groups, especially regarding support/help-seeking and negative emotional responses.

An Exploratory Study Examining Risk Communication among Adolescent Children, Their Incarcerated Mothers, and Their Caregivers.

PubMed

Robillard, Alyssa G; Holliday, Rhonda C; DeHart, Dana D; Lewis, Kaleea; Rutherford, Yamisha; Amutah, Ndidi N

2016-01-01

Adolescent children of incarcerated mothers (ACIM) are typically left in the care of adults (primary caregivers) who play a crucial role in children's care and guidance, as well as in the facilitation of contact and communication with incarcerated mothers. The purpose of this study was to explore the nature of relationships and communication among adolescent children of incarcerated mothers, primary caregivers, and incarcerated mothers using pilot data. Semi-structured individual interviews were conducted with youth aged 12-17 (n=7) and caregivers (n=6) recruited through a non-profit organization working with incarcerated mothers and their children. Incarcerated mothers and primary caregivers represent an important family unit for ACIMs and may play a role in preventing risk behavior. A conceptual framework is offered for further consideration of mother and caregiver communication with youth and youth risk.

Caregiver-proxy reliability of the Igbo-culture adapted Maleka Stroke Community Reintegration Measure: a validation study.

PubMed

Okoye, Emmanuel Chiebuka; Awhen, Peter Agba; Akosile, Christopher Olusanjo; Maruf, Fatai Adesina; Iheukwumere, Ngozi; Egwuonwu, Afamefuna Victor

2017-09-01

This study was designed to determine the caregiver-proxy reliability of the Igbo-culture adapted urban version of the Maleka Stroke Community Reintegration Measure (I-MSCRIM). This was a validation study involving 74 consenting stroke survivors and their 74 primary informal caregivers consecutively recruited from selected tertiary hospitals in South-East Nigeria (Igboland). The I-MSCRIM was researcher-administered to the participants. Obtained data was analyzed using frequency counts, percentages, range, mean, standard deviation, Spearman rank order correlation, Mann-Whitney U test, Kruskal-Wallis test and Intra-class Correlation Coefficient. Alpha level was set at 0.05. The mean ages of the stroke survivors (55.4% males) and their primary informal caregivers (41.9% males) were 50.14 ± 12.24 and 31.93 ± 10.9 years respectively. There was no significant difference in the community reintegration (CR) scores as rated by stroke survivors and their primary informal caregivers (p > 0.05). The correlations between stroke survivors' and primary informal caregivers' rated CR scores were all adequate and acceptable (ICC = 0.602-0.917). The discrepancy in the total CR scores between the two ratings was significantly influenced by primary informal caregivers' educational attainment (k = 13.15; p < 0.01). The I-MSCRIM has acceptable caregiver-proxy reliability among Igbo stroke survivors in South-East Nigeria. This suggests that primary informal caregivers of stroke survivors can reliably estimate the CR of their care recipients when I-MSCRIM is administered to them. This will be useful when a stroke survivor cannot respond to I-MSCRIM.

Treatment for Sleep Problems in Children with Autism and Caregiver Spillover Effects.

PubMed

Tilford, J Mick; Payakachat, Nalin; Kuhlthau, Karen A; Pyne, Jeffrey M; Kovacs, Erica; Bellando, Jayne; Williams, D Keith; Brouwer, Werner B F; Frye, Richard E

2015-11-01

Sleep problems in children with autism spectrum disorders (ASD) are under-recognized and under-treated. Identifying treatment value accounting for health effects on family members (spillovers) could improve the perceived cost-effectiveness of interventions to improve child sleep habits. A prospective cohort study (N = 224) was conducted with registry and postal survey data completed by the primary caregiver. We calculated quality of life outcomes for the child and the primary caregiver associated with treatments to improve sleep in the child based on prior clinical trials. Predicted treatment effects for melatonin and behavioral interventions were similar in magnitude for the child and for the caregiver. Accounting for caregiver spillover effects associated with treatments for the child with ASD increases treatment benefits and improves cost-effectiveness profiles.

TREATMENT FOR SLEEP PROBLEMS IN CHILDREN WITH AUTISM AND CAREGIVER SPILLOVER EFFECTS

PubMed Central

Tilford, J. Mick; Payakachat, Nalin; Kuhlthau, Karen; Pyne, Jeffrey M.; Kovacs, Erica; Bellando, Jayne; Williams, D. Keith; Brouwer, Werner; Frye, Richard E.

2015-01-01

Sleep problems in children with autism spectrum disorders (ASD) are under-recognized and under-treated. Identifying treatment value accounting for health effects on family members (spillovers) could improve the perceived cost-effectiveness of interventions to improve child sleep habits. A prospective cohort study (N=224) was conducted with registry and postal survey data completed by the primary caregiver. We calculated quality of life outcomes for the child and the primary caregiver associated with treatments to improve sleep in the child based on prior clinical trials. Predicted treatment effects for melatonin and behavioral interventions were similar in magnitude for the child and for the caregiver. Accounting for caregiver spillover effects associated with treatments for the child with ASD increases treatment benefits and improves cost-effectiveness profiles. PMID:26126749

HIV serostatus and factors related to physical and mental well-being in Latina family AIDS caregivers.

PubMed

Land, Helen; Hudson, Sharon

2002-01-01

In a survey of 154 Latina AIDS caregivers living in Los Angeles, we examined differences in the stress process for those who were HIV seropositive, seronegative, and those with an unknown serostatus. Most caregivers were monolingual, poor, suffered from chronic physical illness unrelated to HIV, and received few services. All three subsamples reached clinical cut-off levels for depression on the brief symptom inventory. In the sample as a whole and in all three groups we examined differences in primary and secondary stressors as predictors of mental and physical well-being; differences in background factors as they relate to mental and physical well-being; and differences in predictive value of various factors that may attenuate the relationship between stress and mental and physical well-being. Models predicting both mental and physical well-being differ across subsamples divided on the basis of serostatus. Based on these findings, we discuss implications for service provision designed to target these underserved Latina AIDS caregivers.

Institutionalization in Taiwan. The role of caregiver gender.

PubMed

Kao, Hsueh-Fen Sabrina

2003-10-01

The role of caregiver gender in the likelihood of institutionalization of Taiwanese older adults was explored in this study. A sample of 78 male and 69 female primary caregivers of elderly patients who had experienced a stroke at least 6 months prior to the study were interviewed. Logistic regression analyses were applied to examine direct and interaction effects of the elderly adult's functioning the caregiver's available resources, the degree of caregiver burden, perceived public opinion toward institutionalization, and precipitating events on the likelihood of institutionalization among Taiwanese male and female caregivers. Women were more likely to institutionalize the older adult for whom they cared. The proposed model correctly predicted the likelihood of institutionalization of an elderly adult based on male versus female caregivers at the 92% level. Perceived public opinion toward institutionalization was the most significant predictor of institutionalization for both genders. Perceived public opinion toward institutionalization has a strong influence on whether or not caregivers institutionalize an elderly relative. This is consistent with Chinese culture in which public opinion has a much stronger effect on individual behavior than in the United States. American concepts of "minding one's own business" do not exist in Taiwan. It is logical that the older adults' level of functioning would predict the likelihood of institutionalization regardless of caregiver gender. In terms of caregiver characteristics, working hours in male caregivers is more predictive, and the quality of the relationship with the older adult was more predictive of institutionalization for female caregivers.

Effectiveness of coping strategies intervention on caregiver burden among caregivers of elderly patients with dementia.

PubMed

Chen, Hui-Mei; Huang, Mei-Feng; Yeh, Yi-Chun; Huang, Wen-Hui; Chen, Cheng-Sheng

2015-03-01

Coping strategies are a potential way to improve interventions designed to manage the caregiver burden of dementia. The purpose of this study was to develop an intervention targeted towards improving coping strategies and to examine its effectiveness on reducing caregiver burden. A controlled study design was used. Fifty-seven caregivers of dementia patients were enrolled. Coping strategies were assessed with the Revised Ways of Coping Checklist (WCCL-R) and caregiver burden was assessed with the Chinese version of the Caregiver Burden Inventory. The participants were randomly divided into two groups. The intervention group was offered a series of five interventions in which problem-solving skills, knowledge of dementia, social resources, and emotional support were taught every 2 weeks, and the control group was telephoned every 2 weeks for the usual clinical management. Two weeks after the end of the intervention, we again administered the WCCL-R and the Caregiver Burden Inventory. Two-way repeated-measure anova was used to evaluate the changes in coping strategies and caregiver burden. Forty-six participants completed the study. No statistically significant differences were noted in the demographic data between the two groups. On the problem-focused coping subscale on the WCCL-R, the intervention group's mean score increased by 3.8 points, and the control group's decreased by 5.1 points (F = 7.988, P = 0.007). On the seeking social support coping subscale on the WCCL-R, the intervention group's mean score increased by 3.8 points, and the control group's decreased by 3.1 points (F = 4.462, P = 0.04). On the Caregiver Burden Inventory, the intervention group's mean score decreased by 7.2 points, and the control group's increased by 2.2 points (F = 6.155, P = 0.017). Psychosocial intervention can help caregivers to adopt more problem-focused and social support coping strategies, which are beneficial in terms of reducing the caregiver

Leisure Activity and Caregiver Involvement in Middle-Aged and Older Adults With Down Syndrome

PubMed Central

Mihaila, Iulia; Hartley, Sigan L.; Handen, Benjamin L.; Bulova, Peter D.; Tumuluru, Rameshwari V.; Devenny, Darlynne A.; Johnson, Sterling C.; Lao, Patrick J.; Christian, Bradley T.

2017-01-01

The present study examined leisure activity and its association with caregiver involvement (i.e., residence and time spent with primary caregiver) in 62 middle-aged and older adults with Down syndrome (aged 30–53 years). Findings indicated that middle-aged and older adults with Down syndrome frequently participated in social and passive leisure activities, with low participation in physical and mentally stimulating leisure activities. Residence and time spent with primary caregiver were associated with participation in physical leisure activity. The findings suggest a need for support services aimed at increasing opportunities for participating in physical and mentally stimulating leisure activity by middle-aged and older adults with Down syndrome. These support services should partner with primary caregivers in order to best foster participation in physical leisure activity. PMID:28375797

Northern Manhattan Hispanic Caregiver Intervention Effectiveness Study: protocol of a pragmatic randomised trial comparing the effectiveness of two established interventions for informal caregivers of persons with dementia

PubMed Central

Luchsinger, José A; Burgio, Louis; Mittelman, Mary; Dunner, Ilana; Levine, Jed A; Kong, Jian; Silver, Stephanie; Ramirez, Mildred; Teresi, Jeanne A

2016-01-01

Introduction The prevalence of dementia is increasing without a known cure, resulting in an increasing number of informal caregivers. Caring for a person with dementia results in increased stress and depressive symptoms. There are several behavioural interventions designed to alleviate stress and depressive symptoms in caregivers of persons with dementia with evidence of efficacy. Two of the best-known interventions are the New York University Caregiver Intervention (NYUCI) and the Resources for Enhancing Alzheimer's Caregivers Health (REACH). The effectiveness of the NYUCI and REACH has never been compared. There is also a paucity of data on which interventions are more effective in Hispanics in New York City. Thus, we proposed the Northern Manhattan Hispanic Caregiver intervention Effectiveness Study (NHiCE), a pragmatic clinical trial designed to compare the effectiveness of adaptations of the NYUCI and the REACH in informal Hispanic caregivers of persons with dementia in New York City. Methods and analysis NHiCE is a 6-month randomised controlled trial comparing the effectiveness of adaptations of the NYUCI and REACH among 200 Hispanic informal adult caregivers of persons with dementia. The planned number of sessions of the NYUCI and REACH are similar. The primary outcome measures are changes from baseline to 6 months in the Zarit Caregiver Burden Scale and Geriatric Depression Scale. Our primary approach to analyses will be intent-to-treat. The primary analyses will use mixed random effects models, and a full information maximum likelihood approach, with sensitivity analyses using generalised estimating equation. Ethics and dissemination NHiCE is approved by the Institutional Review Board of Columbia University Medical Center (protocol AAAM5150). A Data Safety Monitoring Board monitors the progress of the study. Dissemination will include reports of the characteristics of the study participants, as well as a report of the results of the clinical trial. Trial

Substantial changes in mastery perceptions of dementia caregivers with the placement of a care recipient.

PubMed

Infurna, Frank J; Gerstorf, Denis; Zarit, Steven H

2013-03-01

The current study examined how a key component of caregiving stress processes, global mastery perceptions, changes with placing the care recipient in a nursing home or institution. We also explored the role of primary stressors in accounting for mastery changes with placement and whether characteristics of the caregiver and care recipient moderate reactions to placement. We applied multiphase growth curve models to prospective longitudinal data from 271 caregivers in the Caregiver Stress and Coping Study who experienced placement of their care recipient. Using a time-to/from-placement metric, we found that caregivers typically experienced declines in mastery preceding placement, followed by a significant increase within 1 year after placement and further increases thereafter. Corresponding changes in primary stressors (role overload) mediated the placement-related increase in mastery. Caregivers who reported more depressive symptoms and activities of daily living/instrumental activities of daily living dependencies of the care recipient were more likely to experience larger placement-related increases in mastery perceptions. Our findings suggest that placement alters psychological resources of caregivers and this effect is driven by corresponding changes in primary stressors. Findings also underscore the importance of examining change processes across salient life events and transitions.

Grandmothers and Caregiving to Grandchildren: Continuity, Change, and Outcomes over 24 Months

ERIC Educational Resources Information Center

Musil, Carol M.; Gordon, Nahida L.; Warner, Camille B.; Zauszniewski, Jaclene A.; Standing, Theresa; Wykle, May

2011-01-01

Purpose: Transitions in caregiving, such as becoming a primary caregiver to grandchildren or having adult children and grandchildren move in or out, may affect the well-being of the grandmother. Design and Methods: This report describes caregiving patterns at 3 time points over 24 months in a sample of 485 Ohio grandmothers and examines the…

Associations Between Orphan and Vulnerable Child Caregiving, Household Wealth Disparities, and Women's Overweight Status in Three Southern African Countries Participating in Demographic Health Surveys.

PubMed

Kanamori, Mariano J; Carter-Pokras, Olivia D; Madhavan, Sangeetha; Lee, Sunmin; He, Xin; Feldman, Robert H

2015-08-01

This study examines whether orphan and vulnerable children (OVC) primary caregivers are facing absolute household wealth (AWI) disparities, the association between AWI and women's overweight status, and the modifying role of OVC primary caregiving status on this relationship. Demographic Health Surveys data (2006-2007) from 20 to 49 year old women in Namibia (n = 6,305), Swaziland (n = 2,786), and Zambia (n = 4,389) were analyzed using weighted marginal means and logistic regressions. OVC primary caregivers in Namibia and Swaziland had a lower mean AWI than other women in the same country. In Zambia, OVC primary caregivers had a lower mean AWI score than non-primary caregivers living with an OVC but a higher mean AWI score than non-OVC primary caregivers. In Swaziland and Zambia, even small increases in household wealth were associated with higher odds for being overweight regardless of women's caregiving status. Only in Namibia, OVC primary caregiving modified the effect of the previous association. Among Namibian OVC primary caregivers, women who had at least medium household wealth (4 or more AWI items) were more likely to be overweight than their poorest counterparts (0 or 1 AWI items). OVC primary caregivers are facing household wealth disparities as compared to other women from their communities. Future studies/interventions should consider using population-based approaches to reach women from every household wealth level to curb overweight in Swaziland and Zambia and to focus on specific household wealth characteristics that are associated with OVC primary caregivers' overweight status in Namibia.

A path analysis of patient dependence and caregiver burden in Alzheimer's disease.

PubMed

Garre-Olmo, J; Vilalta-Franch, J; Calvó-Perxas, L; Turró-Garriga, O; Conde-Sala, L; López-Pousa, S

2016-07-01

The concept of dependence has been proposed as an integrative measure to assess the progression of Alzheimer's disease (AD).This study aimed to investigate the association of patient's dependence level with the caregiver burden within a general theoretical model that includes other well-established determinants. Observational and cross-sectional multicenter study. The sample consisted of patients with AD recruited in outpatient consultation offices by a convenience sampling procedure stratified by dementia severity. Cognitive and functional status, behavioral disturbances, dependence level, medical comorbidities, and caregiver burden were assessed by using standardized instruments. A path analysis was used to test the hypothesized relationships between the caregiver burden and its determinants, including the level of dependence. The sample consisted of 306 patients (33.3% mild, 35.9% moderate, 30.7% severe), the mean age was 78.5 years (SD = 7.8), and 66.2% were women. The model fit was acceptable and explained 29% of the caregiver burden variance. Primary stressors were the level of dependence and the distress related to behavioral disturbances. Caregiver's age, gender, and co-residence with the patient were the contextual factors related to caregiver burden. The job status of the caregiver was a significant secondary stressor, functional disability was indirectly associated with caregiver burden via dependence, and frequency of behavioral disturbances was indirectly associated with the caregiver burden via distress. Dependence was, apart from behavioral disturbances, the most important primary stressor directly related to caregiver burden irrespective of the disease severity.

Family Typology and Appraisal of Preschoolers' Behavior by Female Caregivers.

PubMed

Coke, Sallie P; Moore, Leslie C

2015-01-01

Children with vulnerable caregivers may be at risk for being labeled as having behavior problems when typical behaviors are viewed by their caregivers as problematic, and therefore, research examining the accuracy of the caregivers' perceptions of children's behaviors is needed. The purpose of this study was to use the resiliency model of family stress, adjustment, and adaptation as the theoretical foundation to explore family factors associated with the primary female caregiver's appraisal of her child's behavior, the extent to which the primary female caregiver's appraisal of her child's behavior may be distorted, and the child's level of risk of having a behavioral problem. A cross-sectional, correlational design was used. Data were collected from female caregivers of preschoolers (N = 117). Family factors, demographic characteristics, comfort in parenting, appraisal of behaviors, daily stress, parenting stress, depressive symptoms, social support, ratings of children's behaviors, and distortion in the ratings were measured. Associations were studied using ANOVA, ANCOVA, and chi-squared tests. Family typology was not associated with the female caregiver's appraisals of her child's behavior (p = .31). Distortion of the caregiver's rating of her child's behavior was not associated with family hardiness (high or low; p = .20.) but was associated with having a child with an elevated risk for behavioral problems (p < .01). Families classified as vulnerable were significantly more likely to have a child with elevated risks of having behavioral problems than families classified as secure or regenerative. Findings emphasized the association between family factors (hardiness and coherence) and young children's behaviors. Additional research is needed into how these factors affect the young child's behavior and what causes a caregiver to have a distorted view of her child's behavior.

Child characteristics, caregiver characteristics, and environmental factors affecting the quality of life of caregivers of children with cerebral palsy.

PubMed

Tseng, Mei-Hui; Chen, Kuan-Lin; Shieh, Jeng-Yi; Lu, Lu; Huang, Chien-Yu; Simeonsson, Rune J

2016-12-01

The study aimed to investigate comprehensively the determinants of the quality of life (QOL) of caregivers of children with cerebral palsy (CP) based on the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY). A total of 167 children with CP (mean age 9.06 years, SD 2.61 years) and their caregivers (mean age 40.24 years, SD 5.43 years) participated in this study. The QOL of caregivers was measured with the World Health Organization Quality of Life-BREF-Taiwan version (WHOQOL-BREF-TW). The potential determinants of QOL were collected, including child characteristics, caregiver characteristics, and environmental factors from all dimensions of the ICF-CY and analysed using multiple regression models. Four multiple regression models revealed that determinants of the QOL of caregivers of children with CP was multidimensional, encompassing child characteristics (age, type of CP, fine motor impairment, other diseases, behaviour and emotions, visual impairment, hearing impairment), caregiver characteristics (general mental health, parenting stress, marital status, family coping patterns, and socio-economic status), and environmental factors (child's medication, school setting, and current rehabilitation service, caregiver's spouse's age, family life impacts, and domestic helper). Knowledge of the determinants of QOL could serve as a guide in a holistic approach to evaluation and intervention and help plan interventions targeted at these determinants to improve the QOL of caregivers of children with CP. Implications for Rehabilitation Caregivers of children with CP had lower QOL, except the environment QOL. The QOL determinants of caregivers of children with CP are multidimensional, including child characteristics, caregiver characteristics, and environmental factors. In addition to child characteristics of severity of fine motor impairments and emotional and behavioural problems, caregiver characteristics of general mental

Transitioning from caregiver to visitor in a long-term care facility: the experience of caregivers of people with dementia.

PubMed

Crawford, K; Digby, R; Bloomer, M; Tan, H; Williams, A

2015-01-01

Transitioning from the primary caregiver to the visitor in a long-term care facility may be challenging for the caregiver; they are required to surrender their caring duties to the medical and nursing staff. The aim of this study was to explore the experiences of caregivers during their transition from day-to-day caregiver of a person with dementia to a visitor in a long-term care facility. This study utilised a qualitative descriptive design. Twenty caregivers of people with dementia were recruited from the one Aged Rehabilitation and Geriatric Evaluation and Management facility, located in Victoria, Australia. Semi-structured interviews were used to explore the caregiver's experiences. Interviews were analysed using thematic analysis. The interview data revealed that the participants were undergoing similar experiences. The findings revealed that it was difficult for the caregiver to transition to their new role of visitor; negative reactions of grief, loss of motivation and loneliness were also coupled with positive feelings of relief and the reassurance that their relative or friend would be well cared for and safe within the long-term care facility. The findings offer insight into the experiences felt by caregivers when their relative or friend with dementia is admitted to hospital. Implications of this study include the need to improve the transition process for the caregiver by allowing them to be involved in the decision-making process, keeping them informed of care decisions, and importantly, providing emotional support to help the caregiver positively adapt to this transition.

Korean version of the Revised Caregiving Appraisal Scale: a translation and validation study.

PubMed

Lee, JuHee; Friedmann, Erika; Picot, Sandra J; Thomas, Sue Ann; Kim, Cho Ja

2007-08-01

This paper is a report of a study to examine the reliability and validity of a Korean version of the Revised Caregiving Appraisal Scale with Korean caregivers of older stroke survivors. The Revised Caregiving Appraisal Scale was developed in the United States of America for an American English-speaking population to measure primary caregivers' appraisals of potential stressors and the efficacy of their coping efforts related to caregiving experiences. Using the back-translation method, the instrument was translated into Korean. The Korean version of the Revised Caregiving Appraisal Scale was self-administered by 147 primary family caregivers recruited from three outpatient clinics and two home health agencies in Korea. The study was conducted in 2005. In this sample, Cronbach's alpha for the total scale was 0.86. Reliability coefficients for each of the five subscales ranged from 0.40 to 0.85. Two subscales, burden and satisfaction, showed good reliability; one subscale, impact, showed marginally acceptable reliability; two subscales, mastery and demand, had low reliability. Principal components factor analysis of the Korean version of the Revised Caregiving Appraisal Scale yielded six factors. Except for the mastery domain, which was divided into two factors, the other factors were similar to those in the original scale. The Korean version of the Revised Caregiving Appraisal Scale had adequate reliability and validity in a sample of Korean caregivers of stroke survivors. It can be used to assess the impact of caregiving and interventions on Korean caregiver attitudes. Further studies are needed with different categories of caregiver.

The targeting of nutritionally at-risk children attending a primary health care facility in the Western Cape Province of South Africa.

PubMed

Schoeman, S E; Hendricks, M K; Hattingh, S P; Benadé, A J S; Laubscher, J A; Dhansay, M A

2006-12-01

The aim of this study was to determine the practices of primary health care (PHC) nurses in targeting nutritionally at-risk infants and children for intervention at a PHC facility in a peri-urban area of the Western Cape Province of South Africa. Nutritional risk status of infants and children <6 years of age was based on criteria specified in standardised nutrition case management guidelines developed for PHC facilities in the province. Children were identified as being nutritionally at-risk if their weight was below the 3rd centile, their birth weight was less than 2500 g, and their growth curve showed flattening or dropping off for at least two consecutive monthly visits. The study assessed the practices of nurses in identifying children who were nutritionally at-risk and the entry of these children into the food supplementation programme (formerly the Protein-Energy Malnutrition Scheme) of the health facility. Structured interviews were conducted with nurses to determine their knowledge of the case management guidelines; interviews were also conducted with caregivers to determine their sociodemographic status. One hundred and thirty-four children were enrolled in the study. The mean age of their caregivers was 29.5 (standard deviation 7.5) years and only 47 (38%) were married. Of the caregivers, 77% were unemployed, 46% had poor household food security and 40% were financially dependent on non-family members. Significantly more children were nutritionally at-risk if the caregiver was unemployed (54%) compared with employed (32%) (P=0.04) and when there was household food insecurity (63%) compared with household food security (37%) (P<0.004). Significantly more children were found not to be nutritionally at-risk if the caregiver was financially self-supporting or supported by their partners (61%) compared with those who were financially dependent on non-family members (35%) (P=0.003). The weight results of the nurses and the researcher differed significantly (P

Impact of Spina Bifida on Parental Caregivers: Findings from a Survey of Arkansas Families

ERIC Educational Resources Information Center

Grosse, Scott D.; Flores, Alina L.; Ouyang, Lijing; Robbins, James M.; Tilford, John M.

2009-01-01

The well-being of caregivers of children with spina bifida and other conditions is an important topic. We interviewed the primary caregivers of 98 children aged 0-17 years with spina bifida sampled from a population-based birth defects registry in Arkansas and the caregivers of 49 unaffected children. Measures of caregiver well-being were compared…

Mental Health Service Use by Young People: The Role of Caregiver Characteristics

PubMed Central

Gronholm, Petra C.; Ford, Tamsin; Roberts, Ruth E.; Thornicroft, Graham; Laurens, Kristin R.; Evans-Lacko, Sara

2015-01-01

Aims Many children and adolescents experiencing mental health problems do not receive appropriate care. Strategies to encourage appropriate access to services might be improved by a more detailed understanding of service use determinants within this group. In view of caregivers’ key role in young people’s pathways to care, this study aimed to advance understanding of caregiver-related characteristics that influence service use among young people. Methods We interviewed 407 primary caregivers of young people aged 9-18 years, recruited from a Greater London (United Kingdom) community sample. Caregivers reported on young people’s service use in health care sector and/or education settings, and caregivers’ intended stigmatising behaviours, help-seeking attitudes, and personal service use. Logistic regression analyses examined the relationship between these caregiver characteristics and young people’s service use, controlling for young people’s clinical and socio-demographic factors. Results Caregivers’ intended stigmatising behaviours in particular exerted a strong influence on young people’s service use within each service setting. The impact of this characteristic interacted with caregivers’ service use in influencing young people’s service use across health care and education settings and health care settings specifically. For young people’s service use within education settings, caregivers’ intended stigmatising behaviours score had a main effect. Conclusions This study highlights the key role caregivers’ attitudes and experiences hold in young people’s service use. The findings indicate that strategies aiming to bridge the gap between young people’s service needs and utilisation might be improved by targeting stigma amongst caregivers. PMID:25811867

Caregiver Stress

MedlinePlus

... Selector Search Alzheimer’s Association Caregiving En Español Caregiver Stress Caregiver Stress Caregiver Stress Share or Print this ... Tips to manage stress 10 symptoms of caregiver stress Denial about the disease and its effect on ...

Positive Aspects of Caregiving and Caregiver Burden: A Study of Caregivers of Patients With Dementia.

PubMed

Abdollahpour, Ibrahim; Nedjat, Saharnaz; Salimi, Yahya

2018-01-01

Now positive aspect of caregiving (PAC) is well-defined as caregiver gains, satisfaction, meaningful life, and enhanced family relationship. The adjusted association of PAC and caregiver burden is not well acknowledged. This study investigated the association of caregiver burden and PAC adjusting for potential confounders. This was a cross-sectional study that recruited 132 caregivers. A linear regression model with PAC was used to estimate the adjusted associations. The caregiver burden was negatively associated with PAC (mean difference in PAC per a 1-unit increase in caregiver burden = -0.12, 95% confidence interval: -0.18 to -0.056; P < .001). This association remained after adjustment for caregivers' age and marital status as well as patients' dependency level. The negative significant association of caregiver burden with PAC reinforces the need for interventional and/or educational programs aiming at decreasing the overall imposed burden. This can play an important role in improving caregivers' general health and quality of life.

More caregiving, less working: caregiving roles and gender difference.

PubMed

Lee, Yeonjung; Tang, Fengyan

2015-06-01

This study examined the relationship of caregiving roles to labor force participation using the nationally representative data from the Health and Retirement Study. The sample was composed of men and women aged 50 to 61 years (N = 5,119). Caregiving roles included caregiving for spouse, parents, and grandchildren; a summary of three caregiving roles was used to indicate multiple caregiving roles. Bivariate analysis using chi-square and t tests and binary logistic regression models were applied. Results show that women caregivers for parents and/or grandchildren were less likely to be in the labor force than non-caregivers and that caregiving responsibility was not related to labor force participation for the sample of men. Findings have implication for supporting family caregivers, especially women, to balance work and caregiving commitments. © The Author(s) 2013.

Neuropsychiatric symptoms and caregiver's burden in Parkinson's disease.

PubMed

Martinez-Martin, Pablo; Rodriguez-Blazquez, Carmen; Forjaz, Maria João; Frades-Payo, Belén; Agüera-Ortiz, Luis; Weintraub, Daniel; Riesco, Ana; Kurtis, Monica M; Chaudhuri, Kallol Ray

2015-06-01

In Parkinson's disease (PD), neuropsychiatric symptoms (NPS) can be particularly burdensome for caregivers. The main goal of this study was to assess the impact of NPS, assessed by means of a new specific scale, on caregiver burden. A sample of 584 pairs of PD patients and their primary caregivers was studied. Patients' NPS were measured with the Scale for Evaluation of Neuropsychiatric Disorders in PD (SEND-PD), and the Zarit Caregiver Burden Inventory was used to quantify caregiver burden. Three linear regression models were built to check factors associated with caregiver burden, one for the total sample and two for subgroups stratified by the presence of dementia. The most frequent NPS were depression (in 66% of the sample), anxiety (65%) and mental fatigue (57%). Patients with dementia (n = 94; 16% of sample) consistently presented more NPS than patients without dementia (p < 0.001). On linear regression models, the main determinants of caregiver burden (for the total sample and the sample of patients without dementia) were SEND-PD dimensions mood/apathy and psychosis, PD-related disability and disease duration. For patients with dementia, the only significant caregiver burden determinants were SEND-PD psychosis and mood/apathy subscale scores. NPS in PD are highly associated with and are determinants of caregiver burden, and are more prevalent and burdensome in patients with dementia. Detailed assessment and specific interventions aimed at NPS could alleviate caregiver burden. Copyright © 2015 Elsevier Ltd. All rights reserved.

Characteristics and mental health of Hispanic dementia caregivers in New York City.

PubMed

Luchsinger, José A; Tipiani, Dante; Torres-Patiño, Gabriela; Silver, Stephanie; Eimicke, Joseph P; Ramirez, Mildred; Teresi, Jeanne; Mittelman, Mary

2015-09-01

Dementia prevalence and related caregiving burden are increasing, particularly among Hispanics. We studied the characteristics and mental health of Hispanic caregivers in New York City. We recruited 139 Hispanic family caregivers. We collected data on sociodemographic characteristics and predictors of caregiver burden, measured with the Zarit Caregiver Burden Scale, and depressive symptoms, measured with the Geriatric Depression Scale. The mean age was 59.3 ± 10.4 years. The majority of caregivers were daughters and earned less than US$30 000 a year. In multivariate analyses with linear regression, lower satisfaction with social networks was associated with higher caregiver burden and a greater number of depressive symptoms. Higher dementia severity was associated with higher caregiver burden, while higher caregiver comorbidities were associated with higher depressive symptoms. Caregiver comorbidities and satisfaction with social support may be targets for intervention that could improve caregiver burden and depressive symptoms among Hispanic caregivers. © The Author(s) 2015.

The TECH@HOME study, a technological intervention to reduce caregiver burden for informal caregivers of people with dementia: study protocol for a randomized controlled trial.

PubMed

Malmgren Fänge, Agneta; Schmidt, Steven M; Nilsson, Maria H; Carlsson, Gunilla; Liwander, Anna; Dahlgren Bergström, Caroline; Olivetti, Paolo; Johansson, Per; Chiatti, Carlos

2017-02-09

It is estimated that global dementia rates will more than triple by 2050 and result in a staggering economic burden on families and societies. Dementia carries significant physical, psychological and social challenges for individuals and caregivers. Informal caregiving is common and increasing as more people with dementia are being cared for at home instead of in nursing homes. Caregiver burden is associated with lower perceived health, lower social coherence, and increased risk of morbidity and mortality. The aim of this trial is to evaluate the effects of information and communication technology (ICT) on caregiver burden among informal caregivers of people with dementia by reducing the need for supervision. This randomized controlled trial aims to recruit 320 dyads composed of people with dementia living in community settings and their primary informal caregivers. In the intervention group, people with dementia will have a home monitoring kit installed in their home while dyads in the control group will receive usual care. The ICT kit includes home-leaving sensors, smoke and water leak sensors, bed sensors, and automatic lights that monitor the individual's behavior. Alerts (text message and/or phone call) will be sent to the caregiver if anything unusual occurs. All study dyads will receive three home visits by project administrators who have received project-specific training in order to harmonize data collection. Home visits will take place at enrollment and 3 and 12 months following installation of the ICT kit. At every home visit, a standardized questionnaire will be administered to all dyads to assess their health, quality of life and resource utilization. The primary outcome of this trial is the amount of informal care support provided by primary informal caregivers to people with dementia. This is the first randomized controlled trial exploring the implementation of ICT for people with dementia in a large sample in Sweden and one of the first at the

Gender identity in informal care: impact on health in Spanish caregivers.

PubMed

del Río-Lozano, María; García-Calvente, María del Mar; Marcos-Marcos, Jorge; Entrena-Durán, Francisco; Maroto-Navarro, Gracia

2013-11-01

We examined the influence of gender identity on men's and women's perceptions of assuming the caregiver role to identify different coping strategies and the effects on caregiver health and quality of life. The study, performed in Andalusia, Spain, was based on a sociological analysis of the narratives produced during semistructured interviews with primary informal caregivers (16 men and 16 women) of different profiles. We observed a cultural assumption that women should assume the caregiver role and found that women shouldered the bulk of caregiving responsibilities and did not usually seek support. This might explain the high prevalence of chronic health disorders, stress, anxiety, depression, neglect of health, and social isolation we observed among women caregivers. Because the caregiver role was not socially imposed on men in our setting, men caregivers adopted a flexible attitude and tended to seek external support before their health and quality of life were seriously affected.

The relationship between family obligation and religiosity on caregiving.

PubMed

Epps, Fayron

2014-01-01

The purpose of this study was to examine the relationship between family obligation and religiosity on the positive appraisal of caregiving among African-American, Hispanic and non-Hispanic Caucasian family caregivers of older adults. Roy's adaptation model guided formulation of the aims and study design. A cross-sectional, correlational study design was employed to examine the relationship amongst variables for the family caregiver participants. Study participants (N = 69) completed a demographic tool and four instruments the: (1) Katz index, (2) obligation scale, (3) Duke University religion index, and (4) positive appraisal of care scale. There was a significant correlation between family obligation and positive appraisal of caregiving. However, there was no relationship between the family caregiver's religiosity and positive appraisal of caregiving overall. Demographic variables were also examined to show a higher marginal mean for Hispanic primary caregivers in relation to the positive appraisal of caregiving. Future studies should consider replicating these findings in a larger sample to provide health care professionals with substantial evidence to incorporate culturally sensitive interventions aimed at promoting positive outcomes and healthy family behaviors. Copyright © 2014 Mosby, Inc. All rights reserved.

Impact of Noncaregiving-Related Stressors on Informal Caregiver Outcomes.

PubMed

Austrom, Mary Guerriero; Lu, Yvonne Yueh-Feng; Perkins, Anthony J; Boustani, Malaz; Callahan, Christopher M; Hendrie, Hugh C

2014-08-01

Caregivers of persons with dementia are stressed. Stressors not related to care recipients' needs impact caregiver outcomes, yet are seldom reported. The purpose of this study was to report the most stressful events experienced by spouse caregivers of older adults with Alzheimer s disease during a 6-month period. 31 caregivers completed the Most Stressful Event form, Patient Health Questionnaire (PHQ-9) and the Revised Memory Behavioral Problem Checklist (R-MBPC). Fisher's exact test and two-sample t-test were used to compare Most Stressful Events between caregivers. ANOVA model tested whether the PHQ-9 and R-MBPC subscales differed by stressor. Caregivers reported no stressors 21.5% of the time, 1-2 stressors 25% of the time, and 3 stressors 53% of the time with 318 stressors reported in total. Care recipient needs (30.2%), caregiver needs (26.7%), and decision-making (16.7%) were the most frequently reported stressors. Using a mixed effects model, there were associations between the Most Stressful Events and depression (p = 0.016), mobility (p = 0.024) and caregiver issues (p = 0.009) subscales of R-MBPC. Results can be used to develop targeted intervention and support strategies for spouse caregivers experiencing non-caregiving related stressorsas well as the traditional challenges with caregiving related issues. © The Author(s) 2014.

Substantial Changes in Mastery Perceptions of Dementia Caregivers With the Placement of a Care Recipient

PubMed Central

2013-01-01

Objectives. The current study examined how a key component of caregiving stress processes, global mastery perceptions, changes with placing the care recipient in a nursing home or institution. We also explored the role of primary stressors in accounting for mastery changes with placement and whether characteristics of the caregiver and care recipient moderate reactions to placement. Method. We applied multiphase growth curve models to prospective longitudinal data from 271 caregivers in the Caregiver Stress and Coping Study who experienced placement of their care recipient. Results. Using a time-to/from-placement metric, we found that caregivers typically experienced declines in mastery preceding placement, followed by a significant increase within 1 year after placement and further increases thereafter. Corresponding changes in primary stressors (role overload) mediated the placement-related increase in mastery. Caregivers who reported more depressive symptoms and activities of daily living/instrumental activities of daily living dependencies of the care recipient were more likely to experience larger placement-related increases in mastery perceptions. Discussion. Our findings suggest that placement alters psychological resources of caregivers and this effect is driven by corresponding changes in primary stressors. Findings also underscore the importance of examining change processes across salient life events and transitions. PMID:22956053

The burden on informal caregivers of people with bipolar disorder.

PubMed

Ogilvie, Alan D; Morant, Nicola; Goodwin, Guy M

2005-01-01

studies into caregiver burden in bipolar disorder may largely reflect experiences in the US Veterans Affairs health service, but the findings may be limited in their generalizability. Nevertheless, available data suggest that caregiver burden is high and largely neglected in bipolar disorder. Clinically effective, well-targeted and practically viable interventions are needed. However, services cannot be enhanced on a rational basis without an improved understanding and capacity to measure and target caregiver burden the impact of any change in services be evaluated.

Targetable genetic features of primary testicular and primary central nervous system lymphomas

PubMed Central

Chapuy, Bjoern; Roemer, Margaretha G. M.; Stewart, Chip; Tan, Yuxiang; Abo, Ryan P.; Zhang, Liye; Dunford, Andrew J.; Meredith, David M.; Thorner, Aaron R.; Jordanova, Ekaterina S.; Liu, Gang; Feuerhake, Friedrich; Ducar, Matthew D.; Illerhaus, Gerald; Gusenleitner, Daniel; Linden, Erica A.; Sun, Heather H.; Homer, Heather; Aono, Miyuki; Pinkus, Geraldine S.; Ligon, Azra H.; Ligon, Keith L.; Ferry, Judith A.; Freeman, Gordon J.; van Hummelen, Paul; Golub, Todd R.; Getz, Gad; Rodig, Scott J.; de Jong, Daphne; Monti, Stefano

2016-01-01

Primary central nervous system lymphomas (PCNSLs) and primary testicular lymphomas (PTLs) are extranodal large B-cell lymphomas (LBCLs) with inferior responses to current empiric treatment regimens. To identify targetable genetic features of PCNSL and PTL, we characterized their recurrent somatic mutations, chromosomal rearrangements, copy number alterations (CNAs), and associated driver genes, and compared these comprehensive genetic signatures to those of diffuse LBCL and primary mediastinal large B-cell lymphoma (PMBL). These studies identify unique combinations of genetic alterations in discrete LBCL subtypes and subtype-selective bases for targeted therapy. PCNSLs and PTLs frequently exhibit genomic instability, and near-uniform, often biallelic, CDKN2A loss with rare TP53 mutations. PCNSLs and PTLs also use multiple genetic mechanisms to target key genes and pathways and exhibit near-uniform oncogenic Toll-like receptor signaling as a result of MYD88 mutation and/or NFKBIZ amplification, frequent concurrent B-cell receptor pathway activation, and deregulation of BCL6. Of great interest, PCNSLs and PTLs also have frequent 9p24.1/PD-L1/PD-L2 CNAs and additional translocations of these loci, structural bases of immune evasion that are shared with PMBL. PMID:26702065

Conceptual challenges in the study of caregiver-care recipient relationships.

PubMed

Lingler, Jennifer Hagerty; Sherwood, Paula R; Crighton, Margaret H; Song, Mi-Kyung; Happ, Mary Beth

2008-01-01

In the literature on family caregiving, care receiving and caregiving are generally treated as distinct constructs, suggesting that informal care and support flow in a unidirectional manner from caregiver to care recipient. Yet, informal care dynamics are fundamentally relational and often reciprocal, and caregiving roles can be complex and overlapping. To illustrate ways care dynamics may depart from traditional notions of dyadic unidirectional family caregiving and to stimulate a discussion of the implications of complex relational care dynamics for caregiving science. Exemplar cases of informal care dynamics were drawn from three ongoing and completed investigations involving persons with serious illness and their family caregivers. The selected cases provide examples of three unique, but not uncommon, care exchange patterns: (a) care dyads who are aging, are chronically ill, and who compensate for one another's deficits in reciprocal relationships; (b) patients who present with a constellation of family members and other informal caregivers, as opposed to one primary caregiver; and (c) family care chains whereby a given individual functions as a caregiver to one relative or friend and care recipient to another. These cases illustrate such phenomena as multiple caregivers, shifting and shared caregiving roles, and care recipients as caregivers. As caregiving science enters a new era of complexity and maturity, there is a need for conceptual and methodological approaches that acknowledge, account for, and support the complex, web-like nature of family caregiving configurations. Research that contributes to, and is informed by, a broader understanding of the reality of family caregiving will yield findings that carry greater clinical relevance than has been possible previously.

Effects of Guided Care on Family Caregivers

ERIC Educational Resources Information Center

Wolff, Jennifer L.; Giovannetti, Erin R.; Boyd, Cynthia M.; Reider, Lisa; Palmer, Sara; Scharfstein, Daniel; Marsteller, Jill; Wegener, Stephen T.; Frey, Katherine; Leff, Bruce; Frick, Kevin D.; Boult, Chad

2010-01-01

Purpose: Guided Care (GC) is a model of health care for multimorbid older adults that is provided by a registered nurse who works with the patients' primary care physician (PCP). The purpose of this study was to determine whether GC improves patients' primary caregivers' depressive symptoms, strain, productivity, and perceptions of the quality of…

From spouse to caregiver and back: a grounded theory study of post-intensive care unit spousal caregiving.

PubMed

Ågård, Anne Sophie; Egerod, Ingrid; Tønnesen, Else; Lomborg, Kirsten

2015-08-01

To explore the challenges and caring activities of spouses of intensive care unit survivors during the first year of patient recovery. Every year, millions of people globally are discharged from an intensive care unit after critical illness to continue treatment, care and rehabilitation in general hospital wards, rehabilitation facilities and at home. Consequently, millions of spouses become informal caregivers. Little is known, however, about the concrete challenges spouses face in post-intensive care unit everyday life. Explorative, qualitative grounded theory study. Participants were spouses of intensive care unit survivors. The study was undertaken in Denmark in 2009-2010. Data consisted of 35 semi-structured dyad interviews at 3 and 12 months post-intensive care unit discharge, two group interviews with patients and two with spouses. 'Shifting their role from spouse to caregiver and back' was identified as the core category of the study. The role shifts progressed in a dynamic process involving four elements: (1) committing to caregiving; (2) acquiring caregiving skills; (3) negotiating level of caregiving and (4) gradually leaving the caregiver role. Post-ICU caregiving comprised five patient dimensions: observing, assisting, coaching, advocating and managing activities. Spouses play a vital and multifaceted role in post-intensive care unit recovery. The findings can inform healthcare professionals in their efforts to prepare intensive care unit patients' families for the time following intensive care unit and hospital discharge. Hospital staff, rehabilitation experts and primary care professionals must acknowledge spouses' important contribution from intensive care unit admission throughout recovery. © 2015 John Wiley & Sons Ltd.

The Effects of Caregiving Resources on Perceived Health among Caregivers

PubMed Central

Hong, Michin; Harrington, Donna

2016-01-01

This study examined how various types of resources influence perceived health of caregivers. Guided by the conservation of resources theory, a caregiver health model was built and tested using structural equation modeling. The caregiver health model consisted of caregiving situations (functional limitations and cognitive impairments of older adults and caregiving time), resources (financial resources, mastery, social support, family harmony, and service utilization), caregiver burden, and perceived health of caregivers. The sample included 1,837 unpaid informal caregivers drawn from the 2004 National Long-Term Caregiver Survey. The model fit indices indicated that the first structural model did not fit well; however, the revised model yielded an excellent model fit. More stressful caregiving situations were associated with fewer resources and higher burden, whereas greater resources were associated with lower burden and better perceived health of caregivers. The results suggest explicit implications for social work research and practice on how to protect the health of caregivers. PMID:29206951

The Effects of Caregiving Resources on Perceived Health among Caregivers.

PubMed

Hong, Michin; Harrington, Donna

2016-08-01

This study examined how various types of resources influence perceived health of caregivers. Guided by the conservation of resources theory, a caregiver health model was built and tested using structural equation modeling. The caregiver health model consisted of caregiving situations (functional limitations and cognitive impairments of older adults and caregiving time), resources (financial resources, mastery, social support, family harmony, and service utilization), caregiver burden, and perceived health of caregivers. The sample included 1,837 unpaid informal caregivers drawn from the 2004 National Long-Term Caregiver Survey. The model fit indices indicated that the first structural model did not fit well; however, the revised model yielded an excellent model fit. More stressful caregiving situations were associated with fewer resources and higher burden, whereas greater resources were associated with lower burden and better perceived health of caregivers. The results suggest explicit implications for social work research and practice on how to protect the health of caregivers. © 2016 National Association of Social Workers.

Neuropsychiatric symptoms as the main determinant of caregiver burden in Alzheimer’s disease

PubMed Central

Kochhann, Renata; Borba, Ericksen; Cerveira, Maria Otília; Onyszko, Diego; de Jesus, Alyne; Forster, Letícia; Franciscatto, Luisa; Godinho, Cláudia; Camozzato, Ana Luiza; Chaves, Márcia Lorena F.

2011-01-01

Caregiver burden is common in Alzheimer’s disease (AD), decreasing the quality of life among caregivers and patients. Projections of aging and aging-related diseases such as AD in developing countries justify additional data about this issue because people living in these countries have shown similarly high levels of caregiver strain as in the developed world. Objective The aim of this study was to analyze the association of AD caregivers’ burden with patients’ neuropsychiatric symptoms (NPS), cognitive status, severity of dementia, functional capacity, caregiver sociodemographic characteristics, and the characteristics of care provided by caregivers. Methods A cross-sectional study was conducted in a sample of 39 consecutive AD patients and their primary caregivers. NPS were evaluated using the Neuropsychiatric Inventory (NPI). Severity of dementia was assessed with the Clinical Dementia Rating (CDR) scale. Functional capacity was assessed using the Katz and Lawton scales. The burden level was rated using the Burden Interview (BI). Sociodemographic characteristics of caregivers and the characteristics of care provided by them were evaluated. The Mann-Whitney U-test, Kruskal-Wallis test and Spearman’s rho coefficient were performed. Results The BI had a moderate correlation with NPI intensity (rho=0.563), p<001. Female caregivers reported a greater level of burden (p=0.031) than male caregivers. The other variables were not significantly associated to caregiver burden. Conclusion NPS were the main determinant of burden in primary caregivers of AD patients. This result underscores the need for prevention and treatment of these symptoms. Sex also had an effect on caregiver burden, but the small male sample in this study precludes the generalization of this finding. PMID:29213745

CAREGIVER-CHILD INTERACTION, CAREGIVER TRANSITIONS, AND GROUP SIZE AS MEDIATORS BETWEEN INTERVENTION CONDITION AND ATTACHMENT AND PHYSICAL GROWTH OUTCOMES IN INSTITUTIONALIZED CHILDREN.

PubMed

Warner, Hilary A; McCall, Robert B; Groark, Christina J; Kim, Kevin H; Muhamedrahimov, Rifkat J; Palmov, Oleg I; Nikiforova, Natalia V

2017-09-01

This report describes a secondary analysis of data from a comprehensive intervention project which included training and structural changes in three Baby Homes in St. Petersburg, Russian Federation. Multiple mediator models were tested according to the R.M. Baron and D.A. Kenny () causal-steps approach to examine whether caregiver-child interaction quality, number of caregiver transitions, and group size mediated the effects of the intervention on children's attachment behaviors and physical growth. The study utilized a subsample of 163 children from the original Russian Baby Home project, who were between 11 and 19 months at the time of assessment. Results from comparisons of the training and structural changes versus no intervention conditions are presented. Caregiver-child interaction quality and number of caregiver transitions fully mediated the association between intervention condition and attachment behavior. No other mediation was found. Results suggest that the quality of interaction between caregivers and children in institutional care is of primary importance to children's development, but relationship context may play a less direct mediational role, supporting caregiver-child interactions. © 2017 Michigan Association for Infant Mental Health.

Caregiving-related needs of family caregivers of older Singaporeans.

PubMed

Ajay, Shweta; Østbye, Truls; Malhotra, Rahul

2017-03-01

To describe the extent and correlates of caregiving-related needs among family caregivers of Singaporeans aged 75+ with ≥1 activity of daily living limitations (care-recipients). National survey data of 1181 care-recipient/caregiver dyads were used. Caregiver's report (yes/no) of 16 needs was assessed. Care-recipient and caregiver correlates of each need were determined through logistic regression analysis. Caregiving-related needs were expressed by 42.3% caregivers. The most commonly reported need was keeping care-recipient safe at home (24.5%). Needs concerned with caring for care-recipients were more frequent than those concerned with the caregiver's own needs. The most frequent correlate was care-recipient's extent of mood impairment (associated with 13 needs). Caregivers should not neglect themselves when engaging in care provision. Families and service providers should explore whether reported lack of needs reflects limited awareness and/or under-reporting. © 2017 AJA Inc.

Northern Manhattan Hispanic Caregiver Intervention Effectiveness Study: protocol of a pragmatic randomised trial comparing the effectiveness of two established interventions for informal caregivers of persons with dementia.

PubMed

Luchsinger, José A; Burgio, Louis; Mittelman, Mary; Dunner, Ilana; Levine, Jed A; Kong, Jian; Silver, Stephanie; Ramirez, Mildred; Teresi, Jeanne A

2016-11-25

The prevalence of dementia is increasing without a known cure, resulting in an increasing number of informal caregivers. Caring for a person with dementia results in increased stress and depressive symptoms. There are several behavioural interventions designed to alleviate stress and depressive symptoms in caregivers of persons with dementia with evidence of efficacy. Two of the best-known interventions are the New York University Caregiver Intervention (NYUCI) and the Resources for Enhancing Alzheimer's Caregivers Health (REACH). The effectiveness of the NYUCI and REACH has never been compared. There is also a paucity of data on which interventions are more effective in Hispanics in New York City. Thus, we proposed the Northern Manhattan Hispanic Caregiver intervention Effectiveness Study (NHiCE), a pragmatic clinical trial designed to compare the effectiveness of adaptations of the NYUCI and the REACH in informal Hispanic caregivers of persons with dementia in New York City. NHiCE is a 6-month randomised controlled trial comparing the effectiveness of adaptations of the NYUCI and REACH among 200 Hispanic informal adult caregivers of persons with dementia. The planned number of sessions of the NYUCI and REACH are similar. The primary outcome measures are changes from baseline to 6 months in the Zarit Caregiver Burden Scale and Geriatric Depression Scale. Our primary approach to analyses will be intent-to-treat. The primary analyses will use mixed random effects models, and a full information maximum likelihood approach, with sensitivity analyses using generalised estimating equation. NHiCE is approved by the Institutional Review Board of Columbia University Medical Center (protocol AAAM5150). A Data Safety Monitoring Board monitors the progress of the study. Dissemination will include reports of the characteristics of the study participants, as well as a report of the results of the clinical trial. NCT02092987, Pre-results. Published by the BMJ Publishing Group

Understanding caregivers' attitudes towards physical punishment of children: evidence from 34 low- and middle-income countries.

PubMed

Cappa, Claudia; Khan, Shane M

2011-12-01

This article presents findings on caregivers' attitudes towards physical punishment of children from 34 household surveys conducted in low- and middle-income countries in 2005 and 2006. The article analyzes the variability in attitudes by background characteristics of the respondents to examine whether various factors at the individual and family levels correlate with the caregivers' beliefs in the need for violent discipline. The article also examines to what extent attitudes influence behaviors and compares groups of respondents to see how attitudes relate to disciplinary practices across caregivers of different socio-economic backgrounds. The analysis is based on nationally representative data from 33 MICS and 1 DHS surveys. Questions on child discipline were addressed to the mother (or primary caregiver) of one randomly selected child aged 2-14 years in each household. The questionnaire asked whether any member of the household had used various violent and non-violent disciplinary practices with that child during the past month. Additionally, the interviewers asked the respondent if she believed that, in order to bring up that child properly, physical punishment was necessary. The sample included 166,635 mothers/primary caregivers. The analysis shows that, in most countries, the majority of mothers/primary caregivers did not think there was a need for physical punishment. Overall, characteristics such as household wealth and size, educational level and age, as well as place of residence were significantly associated with caregivers' attitudes. The analysis confirms that beliefs influence disciplinary practices to a large degree: in all the countries but two, children were significantly more likely to experience physical punishment if their mothers/primary caregivers thought such punishment was needed. However, large proportions of children were found to be subject to physical punishment even if their mothers/primary caregivers did not consider this method

Assessment of Health-Related Quality of Life among Primary Caregivers of Children with Autism Spectrum Disorders

ERIC Educational Resources Information Center

Khanna, Rahul; Madhavan, S. Suresh; Smith, Michael J.; Patrick, Julie H.; Tworek, Cindy; Becker-Cottrill, Barbara

2011-01-01

The impact of caring for a child with autism on caregivers' health-related quality of life (HRQOL) is not fully understood. The objective of this study was to compare the HRQOL scores of caregivers of children with autism to those of the general US population and to identify the factors that influence HRQOL. Caregivers of children with autism had…

Predictors and consequences of developmental changes in adolescent girls' self-reported quality of attachment to their primary caregiver.

PubMed

Scott, Lori N; Whalen, Diana J; Zalewski, Maureen; Beeney, Joseph E; Pilkonis, Paul A; Hipwell, Alison E; Stepp, Stephanie D

2013-10-01

In an at-risk community sample of 2101 girls, we examined trajectories, predictors, and consequences of changes in a central aspect of adolescents' perceived quality of attachment (QOA), i.e., their reported trust in the availability and supportiveness of the primary caregiver. Results demonstrated two distinct epochs of change in this aspect of girls' perceived QOA, with a significant linear decrease in early adolescence (ages 11-14) followed by a plateau from 14 to 16. Baseline parent-reported harsh punishment, low parental involvement, single parent status, and child-reported depression symptoms predicted steeper decreases in attachment during early adolescence, which in turn predicted greater child-reported depression and conduct disorder symptoms in later adolescence. Results suggest that both parent and child factors contribute to trajectories of self-reported QOA in adolescence, and a faster rate of decrease in girls' perceived QOA to caregivers during early adolescence may increase risk for both internalizing and externalizing symptoms. Copyright © 2013 The Foundation for Professionals in Services for Adolescents. Published by Elsevier Ltd. All rights reserved.

Caregiver burden mediates between caregiver's mental health condition and elder's behavioral problems among Japanese family caregivers.

PubMed

Honda, Ayumi; Abe, Yasuyo; Aoyagi, Kiyoshi; Honda, Sumihisa

2014-03-01

In Japan, the prevalence of depression has been reported to occur among 1 in 4 family caregivers. The purpose of this study was to investigate the self-rated burden associated with mental health conditions among caregivers. We studied 95 caregivers aged 38-87 years in a cross-sectional study. The General Health Questionnaire (GHQ-12) score of 4 or more was defined as poor mental health. The proportion of caregivers with poor mental health was 24%. Caregivers with a high GHQ-12 score had the number of caregiver burdens increased by 2.5-fold compared to those with a low GHQ-12 score (p = 0.001). The proportion of caregivers with a high GHQ-12 score was significantly higher with an increasing number of behavioral problems among care recipients (p = 0.003). A mediational model was used to identify the underlying mechanism of the relationship between the number of behavioral problems and poor mental health in caregivers. Consequently, we found that mental health conditions in caregivers were associated with both the number of caregiver burdens and behavioral problems among care recipients. It is vital to provide support not only to the caregivers but also to their elderly relatives, paying particular attention to early identification of poor mental health in caregivers so as to administer effective interventions, and to offer useful advice concerning how to deal with behavioral problems.

Impact of an educational intervention on caregivers' beliefs about infant crying and knowledge of shaken baby syndrome.

PubMed

Bechtel, Kirsten; Le, Kim; Martin, Kimberly D; Shah, Niyati; Leventhal, John M; Colson, Eve

2011-01-01

Shaken baby syndrome (SBS) is the leading cause of traumatic infant death. We examined whether the message about not shaking an infant should be included in the newborn anticipatory guidance provided by pediatric residents. The aim of this study was to determine the impact of an educational intervention (Take 5 Safety Plan for Crying) delivered by pediatric residents at newborn hospital discharge on beliefs about infant crying and knowledge of SBS among caregivers of young infants being treated in an urban primary care center. Structured interviews were done in one convenience sample of caregivers before (historical control group) and in a second set of different caregivers after (intervention group) an educational intervention was implemented at hospital discharge. Logistic regression was used to calculate adjusted associations between the intervention and caregivers' beliefs/knowledge. One hundred ten caregivers were in the historical control group and 112 in the intervention group. The intervention group had more mothers and the infants were younger. Controlling for these differences, intervention group caregivers were more likely to state they would take a break if frustrated with infant crying (OR 3.10, 95% CI, 1.62-5.93), were more likely to state frustration caused infant shaking (OR 2.21, 95% CI, 1.20-4.20), and to state their knowledge of SBS was from hospital staff (OR 3.39, 95% CI, 1.61-4.20). This targeted postpartum intervention incorporated into newborn anticipatory guidance can influence caregivers' beliefs about infant crying and knowledge of SBS. Copyright © 2011 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.

A secondary data analysis of Internet use in caregivers of persons with dementia.

PubMed

Kim, Heejung; Rose, Karen M; Netemeyer, Richard G; Merwin, Elizabeth I; Williams, Ishan C

2014-12-01

This paper is a secondary data analysis to investigate relationships among caregiver stress appraisal, self-rated health and health-related Internet use. Cross-sectional correlation design. National Alliance for Caregiving telephone survey conducted in the USA was a primary data source collected in 2009 from 258 caregivers of persons with dementia, who used the Internet to perform care-giving tasks. Based on Pearlin's Stress Process Model, structural equation modelling was conducted. Caregivers with poor health reported higher levels of caregiver stress appraised, which was associated with more Internet use for health-related purposes. It is required to develop effective Internet-based resources to meet the needs of highly stressed caregivers of persons with dementia. However, there was no relationship between self-rated health and health-related Internet use in dementia caregiver.

Promoting improved family caregiver health literacy: evaluation of caregiver communication resources.

PubMed

Wittenberg, Elaine; Goldsmith, Joy; Ferrell, Betty; Ragan, Sandra L

2017-07-01

Family caregivers of cancer patients have a vital role in facilitating and sharing information about cancer, revealing a need to develop caregiver health literacy skills to support caregiver communication. The goal of this study was to investigate caregiver print materials and develop and assess a new caregiver communication resource titled A Communication Guide for Caregivers TM . Using a model of six domains of caregiver health literacy skills, print cancer education materials were collected and evaluated for caregiver communication support. A new caregiver communication resource was also developed and assessed by caregivers and healthcare providers. Caregivers reviewed content and assessed utility, relatability, and reading quality. Healthcare providers also assessed whether the material would be understandable and usable for cancer caregivers. Only three of the 28 print materials evaluated were written at the recommended sixth grade reading level and only five addressed all six caregiver health literacy skills. Readability scores for A Communication Guide for Caregivers TM were at the sixth grade level, and caregivers reported its contents were relatable, useful, and easy to read. Healthcare providers also rated the material as easy for patient/family members of diverse backgrounds and varying levels of literacy to understand and use. Existing print-based caregiver education materials do not address caregivers' health literacy skill needs and are aimed at a highly literate caregiving population. A Communication Guide for Caregivers TM meets health literacy standards and family caregiver and provider communication needs. The findings are relevant for healthcare professionals who provide cancer education. Copyright © 2016 John Wiley & Sons, Ltd. Copyright © 2016 John Wiley & Sons, Ltd.

Coping strategies and quality of life in caregivers of dependent elderly relatives.

PubMed

Rodríguez-Pérez, Margarita; Abreu-Sánchez, Ana; Rojas-Ocaña, María Jesús; Del-Pino-Casado, Rafael

2017-04-14

Despite the importance of coping in caregiving, there are few studies on the relationship between coping and quality of life in caregivers of the frail dependent elderly. Thus, this study aims to analyze the relationship between coping strategies and quality of life dimensions in primary caregivers of dependent elderly relatives. A cross-sectional study was conducted from 86 caregivers. Predictive variables were coping strategies (problem-focused, emotion-focused, socially-supported, and dysfunctional); dependent variables were quality of life dimensions (psychological, physical, relational, and environmental); and potential confounding variables were age, gender, perceived health and burden of caregiver, and functional capacity of care receiver. Correlation coefficients were calculated and multiple linear regression analysis was performed. After controlling for potential confounders, dysfunctional coping was related to worse quality of life in the psychological dimension, while emotion-focused and socially-supported coping were related to superior psychological and environmental dimensions of quality of life. The physical and relational dimensions of quality of life were not related to coping strategies. 1) it is important to consider coping strategies in the assessment of primary caregivers of dependent elderly relatives; 2) the quality of life of caregivers is related to their coping strategies, 3) their quality of life can be worsened by avoidance-type coping, and 4) their quality of life can be improved by active emotion-focused coping and socially-supported coping.

Spouse caregivers of Alzheimer patients: problem responses to caregiver burden.

PubMed

Croog, S H; Burleson, J A; Sudilovsky, A; Baume, R M

2006-03-01

This paper reports on comparisons of patterns of responses by 199 spouses of Alzheimer disease patients to stresses of functioning as caregivers. Focusing on gender and age of spouses, we examine effects of the total burden of caregiving and perceived patient problems on a set of emotional and social responses of caregivers. We also examine ways in which depressive symptoms and anxiety of spouse caregivers were associated with patterns of their responses to caregiving stresses. Total patient problem burden was most strongly associated positively with caregiver anger-resentment toward the patient, followed by caregiver concerns about personal time restriction and limitation of social life. Among individual areas of patient problems, emotional lability of the patient rather than cognitive impairment appeared strongest by far in affecting caregiver response measures. Negative impact of caregiving on their social life and associations appeared to have particularly marked effects on effects on caregiver depressive symptoms and anxiety scores. Spouse caregivers did not differ by age in clinically significant ways in their patterns of reaction to stresses of caregiving. The study suggests the importance of considering potential spouse caregiver reactions in such areas as anger and aggressive response to patients, the impact of feelings of social deprivation and personal sacrifice, as well as the implications of caregiving stresses for patient care and maintenance of family cohesion and quality of life.

The Stress of Sadness: The Most Stressful Symptoms for Hospice Family Caregivers.

PubMed

Ratkowski, Kristy L; Washington, Karla T; Craig, Kevin W; Albright, David L

2015-11-01

A family member or friend is often a hospice patient's primary caregiver and, as such, may face a significant number of stressors, including challenges related to managing patient symptoms. This study investigated the most stressful patient symptoms as reported by 111 hospice family caregivers of cancer (n=66) and cardiopulmonary (n=45) patients. Researchers calculated the mean level of stress caregivers attributed to 32 different patient symptoms commonly encountered at end of life. They found the symptoms perceived as most stressful for caregivers were psychological in nature. Study findings suggest that members of the hospice interdisciplinary team should connect patients and their caregivers to various types of support to address psychological symptoms, benefitting patients and caregivers alike. © The Author(s) 2014.

Conceptual Challenges in the Study of Caregiver-Care Recipient Relationships

PubMed Central

Lingler, Jennifer Hagerty; Sherwood, Paula R.; Crighton, Margaret H.; Song, Mi-Kyung; Happ, Mary Beth

2010-01-01

Background In the literature on family caregiving, care receiving and caregiving are treated generally as distinct constructs, suggesting that informal care and support flow in a unidirectional manner from caregiver to care recipient. Yet, informal care dynamics are fundamentally relational and often reciprocal, and caregiving roles can be complex and overlapping. Objectives To illustrate ways care dynamics may depart from traditional notions of dyadic, unidirectional family caregiving; and to stimulate a discussion of the implications of complex, relational care dynamics for caregiving science. Approach Exemplar cases of informal care dynamics were drawn from three ongoing and completed investigations involving persons with serious illness and their family caregivers. The selected cases provide examples of three unique, but not uncommon, care exchange patterns: (a) aging and chronically ill care dyads who compensate for one another's deficits in reciprocal relationships; (b) patients who present with a constellation of family members and other informal caregivers, as opposed to one primary caregiver; and (c) family care chains whereby a given individual functions as a caregiver to one relative or friend and care recipient to another. Conclusions These cases illustrate such phenomena as multiple caregivers, shifting and shared caregiving roles, and care recipients as caregivers. As caregiving science enters a new era of complexity and maturity, there is a need for conceptual and methodological approaches that acknowledge, account for, and support the complex, web-like nature of family caregiving configurations. Research that contributes to, and is informed by, a broader understanding of the reality of family caregiving will yield findings that carry greater clinical relevance than has been possible previously. PMID:18794721

Caregiver Assessment

ERIC Educational Resources Information Center

Feinberg, Lynn

2008-01-01

Assessment is a critical step in determining appropriate support services. This article discusses "caregiver assessment," a systematic process of gathering information to describe a caregiving situation. Caregiver assessment identifies the particular problems, needs, resources, and strengths of the family caregiver and approaches issues from the…

Economic expenditures associated with instrumental caregiving roles of adult siblings of persons with severe mental illness.

PubMed

Lohrer, Steven P; Lukens, Ellen P; Thorning, Helle

2007-04-01

Siblings of persons with mental illness who assume primary caregiving roles experience substantial and tangible economic impacts associated with this responsibility. This study investigated mailed survey responses collected from 156 adult siblings of persons with mental illness from New York State to examine instrumental costs associated with providing support to siblings with illness. Genders of both siblings, severity of the relatives' mental illness, and number of surviving parents in the family distinguished those occupying primary caregiving responsibility from those not in primary roles. Current caregivers incurred greater instrumental costs in the form of financial expenses, time spent in care activities, and crisis involvement than did those who were not primary care providers. Additional demographic and behavioral factors related to siblings with and without illness were associated with specific dimensions of instrumental expenditure. As siblings become increasingly engaged in caregiving, social service professionals must assume leadership in promoting programs and policies that meaningfully support family involvement for relatives with mental illness.

Facebook or Twitter?: Effective recruitment strategies for family caregivers.

PubMed

Herbell, Kayla; Zauszniewski, Jaclene A

2018-06-01

This brief details recent recruitment insights from a large all-online study of family caregivers that aimed to develop a measure to assess how family caregivers manage daily stresses. Online recruitment strategies included the use of Twitter and Facebook. Overall, 800 individuals responded to the recruitment strategy; 230 completed all study procedures. The most effective online recruitment strategy for targeting family caregivers was Facebook, yielding 86% of the sample. Future researchers may find the use of social media recruitment methods appealing because they are inexpensive, simple, and efficient methods for obtaining National samples. Copyright © 2018 Elsevier Inc. All rights reserved.

The relationship between family functioning and caregiving appraisal of dementia family caregivers: caregiving self-efficacy as a mediator.

PubMed

Liu, Hsin-Yi; Huang, Lian-Hua

2018-04-01

The aim of this study was to explore caregiving self-efficacy as a mediator for the association between family functioning and caregiving appraisal of dementia family caregivers in Taiwan. This study adopted a cross-sectional correlational design. Purposive sampling was used to recruit 115 dyads of dementia patients and family caregivers from the outpatient neurological clinics of two hospitals in northern Taiwan. Data were gathered through interviews with a structured questionnaire, which included demographic characteristics for caregivers and patients, family functioning, caregiving self-efficacy, as well as positive and negative aspects of caregiving appraisal. Family functioning, patients' activities of daily living score, Neuropsychiatric Inventory caregiver distress, and three domains of self-efficacy were significantly associated with caregiver burden. Hierarchical multiple regression analyses indicated that self-efficacy for obtaining respite (SE-OR) significantly explained 20.5% of the variance in caregiver esteem. Caregiver perceived worsened health status, family functioning, and SE-OR significantly explained 59% of the variance in caregiver burden. The mediation test only supported the partially mediating role of SE-OR on the relationship between family functioning and caregiver burden, while the mediating effect of self-efficacy for responding to disruptive behaviours and controlling upsetting thoughts were insignificant. Our findings provided preliminary evidence for health professionals recommending that future studies should assess the family dynamic and health problems of caregivers, and develop appropriate family-centred interventions that focus on strengthening interfamily support and respite services to alleviate caregiver burden.

Caregiver Burden after Receiving a Diagnosis of an Autism Spectrum Disorder

ERIC Educational Resources Information Center

Stuart, Melissa; McGrew, John H.

2009-01-01

The study examined factors impacting caregiver burden following diagnosis of an autism spectrum disorder (ASD). Primary caregivers of children diagnosed with an ASD within the past 6 months (n = 78) were assessed on variables thought to influence outcomes associated with family stress as proposed within the double ABCX model of family adaptation,…

Child's autism severity: effect on West Virginia caregiver satisfaction with school services.

PubMed

Vohra, Rini; Madhavan, Suresh; Khanna, Rahul; Becker-Cottrill, Barbara

2014-01-01

Survey data was collected from 301 primary caregivers of children with autism registered at West Virginia Autism Training Center (WV ATC), to examine the impact of child's autism severity on caregiver satisfaction with school services. Satisfaction with six school services was measured via a 3-point Likert scale: speech-language therapy, occupational therapy, social skills training, physical therapy, behavioral interventions, and assistance in improving study skills. Ordinal logistic regressions showed that caregivers of children with high autism severity were less likely to be satisfied with school services, as compared to caregivers of children with low autism severity (OR's from 0.45 to 0.39). No significant differences existed in caregiver satisfaction with services between high and low autism severity groups, after addition of caregiver burden to the model. Findings suggest that child's autism severity is a significant predictor of caregiver satisfaction with school services, and should be considered during development of child's Individualized Education Program(IEP) and evaluation of caregiver satisfaction with the IEP.

Feeling of burden, psychological distress, and anxiety among primary caregivers of children with home enteral nutrition.

PubMed

Calderón, Caterina; Gómez-López, Lilianne; Martínez-Costa, Cecilia; Borraz, Soraya; Moreno-Villares, José Manuel; Pedrón-Giner, Consuelo

2011-03-01

To examine the relationship between several psychological factors and the feeling of burden experienced by caregivers of children with home enteral nutrition. Fifty-six mothers of pediatric patients with chronic diseases requiring long-term home enteral nutrition were recruited. They were asked to respond to specific questionnaires about their anxiety symptoms (State-Trait Anxiety Inventory), psychological distress (SCL-90-R) and feeling of burden (Zarit-scale). Caregivers' feeling of burden was found to be statistically associated to psychological distress (r = .516, p < .001) and trait anxiety (r = .376, p = .005). No significant differences were found between the type of diagnosis and caregiver burden. Regression analysis indicated psychological distress has a partial mediational effect in the relationship between trait anxiety and caregivers' burden. Psychological distress and anxiety show a positive correlation with caregivers' feeling of burden, and may disrupt family well-being. Early identification of high-risk situations is essential in order to plan specific psychosocial aid efficiently.

Sex disparities in access to caregiving in Parkinson disease.

PubMed

Dahodwala, Nabila; Shah, Krunal; He, Ying; Wu, Samuel S; Schmidt, Peter; Cubillos, Fernando; Willis, Allison W

2018-01-02

To compare access to caregiving between men and women with Parkinson disease (PD). This was a cross-sectional and longitudinal study among participants with PD enrolled in the National Parkinson Foundation Parkinson's Outcomes Project from 2009 to 2014 at 21 international sites. The primary outcome measures were presence of a caregiver at the baseline visit, caregiver burden as measured by the Multidimensional Caregiver Strain Index (MCSI) at baseline, and time to first paid caregiver. A total of 7,209 participants (63% men, 37% women) with PD were evaluated. Men had a mean age of 66.0 (SD 9.8) years, and women had a mean age of 66.9 (SD 9.7) years. More men than women had a caregiver (88.4% vs 79.4%, p < 0.0001). Caregivers of men reported greater strain than those of women (MCSI score 19.9 vs 16.4, p < 0.0001). These differences persisted after controlling for age, disease stage, number of comorbidities, cognitive and mobility measures, and health-related quality of life. In addition, the odds of caregiver accompaniment at baseline visit were lower for women compared to men (odds ratio 0.76, 95% confidence interval [CI] 0.67-0.86), and women had a faster rate to using a paid caregiver than men (hazard ratio 1.76, 95% CI 1.35-2.28) after controlling for potential confounders. Informal caregiving resources are lower for women than men with PD, despite the finding that their caregivers report less strain than those of men. In addition, women are more likely to use formal, paid caregivers. Strategies to improve access to caregiving, particularly for women, are needed. Copyright © 2017 American Academy of Neurology.

Caregiver self-efficacy, ethnicity, and kinship differences in dementia caregivers.

PubMed

Depp, Colin; Sorocco, Kristen; Kasl-Godley, Julia; Thompson, Larry; Rabinowitz, Yaron; Gallagher-Thompson, Dolores

2005-09-01

The authors sought to determine the effect of kinship status (daughters versus wives) and ethnicity (Hispanic/Latino versus Caucasian) on self-efficacy to perform tasks relevant to caregiving in a sample of family caregivers for people with memory problems. Baseline data were collected from 238 female caregivers who participated in an intervention program. Ethnic and kin relationship groups were compared on measures of caregiver self-efficacy, acculturation within the Hispanic/Latino sample, and the relationship of self-efficacy to key outcome variables. Hispanics/Latinos reported higher self-efficacy on two of three self-efficacy subscales (Responding to Disruptive Behaviors and Controlling Negative Thoughts About Caregiving). Daughters reported higher self-efficacy on all three self-efficacy scales. Among Hispanics/Latinos, acculturation did not relate strongly to self-efficacy. Caucasian and spousal caregivers appeared to make more generalized appraisals about caregiving. Higher self-efficacy among Hispanic/Latino caregivers may relate to cultural values about caregiving and/or ethnic differences in appraisal. Wives may be more at risk for low self-efficacy, which may relate to greater role frustration and distress. This study highlights the heterogeneity among caregivers in their experience of caregiving.

An Individualized Dyadic Problem-Solving Education Intervention for Patients and Family Caregivers During Allogeneic HSCT: A Feasibility Study

PubMed Central

Bevans, Margaret; Castro, Kathleen; Prince, Patricia; Shelburne, Nonniekaye; Prachenko, Olena; Loscalzo, Matthew; Soeken, Karen; Zabora, James

2010-01-01

Background Allogeneic hematopoietic stem cell transplantation (HSCT) generates multiple problems that vary in complexity and create significant distress for both patients and their caregivers. Interventions that address patient and caregiver distress during allogeneic HSCT have not been tested. Objective To evaluate the feasibility of conducting an individualized dyadic problem-solving education (PSE) intervention during HSCT and estimate a preliminary effect size on problem-solving skills and distress. Intervention/Methods: The PSE intervention consisted of four sessions of the Prepared Family Caregiver PSE model. Data were collected with an interventionist log, subject interviews and standardized questionnaires. Results Of the thirty-four adult dyads screened, twenty-four were ineligible primarily due to non-English speaking (n=11) and inconsistent caregivers (n=10). Ten dyads (n=20) were enrolled and eight dyads (n=16) completed the intervention. Of the thirty-one sessions, 29 were completed (94%). Worsening patient condition was the primary reason for sessions to be incomplete. Patients attended 90% of the sessions; caregivers attended 74%. Reasons for missed sessions included patient symptom distress and limited caregiver availability. Dyads reported being very satisfied (4.8±0.61; range 1–5) stating “an opportunity to talk” and “creative thinking” were most beneficial. Conclusion Results suggest that dyads can participate in PSE during HSCT and view it as beneficial. Participants identified the active process of solving problems as helpful. Implications for Practice Targeted interventions that promote effective, meaningful behaviors are needed to guide patients and caregivers through HSCT. Future research recommendations include: testing a version of PSE with fewer sessions, including spousal and non-spousal caregivers and those who are non-English speaking. PMID:20142739

Maternal depressive symptoms, self-focus, and caregiving behavior.

PubMed

Humphreys, Kathryn L; King, Lucy S; Choi, Peter; Gotlib, Ian H

2018-06-08

Parent-child interactions set the stage for child mental health and development. Given that maternal depressive symptoms are associated with poorer observed caregiving behaviors, examining potential cognitive mediators is important for identifying mechanisms underlying the intergenerational transmission of risk and possible targets for intervention. We assessed depressive symptoms and levels of self-focus and psychological distancing from infant-centered verbal narratives obtained from 54 mothers, and examined caregiving behaviors in a structured interaction with their six-month-old infants. Higher depressive symptoms were associated with pronoun use in narratives (i.e., greater "I" and reduced "we" use), reflecting increased self-focus and psychological distancing. Further, increased self-focus was associated with lower levels of caregiver warmth, and mediated the association between depressive symptoms and caregiving warmth. This observational study does not allow for causal interpretations. These findings suggest that the cognitive styles associated with depression interfere with the caregiving relationship, affecting behavior in parent-child interactions that may increase the risk for the intergenerational transmission of depression. Copyright © 2018 Elsevier B.V. All rights reserved.

Behind the smile: qualitative study of caregivers' anguish and management responses while caring for someone living with heart failure.

PubMed

Wingham, Jennifer; Frost, Julia; Britten, Nicky

2017-07-20

Caregivers support self-management in heart failure but often experience stress, anxiety and ill health as a result of providing care. 1. To identify the factors that contribute to the experience of anguish.2. To understand how caregivers learn to live with what is frequently a challenging and demanding role. Individual interviews with caregivers who had been caring for someone with heart failure for a minimum of 6 months. We used thematic analysis to inductively analyse transcripts. Twenty-two caregivers, from three centres in the United Kingdom, took part in individual interviews. The caregivers were aged between 39 and 84 years, and six were men. Twenty were in spousal or partner relationships. We found that caregivers often hide the extent of their emotional stress or anguish. We identified four main themes with explanatory subthemes-emotional impact (fear for the future and sense of hopelessness), role definition (changing sense of who I am, reduced resilience, learning care skills, role conflict and changing role), exclusion (exclusion by the cared-for person and by health professionals and feeling alone) and ignoring one's own health-that were associated with anguish. From these findings, we produced a caregiver needs assessment model in the context of caring for a person with heart failure. Caregivers have many unmet and hidden needs. Primary care health professionals are well placed to meet the needs of caregivers. The model may be used by health and social care professionals to identify needs and to provide caregivers with targeted practical and emotional support; and for researchers developing interventions to enhance self-management in heart failure. © 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.

Parent's confidence as a caregiver.

PubMed

Raines, Deborah A; Brustad, Judith

2012-06-01

The purpose of this study was to describe the parent's self-reported confidence as a caregiver. The specific research questions were as follows: • What is the parent's perceived level of confidence when performing infant caregiving activities in the neonatal intensive care unit (NICU)? • What is the parent's projected level of confidence about performing infant caregiving activities on the first day at home? Participants were parents of infants with an anticipated discharge date within 5 days. Inclusion criteria were as follows: parent at least 18 years of age, infant's discharge destination is home with the parent, parent will have primary responsibility for the infant after discharge, and the infant's length of stay in the NICU was a minimum of 10 days. Descriptive, survey research. Participants perceived themselves to be confident in all but 2 caregiving activities when caring for their infants in the NICU, but parents projected a change in their level of confidence in their ability to independently complete infant care activities at home. When comparing the self-reported level of confidence in the NICU and the projected level of confidence at home, the levels of confidence decreased for 5 items, increased for 8 items, and remained unchanged for 2 items. All of the items with a decrease in score were the items with the lowest score when performed in the NICU. All of these low-scoring items are caregiving activities that are unique to the post-NICU status of the infant. Interestingly, the parent's projected level of confidence increased for the 8 items focused on handling and interacting with the infant. The findings of this research provide evidence that nurses may need to rethink when parents become active participants in their infant's medical-based caregiving activities.

Gender and socio-economic inequalities in health and living conditions among co-resident informal caregivers: a nationwide survey in Spain.

PubMed

Abajo, María; Rodríguez-Sanz, Maica; Malmusi, Davide; Salvador, María; Borrell, Carme

2017-03-01

To explore the associations between social determinants, caregiver's network support, burden of care and their consequences in health and living conditions of informal caregivers. The socio-demographic trends regarding population ageing and changes in family models trigger an increased demand for care. Cross-sectional study based on the 2008 edition of the National Disability, Independence and Dependency Situations Survey (DIDSS-2008) conducted by the National Statistics Institute in Spain. Analyses focused on persons identified as primary caregivers who co-reside with the dependent person. The associations between social determinants of caregivers, burden of care, support network and problems attributed to informal care (impaired health, depression, professional, economic and personal issues) were estimated by fitting robust Poisson regression models. Analyses were conducted separately for women and men. The study sample included 6923 caregivers, 73% of women and 27% of men. Gender and socio-economic inequalities were found in assumption of responsibilities and burden of caring for dependents, which tend to fall more on women and persons of lower socio-economic level, who in turn have less access to formal support. These aspects translate into a higher prevalence of health, professional, economic and personal problems. The study highlights gender and socio-economic inequalities in informal caregiving and its negative consequences. These findings may be useful in the design of policies and support programmes targeting the most affected groups of informal caregivers. © 2016 John Wiley & Sons Ltd.

Empowering Family Caregivers: The Powerful Tools for Caregiving Program

ERIC Educational Resources Information Center

Boise, Linda; Congleton, Leslie; Shannon, Kathy

2005-01-01

"Powerful Tools for Caregiving" is an education program for family caregivers of older adults. Based on a self-efficacy model, the program empowers family caregivers to reduce negative effects of caregiving and to practice self-care. Through a train-the-trainer approach, professional and community volunteers were trained as class leaders and…

A process evaluation of systematic risk and needs assessment for caregivers in specialised palliative care.

PubMed

Thomsen, Kia Toft; Guldin, Mai-Britt; Nielsen, Mette Kjærgaard; Ollars, Chaitali Laura; Jensen, Anders Bonde

2017-04-08

Caregiving is strenuous and it may be associated with adverse psychological outcomes. During the palliative care trajectory, there are unique opportunities for providing support and preventing poor bereavement outcome. However, the tasks of palliative care staff in relation to caregivers are often unclear in the daily practice. Assessment is recommended to establish risk and needs and standards for caregiver support are available. Still, the feasibility of applying these standards among caregivers in everyday clinical practice has not been tested so far. This study tested the feasibility of an intervention based on key elements of the "Bereavement support standards for specialist palliative care services" in a Danish specialised palliative home care team. We followed the UK Medical Research Council's guidelines for the process evaluation of complex interventions. The intervention consisted of: 1. Systematic risk and needs assessment for caregivers at care entry; 2. Interdisciplinary conference to prepare a support plan; 3. Targeted support; 4. The establishment of an electronic medical record for caregivers to document targeted support. Outcomes included the reach, fidelity and acceptability of the intervention as well as the assessment of contextual factors. The intervention reached 76 of 164 caregivers (46%). The interdisciplinary risk assessment and documentation of a support plan was conducted in 57 (75%) of the enrolled caregivers. Finally, a separate medical record was established according to the intervention blueprint for 62% of caregivers receiving targeted support. After managing initial challenges, palliative care staff reported that the intervention was useful and acceptable. The intervention proved feasible and useful. Still, we identified barriers to the implementation which should be taken into consideration when planning implementation of a systematic risk and needs assessment and in the establishment of medical records for caregivers.

Moving beyond caregiver burden: identifying helpful interventions for family caregivers.

PubMed

Sorrell, Jeanne M

2014-03-01

Family members serving as informal caregivers for loved ones often experience physical, psychological, emotional, social, and financial consequences that can be conceptualized as caregiver burden. As the number of older adults in our society continues to increase, there will be even more demand for family caregivers. It is important to move beyond a focus on the statistics and characteristics of caregiver burden and identify helpful interventions to reduce this burden. Interventions that decrease caregiver burden can enable family caregivers to delay placement of the individual in an institutional setting and improve quality of life for both the caregiver and care recipient. Copyright 2014, SLACK Incorporated.

Exploring ambivalence in motivational interviewing with obese African American adolescents and their caregivers: A mixed methods analysis

PubMed Central

Carcone, April Idalski; Barton, Ellen; Eggly, Susan; Brogan Hartlieb, Kathryn E.; Thominet, Luke; Naar, Sylvie

2016-01-01

Objective We conducted an exploratory mixed methods study to describe the ambivalence African-American adolescents and their caregivers expressed during motivational interviewing sessions targeting weight loss. Methods We extracted ambivalence statements from 37 previously coded counseling sessions. We used directed content analysis to categorize ambivalence related to the target behaviors of nutrition, activity, or weight. We compared adolescent-caregiver dyads’ ambivalence using the paired sample t-test and Wilcoxon signed-rank test. We then used conventional content analysis to compare the specific content of adolescents’ and caregivers’ ambivalence statements. Results Adolescents and caregivers expressed the same number of ambivalence statements overall, related to activity and weight, but caregivers expressed more statements about nutrition. Content analysis revealed convergences and divergences in caregivers’ and adolescents’ ambivalence about weight loss. Conclusion Understanding divergences in adolescent-caregiver ambivalence about the specific behaviors to target may partially explain the limited success of family-based weight loss interventions targeting African American families and provides a unique opportunity for providers to enhance family communication, foster teamwork, and build self-efficacy to promote behavior change. Practice implications Clinicians working in family contexts should explore how adolescents and caregivers converge and diverge in their ambivalence in order to recommend weight loss strategies that best meet families’ needs. PMID:26916012

Family caregiver satisfaction with the nursing home after placement of a relative with dementia.

PubMed

Tornatore, Jane B; Grant, Leslie A

2004-03-01

This article examines family caregiver satisfaction after nursing home placement of a relative with Alzheimer disease or a related dementia. Determining what contributes to family caregiver satisfaction is a critical step toward implementing effective quality improvement strategies. A stress process model is used to study caregiver satisfaction among 285 family caregivers in relation to primary objective stressors (stage of dementia, length of stay, length of time in caregiving role, visitation frequency, involvement in nursing home, and involvement in hands-on care), subjective stressors (expectations for care), caregiver characteristics (education, marital status, familial relationship, workforce participation, distance from nursing home, and age), and organizational resources (rural/urban location, profit/nonprofit ownership, special care unit [SCU] designation, and custodial unit designation). SAS PROC MIXED is used in a multilevel analysis. Higher satisfaction is associated with earlier stage of dementia, greater length of time involved in caregiving prior to institutionalization, higher visitation frequency, less involvement in hands-on care, greater expectations for care, and less workforce participation. Multilevel analysis showed that primary stressors are the strongest predictors of satisfaction. Only one caregiver characteristic (work participation) and one organizational resource (rural/urban location) predict satisfaction. SCU designation was unrelated to satisfaction, perhaps because SCUs have less to offer residents in more advanced as opposed to earlier stages of Alzheimer disease. If family satisfaction is to be achieved, family presence in a nursing home needs to give caregivers a sense of positive involvement and influence over the care of their relative.

Burden and Depressive Symptoms Associated with Adult-Child Caregiving for Individuals with Heart Failure

PubMed Central

Zincir, Serkan; Aydin Sunbul, Esra; Oguz, Mustafa; Feriha Cengiz, Fatma; Durmus, Erdal; Kivrak, Tarik; Sari, Ibrahim

2014-01-01

Background. The primary purpose of this study was to investigate adult-child caregiver burden in heart failure (HF) patients. Secondary purpose of the study was to identify the possible influencing factors for caregiver burden and depressive symptoms in a young adult-child caregiver group. Methods. A total of 138 adult-child caregivers and 138 patients with HF participated in this study. Caregivers' burden, depressive symptoms, and anxiety levels were assessed by using Zarit Caregiver Burden Scale (ZCBS), Beck Depression Inventory, and State-Trait Anxiety Inventory, respectively. Results. The mean ZCBS scores of the female caregivers were significantly higher than male caregivers. Approximately one-third of the adult-child caregivers had at least mild depressive symptoms. Caregivers with higher depressive symptoms had higher levels of caregiver burden. There were positive correlations between caregiving time, severity of depressive symptoms, and perceived caregiver burden. There was a negative correlation between education level of caregivers and perceived caregiver burden. Age, socioeconomic level, and marital status of patients were affecting factors for depressive symptoms in caregivers. Among caregiver characteristics, gender, marital status, and ZCBS scores seem to influence the depression in caregivers. Conclusions. The study findings suggest significant levels of burden and depressive symptoms even in adult-child caregivers of HF patients. PMID:25431793

Healthcare-seeking behaviour of primary caregivers for acute otitis media in children aged 6 months to <30 months in Panama: results of a cross-sectional survey.

PubMed

Villarreal, Iris; Turner, Rosario; Jo, Hyejin; Park, Julie; Gemmen, Eric; Pirçon, Jean-Yves; Castrejon, Maria M; Hausdorff, William P

2017-01-05

Acute otitis media (AOM) is the most common bacterial childhood infection. However, caregivers with children having mild episodes often do not seek healthcare services, which may lead to an under-appreciation of the disease experienced by the community. The objectives of this survey were to estimate the proportion of primary caregivers who went to a healthcare facility when they suspected that their child aged 6 to <30 months was having an AOM episode during the past 6 months and to assess what factors influenced their decision. This observational, cross-sectional survey of primary caregivers (≥18 years), with at least one child aged 6 to <30 months was performed in 19 healthcare facilities in Panama (March to May 2013). A 28-item paper questionnaire was administered to assess demographic data, AOM symptoms, as well as potential healthcare-seeking behaviour and factors influencing this behaviour. Potential confounding effects were individually assessed using Chi-squared or Cochran-Mantel-Haenszel tests, and all together in logistic regression models. The total number of eligible participants was 1330 (mean age 28.5 ± 8.0 years). Of these, 245 participants had at least one child whom they suspected had an AOM episode during the past 6 months. Of the 245 participants, 213 (86.9%) sought healthcare at a facility. Several factors were associated with healthcare usage: perceived severity of illness (p = 0.001), occupational status of the caregiver (p = 0.002), household income (p = 0.016) and length of time since the last suspected AOM episode (p = 0.032). When confronted with a child with obvious symptoms of AOM, the majority of caregivers reported seeking healthcare. This behaviour appeared to be associated with factors related to the severity of the illness, the length of time since the last episode, as well as with the income and occupational status of the caregivers themselves. As many episodes of AOM present with non

Family demands, social support and caregiver burden in Taiwanese family caregivers living with mental illness: the role of family caregiver gender.

PubMed

Hsiao, Chiu-Yueh

2010-12-01

The purpose of this study was to assess gender effects on family demands, social support and caregiver burden as well as to examine contributing factors of caregiver burden in caring for family members with mental illness. Providing continued care and support for people with mental illness is demanding and challenging. Findings of earlier caregiving studies on the role of caregiver gender in response to caregiver burden and caregiving-related factors have been inconsistent. Little research has been undertaken to examine gender effect on family demands, social support and caregiver burden in Taiwanese family caregivers of individuals with mental illness. Cross-sectional, descriptive correlation design. Data from 43 families, including at least one male and female family caregiver in each family, were analysed using descriptive statistics, principal component analysis and mixed linear modelling. Demographic data, Perceived Stress Scale, Perceived Social Support and Caregiver Burden Scale-Brief were used to collect data. Female family caregivers perceived less social support and experienced higher degrees of caregiver burden compared with male family caregivers. In contrast, no significant gender effect was associated with family demands. Family caregivers with greater family demands and less social support experienced higher degrees of caregiver burden. The results reinforced those of previously published studies that caregiver burden is highly prevalent among female family caregivers. Caregiver gender appears to be highly valuable for explaining family demands, social support and caregiver burden. Health care professionals should continue to collaborate with family caregivers to assess potential gender effects on available support and design gender-specific interventions to alleviate caregiver burden. © 2010 Blackwell Publishing Ltd.

Effectiveness of a Brief Psychosocial Intervention on Quality of Life of Primary Caregivers of Iranian Children With Cancer: A Randomized Controlled Trial.

PubMed

Safarabadi-Farahani, Atefeh; Maarefvand, Masoomeh; Biglarian, Akbar; Khubchandani, Jagdish

2016-01-01

Cancer in children has a great impact on primary caregiver quality of life (QOL). This study examined the effectiveness of a brief psychosocial intervention (BPI) on QOL of Primary Caregivers of Children with Cancer (PCCCs). Sixty-five PCCCs participated in a randomized controlled trial in Mahak Hospital and Rehabilitation Complex in Tehran, Iran. A 5-week long BPI (which comprised of counseling sessions and telephone follow-up) was delivered to the intervention group in addition to usual service, while the control group was provided with usual service. Data were collected using the Caregiver Quality of Life Index-Cancer-Persian version (CQOLC-P) prior to intervention, post-intervention, and at follow-up (i.e. 30days after the intervention). Repeated measures analysis of variance analysis (ANOVA) was used to evaluate outcomes. Majority of the participants were mothers (95%), between ages of 24-47 years (95%) with children between ages of 2-12 years. Most child cancer diagnoses were for brain tumors (n=31) and blood cancers (n=17). Significant improvement was found within the intervention group on QOL (p<0.001) including improvements on subscale measures of mental/emotional burden (p<0.001), disruption (p<0.001), and positive adaptation (p<0.001), compared with the control group over time. There was no difference between the intervention and control groups on the financial subscale measure after intervention (p>0.05). BPI was an effective strategy to improve the quality of life of PCCCs. Similar interventions can be planned by practitioners to reduce the burden of childhood cancer on PCCCs. Copyright © 2016 Elsevier Inc. All rights reserved.

At the intersection of culture: Ethnically diverse dementia caregivers' service use.

PubMed

Richardson, Virginia E; Fields, Noelle; Won, Seojin; Bradley, Evie; Gibson, Allison; Rivera, Gretchen; Holmes, Sarah D

2017-01-01

This study used an ethnocultural approach to explore how cultural factors influenced ethnically diverse dementia caregivers' experiences and use of services. A modified thematic analysis of in-depth interviews with 15 caregivers, ranging in age from 50 to 75 years, including spouses, daughters, sons, cousins, and a friend, from three minority groups-African American, Hispanic, and South Korean caregivers-was conducted by a team of multi-lingual researchers. Caregiver stress was pervasive across all subgroups. Several themes emerged that were qualitatively different across groups, including knowledge about dementia, language barriers, religion and spirituality, and cultural differences in attitudes about caring and formal services. A two-pronged intervention model that includes a generic intervention to reduce caregiver stress along with a culturally targeted intervention tailored to a family's language, food preferences, religious practices, gender norms, and other values was recommended to more successfully reach and support these caregivers.

Ethnicity, familism and willingness to care: important influences on caregiver mood?

PubMed

Parveen, Sahdia; Morrison, Val; Robinson, Catherine A

2013-01-01

Few studies have to date examined the effects of ethnicity on caregiver motivations, coping responses and mood. This theoretically informed study uses the socio-cultural model of stress and coping to explore these relationships amongst a White-British and British South-Asian caregiver sample. A total of 235 primary family caregivers were recruited for a cross-sectional questionnaire survey; of which 162 were White-British and 73 were British South-Asian. British South-Asian caregivers differed from White-British caregivers on several variables within the stress-coping framework. British South-Asian caregivers were younger, had significantly higher levels of familism, used significantly more behavioural disengagement and religious coping and reported having significantly less support than White-British caregivers. White-British caregivers were more likely to make use of substances and humour as coping methods, and also in these caregivers, familism was significantly related to caregiver depression. Whilst levels of willingness to care did not differ between the two caregiver groups, opposing relationships were seen in the association between willingness to care and caregiver anxiety. Regression analyses found that self-blame explained a significant proportion of variance in South-Asian anxiety and depression, whereas depression amongst White-British caregivers was associated with high use of substances, low use of humour and low mean satisfaction with support. These findings offer support to the socio-cultural model of stress and coping in that coping is associated with two outcomes (anxiety and depression), but motivational factors are also highlighted which have additional implications for the development of culturally specific interventions aimed at reducing caregiver distress.

Justifications for caregiving in white, Asian American, and native Hawaiian grandparents raising grandchildren.

PubMed

Yancura, Loriena A

2013-01-01

Race has been found to predict justifications for caregiving in family caregivers for older adults. However, little is known about this relationship in another type of family caregiver, Grandparents Raising Grandchildren (GRG). This study examined relationships between race and justifications for caregiving in Asian American, Native Hawaiian, and White GRG. A sample of 259 GRG registered as students' primary caregivers with a public school system completed a modified version of the 10-item Cultural Justifications for Caregiving (CJCG) scale. CJCG items did not load onto a single analytic factor. Two factors, custom and responsibility, emerged. Race was predictive of custom, with Native Hawaiian GRG having significantly higher scores than White or Asian American GRG. Native Hawaiian GRG also scored higher than Asian American, but not White, GRG on responsibility. Justifications for raising grandchildren appear to differ among groups based on racial identification. Findings elucidate cultural justification for caregiving in understudied GRG populations and suggest that justifications for caregiving are configured differently in GRG and family caregivers for older adults. Future studies should examine justifications for caregiving in GRG of other races.

A multinational review of recent trends and reports in dementia caregiver burden.

PubMed

Torti, Frank M; Gwyther, Lisa P; Reed, Shelby D; Friedman, Joëlle Y; Schulman, Kevin A

2004-01-01

This systematic review of the literature focuses on the influence of ethnic, cultural, and geographic factors on the caregivers of patients with dementia. In particular, we explore the impact of cultural expectations on five important questions: 1) Do the characteristics of dementia affect caregiver burden? 2) Do characteristics of the caregiver independently predict burden? 3) Does the caregiver affect patient outcomes? 4) Does support or intervention for caregiver result in reduced caregiver burden or improved patient outcomes? 5) Finally, do patient interventions result in reduced caregiver burden or improved patient outcomes? Our findings suggest that noncognitive, behavioral disturbances of patients with dementia result in increased caregiver burden and that female caregivers bear a particularly heavy burden across cultures, particularly in Asian societies. Caregiver burden influences time to medical presentation of patients with dementia, patient condition at presentation, and patient institutionalization. Moreover, interventions designed to reduce caregiver burden have been largely, although not universally, unsuccessful. Pharmacological treatments for symptoms of dementia were found to be beneficial in reducing caregiver burden. The consistency of findings across studies, geographic regions, cultural differences, and heathcare delivery systems is striking. Yet, there are critical differences in cultural expectations and social resources. Future interventions to reduce caregiver burden must consider these differences, identify patients and caregivers at greatest risk, and develop targeted programs that combine aspects of a number of interventional strategies.

Health trajectories of family caregivers: associations with care transitions and adult day service use.

PubMed

Liu, Yin; Kim, Kyungmin; Zarit, Steven H

2015-06-01

The study examines family caregivers' health changes over 1 year on four health dimensions and explores the association of differential health trajectories with adult day service (ADS) use and caregiving transitions. The participants were 153 primary caregivers of individuals with dementia (IWDs) who provided information on care situations and their own health at baseline, 6-month, and 12-month interviews. Caregivers showed increasing functional limitations and decreasing bodily pain over time, whereas role limitation and general health perception remained stable. Furthermore, caregivers' trajectories of functional limitation were associated with their extent of ADS use at baseline and their relatives' placement. Health is multidimensional; all dimensions of caregiver health do not change in a uniform manner. The findings underscore the importance of the association of caregiving transitions and caregiver health and the potential health benefits of ADS use for family caregivers. © The Author(s) 2014.

[Living with advanced chronic obstructive pulmonary disease: The impact of dyspnoea on patients and caregivers].

PubMed

Costa, Xavier; Gómez-Batiste, Xavier; Pla, Margarida; Martínez-Muñoz, Marisa; Blay, Carles; Vila, Laura

2016-12-01

To understand the experiences of patients and caregivers living with advanced chronic obstructive pulmonary disease, the impact of their symptoms and care needs arising from a functional, emotional, and social context. Qualitative study. Phenomenological perspective. Data were collected during 2013-2015. Primary, secondary and intermediate care. Osona (Barcelona). The study included 10 Primary Care patients with advanced chronic obstructive pulmonary disease, their respective 10 caregivers, and 19 primary care professionals, as well as 2 lung specialists, 2 palliative care professionals involved in their care, and one clinical psychologist. Theoretical sampling. Semi-structured and in-depth interviews with patients, caregivers, and professionals (47 interviews). The emergent topics identified in patients and caregivers interviews refer to dyspnoea, the predominant symptom without effective treatment and with a major impact on patients and caregivers lives. A symptom with great functional, emotional and social repercussions to which they need to adapt in order to survive. Beyond pharmacological measures to control respiratory symptoms, proper care of patients with chronic obstructive pulmonary disease, requires understanding of suffering, the losses and limitations that it causes in their lives and those of their caregivers. A palliative, holistic and closer approach to their real experiences, together with an empowerment to adapt to debilitating symptoms, could contribute to a better life in the end-stages of the disease. Copyright © 2016 Elsevier España, S.L.U. All rights reserved.

Health-related quality of life in caregivers of patients with Alzheimer's disease.

PubMed

Garzón-Maldonado, F J; Gutiérrez-Bedmar, M; García-Casares, N; Pérez-Errázquin, F; Gallardo-Tur, A; Martínez-Valle Torres, M D

2017-10-01

Informal caregivers of patients with Alzheimer's disease (AD) have a poor health-related quality of life (HRQOL). HRQOL is an increasingly common user-focused outcome measure. We have evaluated HRQOL longitudinally in caregivers of AD patients at baseline and at 12 months. Ninety-seven patients diagnosed with AD according to the NINCDS-ADRDA (National Institute of Neurological and Communicative Disorders and Stroke, and Alzheimer's Disease and Related Disorders Association) and their 97 respective primary caregivers were included in the study. We analysed the following data at the baseline visit: sociodemographic data of both patients and carers, patients' clinical variables, and data related to the healthcare provided to patients by carers. HRQOL of caregivers was measured with the SF-36 questionnaire at baseline and 12 months later. At 12 months, primary caregivers scored lower in the 8 subscales of the SF-36 questionnaire; differences were statistically significant in all dimensions except for 'physical function' and 'social function'. Baseline scores in our sample were lower than those of the general population. 'Vitality' is the dimension that presented the lowest scores. HRQOL in caregivers of patients with Alzheimer's disease deteriorates over time and is poorer than that of the age- and sex-matched general population. Copyright © 2016 Sociedad Española de Neurología. Publicado por Elsevier España, S.L.U. All rights reserved.

Impact of Non-caregiving Related Stressors on Informal Caregiver Outcomes

PubMed Central

Lu, Yvonne Yueh-Feng; Perkins, Anthony J.; Boustani, Malaz; Callahan, Christopher M.; Hendrie, Hugh C.

2014-01-01

Background Caregivers of persons with dementia are stressed. Stressors not related to care recipients’ needs impact caregiver outcomes, yet are seldom reported. Methods 31 caregivers completed the Most Stressful Event form, Patient Health Questionnaire (PHQ-9) and the Revised Memory Behavioral Problem Checklist (R-MBPC). Fisher’s exact test and two-sample t-test were used to compare Most Stressful Events between caregivers. ANOVA model tested whether the PHQ-9 and R-MBPC subscales differed by stressor. Results Caregivers reported no stressors 21.5%, 1–2 stressors 25%, and 3 stressors 53% of the time with 318 stressors total. Care recipient needs (30.2%), caregiver needs (26.7%), and decision-making (16.7%) were the most frequently reported stressors. Using a mixed effects model, there were associations between Most Stressful Events and depression (p=0.016), mobility (p=0.024) and caregiver issues (p=0.009) subscales of R-MBPC. Conclusion Results can be used to develop intervention and support strategies for caregivers experiencing non-caregiving related stressors. PMID:24413541

An educative support group for female family caregivers: impact on caregivers psychological distress and patient's neuropsychiatry symptoms.

PubMed

Javadpour, Ali; Ahmadzadeh, Laaya; Bahredar, Mohammad Jafar

2009-05-01

In developing world most patients with dementia live in the community. And female family caregivers are the primary source to delivering care to patients. Educating and supporting the careers may reduce psychological distress and the challenging behavior as well. We run a non pharmacological intervention focusing on education regarding dementia, behavioral problems and interactive self support group. Twenty nine female family caregivers were assigned and divided in two groups of 15 and 14. Two hours weekly sessions were conducted for 8 weeks. Baseline and outcome measures were assessed using neuropsychiatry Inventory (NPI), general health questionnaire and perceived stress scale (PSS). Initial co relational analysis demonstrated a significant correlation between GHQ and total NPI scores but not for PSS. Paired sample test revealed significant change from baseline and at the end in both GHQ score and neuropsychiatry symptoms. This study supports the use of a non-pharmacologic intervention focusing on education in a feasible and cost benefit setting for dementia caregivers. (c) 2008 John Wiley & Sons, Ltd.

Cultural predictors of caregiving burden of Chinese-Canadian family caregivers.

PubMed

Lai, Daniel W L

2007-01-01

The growth of research knowledge on culturally diverse family caregivers for the aging population lags behind the increase of culturally diverse populations in Canada. This study examines the effects of culture, as manifested through cultural variables, on the caregiving burden of family caregivers in a Chinese-Canadian community. A random sample of 339 Chinese-Canadian caregivers for elderly relatives completed a telephone survey. Results of hierarchical stepwise multiple regression analysis reported the predicting effects of culture-related variables on caregiving burden. The findings indicated that being an immigrant, having a Western or non-Western religion as compared to having no religion, and having a lower level of filial piety, predicted a higher level of caregiving burden. Chinese tradition does not exempt the caregivers from being burdened. Policies and practices should address the needs of family caregivers according to the intra-cultural variations identified in this study.

Caregiving appraisal of family caregivers for older stroke patients in Korea.

PubMed

Lee, J; Yoo, M S; Jung, D

2010-03-01

The purpose of this study was to investigate factors related to caregiving appraisal for family caregivers of older stroke patients in Korea. A descriptive, cross-sectional survey of a sample of 242 family caregivers (95.7% response rate) was conducted in Korea from 1 January 2005 to 4 January 2007. Data were collected from outpatient stroke centres at three hospitals and two home health agencies located in Seoul, the capital city of Korea, its suburban area of Kyunggi-do, and the rural areas Gyeongsangbuk-do and Chungcheongbuk-do. The questionnaire was self-administered. spss 13.0 (SPSS, Inc., Chicago, IL, USA) was used to perform frequency, percentage, mean standard deviation, t-test or analysis of variance, and Pearson's correlation calculations. Caregiving appraisal was statistically different based on the caregiver's location of residency and the relationship between the caregiver and the recipient. The caregivers who resided in urban areas reported higher scores of caregiving appraisal compared with those who resided in rural areas. With regard to the caregiver-recipient relationship, spouses reported the highest caregiving distress status, followed by daughters-in-law, sons and, finally, daughters. In addition, caregiving distress significantly correlated with age (r = 0.151, P = 0.022), the number of caregiving hours per week (r = 0.198, P = 0.003) and filial obligations (r = 0.336, P = 0.000). The study results helped to better understand the caregiving process of Korean family caregivers. The data emphasized the importance of examining the expression of cultural roles and individual values on the caregivers' quality of life in diverse cultures. The knowledge gained from this study will be utilized to develop culture-specific interventions and social policies to directly support Korean family caregivers and to indirectly support stroke patients.

Older and Younger Family Caregivers of Adults with Intellectual Disability: Factors Associated with Future Plans

ERIC Educational Resources Information Center

Chou, Yueh-Ching; Lee, Yue-Chune; Lin, Li-Chan; Kroger, Teppo; Chang, Ai-Ning

2009-01-01

A structured interview survey was conducted in a major city in Taiwan to explore and compare older and younger family primary caregivers' well being and their future caregiving plans for these adults with intellectual disability. The sample size was 315 caregivers who were 55 years or older and who cared for adults with intellectual disability and…

Actor-partner interdependence analysis in depressed patient-caregiver dyads: Influence of emotional intelligence and coping strategies on anxiety and depression.

PubMed

Marguerite, Serres; Laurent, Boyer; Marine, Alessandrini; Tanguy, Leroy; Karine, Baumstarck; Pascal, Auquier; Xavier, Zendjidjian

2017-12-01

Major depressive disorder (MDD) is a leading cause of suffering for both patients and their natural caregivers. A preliminary study highlights the association of emotional intelligence (EI) and coping strategies with quality of life. However, there is a lack of studies concerning dyadic (i.e., patient and natural caregiver) characteristics' impact on anxious and depressive symptoms. In a sample of MDD patients-caregivers dyads, we explored the influence of EI and coping strategies on anxious and depressive symptoms using the actor-partner interdependence model (APIM). The cross-sectional study included 79 MDD patient-caregiver dyads. Self-reported data, completed by patients and their primary caregivers, were collected including socio-demographic, EI using TEIQue-SF, coping strategies using BriefCope, depressive symptoms using Beck Depression Inventory, anxious symptoms using STAI. The APIM was used to test the dyadic effects of EI and coping strategies on anxious and depressive symptoms, using structural equation modelling. Patients and caregivers reported both anxious and depressive symptoms. Coping strategies, such as problem solving, positive thinking and avoidance, exhibited evidence of actor (degree to which the individual's coping strategies are associated with their own anxiety or depression level) and partner effect (degree to which the individual's coping strategies are associated with the anxiety or depression level of the other member of the dyad). The caregivers' EI was associated with a decrease of their own depression level contrary to patients for which the results were not significant. The patients' and caregivers' EI was associated with a decrease of their own level of anxiety. EI and coping strategies were moderately associated with anxious and depressive symptomatology among MDD patient-caregiver dyads. These results suggest that targeted interventions could be proposed to both patients and caregivers. Copyright © 2017 Elsevier B.V. All rights

Effect of a training and educational intervention for physicians and caregivers on antibiotic prescribing for upper respiratory tract infections in children at primary care facilities in rural China: a cluster-randomised controlled trial.

PubMed

Wei, Xiaolin; Zhang, Zhitong; Walley, John D; Hicks, Joseph P; Zeng, Jun; Deng, Simin; Zhou, Yu; Yin, Jia; Newell, James N; Sun, Qiang; Zou, Guanyang; Guo, Yan; Upshur, Ross E G; Lin, Mei

2017-12-01

Inappropriate antibiotic prescribing contributes to the generation of drug resistance worldwide, and is particularly common in China. We assessed the effectiveness of an antimicrobial stewardship programme aiming to reduce inappropriate antibiotic prescribing in paediatric outpatients by targeting providers and caregivers in primary care hospitals in rural China. We did a pragmatic, cluster-randomised controlled trial with a 6-month intervention period. Clusters were primary care township hospitals in two counties of Guangxi province in China, which were randomly allocated to the intervention group or the control group (in a 1:1 ratio in Rong county and in a 5:6 ratio in Liujiang county). Randomisation was stratified by county. Eligible participants were children aged 2-14 years who attended a township hospital as an outpatient and were given a prescription following a primary diagnosis of an upper respiratory tract infection. The intervention included clinician guidelines and training on appropriate prescribing, monthly prescribing peer-review meetings, and brief caregiver education. In hospitals allocated to the control group, usual care was provided, with antibiotics prescribed at the individual clinician's discretion. Patients were masked to their allocated treatment group but doctors were not. The primary outcome was the antibiotic prescription rate in children attending the hospitals, defined as the cluster-level proportion of prescriptions for upper respiratory tract infections in 2-14-year-old outpatients, issued during the final 3 months of the 6-month intervention period (endline), that included one or more antibiotics. The outcome was based on prescription records and analysed by modified intention-to-treat. This study is registered with the ISRCTN registry, number ISRCTN14340536. We recruited all 25 eligible township hospitals in the two counties (14 hospitals in Rong county and 11 in Liujiang county), and randomly allocated 12 to the intervention group

Meaning in caregiving and its contribution to caregiver well-being.

PubMed

Noonan, A E; Tennstedt, S L

1997-12-01

This multivariate study examined the relationship between meaning in caregiving--positive beliefs about the caregiving situation and the self as caregiver--and the psychological well-being of 131 informal caregivers to community-residing frail elders. Measures of well-being included depression, self-esteem, mastery, role captivity, and loss of self. Meaning in caregiving explained a significant portion of the differences in depression and self-esteem scores even after demographic and stressor variables had been controlled. Meaning was not related to mastery, role captivity, or loss of self. The conceptual parameters of meaning in caregiving are discussed, as are directions for future research.

Sleep in caregivers: what we know and what we need to learn.

PubMed

McCurry, Susan M; Song, Yeonsu; Martin, Jennifer L

2015-11-01

The number of informal caregivers providing assistance to adults is increasing commensurate with our aging society. Sleep disturbances are prevalent in caregivers and associated with negative physical, medical, and functional outcomes. Here, we describe the predisposing, precipitating, and perpetuating factors contributing to the development of sleep problems in caregivers, and discuss three understudied caregiving populations that have clinical importance and unique circumstances influencing sleep quality and health. There is clear evidence supporting the interaction between sleep loss, caregiving stress, and vulnerability to chronic disease. Telehealth and telemedicine sleep interventions for caregivers combined with assistive technologies targeting care-receivers have potential to be more individualized, affordable, and widely accessible than traditional in-person insomnia treatment approaches. Limited data exist describing the etiology and treatment of sleep problems in caregivers of veterans, medical patients newly discharged from the hospital, and developmentally disabled adults. There is a growing literature describing the general determinants of sleep disturbances in caregivers, the health consequences of these disturbances, and intervention strategies for treating them. Identifying effective sleep treatments suited to more specialized caregiving situations and increasing intervention access will help caregivers continue to provide quality care while protecting their own health and well-being.

Sleep among bereaved caregivers of patients admitted to hospice: a 1-year longitudinal pilot study

PubMed Central

Slåtten, Kari; Saghaug, Elisabeth; Grov, Ellen Karine; Normann, Are Peder; Lee, Kathryn A; Bjorvatn, Bjørn; Gay, Caryl L

2016-01-01

Objectives This pilot study aimed to describe the sleep of partners and other family caregivers prior to and in the first year after a hospice patient's death. The study also evaluated the feasibility of the study protocol and determined the effect sizes in preparation for a full-scale study. Design The pilot study used a longitudinal, descriptive and comparative design. Setting and participants Participants included primary family caregivers of patients admitted to a hospice in Oslo, Norway. Primary outcome Caregiver sleep was measured subjectively with the Pittsburgh Sleep Quality Index (PSQI) and objectively using wrist actigraphy for 4 nights and 3 days at three different times: during the hospice stay, and at 6 and 12 months after the patient's death. Results 16 family caregivers (10 partners and 6 other family members) completed the 1-year study protocol. Overall, sleep quality and quantity were stable over time and at each assessment, approximately half of the sample had poor sleep quality, both by self-report and objective measures. However, the sleep trajectories differed significantly over time, with older caregivers (≥65 years) having significantly longer sleep durations than younger caregivers (<65 years). Furthermore, sleep quality also differed over time depending on the caregiver's relationship to the patient, with partner caregivers having significantly worse sleep quality than other family caregivers. Conclusions Caring for a dying family member is known to interfere with sleep, yet little is known about bereaved caregivers. The results of this pilot study demonstrate the feasibility of the longitudinal study protocol and indicate that sleep problems are common for caregivers and continue into the bereavement period, particularly for partner caregivers. The caregiver's relationship to the patient may be an important factor to consider in future studies. PMID:26729383

Caregiving burden and its determinants in Polish caregivers of stroke survivors.

PubMed

Jaracz, Krystyna; Grabowska-Fudala, Barbara; Górna, Krystyna; Kozubski, Wojciech

2014-10-27

Despite the growing body of literature on the consequences of providing non-professional care to stroke survivors, the determinants of caregiving burden are still not fully recognized. Identification of significant determinants can facilitate caregiver intervention programs. The aim of this study was to evaluate the level of burden borne by caregivers of stroke patients and to identify the most important determinants of burden at 6 months after hospitalization. Data were collected from 150 pairs of stroke patients/caregivers. Caregiver burden was assessed on the Caregiver Burden scale (CB). Several characteristics were measured as potential predictors of the burden. Special attention was paid to the caregiver's sense of coherence (SOC) and anxiety. Regression analysis was employed to test the hypothesized relationships between these variables and the burden. Forty-seven percentage of the caregivers reported a substantial burden (severe or moderate). Caregiver SOC (p < 0.001), anxiety (p < 0.001) and the patients' functional status (p < 0.001) were the most important predictors of the overall burden and the most consistent predictors of the majority of aspects included in the CB scale. Caregiver health, patient's gender, time spent caregiving and social support were also factors related to the burden. The identified predictors explained 67% of the variance in the overall burden. Clinicians and other professionals should focus on the coping abilities of caregivers, their emotional state and the level of patients' dependency, as these are the vital and modifiable factors affecting caregiver burden following stroke.

Distance education methods are useful for delivering education to palliative caregivers: A single-arm trial of an education package (PalliativE Caregivers Education Package).

PubMed

Forbat, Liz; Robinson, Rowena; Bilton-Simek, Rachel; Francois, Karemah; Lewis, Marsha; Haraldsdottir, Erna

2018-02-01

Face-to-face/group education for palliative caregivers is successful, but relies on caregivers travelling, being absent from the patient, and rigid timings. This presents inequities for those in rural locations. To design and test an innovative distance-learning educational package (PrECEPt: PalliativE Caregivers Education Package). Single-arm mixed-method feasibility proof-of-concept trial (ACTRN12616000601437). The primary outcome was carer self-efficacy, with secondary outcomes focused on caregiver preparedness and carer tasks/needs. Analysis focused on three outcome measures (taken at baseline and 6 weeks) and feasibility/acceptability qualitative data. A single specialist palliative care service. Eligible informal caregivers were those of patients registered with the outpatient or community service, where the patient had a prognosis of ⩾12 weeks, supporting someone with nutrition/hydration and/or pain management needs, proficient in English and no major mental health diagnosis. Two modules were developed and tested (nutrition/hydration and pain management) with 18 caregivers. The materials did not have a statistically significant impact on carer self-efficacy. However, statistically significant improvements were observed on the two subsidiary measures of (1) caregiving tasks, consequences and needs ( p = 0.03, confidence interval: 0.72, 9.4) and (2) caregiver preparedness ( p = 0.001, confidence interval: -1.22, -0.46). The study determined that distance learning is acceptable and feasible for both caregivers and healthcare professionals. Distance education improves caregiver preparedness and is a feasible and acceptable approach. A two-arm trial would determine whether the materials benefitted caregivers and patients compared to a control group not receiving the materials. Additional modules could be fruitfully developed and offered.

Differential Patient-Caregiver Opinions of Treatment and Care For Advanced Lung Cancer Patients

PubMed Central

Zyzanski, Stephen J; Siminoff, Laura A

2010-01-01

This study examined the differences of opinion between cancer patients and caregivers with regard to treatment and care decisions. 184 advanced lung cancer patients and 171 primary caregivers were recruited as a convenience sample from clinics in Cleveland, Ohio. A telephone interview was conducted to collect data using a semi-structured questionnaire. Nonparametric tests and regression analysis were performed. The findings showed that patients and caregivers reported significant disagreement on three main issues: trade-off between treatment side effects and benefits; reporting treatment side effects to physicians, and hospice care. Caregivers were more concerned about patient’s quality of life and more willing to discuss hospice issues than were patients. Perceived family disagreement is associated with depression in both patients and caregivers. The study provided empirical evidence for patient-caregiver disagreement about treatment and care decisions and its significant adverse impact on both patients and caregivers. PMID:20137849

The Relationship Between Caregiving and Mortality After Accounting for Time-Varying Caregiver Status and Addressing the Healthy Caregiver Hypothesis.

PubMed

Fredman, Lisa; Lyons, Jennifer G; Cauley, Jane A; Hochberg, Marc; Applebaum, Katie M

2015-09-01

Previous studies have shown inconsistent associations between caregiving and mortality. This may be due to analyzing caregiver status at baseline only, and that better health is probably related to taking on caregiving responsibilities and continuing in that role. The latter is termed The Healthy Caregiver Hypothesis, similar to the Healthy Worker Effect in occupational epidemiology. We applied common approaches from occupational epidemiology to evaluate the association between caregiving and mortality, including treating caregiving as time-varying and lagging exposure up to 5 years. Caregiving status among 1,068 women (baseline mean age = 81.0 years; 35% caregivers) participating in the Caregiver-Study of Osteoporotic Fractures study was assessed at five interviews conducted between 1999 and 2009. Mortality was determined through January 2012. Cox proportional hazards models were used to estimate adjusted hazard ratios and 95% confidence intervals adjusted for sociodemographics, perceived stress, and functional limitations. A total of 483 participants died during follow-up (38.8% and 48.7% of baseline caregivers and noncaregivers, respectively). Using baseline caregiving status, the association with mortality was 0.77, 0.62-0.95. Models of time-varying caregiving status showed a more pronounced reduction in mortality in current caregivers (hazard ratios = 0.54, 0.38-0.75), which diminished with longer lag periods (3-year lag hazard ratio = 0.68, 0.52-0.88, 5-year lag hazard ratios = 0.76, 0.60-0.95). Overall, caregivers had lower mortality rates than noncaregivers in all analyses. These associations were sensitive to the lagged period, indicating that the timing of leaving caregiving does influence this relationship and should be considered in future investigations. © The Author 2015. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

The mediating effect of caregiver burden on the caregivers' quality of life.

PubMed

Jeong, Yeon-Gyu; Jeong, Yeon-Jae; Kim, Won-Cheol; Kim, Jeong-Soo

2015-05-01

[Purpose] Quality of life (QoL) can be closely related to caregiver burden, which may be a potential mediating effect on the relationships among stroke patient caregivers. This study investigated the predictors of caregiver's QoL based on patient and caregiver characteristics, with caregiver burden as a mediator. [Methods] This study was conducted using surveys, a literature review, and interviews. Survey data were collected from 238 subjects, who were diagnosed with stroke, and their family caregivers from October 2013 to April 2014. [Results] Caregiver health status, income, spouses caring for patients, and duration of hospitalization were identified as significant predictors of caregivers' QoL with a mediating effect of caregiver burden. The time spent on caregiving per day and patient education level were the only direct predictors of caregivers' QoL. [Conclusion] The responsibility of caring for patients with stroke, in particular for a spouse, must be administered by means of a holistic family-centered rehabilitation program. In addition, financial support and availability of various health and social service programs must be comprehensively provided in order to maintain caregivers' well-being.

Caregivers' Willingness to Pay for Technologies to Support Caregiving.

PubMed

Schulz, Richard; Beach, Scott R; Matthews, Judith T; Courtney, Karen; De Vito Dabbs, Annette; Mecca, Laurel Person

2016-10-01

We report the results of a study designed to assess whether and how much informal caregivers are willing to pay for technologies designed to help monitor and support care recipients (CRs) in performing kitchen and personal care tasks. We carried out a web survey of a national sample of adult caregivers (age 18-64) caring for an older adult (N = 512). Respondents completed a 25min online survey that included questions about their caregiving situation, current use of everyday technology, use of specific caregiving technologies, general attitudes toward technology, and questions about technologies designed to help them monitor and provide assistance for CRs' kitchen and self-care activities. About 20% of caregivers were not willing to pay anything for kitchen and self-care technologies. Among those willing to pay something, the mean amount was approximately $50 per month for monitoring technologies and $70 per month for technologies that both monitored and provided some assistance. Younger caregivers, those caring for a person with Alzheimer's disease, and caregivers with more positive attitudes toward and experience with technology were willing to pay more. Most caregivers feel that the government or private insurance should help pay for these technologies. Caregivers are receptive and willing to pay for technologies that help them care for their CR, although the amount they are willing to pay is capped at around $70 per month. The combination of private pay and government subsidy may facilitate development and dissemination of caregiver technologies. © The Author 2015. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

A broader view of family caregiving: effects of caregiving and caregiver conditions on depressive symptoms, health, work, and social isolation.

PubMed

Robison, Julie; Fortinsky, Richard; Kleppinger, Alison; Shugrue, Noreen; Porter, Martha

2009-11-01

Informal caregivers provide the majority of long-term care. This study examined six health and psychosocial outcomes of caregiving, in the context of multiple characteristics of the caregiving situation, in a representative, statewide sample. Data came from 4,041 respondents to the 2007 Connecticut Long-Term Care Needs Assessment. Analyses investigated whether caregiving negatively affects depressive symptoms, health, missing work, and social isolation. Logistic regressions tested the independent effects of caregiver characteristics and conditions of the caregiving situation on these health and psychosocial outcomes. Caregivers rate their health better than noncaregivers and do not report more depressive symptoms or social isolation. Living with the care receiver, inadequate income, and care receivers' unmet need for community-based long-term care services relate to multiple negative outcomes. Care receiver memory problems and caregiver/care receiver relationship do not relate to health or psychosocial outcomes when these other factors are considered. Caregiving per se does not lead to symptoms of depression, poor health, or social isolation. Many caregivers do need supports in training and education, respite, and physical and mental health care. Such programs should provide outreach to caregivers facing specific stressful conditions, as not all caregivers experience negative consequences.

Fatigue in family caregivers of adult intensive care unit survivors.

PubMed

Choi, JiYeon; Tate, Judith A; Hoffman, Leslie A; Schulz, Richard; Ren, Dianxu; Donahoe, Michael P; Given, Barbara A; Sherwood, Paula R

2014-09-01

Family caregivers are a vital resource in the recovery of intensive care unit (ICU) survivors. Of concern, the stress associated with this role can negatively affect caregiver health. Fatigue, an important health indicator, has been identified as a predictor of various illnesses, greater use of health services, and early mortality. Examining the impact of fatigue on caregivers' physical health can assist in identifying critical time points and potential targets for intervention. To describe self-reported fatigue in caregivers of ICU survivors from patients' ICU admission to ≤ 2 weeks, two- and four-months post-ICU discharge. Patient-caregiver pairs were enrolled from a medical ICU. Caregiver fatigue was measured using the Short-Form 36 Health Survey Vitality subscale (SF-36 Vitality). Caregiver psychobehavioral stress responses included depressive symptoms, burden, health risk behaviors, and sleep quality. Patient data included self-reported physical symptoms and disposition (home vs. institution). Forty-seven patient-caregiver pairs were initially enrolled. Clinically significant fatigue (SF-36 Vitality ≤ 45) was reported by 43%-53% of caregivers across the time points, and these caregivers reported worse scores in measures of depressive symptoms, burden, health risk behaviors and sleep quality, and patients' symptom burden. In 26 caregivers with data for all time points (55% of the total sample), SF-36 Vitality scores showed trends of improvement when the patient returned home and greater impairment when institutionalization continued. In caregivers of ICU survivors, fatigue is common and potentially linked with poor psychobehavioral responses. Worsening fatigue was associated with greater symptom distress and long-term patient institutionalization. Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Caregivers' experience in patients with chronic diseases.

PubMed

Grapsa, Eirini; Pantelias, Kostantinos; Ntenta, Edmond; Pipili, Chrysoula; Kiousi, Eva; Samartzi, Maria; Karagiannis, Stylianos; Heras, Panagiotis

2014-01-01

The aim of this study was to describe the characteristics of caregivers of patients with chronic diseases, assess their perceived burden, and investigate factors influencing this burden. Seventy-three patient-attendants (43 men and 30 women) participated in the pilot-research conducted by two clinics. Of them, 68% attended patients with a malignant disease and 32% attended patients in the end stage of renal disease. Based on questionnaire data, the influence of the social support was studied, in particular that of family members or through state programmers. Family members are the primary caregivers (spouses 51%, children 29%, and others 20%). Psychological support is the main important help that they need and there are a small number of caregivers who have access to a network of medical and social support. It is found that the family still remains the main supporting mechanism for attendants and patients in our population.

Predictors of caregiver burden in Iranian family caregivers of cancer patients.

PubMed

Mirsoleymani, Seyed Reza; Rohani, Camelia; Matbouei, Mahsa; Nasiri, Malihe; Vasli, Parvaneh

2017-01-01

Caregiver burden threatens the psychological, emotional, functional and even physical health of caregivers. The aims of this study were to determine caregiver burden and family distress and the relationship between them, also to explore predictors of caregiver burden in a sample of Iranian family caregivers of cancer patients. This is a cross-sectional study with correlational design. A total of 104 family caregivers of cancer patients were asked to respond to the Caregiver Burden Inventory (CBI) and the Family Distress Index (FDI) together with a sociodemographic questionnaire. For evaluating the relationship between CBI and FDI scores, the Pearson's product-moment correlation was used. In addition, multiple linear regression analysis was applied to explore the predictive factors of caregiver burden. A high burden was experienced by almost half of the caregivers (48.1%). The FDI mean score was 9.76 ± 5.40 ranged from 0 to 24. A strong positive correlation was found between the caregiver burden and family distress ( r = 0.76). Multiple linear regression results showed the predictive role of FDI score (β = 0.71, P = 0.001), patient's gender (β = -0.25, P = 0.001), and early cancer diagnosis (β =0.13, P = 0.027) in caregiver burden. They could explain 65% of variance in the level of burden in family caregivers. Family nurses should consider the caregivers burden and vulnerability of families with cancer patient, especially if the patient is a male or has a new diagnosis. They should also design special programs for the whole family as a system that family can adapt to the new situation.

Balancing competing needs mediates the association of caregiving demand with caregiver role strain and depressive symptoms of dementia caregivers: A cross-sectional study.

PubMed

Liu, Hsin-Yun; Yang, Ching-Tzu; Wang, Yu-Nu; Hsu, Wen-Chuin; Huang, Tzu-Hsin; Lin, Yueh-E; Liu, Chin-Yi; Shyu, Yea-Ing L

2017-12-01

To examine the role of balancing competing needs in the relationship between caregiving demand and caregiving outcomes (caregivers' role strain and depressive symptoms). Caregivers who do not balance competing needs are more likely to experience negative caregiving outcomes, suggesting that balance mediates between caregiving demand and caregiving outcomes. Identifying a mediator of negative caregiving effects may help in developing tailored interventions for family caregivers of persons with dementia. A cross-sectional, correlational design. Data were collected from family caregivers' self-completed questionnaires between March 2013 - April 2014. A convenience sample of 120 family caregivers and care receivers with dementia was enrolled. We examined whether balance mediated the relationship between caregiving demand and caregiving outcomes (caregivers' role strain and depressive symptoms) by multiple regression analysis. To evaluate the significance of the indirect effect of caregiver balance, we used the Sobel test and Monte Carlo method, an alternative approach to testing mediation. Balancing competing needs completely mediated the association of caregiving demand with depressive symptoms and partially mediated the association of caregiving demand with role strain. Assessing caregivers' self-perceived sense of balance may help to identify caregivers at high risk for role strain and depressive symptoms. Interventions to enhance caregivers' perceived sense of balance between competing needs may provide a strategy for reducing the negative effects of caregiving. © 2017 John Wiley & Sons Ltd.

Evaluation of caregiver-friendly workplace policy (CFWPs) interventions on the health of full-time caregiver employees (CEs): implementation and cost-benefit analysis.

PubMed

Williams, Allison M; Tompa, Emile; Lero, Donna S; Fast, Janet; Yazdani, Amin; Zeytinoglu, Isik U

2017-09-20

; other nuances at play. It is hypothesized that the benefits of the caregiver-friendly workplace policy intervention(s) will include improvements in caregiver-employees' mental, psychosocial and physical health, as well as evidence of cost-benefit and cost-effectiveness for the employer. The expected project results will provide the research evidence for extensive knowledge translation work, to be carried out in collaboration with our knowledge transition partners, to the employer/human resources and occupational health/safety target populations. ISRCTN16187974 Registered August 25, 2016.

Double- and Triple-Duty Caregiving Men: An Examination of Subjective Stress and Perceived Schedule Control.

PubMed

DePasquale, Nicole; Zarit, Steven H; Mogle, Jacqueline; Moen, Phyllis; Hammer, Leslie B; Almeida, David M

2018-04-01

Based on the stress process model of family caregiving, this study examined subjective stress appraisals and perceived schedule control among men employed in the long-term care industry (workplace-only caregivers) who concurrently occupied unpaid family caregiving roles for children (double-duty child caregivers), older adults (double-duty elder caregivers), and both children and older adults (triple-duty caregivers). Survey responses from 123 men working in nursing home facilities in the United States were analyzed using multiple linear regression models. Results indicated that workplace-only and double- and triple-duty caregivers' appraised primary stress similarly. However, several differences emerged with respect to secondary role strains, specifically work-family conflict, emotional exhaustion, and turnover intentions. Schedule control also constituted a stress buffer for double- and triple-duty caregivers, particularly among double-duty elder caregivers. These findings contribute to the scarce literature on double- and triple-duty caregiving men and have practical implications for recruitment and retention strategies in the health care industry.

Caregiving-specific worry, affiliate stigma, and perceived social support on psychological distress of caregivers of children with physical disability in Hong Kong.

PubMed

Ma, Gloria Y K; Mak, Winnie W S

2016-01-01

The present study tested a model on the relationship between functional status of children with physical disability, caregiving-specific worry, affiliate stigma, and psychological distress among their caregivers. One hundred thirty-one caregivers of children with physical disability in Hong Kong completed a self-report questionnaire. Structural equation modeling showed that the final model had good fit to the data: χ2 = 102.05, (df = 83, p = .08), comparative fit index = .98, nonnormed fit index = .98, standardized root mean square residual = .08, root mean square error of approximation = .04. Caregivers whose children had a lower functional status reported more caregiving-specific worry. Affiliate stigma had significant and positive indirect effect on psychological distress through increasing worry. Results also supported the direct and indirect effects of perceived social support in ameliorating worry, affiliate stigma, and psychological distress. Findings suggested that health care and social service providers should consider the functional impairment of each child when designing stress reduction interventions for their caregivers. Findings implicate the importance of establishing barrier-free environment and public facilities in the society. Caregivers are encouraged to distinguish those worries that are actionable and convert them into problem solving plans and to actively engage in peer support and social activities to reduce their affiliate stigma. To truly promote inclusion and well-being of individuals with disability and their caregivers, the scope and targets of social services and stigma reduction programs by the government should include not only the persons with disabilities, but also their caregivers and family members who play essential roles in the rehabilitation journey. (PsycINFO Database Record (c) 2016 APA, all rights reserved).

Examining Live-In Foreign Domestic Helpers as a Coping Resource for Family Caregivers of People With Dementia in Singapore.

PubMed

Basnyat, Iccha; Chang, Leanne

2017-09-01

In Singapore, the responsibility of caring for persons with dementia falls on family members who cope with a long-term caregiver burden, depending on available support resources. Hiring foreign domestic workers to alleviate caregiver burden becomes a prevalent coping strategy that caregivers adopt. This strategy allows caregivers to provide home care as part of fulfilling family obligations while managing the caregiver burden. This study aimed to investigate primary caregivers' relationship with hired support and its impact on coping with caregiver burden. Twenty in-depth interviews were conducted with primary caregivers who hired live-in domestic helpers to take care of their family members with dementia. The findings revealed that caregivers perceived the normative obligations to provide home care to family members with dementia. They sought support from domestic helpers to cope with physical and mental burnout, disruption of normal routines, and avoidance of financial strain. A mutual-support relationship was built between caregivers and domestic helpers through trust and interdependence. The presence of domestic helpers as a coping resource reveals the positive outcomes of problem-, emotional-, and diversion-focused coping. This study illustrates that coping strategies are employed in different ways depending on the needs of caregivers, access to infrastructure, cultural expectations, and available resources.

Caregivers

MedlinePlus

Caregivers provide help to another person in need. The person receiving care may be an adult - often ... or a child with special medical needs. Some caregivers are family members. Others are paid. They do ...

A Comprehensive Support Program: Effect on Depression in Spouse-Caregivers of AD Patients.

ERIC Educational Resources Information Center

Mittelman, Mary S.; And Others

1995-01-01

Describes a psychosocial intervention program that treats the primary caregiver and family members of the Alzheimer's patient over the entire course of the disease. In the first year after intake, the control group became increasingly more depressed, whereas the treatment group remained stable. By the eighth month, treated caregivers were…

Caregiver Confidence: Does It Predict Changes in Disability among Elderly Home Care Recipients?

ERIC Educational Resources Information Center

Li, Lydia W.; McLaughlin, Sara J.

2012-01-01

Purpose of the study: The primary aim of this investigation was to determine whether caregiver confidence in their care recipients' functional capabilities predicts changes in the performance of activities of daily living (ADL) among elderly home care recipients. A secondary aim was to explore how caregiver confidence and care recipient functional…

Assessment of Depression in Dementia Patients: Association of Caregiver Mood with Depression Ratings.

ERIC Educational Resources Information Center

Teri, Linda; Truax, Paula

1994-01-01

Primary caregivers (n=41) of memory-impaired patients rated a standardized stimulus of depression and their actual patient. They were able to correctly identify depression in both. Further, their mood was unassociated with video ratings and only moderately associated with patient ratings. The findings support reliance on caregiver input.…

Colorectal cancer patients' preferences for type of caregiver during survivorship care.

PubMed

Wieldraaijer, T; Duineveld, L A M; Donkervoort, S C; Busschers, W B; van Weert, H C P M; Wind, J

2018-03-01

Colorectal cancer (CRC) survivors are currently included in a secondary care-led survivorship care programme. Efforts are underway to transfer this survivorship care to primary care, but met with some reluctance by patients and caregivers. This study assesses (1) what caregiver patients prefer to contact for symptoms during survivorship care, (2) what patient factors are associated with a preferred caregiver, and (3) whether the type of symptom is associated with a preferred caregiver. A cross-sectional study of CRC survivors at different time points. For 14 different symptoms, patients reported if they would consult a caregiver, and who they would contact if so. Patient and disease characteristics were retrieved from hospital and general practice records. Two hundred and sixty patients participated (response rate 54%) of whom the average age was 67, 54% were male. The median time after surgery was seven months (range 0-60 months). Patients were divided fairly evenly between tumour stages 1-3, 33% had received chemotherapy. Men, patients older than 65 years, and patients with chronic comorbid conditions preferred to consult their general practitioner (GP). Women, patients with stage 3 disease, and patients that had received chemotherapy preferred to consult their secondary care provider. For all symptoms, patients were more likely to consult their GP, except for (1) rectal blood loss, (2) weight loss, and (3) fear that cancer had recurred, in which case they would consult both their primary and secondary care providers. Patients appreciated all caregivers involved in survivorship care highly; with 8 out of 10 points. CRC survivors frequently consult their GP in the current situation, and for symptoms that could alarm them to a possible recurrent disease consult both their GP and secondary care provider. Patient and tumour characteristics influence patients' preferred caregiver.

In the Information Age, do dementia caregivers get the information they need? Semi-structured interviews to determine informal caregivers' education needs, barriers, and preferences.

PubMed

Peterson, Kendra; Hahn, Howard; Lee, Amber J; Madison, Catherine A; Atri, Alireza

2016-09-23

Most patients with dementia or cognitive impairment receive care from family members, often untrained for this challenging role. Caregivers may not access publicly available caregiving information, and caregiver education programs are not widely implemented clinically. Prior large surveys yielded broad quantitative understanding of caregiver information needs, but do not illuminate the in-depth, rich, and nuanced caregiver perspectives that can be gleaned using qualitative methodology. We aimed to understand perspectives about information sources, barriers and preferences, through semi-structured interviews with 27 caregivers. Content analysis identified important themes. We interviewed 19 women, 8 men; mean age 58.5 years; most adult children (15) or spouses (8) of the care recipient. Dementia symptoms often developed insidiously, with delayed disease acknowledgement and caregiver self-identification. While memory loss was common, behavioral symptoms were most troublesome, often initially unrecognized as disease indicators. Emerging themes: 1.) Barriers to seeking information often result from knowledge gaps, rather than reluctance to assume the caregiver role; 2.) Most caregivers currently receive insufficient information. Caregivers are open to many information sources, settings, and technologies, including referrals to other healthcare professionals, print material, and community and internet resources, but expect the primary care provider (PCP) to recommend, endorse, and guide them to specific sources. These findings replicated and expanded on results from previous quantitative surveys and, importantly, revealed a previously unrecognized essential factor: despite receiving insufficient information, caregivers place critical value on their relationship with care recipient PCPs to receive recommendations, guidance and endorsement to sources of caregiving information. Implications include: 1.) Greater public education is needed to help caregivers identify and

Caregiver Strain among Black and White Daughter Caregivers: A Role Theory Perspective.

ERIC Educational Resources Information Center

Mui, Ada C.

1992-01-01

Examined caregiving strain of 117 African-American and 464 white daughter caregivers. African Americans reported less role strain. Conflict between caregiving duties and caregivers' personal/social life was predictor for both groups. Unique predictors were poor perceived health, unavailability of respite support, and lower caregiving role demand…

Orphan/vulnerable child caregiving moderates the association between women's autonomy and their BMI in three African countries.

PubMed

Kanamori, Mariano; Carter-Pokras, Olivia; Madhavan, Sangeetha; Feldman, Robert; He, Xin; Lee, Sunmin

2014-01-01

Enhancement of women's autonomy is a key factor for improving women's health and nutrition. With nearly 12 million orphan and vulnerable children (OVC) in Africa due to HIV/AIDS, the study of OVC primary caregivers' nutrition is fundamental. We investigated the association between married women's autonomy and their nutritional status; explored whether this relationship was modified by OVC primary caregiving; and analyzed whether decision-making autonomy mediated the association between household wealth and body mass index (BMI). This cross-sectional study used the data from Demographic Health Surveys collected during 2006-2007 from 20- to 49-year-old women in Namibia (n = 2633), Swaziland (n = 1395), and Zambia (n = 2920). Analyses included logistic regression, Sobel, and Goodman tests. Our results indicated that women's educational attainment increased the odds for being overweight (Swaziland and Zambia) and decreased the odds for being underweight (Namibia). In Zambia, having at least primary education increased the odds for being overweight only among child primary caregivers regardless of the OVC status of the child, and having autonomy for buying everyday household items increased the odds for being overweight only among OVC primary caregivers. Decision-making autonomy mediated the association between household wealth and OVC primary caregivers' BMI in Zambia (Z = 2.13, p value = 0.03). We concluded that depending on each country's contextual characteristics, having education can decrease the odds for being an underweight woman or increase the odds for being an overweight woman. Further studies should explore why in Namibia education has an effect on women's overweight status only among women who are caring for a child.

Spousal Caregiver Narratives and Credible Authority: Uncertainty in Illness of Spousal Caregivers

ERIC Educational Resources Information Center

Sodowsky, Karen

2012-01-01

This article is taken from a larger longitudinal study that used caregiver interviews, caregiver surveys, and caregiver statistical information of one community. The interviews were conducted with six spousal caregivers to examine the narratives produced by spouses actively caring for their partners with dementia. The spousal caregivers were…

Caregiver bodywork: family members' experiences of caring for a person with motor neurone disease.

PubMed

Ray, Robin A; Street, Annette F

2006-10-01

This paper reports a study of how family members caring for people living with motor neurone disease managed the deteriorating body, their own bodywork and the associated emotional labour. People living with the neurodegenerative condition of motor neurone disease face the prospect of dying in 3-5 years from progressive loss of voluntary muscle mass and function, culminating in respiratory failure. Theories concerning the body in illness have been used to illustrate patient perspectives; however, family caregivers' experiences of the body have been neglected. An ethnographic case study was undertaken with 18 primary family caregivers and six peripheral caregivers. Primary caregivers participated over 10 months in three face-to-face, semi-structured interviews which included mapping their support networks using ecomaps. Observational data were also recorded as field notes. Peripheral caregivers were interviewed once during the same time period. The data were generated between 2003 and 2004. Informal caregiving requires engagement in various aspects of bodywork. Three body concepts were identified: the visible body--how the disease affected the patient and caregivers; the dependent body--the resulting care requirements; and the social body--how living with motor neurone disease affected their social support networks. The visible body is a continual reminder of the ravages of the disease, while the dependent body demands physical and emotional care. Social interactions decline over time, depriving family caregivers of the much needed support for sustaining their commitment to the bodywork required in caregiving. The demands of bodywork for family caregivers are increased by the continual presence of emotional labour as they seek to implement the best way to support their relative with motor neurone disease. Nurses and allied healthcare workers need to assess each family situation, asking appropriate questions to establish the most appropriate interventions to

Fatigue in Family Caregivers of Adult Intensive Care Unit Survivors

PubMed Central

Choi, JiYeon; Tate, Judith A.; Hoffman, Leslie A.; Schulz, Richard; Ren, Dianxu; Donahoe, Michael P.; Given, Barbara A.; Sherwood, Paula R.

2014-01-01

Context Family caregivers are a vital resource in the recovery of intensive care unit (ICU) survivors. Of concern, the stress associated with this role can negatively affect caregiver health. Fatigue, an important health indicator, has been identified as a predictor of various illnesses, greater use of health services, and early mortality. Examining the impact of fatigue on caregivers’ physical health can assist in identifying critical time points and potential targets for intervention. Objectives To describe self-reported fatigue in caregivers of ICU survivors from patients’ ICU admission to ≤ two weeks, two- and four-months post-ICU discharge. Methods Patient-caregiver pairs were enrolled from a medical ICU. Caregiver fatigue was measured using the Short-Form-36 Health Survey Vitality subscale (SF-36 Vitality). Caregiver psychobehavioral stress responses included depressive symptoms, burden, health risk behaviors, and sleep quality. Patient data included self-reported physical symptoms and disposition (home vs. institution). Results Forty seven patient-caregiver pairs were initially enrolled. Clinically significant fatigue (SF-36 Vitality ≤ 45) was reported by 43% to 53% of caregivers across the time points and these caregivers reported worse scores in measures of depressive symptoms, burden, health risk behaviors and sleep quality, and patients’ symptom burden. In 26 caregivers with data for all time points (55% of the total sample), SF-36 Vitality scores showed trends of improvement when the patient returned home and greater impairment when institutionalization continued. Conclusion In caregivers of ICU survivors, fatigue is common and potentially linked with poor psychobehavioral responses. Worsening fatigue was associated with greater symptom distress and long-term patient institutionalization. PMID:24439845

Child’s Autism Severity: Effect on West Virginia Caregiver Satisfaction with School Services

PubMed Central

Vohra, Rini; Madhavan, Suresh; Khanna, Rahul; Becker-Cottrill, Barbara

2016-01-01

Survey data was collected from 301 primary caregivers of children with autism registered at West Virginia Autism Training Center (WV ATC), to examine the impact of child’s autism severity on caregiver satisfaction with school services. Satisfaction with six school services was measured via a 3-point Likert scale: speech-language therapy, occupational therapy, social skills training, physical therapy, behavioral interventions, and assistance in improving study skills. Ordinal logistic regressions showed that caregivers of children with high autism severity were less likely to be satisfied with school services, as compared to caregivers of children with low autism severity (OR’s from 0.45 to 0.39). No significant differences existed in caregiver satisfaction with services between high and low autism severity groups, after addition of caregiver burden to the model. Findings suggest that child’s autism severity is a significant predictor of caregiver satisfaction with school services, and should be considered during development of child’s Individualized Education Program (IEP) and evaluation of caregiver satisfaction with the IEP. PMID:25643472

Reliability of primary caregivers reports on lifestyle behaviours of European pre-school children: the ToyBox-study.

PubMed

González-Gil, E M; Mouratidou, T; Cardon, G; Androutsos, O; De Bourdeaudhuij, I; Góźdź, M; Usheva, N; Birnbaum, J; Manios, Y; Moreno, L A

2014-08-01

Reliable assessments of health-related behaviours are necessary for accurate evaluation on the efficiency of public health interventions. The aim of the current study was to examine the reliability of a self-administered primary caregivers questionnaire (PCQ) used in the ToyBox-intervention. The questionnaire consisted of six sections addressing sociodemographic and perinatal factors, water and beverages consumption, physical activity, snacking and sedentary behaviours. Parents/caregivers from six countries (Belgium, Bulgaria, Germany, Greece, Poland and Spain) were asked to complete the questionnaire twice within a 2-week interval. A total of 93 questionnaires were collected. Test-retest reliability was assessed using intra-class correlation coefficient (ICC). Reliability of the six questionnaire sections was assessed. A stronger agreement was observed in the questions addressing sociodemographic and perinatal factors as opposed to questions addressing behaviours. Findings showed that 92% of the ToyBox PCQ had a moderate-to-excellent test-retest reliability (defined as ICC values from 0.41 to 1) and less than 8% poor test-retest reliability (ICC < 0.40). Out of the total ICC values, 67% showed good-to-excellent reliability (ICC from 0.61 to 1). We conclude that the PCQ is a reliable tool to assess sociodemographic characteristics, perinatal factors and lifestyle behaviours of pre-school children and their families participating in the ToyBox-intervention. © 2014 World Obesity.

Urban caregiver empowerment: Caregiver nativity, child asthma symptoms and emergency department use

PubMed Central

Coutinho, Maria Teresa; Kopel, Sheryl J.; Williams, Brittney; Dansereau, Katie; Koinis-Mitchell, Daphne

2016-01-01

Introduction This study examines the associations between caregiver empowerment, child asthma symptoms, and emergency department use in a sample of school aged urban children with asthma. We examined differences in caregiver empowerment, and in the associations among caregiver empowerment, proportion of days with child asthma symptoms, and emergency department use as a function of caregiver nativity. Methods Participants for this study were part of a larger longitudinal study and included Latino, African American and non-Latino White urban caregivers and their children with asthma (ages 7–9; N=130). Caregiver empowerment was assessed within family, asthma services, and community domains. Results Children whose caregivers reported greater empowerment within the family (knowledge and ability to care for their family) presented with fewer asthma symptoms. Children whose caregivers reported greater empowerment within asthma services (ability to collaborate with asthma providers and healthcare system), presented with more asthma symptoms. Foreign-born caregivers endorsed greater empowerment within the family, while US-born caregivers reported greater empowerment within asthma services. For foreign-born caregivers, higher levels of empowerment in the family were associated with fewer child asthma symptoms. For US-born caregivers, higher levels of empowerment in asthma services were associated with more child asthma symptoms. Discussion Results suggest that caregivers who feel more confident and better able to manage problems within their family may better manage their child's asthma more effectively navigate the asthma healthcare system and manage their child's asthma. PMID:27632543

Family functioning is associated with depressive symptoms in caregivers of acute stroke survivors.

PubMed

Epstein-Lubow, Gary P; Beevers, Christopher G; Bishop, Duane S; Miller, Ivan W

2009-06-01

To determine whether family functioning is uniquely associated with caregiver depressive symptoms in the immediate aftermath of stroke. Cross-sectional data from the baseline assessment of an intervention study for stroke survivors and their families. Neurology inpatient service of a large urban hospital. Stroke survivors (n=192), each with a primary caregiver. The mean age of stroke survivors was 66 years, and most, 57%, were men (n=110). The mean age of caregivers was 57 years, and 73% (n=140) of the caregivers were women. Eighty-five percent of caregivers were white. Not applicable. Measures were chosen to assess caregivers' depressive symptoms (Centers for Epidemiologic Studies Depression Scale), family functioning (Family Assessment Device), and additional factors such as health status (Medical Outcomes Study 36-Item Short-Form Health Survey) and stroke survivors' cognitive abilities (modified Mini-Mental State Examination) and functional impairments (FIM and Frenchay Activities Index). Depressive symptoms were mild to moderate in 14% and severe in 27% of caregivers. Family functioning was assessed as unhealthy in 34% of caregiver-patient dyads. In statistical regression models, caregiver depression was associated with patients' sex, caregivers' general health, and family functioning. Forty-one percent of caregivers experienced prominent depressive symptoms after their family member's stroke. Higher depression severity in caregivers was associated with caring for a man, and having worse health and poor family functioning. After stroke, the assessment of caregivers' health and family functioning may help determine which caregivers are most at risk for a depressive syndrome.

Caregivers - Multiple Languages

MedlinePlus

... window. Arabic (العربية) Expand Section For the Caregiver - English PDF For the Caregiver - العربية (Arabic) PDF American ... Cantonese dialect) (繁體中文) Expand Section For the Caregiver - English PDF For the Caregiver - 繁體中文 (Chinese, Traditional (Cantonese ...

Psychosocial factors and caregivers' distress: effects of familism and dysfunctional thoughts.

PubMed

Losada, Andres; Marquez-Gonzalez, Maria; Knight, Bob G; Yanguas, Javier; Sayegh, Philip; Romero-Moreno, Rosa

2010-03-01

Caring for a relative with dementia is linked with negative psychological and physical consequences for the caregiver. The number of studies analyzing the influence of specific values and thoughts on caregivers' distress remains sparse. The aim of this study is to analyze the influence of both familism dimensions and dysfunctional thoughts specific to caregiving on depression in a sample of 334 dementia caregivers. The results of this study suggest that familism can have positive influences on caregiving distress when the family is perceived as a source of support. However, the dimensions of familism pertaining to a strong adherence to values regarding both feelings of obligation to provide support as well as behaviors and attitudes that should be followed by different members of a family were linked with caregivers' distress through their influence on dysfunctional thoughts. This study provides support for the importance of conceptualizing familism as a multidimensional construct with both positive and negative effects on caregivers' emotional distress and suggests that familism affects emotional distress through dysfunctional thoughts rather than through burden appraisals. Clinical implications include attending to both the positive and negative effects of familism values and the potential value of targeting dysfunctional thoughts in cognitive-behavioral interventions with caregivers.

Effectiveness of therapeutic conversation intervention among caregivers of people with eating disorders: quasi-experimental design.

PubMed

Gisladottir, Margret; Treasure, Janet; Svavarsdottir, Erla Kolbrun

2017-03-01

The aim of this study was to evaluate the effectiveness of therapeutic conversation intervention in group and caregiver sessions on the supporting role of caregivers. Caregivers of people with eating disorders are known to suffer major difficulties and are in great need of support. Unhelpful parental support strategies can delay the recovery of an individual with an eating disorder. Skill training interventions can equip parents with skills, guidance and techniques by helping them to be a support person and making them one of the most important links in the treatment process. The therapeutic conversation intervention consisted of five group and caregiver sessions and three booster sessions. The Calgary Family Assessment and Calgary Family Intervention Models, the Illness Beliefs Model and the New Maudsley Method were used as theoretical frameworks. The content of the intervention consisted of work on difficult behaviours, feelings and helpful strategies. The participants (n = 58) included primary and secondary caregivers of 12- to 24-year-old patients with eating disorders. Eight caregivers dropped out of treatment. This study had a quasi-experimental design with one pre- and two post-test measures. Between 90-96% of caregivers rated the therapeutic conversation intervention as supportive. Furthermore, the study revealed significant differences in caregiver emotional and cognitive support, illness beliefs, disruptive behaviour and quality of life, negative aspects of care giving demands and caregiver and patient behavioural difficulties after the intervention and/or at follow-up. Therapeutic conversation intervention with caregivers in group and private sessions proved to be beneficial. This outcome provides information for healthcare professionals on how they can help primary caregivers in their supporting role, which can, in turn, improve services in healthcare centres and psychiatric hospitals. © 2016 John Wiley & Sons Ltd.

Gender Differences in Caregiving at End of Life: Implications for Hospice Teams

PubMed Central

Washington, Karla T.; Pike, Kenneth C.; Parker Oliver, Debra; Albright, David L.; Lewis, Alexandria M.

2015-01-01

Abstract Background: Researchers have identified important gender differences in the experience of caring for a family member or friend living with advanced disease; however, trends suggest that these differences may be diminishing over time in response to changing gender roles. In addition, while many studies have found caregiving experiences and outcomes to be poorer among female caregivers, noteworthy exceptions exist. Objective: The primary aim of this exploratory study was to determine how, if at all, current day caregiving at end of life varies by gender. Methods: We conducted a secondary analysis of data from a multisite randomized controlled trial of a family caregiving intervention performed between 2010 and 2014. We compared female and male hospice family caregivers on baseline variables using χ2 tests for association of categorical variables and t-tests for continuous variables. Our sample included 289 family caregivers of individuals receiving services from one of two hospice agencies located in the northwestern United States. Demographic data and other categorical variables of interest were provided via caregiver self-report using an instrument created specifically for this study. Reaction to caregiving and caregiving burden were measured using the Caregiver Reaction Assessment (CRA). Results: As it related to caregiving, females had significantly lower self-esteem and more negative impact on their schedule, health, and family support than males. No gender differences were detected with regard to the impact of caregiving on individuals' finances. Conclusions: Despite changing social expectations, pronounced gender differences persist in caregiving at the end of life. PMID:26484426

CAREGIVERS' KNOWLEDGE AND HOME MANAGEMENT OF FEVER IN CHILDREN.

PubMed

Koech, P J; Onyango, F E; Jowi, C

2014-05-01

Fever is one of the most common complaints presented to the Paediatric Emergency Unit (PEU). It is a sign that there is an underlying pathologic process, the most common being infection. Many childhood illnesses are accompanied by fever, many of which are treated at home prior to presentation to hospital. Most febrile episodes are benign. Caregivers are the primary contacts to children with fever. Adequate caregivers' knowledge and proper management of fever at home leads to better management of febrile illnesses and reduces complications. To determine the caregivers' knowledge and practices regarding fever in children. A cross-sectional study. Peadiatric Emergency Unit at Kenyatta National Hospital (KNH) SUBJECTS: Two hundred and fifty caregivers of children under 12 years presenting with fever in August to October 2011 to the PEU. Three quarters of the caregivers' defined fever correctly. Their knowledge on the normal body was at 47.6%. Infection was cited as the leading cause of fever (95.2%). Brain damage (77.6%) and dehydration (65.6%) were viewed as the most common complication. Fever was treated at home by 97.2% of caregivers, most of them used medication. Fever was defined correctly by 75.2% of the study participants and a majority of them used touch to detect fever. Fever was managed at home with medications. Public Health Education should be implemented in order to enlighten caregivers on fever and advocate for the use of a clinical thermometer to monitor fever at home.

The self-care practices of family caregivers of persons with poor prognosis cancer: differences by varying levels of caregiver well-being and preparedness.

PubMed

Dionne-Odom, J Nicholas; Demark-Wahnefried, Wendy; Taylor, Richard A; Rocque, Gabrielle B; Azuero, Andres; Acemgil, Aras; Martin, Michelle Y; Astin, Meka; Ejem, Deborah; Kvale, Elizabeth; Heaton, Karen; Pisu, Maria; Partridge, Edward E; Bakitas, Marie A

2017-08-01

Little is known about the impact of family caregiving for adults with poor prognosis cancer on caregivers' own individual self-care practices. We explored differences in caregivers' discrete self-care practices associated with varying levels of caregiver well-being, preparedness, and decision-making self-efficacy. Cross-sectional survey within eight community-based southeastern U.S. cancer centers was conducted. Family caregivers of Medicare beneficiaries ≥65 years with pancreatic, lung, brain, ovarian, head and neck, hematologic, or stage IV cancer completed measures of individual self-care practices (health responsibility, physical activity, nutrition, spiritual growth, interpersonal relations, stress management, and sleep), well-being (anxiety, depression, and health-related quality of life [HRQoL]), preparedness, and decision-making self-efficacy. Caregivers (n = 294) averaged 66 years, were mostly female (72.8%), white (91.2%), Protestant (76.2%), retired (54.4%), and patients' spouse/partner (60.2%). Approximately, half were rural-dwellers (46.9%) with incomes <$50,000 (53.8%). Most provided support 6-7 days/week (71%) for >1 year (68%). Nearly a quarter (23%) reported high depression and 34% reported borderline or high anxiety. Low engagement in all self-care practices was associated with worse caregiver anxiety, depression, and mental HRQoL (all p values < .05). Caregivers with lower health responsibility, spiritual growth, interpersonal relation, and stress management scores had lower preparedness and decision-making self-efficacy. A significant proportion of caregivers simultaneously report low engagement in all forms of self-care practices, high depression and anxiety, and low HRQoL mental health scores. Caregiver well-being, preparedness, and decision-making self-efficacy might be optimized through interventions targeted at enhancing health responsibility, stress management, interpersonal relationships, and spiritual growth self-care practices.

Challenges, needs, and experiences of recently hospitalized cardiac patients and their informal caregivers.

PubMed

Blair, Judith; Volpe, Marie; Aggarwal, Brooke

2014-01-01

Cardiovascular disease (CVD) is the leading cause of death in the United States. Unpaid family caregivers of patients who experienced a cardiac event may occupy a key position in disseminating continuous health messages to these patients, yet more information is needed to guide the development of educational and behavioral interventions targeting caregivers. The purpose of this qualitative study was to assess the challenges, needs, and personal experiences of cardiac patients and their informal caregivers to explore the types of programs and services that would be most beneficial in promoting adherence to national CVD guidelines among cardiac patients and their caregivers. Patients who had been admitted to the cardiovascular service line of a large urban academic medical center and their informal caregivers (N = 38, 63% women, 74% white) participated in semistructured interviews and focus groups. Participants were asked to speak about 4 major categories of their personal experiences: support, challenges, coping, and program delivery, to determine their needs, the kind of educational interventions that would be most helpful to them, and how they would prefer this information/education to be delivered. Both patients and caregivers ranked diet as the most pressing challenge (91% and 78%, respectively). The Internet, television, and social media were the preferred methods of delivery of such programs. Challenges most commonly cited by caregivers and patients included issues related to taking/administering prescribed medications and medication side effects, and mental stress. Caregivers expressed that not knowing what to expect after the patient's discharge from the hospital was a major stressor. These findings may inform the development of educational interventions targeted to cardiac caregivers so that they may be more effective in assisting the patients in their care to adhere to national CVD prevention guidelines.

Family Caregiver's Perception of Alzheimer's disease and caregiving in Chinese culture.

PubMed

Dai, Baozhen; Mao, Zongfu; Wu, Bei; Mei, Y John; Levkoff, Sue; Wang, Huali

2015-01-01

This study examined the perception of Alzheimer's disease (AD) and caregiving among family caregivers of individuals with mild cognitive impairment (MCI) and AD in China. In-depth semistructured interviews were conducted with 46 family caregivers of individuals with cognitive impairment in 2009 in Wuhan and Beijing, China. Participants included 38 spouses, 7 adult children, and 1 sibling, aged between 41 and 85 years old. The findings showed that all family caregivers thought the Chinese terminology of AD laonian chidai, brought discrimination to individuals with cognitive impairment. Caregivers of individuals with AD experienced burden and desired an increase of formal services. Traditional beliefs of respecting elders and caring for extended family members were held among family caregivers of individuals with cognitive impairment, and there was nearly no difference found between caregivers of AD and those of MCI. It implied that traditional culture provided positive influences on caring for elders with cognitive impairment. An alternative term for MCI may contribute to further reducing the discrimination brought by the old Chinese terminology of AD laonian chidai. Development of formal services for elders with cognitive impairment may contribute to reducing caregivers' worries about future caregiving.

Health Trajectories of Family Caregivers: Associations With Care Transitions and Adult Day Service Use

PubMed Central

Liu, Yin; Kim, Kyungmin; Zarit, Steven H.

2017-01-01

Objective The study examines family caregivers’ health changes over 1 year on four health dimensions and explores the association of differential health trajectories with adult day service (ADS) use and caregiving transitions. Method The participants were 153 primary caregivers of individuals with dementia (IWDs) who provided information on care situations and their own health at baseline, 6-month, and 12-month interviews. Results Caregivers showed increasing functional limitations and decreasing bodily pain over time, whereas role limitation and general health perception remained stable. Furthermore, caregivers’ trajectories of functional limitation were associated with their extent of ADS use at baseline and their relatives’ placement. Discussion Health is multidimensional; all dimensions of caregiver health do not change in a uniform manner. The findings underscore the importance of the association of caregiving transitions and caregiver health and the potential health benefits of ADS use for family caregivers. PMID:25348275

[Associations between workplace bullying, harassment, and stress reactions of professional caregivers at welfare facilities for the elderly in Japan].

PubMed

Taniguchi, Toshiyo; Takaki, Jiro; Harano, Kaori; Hirokawa, Kumi; Takahashi, Kazumi; Fukuoka, Etsuko

2012-01-01

The purpose of this study was to describe workplace bullying experienced by professional caregivers at welfare facilities for the elderly in Japan and to confirm its effects on stress reactions. A cross-sectional survey was carried out using self-administered questionnaires in 2009 of all the employees working in rural area of facilities for long-term care. Among the 1,233 respondents who filled out all questionnaires concerning stress reactions the Japanese version of the Negative Acts Questionnaire (NAQ) (response rate: 63.9%), we analyzed 897 professional caregivers. We measured stress reactions by using the stress reaction scores of the Brief Job Stress Questionnaire (29 items) and workplace bullying and harassment by using NAQ. We used the unpaired t-test and analysis of covariance (ANCOVA) to compare crude and adjusted average stress reactions with groups classified on the basis of each subscale of the NAQ or all of them. About 40% of both men and women suffered from "malicious gossip" and over 60% of both men and women experienced "someone withholding necessary information so that their work gets complicated". Among women, scores of the lack of vigor and fatigue were significantly higher in caregivers targeted by person-related bullying than those not targeted (p<0.05). Scores of depression were significantly higher in caregivers targeted by work-related bullying than those not targeted (p<0.05). Scores of anxiety were significantly higher among caregivers targeted by sexual harassment than those not targeted (p<0.05). Among men, scores of the lack of vigor were significantly lower in caregivers targeted by work-related bullying than those not targeted (p<0.05). Among women, workplace bullying or harassment could may aggravate effects on psychological stress responses. While among men, work-related bullying was positively associated with vigor.

Urban caregiver empowerment: Caregiver nativity, child-asthma symptoms, and emergency-department use.

PubMed

Coutinho, Maria Teresa; Kopel, Sheryl J; Williams, Brittney; Dansereau, Katie; Koinis-Mitchell, Daphne

2016-09-01

In this study, we examined the associations between caregiver empowerment, child-asthma symptoms, and emergency-department (ED) use in a sample of school-age urban children with asthma. We examined differences in caregiver empowerment, and in the associations among caregiver empowerment, proportion of days with child-asthma symptoms, and ED use as a function of caregiver nativity. Participants for this study were part of a larger longitudinal study and included Latino, African American and non-Latino White urban caregivers and their children with asthma (ages 7-9; N = 130). Caregiver empowerment was assessed within family, asthma services, and community domains. Children whose caregivers reported greater empowerment within the family (i.e., possessing sufficient knowledge and ability to care for their families) presented with fewer asthma symptoms. Children whose caregivers reported greater empowerment within asthma services (i.e., the ability to collaborate with asthma providers and the health-care system), presented with more asthma symptoms. Foreign-born caregivers endorsed greater empowerment within the family, whereas U.S.-born caregivers reported greater empowerment within asthma services. For foreign-born caregivers, higher levels of empowerment in the family were associated with fewer child-asthma symptoms. For U.S.-born caregivers, higher levels of empowerment in asthma services were associated with more child-asthma symptoms. Results suggest that caregivers who feel more confident and better able to manage problems within their families may better manage their children's asthma symptoms. Foreign-born caregivers may benefit from increased support to more effectively navigate the asthma health-care system and manage their children's asthma. (PsycINFO Database Record (c) 2016 APA, all rights reserved).

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

How Caregivers and Workers Fared in Cash and Counseling

PubMed Central

Foster, Leslie; Dale, Stacy B; Brown, Randall

2007-01-01

Objectives To assess the effects of Cash and Counseling on Medicaid beneficiaries' primary informal caregivers and describe the experiences of their directly hired workers. Study Setting Beneficiaries in Arkansas, Florida, and New Jersey voluntarily enrolled in the demonstration and were randomly assigned to direct their own Medicaid supportive services as Cash and Counseling consumers (the treatment group) or to rely on Medicaid services as usual (the control group). Beneficiaries identified their primary informal caregiver during a baseline interview and their primary paid worker during a 9-month follow-up interview. Data Sources Data were collected through telephone interviews with caregivers and workers. These interviews were conducted about 10 months after beneficiaries' random assignment, between February 2000 and May 2003, depending on the state. Data Analysis Methods We estimated program effects with regression and logit models and compared the mean characteristics of directly hired workers and agency workers, by state. Principal Findings Compared with caregivers in the control group, those in the treatment group had modestly to substantially better outcomes for measures of satisfaction with care, worry, and physical and financial strain. For hours of care and emotional strain, outcomes in the treatment group were similar to or somewhat better than those in the control group. Directly hired workers reported greater satisfaction with wages, similar satisfaction with working conditions, and similar rates of injuries as agency workers. Workers who were related to the beneficiary reported more emotional strain than agency workers. Conclusions Cash and Counseling can lessen some of the burden associated with caring for a child or adult with disabilities. The experiences of hired workers suggest consumer direction is a sustainable option, but support networks for workers might be a welcome program improvement. PMID:17244295

Caring for Caregivers and Patients: Research and Clinical Priorities for Informal Cancer Caregiving

PubMed Central

Kent, Erin E.; Rowland, Julia H.; Northouse, Laurel; Litzelman, Kristin; Chou, Wen-Ying Sylvia; Shelburne, Nonniekaye; Timura, Catherine; O’Mara, Ann; Huss, Karen

2017-01-01

Informal/family caregivers are a fundamental source of care for cancer patients in the United States, yet the population of caregivers, their tasks, psychosocial needs and health outcomes are not well understood. Changes in the nature of cancer care and its delivery, along with the growing population of survivors and by consequence, their caregivers, warrant increased attention to the roles and demands of caregiving. This paper reviews current evidence presented in a two-day meeting to examine the state of the science of informal cancer caregiving convened by the National Cancer Institute and National Institute for Nursing Research. The meeting sought to define who is an informal cancer caregiver, summarize the state of the science in informal cancer caregiving, and describe both the kinds of interventions developed to address caregiving challenges and the various outcomes used to evaluate their impact. This paper offers recommendations for moving science forward in four areas: (1) improve estimation of the prevalence and burden of informal cancer caregiving; (2) advance development of interventions designed to improve outcomes in cancer patients, caregivers, and patient-caregiver dyads; (3) generate and test strategies to integrate caregivers into formal healthcare settings; and (4) promote use of technology to support informal cancer caregivers. PMID:26991807

Evaluation of a Telephone-Delivered, Community-Based Collaborative Care Management Program for Caregivers of Older Adults with Dementia.

PubMed

Mavandadi, Shahrzad; Wray, Laura O; DiFilippo, Suzanne; Streim, Joel; Oslin, David

2017-09-01

To evaluate whether a community-based, telephone-delivered, brief patient/caregiver-centered collaborative dementia care management intervention is associated with improved caregiver and care recipient (CR) outcomes. Longitudinal program evaluation of a clinical intervention; assessments at baseline and 3- and 6-month follow-up. General community. Caregivers (N = 440) of older, community-dwelling, low-income CRs prescribed a psychotropic medication by a primary care provider who met criteria for dementia and were enrolled in the SUpporting Seniors Receiving Treatment And INtervention (SUSTAIN) program for older adults. Dementia care management versus clinical evaluation only. Perceived caregiving burden and caregiver general health (primary outcomes); CR neuropsychiatric symptoms and caregiver distress in response to CRs' challenging dementia-related behaviors (secondary outcomes). Caregivers were, on average, 64.0 (SD: 11.8) years old and 62.6% provided care for the CR for 20 or more hours per week. The majority of the sample was female (73.2%), non-Hispanic White (90.2%), and spousal caregivers (72.5%). Adjusted longitudinal models of baseline and 3- and 6-month data suggest that compared with caregivers receiving clinical evaluation only, caregivers receiving care management reported greater reductions in burden over time. Subgroup analyses also showed statistically significant reductions in caregiver-reported frequency of CR dementia-related behaviors and caregiver distress in response to those symptoms at 3-month follow-up. A community-based, telephone-delivered care management program for caregivers of individuals with dementia is associated with favorable caregiver and CR-related outcomes. Findings support replication and further research in the impact of tailored, collaborative dementia care management programs that address barriers to access and engagement. Published by Elsevier Inc.

Effect of VAPE about mother and infant health on knowledge among primary caregivers of patients with postpartum psychiatric illness:- A pre-experimental study.

PubMed

Gandhi, Sailaxmi; Thomas, Linsu; Desai, Geetha

2017-08-01

Post partum psychiatric illnesses are quiet common nowadays, which can interfere with postnatal care of both mother and infant. The present study was a one group pre-test - post-test design, adopted with an aim to enhance the knowledge on mother infant health among primary caregivers of mothers with postpartum psychiatric illnesses conducted in the mother-baby unit, NIMHANS, Bengaluru. Twenty five subjects who met the inclusion criteria were recruited through convenience sampling. After the pilot study, data was collected with a researcher developed tool. The Video Assisted Psycho-Education [VAPE] consisted of three sessions lasting for thirty minutes, taken over three consecutive days following the pre-test. Post-test was done immediately after the last session. Effectiveness of the intervention was established by McNemar test, Paired t-test and Wilcoxon Sign Ranks test. Analysis revealed statistically significant (p<0.001) increase in the post-test mean knowledge scores following the VAPE sessions. There was no statistically significant association between the pre-intervention knowledge score and the socio-demographic variables of the study subjects. The study findings revealed that the VAPE programme was effective in increasing the knowledge of the primary caregivers on mother infant health. Copyright © 2017 Elsevier B.V. All rights reserved.

Fathers' Lived Experiences of Getting to Know Their Baby While Acting as Primary Caregivers Immediately Following Birth

PubMed Central

Erlandsson, Kerstin; Christensson, Kyllike; Fagerberg, Ingegerd

2008-01-01

The aim of this study was to describe the meaning of the father's lived experiences when taking care of his infant as the primary caregiver during the first hours after birth, when the infant was apart from the mother due to the mother's postoperative care. Fifteen fathers were interviewed between 8 days and 6 weeks after the birth. The results describe a movement toward father-child togetherness characterized by an immediate and gradual change within the father as he undertakes increasing responsibility while getting to know his child. The results can be discussed in antenatal classes in order to integrate the father's important role in the care of his infant, especially in a situation where the mother-infant dyad has been interrupted. PMID:19252686

Depression in individuals with chronic obstructive pulmonary disease and their informal caregivers.

PubMed

Badr, Hoda; Federman, Alex D; Wolf, Michael; Revenson, Tracey A; Wisnivesky, Juan P

2017-09-01

Individuals with chronic obstructive pulmonary disease (COPD) and their caregivers are at high risk for developing depression. Depression can adversely affect the quality of life of patients and caregivers; however, studies in COPD have largely examined predictors of patient and caregiver depression in isolation. This dyadic study examined individual-level predictors of patient and caregiver depression in COPD (i.e. actor effects) as well as how dyad members effect each other's depression (i.e. partner effects). Survey data were collected from 89 patient-caregiver dyads that were enrolled in a multi-site cohort study. Participants were predominantly women (61% of patients and 76% of caregivers) and racial/ethnic minorities (65% of patients and 63% of caregivers). Based on PHQ9 cutoffs, 30% of patients and 20% of caregivers had mild depression; 30% of patients and 8% of caregivers had moderate to severe depression. Multilevel models with the dyad as the unit of analysis showed that less frequent patient self-management, higher levels of caregiver burden, and being in poorer health were associated with higher levels of depression for both dyad members. Higher levels of depression in a partner were also associated with higher levels of depression for women, regardless of whether women were patients or caregivers. Findings suggest that similar factors predict patient and caregiver depression in COPD and that women are at increased risk for developing depression when their partners are depressed. Dyadic psychosocial interventions that target patients and their caregivers may thus be beneficial in terms of addressing depression in this this vulnerable population.

Caregiving and mutuality among long-term colorectal cancer survivors with ostomies: qualitative study.

PubMed

Altschuler, Andrea; Liljestrand, Petra; Grant, Marcia; Hornbrook, Mark C; Krouse, Robert S; McMullen, Carmit K

2018-02-01

The cancer caregiving literature focuses on the early phases of survivorship, but caregiving can continue for decades when cancer creates disability. Survivors with an ostomy following colorectal cancer (CRC) have caregiving needs that may last decades. Mutuality has been identified as a relationship component that can affect caregiving. This paper discusses how mutuality may affect long-term ostomy caregiving. We conducted semi-structured, in-depth interviews with 31 long-term CRC survivors with ostomies and their primary informal caregivers. Interviewees were members of an integrated health care delivery system in the USA. We used inductive theme analysis techniques to analyze the interviews. Most survivors were 71 years of age or older (67%), female (55%), and with some college education (54%). Two thirds lived with and received care from spouses. Caregiving ranged from minimal support to intimate assistance with daily ostomy care. While some survivors received caregiving far beyond what was needed, others did not receive adequate caregiving for their health care needs. Low mutuality created challenges for ostomy caregiving. Mutuality impacts the quality of caregiving, and this quality may change over time, depending on various factors. Emotional feedback and amplification is the proposed mechanism by which mutuality may shift over time. Survivorship care should include assessment and support of mutuality as a resource to enhance health outcomes and quality of life for survivors with long-term caregiving needs and their caregivers. Appropriate questionnaires can be identified or developed to assess mutuality over the survivorship trajectory.

Depressive symptoms and self-harm among youngsters referred to child welfare: The role of trust in caregiver support and communication.

PubMed

Santens, Tara; Claes, Laurence; Diamond, Guy S; Bosmans, Guy

2018-03-01

Depressive symptoms and self-harm, i.e. non-suicidal self-injury and suicidal behaviors, are highly prevalent in youngsters involved in Child Welfare System (CWS) services. Little research investigates, however, why these CWS youngsters are at risk. We explored whether trust in caregiver support and communication about experiences with primary caregivers, are associated with CWS youngsters' depressive symptoms and/or self-harm. An anonymous online survey of 271 CWS youngsters (10-21 years of age, 57.2% female) was used to assess trust and communication, and depressive symptoms/self-harm. Results showed significant negative associations between self-reported trust in maternal and paternal support, and depressive symptoms/self-harm. Communication about experiences with one's biological mother mediated the relationship between trust in maternal support and depressive symptoms/self-harm. Furthermore, the presence of an additional trustworthy caregiver buffered the impact of low trust in maternal or paternal support on depressive symptoms/self-harm. Implications for interventions targeting CWS youngsters' depressive symptoms and self-harm are discussed. Copyright © 2018 Elsevier Ltd. All rights reserved.

Psychometrics of the Zarit Burden Interview in Caregivers of Patients With Heart Failure.

PubMed

Al-Rawashdeh, Sami Y; Lennie, Terry A; Chung, Misook L

Identification of family caregivers who are burdened by the caregiving experience is vital to prevention of poor outcomes associated with caregiving. The Zarit Burden Interview (ZBI), a well-known measure of caregiving burden in caregivers of patients with dementia, has been used without being validated in caregivers of patients with heart failure (HF). The purpose of this study is to examine the reliability and validity of the ZBI in caregivers of patients with HF. A total of 124 primary caregivers of patients with HF completed survey questionnaires. Caregiving burden was measured by the ZBI. Reliability was examined using Cronbach's α and item-total/item-item correlations. Convergent validity was examined using correlations with the Oberst Caregiving Burden Scale. Construct validity was demonstrated by exploratory factor analysis and known hypothesis testing (ie, the hypothesis of the association between caregiving burden and depressive symptoms). Cronbach's α for the ZBI was .921. The ZBI had good item-total (r = 0.395-0.764) and item-item (mean r = 0.365) correlations. Significant correlations between the ZBI and the Oberst Caregiving Burden Scale (r = 0.466 for the caregiving time subscale and 0.583 for the caregiving task difficulty subscale; P < .001 for both) supported convergent validity. Four factors were identified (ie, consequences of caregiving, patient's dependence, exhaustion with caregiving and uncertainty, and guilt and fear for the patient's future) using factor analysis, which are consistent with previous studies. Caregivers with high burden scores had significantly higher depressive symptoms than did caregivers with lower burden scores (7.0 ± 6.8 vs 3.1 ± 4.3; P < .01). The findings provide evidence that the ZBI is a reliable and valid measure for assessing burden in caregivers of patients with HF.

[Biopsychosocial approach to caregiving burden: Why should we care about caregivers' health?

PubMed

Leurs, Antoine; Trojak, Benoit; Ponavoy, Eddy; Bonin, Bernard; Chauvet-Gelinier, Jean-Christophe

2018-06-11

There are 11 million family caregivers in France and some estimates indicate that there will be 17 million in 2020. Caregiving is a source of chronic stress that requires adaptation and coping strategies. Caregiving may benefit the health of a caregiver with a positive coping style and altruistic goals. However, the caregiver's burden is frequently associated with negative effects in terms of biopsychosocial imbalance and medical conditions, with frequent anxiety and depression. The management of the caregiving burden starts with the recognition of health professionals - caregivers may benefit from consultation-liaison psychiatry and multidisciplinary medico-social strategies, in addition to constant support from their GPs. Copyright © 2018 Elsevier Masson SAS. All rights reserved.

Leveraging the Experiences of Informal Caregivers to Create Future Healthcare Workforce Options

PubMed Central

Phillips, Sara S.; Ragas, Daiva M.; Hajjar, Nadia; Tom, Laura S.; Dong, XinQi; Simon, Melissa A.

2015-01-01

Our primary objective was to gather pilot data from informal caregivers regarding the potential for a training program to assist current or past caregivers in re-entering the job market, offering a pathway to economic resilience. In an effort that could foster a sustainable and competent caregiving market to help meet the needs of an aging America, we explored whether training informal caregivers might help them transition into a paid caregiving or other health-service role. We interviewed 55 caregivers of a chronically or terminally ill family member or friend in a suburban collar county near Chicago. The interview guide addressed household economic impact of illness, emotional burden, and training program interest. We found that more than half of caregivers (56%) were interested in training to work outside the home, caring for patients in other households. Notably, 84% indicated a desire to learn more about health care and 68% reported a desire to explore job possibilities in health care. Most of the caregivers (82%) were experienced in working with an older adult who was at least 50 years old. Informal caregivers’ interest in a training program to bolster their qualifications for a role within the healthcare workforce, including the option of a formal caregiver position, supports the demand for such a program. Considering the need for healthcare workers to serve the growing elderly demographic and the desire of informal caregivers to find gainful employment, this informal caregiver demographic could provide the impetus to invest in informal caregiver training in the future. PMID:26782869

Caregiver Soothing Behaviors After Immunization and Infant Attachment: A Longitudinal Analysis.

PubMed

Hillgrove-Stuart, Jessica; Pillai Riddell, Rebecca; Flora, David B; Greenberg, Saul; Garfield, Hartley

2015-01-01

There were 2 primary objectives to the current study: (1) to relate caregiver behavior trajectories across immunization appointments over the first year of life to subsequent infant attachment and (2) to relate caregiver behavior trajectories within each immunization appointment over the first year of life to subsequent infant attachment. A subsample of 130 caregivers and their infants were recruited from a sample of 760 caregivers who were part of an ongoing longitudinal cohort that videotaped infants' 2-, 4-, 6-, and 12-month immunization appointments. This subsample of caregivers and their infants (n = 130) were invited to participate in an assessment of attachment when infants were between 12 and 18 months of age at the local children's hospital. Caregiver proximal soothing behaviors were the only caregiver behaviors postimmunization that were related to subsequent infant attachment. Higher frequencies of caregiver proximal soothing at 12 months were related to infants' organized attachment, whereas steeper decreases in proximal soothing across the first year were associated with disorganized infant attachment. In addition, when caregivers engaged in proximal soothing for longer after their 12 month olds' immunizations, these infants were more likely to be secure or organized in their attachment. These results provide empirical support for the ecological validity of studying infant attachment in a pediatric pain context. The pediatric "well-baby" visit may provide a potential opportunity to feasibly integrate brief infant mental health screening and intervention.

Evaluative and Experienced Well-being of Caregivers of Parents and Caregivers of Children.

PubMed

Hammersmith, Anna M; Lin, I-Fen

2016-06-02

Informal caregiving is an important source of support for aging parents and children. Yet the timing and nature of caring for parents versus children may result in different levels of well-being. Despite extensive studies on the well-being of caregivers of parents and of children, it remains elusive as to how evaluative and experienced well-being vary by caregiver type. Using data from the 2012 and 2013 rounds of the American Time Use Survey, we examined how 216 caregivers of parents and 1,989 caregivers of children reported their evaluative well-being (life satisfaction) and experienced well-being (happiness, meaning, pain, sadness, stress, and tiredness). Caregivers of parents reported lower evaluative and experienced well-being than caregivers of children. The association between caregiver type and life satisfaction dissipated, whereas the associations of caregiver type with happiness, meaning, and sadness persisted after accounting for caregivers' demographic characteristics, socioeconomic resources, and time intensity. Experienced well-being appears to be more sensitive than evaluative well-being in detecting differences in well-being between these two types of caregivers. Given that the caregivers of parents do not receive the same level of institutional support as caregivers of children, social policies should aim to provide caregivers of parents with additional support. © The Author 2016. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Does Expressive Writing Reduce Stress and Improve Health for Family Caregivers of Older Adults?

ERIC Educational Resources Information Center

Mackenzie, Corey S.; Wiprzycka, Ursula J.; Hasher, Lynn; Goldstein, David

2007-01-01

Purpose: We examined whether written emotional disclosure reduces stress and improves health outcomes for family caregivers of physically frail and cognitively impaired older adults, as it has been shown to do for certain student and clinical populations. Design and Methods: Primary caregivers of older adults attending a day program were randomly…

Caregiver mental health and potentially harmful caregiving behavior: the central role of caregiver anger.

PubMed

Macneil, Gordon; Kosberg, Jordan I; Durkin, Daniel W; Dooley, W Keith; Decoster, Jamie; Williamson, Gail M

2010-02-01

Caregivers feeling stress and experiencing mental health problems can be at risk for engaging in abusive acts against elderly care recipients. Potentially harmful behavior (PHB) was used as a measure of caregivers' engagement in, or fear of engagement in, behavior that places dependent care recipients at risk of physical and/or psychological maltreatment and may be seen as an antecedent of, or a proxy for, identifiably abusive behavior. The study examined the ability of anger to mediate and moderate the relations of depression, resentment, and anxiety with PBH. Data are from the first wave of the second Family Relationships in Late Life study of caregivers of community-dwelling elderly care recipients with whom they coreside. Caregivers (N = 417) completed face-to-face interviews. Anger was found to mediate the relation between anxiety and PHB. Anger both mediates and moderates the relations of both depression and resentment with PHB in a dynamic way such that the mediating effect of anger increases substantially with increased scores on both depression and resentment. Identifying anger levels among caregivers who report symptoms of depression is warranted. Reducing depression in caregivers who report high levels of anger may result in reductions of PHB. Screening for resentment is warranted, as the relation between resentment and anger is similar to that between depression and anger.

Extended families and perceived caregiver support to AIDS orphans in Rakai district of Uganda

PubMed Central

Karimli, Leyla; Ssewamala, Fred M.; Ismayilova, Leyla

2012-01-01

Purpose To understand the role of extended family in responding to problems of AID-orphaned children and adolescents in Uganda, the study examines who are the primary caregivers of AIDS-orphaned children and adolescents, what are the types of caregiving provided to orphans and whether the quality of caregiving varies by the primary caregiver’s gender and type. Methods The study uses bivariate analyses and mixed effects models utilizing baseline data from a cluster randomized experimental design including 283 orphaned adolescents in Uganda. Results The analysis revealed a generally dominating role of female caregivers for both single and double orphans. In the absence of biological parents – as in the case of double orphans – grandparents’ role as caregivers prevail. On average, the study participants indicated receiving the high level of perceived caregiver support: the average score of 3.56 out of 4 (95% CI=3.5, 3.65). Results of mixed effect models (adjusting for school effects) revealed significant differences in perceived caregiver support by caregiver’s gender. Compared to their male counterparts, female participants with whom the child/adolescent lives (B=0.22, 95% CI=0.11, 0.34) and women who are currently taking care of a child/adolescent (B=0.15, 95% CI=0.05, 0.26) provide greater caregiver support as perceived and reported by a child/adolescent. Similarly, female financiers – compared to male source of financial support - provide greater caregiver support as perceived and reported by a child/adolescent (B=0.16, 95% CI=0.04, 0.3). Conclusions Our findings demonstrate that extended families are still holding up as an important source of care and support for AIDS orphaned children and adolescents in Uganda. The findings support the argument about importance of matrilineal and grandparental care for AIDS orphans. PMID:23188930

Caring for caregivers and patients: Research and clinical priorities for informal cancer caregiving.

PubMed

Kent, Erin E; Rowland, Julia H; Northouse, Laurel; Litzelman, Kristin; Chou, Wen-Ying Sylvia; Shelburne, Nonniekaye; Timura, Catherine; O'Mara, Ann; Huss, Karen

2016-07-01

Informal/family caregivers are a fundamental source of care for cancer patients in the United States, yet the population of caregivers and their tasks, psychosocial needs, and health outcomes are not well understood. Changes in the nature of cancer care and its delivery, along with the growing population of survivors and their caregivers, warrant increased attention to the roles and demands of caregiving. This article reviews current evidence presented at a 2-day meeting examining the state of the science of informal cancer caregiving that was convened by the National Cancer Institute and the National Institute of Nursing Research. The meeting sought to define who is an informal cancer caregiver, summarize the state of the science in informal cancer caregiving, and describe both the kinds of interventions developed to address caregiving challenges and the various outcomes used to evaluate their impact. This article offers recommendations for moving science forward in 4 areas: 1) improving the estimation of the prevalence and burden of informal cancer caregiving; 2) advancing the development of interventions designed to improve outcomes for cancer patients, caregivers, and patient-caregiver dyads; 3) generating and testing strategies for integrating caregivers into formal health care settings; and 4) promoting the use of technology to support informal cancer caregivers. Cancer 2016;122:1987-95. © 2016 American Cancer Society. © 2016 American Cancer Society.

A Research Study on Secure Attachment Using the Primary Caregiving Approach

ERIC Educational Resources Information Center

Ebbeck, Marjory; Phoon, Dora Mei Yong; Tan-Chong, Elizabeth Chai Kim; Tan, Marilyn Ai Bee; Goh, Mandy Lian Mui

2015-01-01

A child's positive sense of well-being is central to their overall growth and development. With an increasing number of mothers in the workforce, many infants and toddlers spend much time in child care services. Hence it is crucial that caregivers provide a secure base for the child to develop secure attachment with educarers. Given multiple…

Preloss grief in family caregivers during end-of-life cancer care: A nationwide population-based cohort study.

PubMed

Nielsen, Mette Kjaergaard; Neergaard, Mette Asbjoern; Jensen, Anders Bonde; Vedsted, Peter; Bro, Flemming; Guldin, Mai-Britt

2017-12-01

Severe grief symptoms in family caregivers during end-of-life cancer trajectories are associated with complicated grief and depression after the loss. Nevertheless, severe grief symptoms during end-of-life caregiving in caregivers to cancer patients have been scarcely studied. We aimed to explore associations between severe preloss grief symptoms in caregivers and modifiable factors such as depressive symptoms, caregiver burden, preparedness for death, and end-of-life communication. We conducted a population-based prospective study of caregivers to 9512 patients registered with drug reimbursement due to terminal illness, and 3635 caregivers responded. Of these, 2865 caregivers to cancer patients completed a preloss grief scale (Prolonged Grief 13, preloss version). Associations with factors measured during end-of-life caregiving were analyzed using logistic regression. Severe preloss grief symptoms were reported by 432 caregivers (15.2%). These symptoms were associated with depressive symptoms (adjusted odds ratio [OR] = 12.4; 95% CI, 9.5-16.3), high caregiver burden (adjusted OR = 8.3; 95% CI, 6.3-11.1), low preparedness for death (adjusted OR = 3.3; 95% CI, 2.5-4.4), low level of communication about dying (adjusted OR = 3.2; 95% CI, 2.2-4.4), and "too much" prognostic information (adjusted OR = 2.8; 95%, 1.7-4.6). Severe preloss grief symptoms were significantly associated with distress, low preparedness, and little communication during caregiving. Thus, severe preloss grief symptoms may be a key indicator for complications in caregivers of cancer patients in an end-of-life trajectory. Targeted interventions are needed to support family caregivers with severe preloss grief symptoms. Development of preloss grief assessment tools and interventions should be a priority target in future research. Copyright © 2017 John Wiley & Sons, Ltd.

Family caregivers' attributions about care-recipient behaviour: does caregiver relationship satisfaction mediate the attribution-distress relationship?

PubMed

Hui, Siu-Kuen Azor; Elliott, Timothy R; Martin, Roy; Uswatte, Gitendra

2011-09-01

The relations of caregiver attributions about care-recipient's problem behaviour to caregiving relationship satisfaction and caregiver distress were examined. This is a cross sectional study. Seventy-five family caregivers of individuals diagnosed with various disabling health conditions were recruited and interviewed. Caregiver attributions (internality, intentionality, responsibility, and controllability), caregiving relationship satisfaction, and caregiver distress variables were measured. Structural equation techniques tested an a priori model of the latent constructs of caregiver attributions and caregiver relationship satisfaction to caregiver distress. Maladaptive caregiver attributions (i.e., more trait, higher intentionality, higher responsibility, and higher controllability) about care-recipients' problem behaviours predicted lower caregiving relationship satisfaction, which in turn was predictive of higher caregiver distress. Unexpectedly, caregiver attributions were not directly related to caregiver distress. However, attributions had an indirect effect on distress through relationship satisfaction. Younger caregivers experienced higher caregiver distress. Caregivers' explanations about care-recipient's problem behaviour are indicative of their satisfaction in the relationship with the care recipient, and poor caregiving relationship satisfaction is predictive of caregiver distress. Caregiver attributions and relationship quality may be considered in interventions with family caregivers. ©2010 The British Psychological Society.

Coping Strategy and Caregiver Burden Among Caregivers of Patients With Dementia.

PubMed

Huang, Mei-Feng; Huang, Wen-Hui; Su, Yi-Ching; Hou, Shu-Ying; Chen, Hui-Mei; Yeh, Yi-Chun; Chen, Cheng-Sheng

2015-11-01

This study aims to examine whether coping strategies employed by caregivers are related to distinct symptoms of patients with dementia and to investigate the associations between burden and coping among caregivers of patients with dementia. A cross-sectional study design was used. A total of 57 caregivers of patients with dementia were enrolled. Coping strategies were assessed using the Ways of Coping Checklist, and burden was assessed using the Chinese version of Caregiver Burden Inventory. Correlations between coping and patients' behavior or memory problems were examined. Severities of behavior and memory problems were adjusted to examine the correlations between caregiver burden and coping strategies. The patients' disruptive behavior problems were associated with avoidance, and depression problems were associated with avoidance and wishful thinking. After adjusting for severity of behavior problems, coping strategies using avoidance were positively correlated with caregiver burden. Emotion-focused coping strategies are a marker of caregiver burden. © The Author(s) 2013.

Leisure Activity and Caregiver Involvement in Middle-Aged and Older Adults with Down Syndrome

ERIC Educational Resources Information Center

Mihaila, Iulia; Hartley, Sigan L.; Handen, Benjamin L.; Bulova, Peter D.; Tumuluru, Rameshwari V.; Devenny, Darlynne A.; Johnson, Sterling C.; Lao, Patrick J.; Christian, Bradley, T.

2017-01-01

The present study examined leisure activity and its association with caregiver involvement (i.e., residence and time spent with primary caregiver) in 62 middle-aged and older adults with Down syndrome (aged 30-53 years). Findings indicated that middle-aged and older adults with Down syndrome frequently participated in social and passive leisure…

Exploring the Link between Caregiver Affect and Adolescent Sexual Behavior: Does Neighborhood Disadvantage Matter?

ERIC Educational Resources Information Center

Gardner, Margo; Martin, Anne; Brooks-Gunn, Jeanne

2012-01-01

In a sample of urban youth (N = 1,070), we examined the links between primary caregiver affect (i.e., warmth and hostility) and two measures of sexual behavior in adolescence--early sexual initiation and sex with multiple partners. We also examined the extent to which neighborhood disadvantage moderated associations between caregiver affect and…

Caregivers of patients with cancer: anxiety, depression and distribution of dependency.

PubMed

Cipolletta, Sabrina; Shams, Malihe; Tonello, Fabio; Pruneddu, Alessandra

2013-01-01

Assisting a patient with cancer implies assuming a role that may fit in with the previous role of the person or that may contrast with it, thereby provoking suffering. This research explores if it is possible to identify different profiles of caregivers on the basis of different levels of anxiety and depression as well as on different ways of distributing one's own dependency. There were 50 Italian primary caregivers of patients with cancer who completed the Beck Anxiety Inventory, the Beck Depression Inventory-II, and Kelly's Dependency Grids. Cluster analysis was conducted on the indices derived from the three instruments. Three profiles were found on the basis of how the caregivers used their resources to give and to receive help. If there was congruence between the situation of giving help that the caregivers experienced and their personal role, then anxiety and depression decreased, otherwise, they increased. The implications of the balance/imbalance between the usual and the present role depended also on the typicality of the caregivers' experience, as related to their caring role. These results suggest the usefulness of planning different kinds of support for different experiences of caregiving. Copyright © 2011 John Wiley & Sons, Ltd.

Telephone-based problem-solving intervention for family caregivers of stroke survivors: a randomized controlled trial.

PubMed

Pfeiffer, Klaus; Beische, Denis; Hautzinger, Martin; Berry, Jack W; Wengert, Julia; Hoffrichter, Ruth; Becker, Clemens; van Schayck, Rudolf; Elliott, Timothy R

2014-08-01

Intervention trials for stroke caregivers after the early poststroke period are lacking. To address this gap, we examined the effectiveness of a problem-solving intervention (PSI) for stroke caregivers who provided care for at least 6 months and who experienced significant strain in their role. One hundred twenty-two family caregivers (age = 66.2 years, 77.9% female) were randomly allocated to a PSI or control group. The PSI was composed of 2 home visits and 18 telephone calls delivered over a 3-month intensive intervention and a 9-month maintenance period. PSI and control groups received monthly information letters in addition to usual care. Primary caregiver outcomes were depressive symptoms (measure: Center for Epidemiologic Studies-Depression Scale) and sense of competence (measure: Sense of Competence Questionnaire). In covariance analyses, caregivers of the PSI group showed significantly lower levels of depressive symptoms after 3 months (p < .01, d = -.48) and after 12 months (p < .05, d = -.37), but no better sense of competence compared with the control group. Latent growth curve analyses revealed positive significant (p < .05) linear and quadratic effects of PSI on both primary outcomes. No effects, however, were found on caregiver social-problem-solving abilities. Although beneficial effects were observed among caregivers in the PSI group, the lack of effects on problem-solving abilities implies other characteristics of the intervention might account for these benefits. The relative intensity and therapeutic contact during the first 3 months of the intervention may be particularly helpful to caregivers of stroke survivors. PsycINFO Database Record (c) 2014 APA, all rights reserved.

Caregiver Statistics: Demographics

MedlinePlus

... 20 Arno, P. S., Well Being of Caregivers: The Economic Issues of Caregivers, in T. McRae (Chair), New ... Institute (2011) Valuing the Invaluable: 2011 Update, The Economic Value of Family Caregiving 45 Doty, P. Cost- ...

Burden incurred by patients and their caregivers after outpatient surgery: a prospective observational study.

PubMed

Manohar, Asha; Cheung, Kristin; Wu, Christopher L; Stierer, Tracey S

2014-05-01

The burden of patients and their caregivers after outpatient surgery has not been fully examined. The number of outpatient surgeries has dramatically increased in the last several years, particularly in the orthopaedic sector. Patients undergoing outpatient orthopaedic procedures may be expected to have more postdischarge pain than those undergoing nonorthopaedic outpatient procedures. In light of this, assessment of patient and caregiver expectations and actual burden after discharge is of importance. We assessed the impact of outpatient surgery on recovery of patients and their caregivers in the postoperative period by determining (1) expected versus actual time to resume daily activities, including work; (2) expected versus actual recovery at 7 and 30 days postoperatively; and (3) the number of caregivers that felt emotional or physical disturbances from caring for outpatients. Forty-four adult patients undergoing outpatient surgical procedures and their primary caregivers were enrolled in this prospective survey study, of which 30% were orthopaedic patients. Surveys assessing postoperative recovery were given to patients at six time points, on Postoperative Days 0 to 3, 7, and 30. Surveys assessing the burden of informal caregiving were given to each patient's primary caregiver at four time points, on Postoperative Days 1 to 3 and 7. The enrollment rate was 79% (44 enrolled of 56 approached) and the survey response rate was 100% for patients and 93% (41 of 44) for caregivers. We found that 16 of 44 patients (36%) needed more time than originally anticipated to resume their daily activities and three of 29 patients (10%) needed more time off from work than originally anticipated. Patients were approximately 66% and 88% fully recovered 7 and 30 days after surgery, respectively. The primary caregivers noted disturbances in emotional (nine of 43, 21%) and physical (17 of 43, 40%) aspects of their daily lives while providing care for patients. Our surveyed

The effects of caregiver and household HIV on child development: a community-based longitudinal study of young children.

PubMed

Sherr, L; Skeen, S; Hensels, I S; Tomlinson, M; Macedo, A

2016-11-01

Many studies that document child outcomes in the context of parental HIV - which has been established as a risk factor for child development - focus on older children/adolescents. Studies also concentrate on the status of the primary caregiver, not other household members who might be infected. This study examined the effects of caregiver and household HIV on child development (4-13 years) in South Africa and Malawi (2011-2014). Data were gathered from 989 children and their primary caregivers at baseline and repeated at 12-15 months follow-up (86.5% follow-up rate). Only caregivers of a single child and caregiver/child dyads without missing data were included, providing a sample of 808 dyads for analysis. Children were divided into three groups according to caregiver-reported HIV burden: having an HIV-positive primary caregiver (19.8%), having HIV in the household (14.2%) or no HIV (66%). The HIV burden was positively associated with an array of negative child outcomes, often mediated by caregiver depression levels. Family HIV burden at baseline affected child behavioural problems at follow-up indirectly through carer depression (B = 0.02; CI = 0.003, 0.06). Internalizing (B = 0.02; CI = 0.002, 0.05) and externalizing problems at follow-up (B = 0.01; CI = 0.0002, 0.03) were also indirectly affected by family HIV burden through caregiver depression. The data suggest that family HIV can affect child development, emphasizing the important role of depression in the pathway to such an effect. Community-based interventions directed at alleviating parental depression in the presence of HIV may help to interrupt the cycle of family HIV and adverse child outcomes. © 2016 The Authors. Child: Care, Health and Development Published by John Wiley & Sons Ltd.

Caregiver recall of treatment recommendations in juvenile idiopathic arthritis.

PubMed

De Civita, Mirella; Feldman, Debbie Ehrmann; Meshefedjian, Garbis A; Dobkin, Patricia L; Malleson, Pete; Duffy, Ciarán M

2007-03-15

Health care providers in juvenile idiopathic arthritis (JIA) might refer to caregivers' self-report of children's treatment-related behaviors to assist in clinical decisions. However, caregivers may believe that they are adhering to treatment even though they have a different understanding of recommendations than that intended by the medical team. We examined whether caregiver recall of children's JIA treatment matched actual recommendations at baseline and 3, 6, 9, and 12 months. A total of 235 primary caregivers were recruited from rheumatology clinics at 2 pediatric university-based teaching hospitals in Canada. Using the Parent Adherence Report Questionnaire, caregivers indicated whether their child was prescribed medications and/or exercises. Medical charts were reviewed to determine the prescribed treatment. Level of agreement between both sets of data was then examined. A total of 175 caregivers provided complete data. Mean age of the children was 10.2 years (68.6% girls); 44.6% were diagnosed with oligoarthritis. Kappa coefficients for medication represented substantial to almost perfect agreement beyond chance, with better levels of agreement at 12 months (kappa = 0.81, 95% confidence interval [95% CI] 0.68, 0.94) than at baseline (kappa = 0.61, 95% CI 0.47, 0.76). Kappa coefficients for exercise represented slight to moderate agreement beyond chance, with better agreement at 12 months (kappa = 0.44, 95% CI 0.24, 0.63) than at baseline (kappa = 0.27, 95% CI 0.08, 0.47). Weaker agreement for the exercise regimen raises concern that caregivers may pay less attention to exercise recommendations or that these recommendations may not be easily understood.

Determinants of Informal Care, Burden, and Risk of Burnout in Caregivers of Stroke Survivors: The CONOCES Study.

PubMed

Oliva-Moreno, Juan; Peña-Longobardo, Luz María; Mar, Javier; Masjuan, Jaime; Soulard, Stéphane; Gonzalez-Rojas, Nuria; Becerra, Virginia; Casado, Miguel Ángel; Torres, Covadonga; Yebenes, María; Quintana, Manuel; Alvarez-Sabín, Jose

2018-01-01

The aim of this article was to analyze the likelihood of receiving informal care after a stroke and to study the burden and risk of burnout of primary caregivers in Spain. The CONOCES study is an epidemiological, observational, prospective, multicenter study of patients diagnosed with stroke and admitted to a Stroke Unit in the Spanish healthcare system. At 3 and 12 months post-event, we estimated the time spent caring for the patient and the burden borne by primary caregivers. Several multivariate models were applied to estimate the likelihood of receiving informal caregiving, the burden, and the likelihood of caregivers being at a high risk of burnout. Eighty percent of those still alive at 3 and 12 months poststroke were receiving informal care. More than 40% of those receiving care needed a secondary caregiver at 3 months poststroke. The likelihood of receiving informal care was associated with stroke severity and the individual's health-related quality of life. When informal care was provided, both the burden borne by caregivers and the likelihood of caregivers being at a high risk of burnout was associated with (1) caregiving hours; (2) the patient's health-related quality of life; (3) the severity of the stroke measured at discharge; (4) the patient having atrial fibrillation; and (5) the degree of dependence. This study reveals the heavy burden borne by the caregivers of stroke survivors. Our analysis also identifies explanatory and predictive variables for the likelihood of receiving informal care, caregiver burden, and high risk of burnout. © 2017 American Heart Association, Inc.

The socioeconomic within-gender gap in informal caregiving among middle-aged women: Evidence from a Japanese nationwide survey.

PubMed

Tokunaga, Mutsumi; Hashimoto, Hideki

2017-01-01

Caregiving to older people with needs has been mainly dependent on informal care provision by female caregivers. Compared with the care burden gender gap, the within-gender gap in women's socioeconomic status (SES) has attracted less policy attention. We investigated the association between middle-aged women's SES and the likelihood of being a primary caregiver for elderly informal care, focusing on household income, women's marital status, work status, and educational background under the universal and public system of formal long-term care provision in Japan. We used repeated cross-sectional data from nationally representative household surveys conducted between 2010 and 2013 to obtain a sample of 2399 women aged between 40 and 60 years living in the same household as a care recipient. We conducted multiple logistic regression analysis to obtain odds ratios of being a primary caregiver in the household regressed on women's SES variables, adjusting for the characteristics of care recipients and household composition. The results showed that single women with lower education were likely to be primary caregivers when the care recipients had severe levels of care needs, whereas the association was null in the case of care recipients with milder conditions. The results indicated that women's low education and non-married status were related to a higher likelihood of becoming a primary caregiver of severely disabled elderly for reasons other than lower economic power. To emancipate socioeconomically vulnerable women from the care burden, a broader set of social, economic, and welfare policies are needed. Copyright © 2016 Elsevier Ltd. All rights reserved.

Caregiving styles: a cognitive and behavioral typology associated with dementia family caregiving.

PubMed

Corcoran, Mary A

2011-08-01

An increasing number of elderly individuals are diagnosed with Alzheimer's disease and related disorders (ADRD), many of whom receive daily caregiving from spouse or adult child. Caregiving is a "cultural activity," and as such it is strongly influenced by sociocultural beliefs about caregiving and how it should be enacted. Understanding this thinking-action process has important implications for future research and service. Reasoned action theory provides empirical evidence that attitudes and beliefs, as they are influenced by the social environment, predict intentions to act. In turn, behavioral intentions can reliably predict behaviors. This grounded theory study describes a typology of caregiving styles relevant to family members of an individual with ADRD, where caregiving style is defined as a culturally based pattern in thinking and action. The goal of this study was to characterize the relationship between caregiver intentions and care strategies. Study participants included 97 individuals residing in the Washington, DC, area, who provide daily care for a family member with ADRD. Narrative data were collected from each caregiver during three 1-hr interview sessions. A subset of 30 caregiver-care recipient (CR) dyads was videotaped during typical interactions. Four caregiving styles were identified (facilitating, balancing, advocating, and directing), which differ primarily in the intended focus of care and preferred interactions with the CR. The results provide a foundation for future studies of the relationships between sociocultural context, caregiving styles and strategies, and ensuing outcomes for caregiver-CR dyads.

End-of-Life Caregiver's Perspectives on Their Role: Generative Caregiving

ERIC Educational Resources Information Center

Phillips, Linda R.; Reed, Pamela G.

2010-01-01

Purpose: To describe caregivers' constructions of their caregiving role in providing care to elders they knew were dying from life-limiting illnesses. Design and Methods: Study involved in-depth interviews with 27 family caregivers. Data were analyzed using constant comparative analysis. Results: Four categories were identified: centering life on…

Perceiving Elder Caregivers: Effects of Gender, Employment and Caregiving Hours.

ERIC Educational Resources Information Center

Etaugh, Claire; Laumann, Lisa

Family care of elderly parents is increasing. The typical caregiver is a married middle-aged daughter who often has additional employment and family responsibilities. Not surprisingly, female caregivers of the elderly report more stress than male caregivers. This study examined perceptions of the nurturance, professional competence and stresses of…

Characteristics of informal caregivers of patients with dementia in Alicante province.

PubMed

Toribio-Díaz, M E; Medrano-Martínez, V; Moltó-Jordá, J M; Beltrán-Blasco, I

2013-03-01

Informal caregivers provide care to dementia patients, and this service prolongs their stay at home. To describe characteristics of dementia patients in the province of Alicante, as well as the profiles and roles of caregivers who assist them. Multi-centre prospective study carried out in 4 neurology departments in Alicante (June 2009 to January 2010). Dementia patients' relatives/caregivers were included in sequential order. The following variables were analysed: a) Demographic information pertaining to the patient and caregivers (age, sex, marital and employment status, educational level, relationship to patient); b) patient's family unit; c) motivating factor for primary caregiver (PC); d) secondary caregiver (SC) roles; e) country of citizenship of formal caregiver (FC) and source of remuneration (private/public); f) caregivers' knowledge of dementia. Most of our patients live at home (74.8%), and are female (69%) with Alzheimer's disease (78.4%) in a moderately severe stage (GDS level 4-5, 71.6%). PCs and SCs are mainly women (72.1% and 60.5% respectively), middle-aged and directly related to the patient (sons/daughters account for 64.3% of the PCs and 54.4% of the SCs); most are homemakers with a low educational level. Caregivers in the first category (PC) provide care due to moral obligation (75%), while those in the second (SC) involve patients in leisure or other stimulating activities (82.3%). Absent caregivers tend to be males (73.3%) residing long distances from the relative (52.4%). The FC tends to be female (91.7%), Spanish (81.8%) and privately remunerated. Women dominate the network of caregivers for dementia patients, whether as principal caregivers, supporting caregivers or formal caregivers (in all cases, they have only limited training in dementia management). Males are largely absent. Better knowledge of the care structure supporting dementia patients may be helpful in the overall management of these patients. Copyright © 2012 Sociedad Espa

Caregiver Café: Providing Education and Support to Family Caregivers of Patients With Cancer
.

PubMed

Finley, Joanne P

2018-02-01

The many burdens faced by caregivers of patients with cancer are well documented. Caregivers are asked to perform procedures, make assessments, coordinate care, and communicate with healthcare providers at an increasingly complex level. A caregiver quality improvement project, in the form of a Caregiver Café, was instituted at a National Cancer Institute-designated comprehensive cancer center.
. The objectives of the café are to (a) provide respite and a place for caregivers to relax and be nurtured, (b) provide a place for caregivers to meet and support each other, (c) provide answers to caregiver questions, and (d) recommend appropriate caregiver resources.
. The weekly Caregiver Café is led by an advanced practice nurse, and the format varies depending on the needs of the caregivers who attend.
. Caregivers have verbalized the importance of the café in helping them cope with their loved ones' cancers and treatments, and many attend on a regular basis. The Caregiver Café provides support and information and a place to get away from it all.

Resilience in family caregivers of persons with acquired brain injury.

PubMed

Las Hayas, Carlota; López de Arroyabe, Elena; Calvete, Esther

2015-08-01

The authors' purpose was to develop the Questionnaire of Resilience in Caregivers of Acquired Brain Injury (QRC-ABI) and explore its psychometric properties The QRC-ABI was developed to measure the process of resilience, including resilient factors that, according to the literature, are the most relevant for caregivers. This is a cross-sectional study of Spanish primary caregivers of individuals with ABI. It included 237 caregivers (77.6% women and 21.1% men) who completed the QRC-ABI, the Posttraumatic Growth Inventory (Weiss & Berger, 2006), the World Health Organization Quality of Life-BREF (Skevington, Lotfy, O'Connell, & the WHOQOL Group, 2004) assessment, and the Positive Aspects of Caregiving (Tarlow et al., 2004) assessment. An item pool of 36 items was developed, from which 17 were finally selected based on a consensus among researchers and adequate symmetry indexes and kurtoses. Confirmatory factor analysis of the QRC-ABI confirmed a hierarchical solution in which 4 resilience dimensions were explained by a broader general resilience factor. The internal consistency of each scale was >.80. Convergent validity was supported through positive correlations of the QRC-ABI with quality of life, positive aspects of caregiving, and posttraumatic growth, and a negative correlation with perceived burden. The new QRC-ABI showed good reliability and validity. Our results are consistent with previous studies that have argued that resilient qualities are important for a healthy and positive adaptation to the challenging adversities faced by caregivers of individuals with ABI. Future interventions based on resilience should promote these factors in caregivers. (c) 2015 APA, all rights reserved).

Caregiver burden and needs of dementia caregivers in Thailand: a cross-sectional study.

PubMed

Muangpaisan, Weerasak; Praditsuwan, Rungnirand; Assanasen, Jintana; Srinonprasert, Varalak; Assantachai, Prasert; Intalapaporn, Somboon; Chatthanawaree, Wichai; Dajpratham, Piyapat; Kuptniratsaikul, Vilai; Pisansalakij, Doojpratna

2010-05-01

To identify the burdens of Thai dementia caregivers and to determine the services that could support them in this function. The authors surveyed 88 dementia caregivers attending "Caregiver Day". The questionnaire contained Caregiver Burden Inventory. The answers range from "not at all descriptive" (zero) to "very descriptive" (4). The authors also explored baseline characteristics of caregivers and care recipients as well as caregiver's needs of a supporting system. There was an 82% response rate. Responses in time-dependence burden distributed almost equally in the five possible scales. In developmental and physical burden, caregivers rate scores mainly from 0-2. The scores in social and emotional burden ranged mainly between 0-1. Dependency in basic activities of daily living correlated with higher caregiver burden (odd ratio 7.48, 95% confidence interval 1.42-39.53, p = 0.02), while sex and kinship did not. The top three caregiver's needs were 1) caregiver education and training, 2) telephone line provided for caregiver consultation and 3) special system in a hospital provided for dementia patients to have rapid access to see a doctor. Caring for dementia patients can lead to high caregiver burden, particularly those caring for dependent patients. Physical and developmental burdens are affected more than social and emotional burdens. Culture, relationship quality and resources (coping, outlook on life and social support) might be contributing factors of this difference.

Contingency management adapted for African-American adolescents with obesity enhances youth weight loss with caregiver participation: a multiple baseline pilot study.

PubMed

Hartlieb, Kathryn Brogan; Naar, Sylvie; Ledgerwood, David M; Templin, Thomas N; Ellis, Deborah A; Donohue, Bradley; Cunningham, Phillippe B

2015-12-07

Contingency management (CM) interventions, which use operant conditioning principles to encourage completion of target behavioral goals, may be useful for improving adherence to behavioral skills training (BST). Research-to-date has yet to explore CM for weight loss in minority adolescents. To examine the effects of CM in improving adolescent weight loss when added to BST. The study utilized an innovative experimental design that builds upon multiple baseline approaches as recommended by the National Institutes of Health. Six obese African-American youth and their primary caregivers living in Detroit, Michigan, USA. Adolescents received between 4 and 12 weeks of BST during a baseline period and subsequently received CM targeting weight loss. Youth weight. Linear mixed effects modeling was used in the analysis. CM did not directly affect adolescent weight loss above that of BST (p=0.053). However, when caregivers were involved in CM session treatment, contingency management had a positive effect on adolescent weight loss. The estimated weight loss due to CM when caregivers also attended was 0.66 kg/week (p<0.001, [95% CI; -1.96, -0.97]) relative to the baseline trajectory. This study demonstrates application of a novel experimental approach to intervention development and demonstrated the importance of parent involvement when delivering contingency management for minority youth weight loss. Lessons learned from contingency management program implementation are also discussed in order to inform practice.

Structural barriers to South African volunteer home-based caregivers providing quality care: the need for a policy for caregivers not affiliated to primary healthcare clinics.

PubMed

Morton, David; Mayekiso, Thoko; Cunningham, Peter

2018-03-01

Community home-based care (CHBC) is a critical component of non-formal care in communities in Africa that have a high prevalence of HIV and tuberculosis (TB). Community carers consisting primarily of volunteers are critical role players in African healthcare systems and particularly in South Africa's strategy to fight HIV and AIDS. This paper explores the structural barriers volunteer caregivers need to overcome to provide quality CHBC. The researchers used two focus group discussions with key informants (each with four participants), and semi-structured interviews with six key informants to collect data relating to the meaning of quality CHBC. The data were coded using Tesch's data analysis technique. A major theme that emerged from the results was "Addressing structural challenges to improve the quality of CHBC". Subthemes underpinning this theme were: 1) lack of standardised training of volunteer caregivers; 2) the need for a scope of practice, parameters and legal boundaries; 3) lack of monitoring and evaluation (M&E) of CHBC; and 4) the importance of mentoring and supervision in CHBC. CHBC policy should address the need for standardised training programmes for caregivers, so that they are equipped with multiple skills. Furthermore CHBC policy must emphasise mentoring as well as M&E to encourage quality care. Finally, the policy should provide a clear scope of practice for caregivers to regulate their competencies and boundaries.

Influence of caregiver personality on the burden of family caregivers of terminally ill cancer patients.

PubMed

Kim, Ha-Hyun; Kim, Seon-Young; Kim, Jae-Min; Kim, Sung-Wan; Shin, Il-Seon; Shim, Hyun-Jeong; Hwang, Jun-Eul; Chung, Ik-Joo; Yoon, Jin-Sang

2016-02-01

To determine the influence of caregiver personality and other factors on the burden of family caregivers of terminally ill cancer patients. We investigated a wide range of factors related to the patient-family caregiver dyad in a palliative care setting using a cross-sectional design. Caregiver burden was assessed using the seven-item short version of the Zarit Burden Interview (ZBI-7). Caregiver personality was assessed using the 10-item short version of the Big Five Inventory (BFI-10), which measures the following five personality dimensions: extroversion, agreeableness, conscientiousness, neuroticism, and openness. Patient- and caregiver-related sociodemographic and psychological factors were included in the analysis because of their potential association with caregiver burden. Clinical patient data were obtained from medical charts or by using other measures. Multivariate linear regression analysis was performed to identify the independent factors associated with caregiver burden. We analyzed 227 patient-family caregiver dyads. The multivariate analysis revealed that caregiver extroversion was protective against caregiver burden, whereas depressive symptoms in caregivers were related to increased burden. Neuroticism was positively correlated with caregiver burden, but this relationship was nonsignificant following adjustment for depressive symptoms. Patient-related factors were not significantly associated with caregiver burden. Evaluating caregiver personality traits could facilitate identification of individuals at greater risk of high burden. Furthermore, depression screening and treatment programs for caregivers in palliative care settings are required to decrease caregiver burden.

The Caregiving Experience in a Racially Diverse Sample of Cancer Family Caregivers

PubMed Central

Siefert, Mary Lou; Williams, Anna-leila; Dowd, Michael F.; Chappel-Aiken, Lolita; McCorkle, Ruth

2009-01-01

The literature supports a variety of predictor variables to account for the psychological and stress burden experienced by cancer family caregivers. Missing among the predictor variables are the differences by or influence of race/ethnicity. The purpose of this study was to describe the sample, explore differences in outcomes by patient and family caregiver characteristics, and determine if any of the patient and family characteristics, including race/ethnicity, predicted outcomes. Cross-sectional surveys were used to determine sociodemographics, psychological and physical health, and burdens of caregiving among 54 caregivers. The analysis consisted of descriptive methods, including frequencies and t tests, and regression modeling. The sample was 35% African American or Hispanic. African American and Hispanic caregivers were younger than white caregivers and more often women, were rarely the spouse of the patient, and frequently had other dependents, including children and older parents. African American and Hispanic caregivers reported lower incomes and more burden related to finances and employment than did white caregivers. When controlling for sociodemographic factors, there was no difference by race/ethnicity on the outcome measures. The experience of caregiving may supersede race/ethnicity and may be its own cultural entity. Areas of concern include the interrelationship between socioeconomic status and race/ethnicity, the absence of cultural frameworks to direct caregiver research, and the question of cultural relevance of measurement tools. PMID:18772665

Depression, caregiver burden and social support among caregivers of retinoblastoma patients in China.

PubMed

Wang, Li-Juan; Zhong, Wen-Xiang; Ji, Xun-Da; Chen, Jiao

2016-10-01

The aim of this study is to examine the burden of family caregivers of patients with retinoblastoma in China and the relationships between depression, caregiver burden and social support. A descriptive and correlational survey was conducted with 117 Chinese family caregivers of outpatient patients with retinoblastoma from the Department of Ophthalmology of a tertiary hospital in Shanghai, China. Family caregivers of outpatient patients with retinoblastoma were asked to respond to four questionnaires including sociodemographic questionnaire, Becker Depression Inventory, Caregiver Burden Inventory and Social Support Rating Scale. The incidence of depression in this study was 51.3%; the average score for social support indicated moderate social support available to the caregivers, although their level of caregiver burden was heavy. Depression scores were significantly positively correlated with caregiver burden scores and significantly negatively correlated with the social support scores. Heavy caregiver burden was associated with lower monthly income, low subjective social support and less use of social support. © 2016 John Wiley & Sons Australia, Ltd.

Educational interventions for improving primary caregiver complementary feeding practices for children aged 24 months and under.

PubMed

Arikpo, Dachi; Edet, Ededet Sewanu; Chibuzor, Moriam T; Odey, Friday; Caldwell, Deborah M

2018-05-18

Although complementary feeding is a universal practice, the methods and manner in which it is practiced vary between cultures, individuals and socioeconomic classes. The period of complementary feeding is a critical time of transition in the life of an infant, and inappropriate complementary feeding practices, with their associated adverse health consequences, remain a significant global public health problem. Educational interventions are widely acknowledged as effective in promoting public health strategy, and those aimed at improving complementary feeding practices provide information about proper complementary feeding practices to caregivers of infants/children. It is therefore important to summarise evidence on the effectiveness of educational interventions to improve the complementary feeding practices of caregivers of infants. To assess the effectiveness of educational interventions for improving the complementary feeding (weaning) practices of primary caregivers of children of complementary feeding age, and related health and growth outcomes in infants. In November 2017, we searched CENTRAL, MEDLINE, Embase, 10 other databases and two trials registers. We also searched the reference lists of relevant studies and reviews to identify any additional studies. We did not limit the searches by date, language or publication status. Randomised controlled trials (RCTs), comparing educational interventions to no intervention, usual practice, or educational interventions provided in conjunction with another intervention, so long as the educational intervention was only available in the experimental group and the adjunctive intervention was available to the control group. Study participants included caregivers of infants aged 4 to 24 months undergoing complementary feeding. Pregnant women who were expected to give birth and commence complementary feeding during the period of the study were also included. Two review authors independently extracted data on participants

Lack of communication and control: experiences of distance caregivers of parents with advanced cancer.

PubMed

Mazanec, Polly; Daly, Barbara J; Ferrell, Betty Rolling; Prince-Paul, Maryjo

2011-05-01

To explore the new and complex phenomenon of distance caregiving in the advanced cancer population. Qualitative. A large comprehensive cancer center in the midwestern region of the United States. 14 distance caregivers of parents with advanced cancer. Patients with advanced lung, gastrointestinal, and gynecologic malignancies consented to have their distance caregiving adult children contacted to participate in the study. Responses to three open-ended questions guided the tape-recorded telephone interviews with the distance caregivers. Following transcription, content analysis with inductive coding was performed. Two major themes, communication and control, and five subthemes, benefits and burdens of distance caregiving, dealing with uncertainty, direct action through information seeking, protecting, and staying connected, emerged from the data. Distance caregivers experience some of the same stressors that local caregivers of patients with cancer experience. In addition, they have unique psychosocial needs related to the burden of geographic distance. Distance caregivers could benefit from nursing interventions targeted at their unique needs. Innovative interventions using Web-based computer technology for improved communication, as well as supportive care interventions, may be helpful.

Providing Perinatal Mental Health Services in Pediatric Primary Care

ERIC Educational Resources Information Center

Talmi, Ayelet; Stafford, Brian; Buchholz, Melissa

2009-01-01

After birth, newborns and their caregivers are seen routinely and frequently in pediatric primary care settings. The close succession of visits in the first few months of life puts pediatric primary care professionals in a unique position to enhance infant mental health by developing strong relationships with caregivers, supporting babies and…

Canadian Alzheimer's disease caregiver survey: baby-boomer caregivers and burden of care.

PubMed

Black, Sandra E; Gauthier, Serge; Dalziel, William; Keren, Ron; Correia, Jane; Hew, Huong; Binder, Carin

2010-08-01

Alzheimer's disease (AD) burdens not only the person, but also the person's caregiver(s). This burden has been linked to negative health effects for caregivers. To that end, a survey of Canadian caregivers of persons with AD/other dementias was conducted to investigate the social, physical, psychological and financial impact of AD and/or dementia-related conditions on caregivers' quality of life. A web-based survey, the Canadian Alzheimer's Disease Caregiver survey, was made available through the Canadian Alzheimer's Society website and 50plus.com, an internet portal for baby boomers (BB) (people aged 50 years or older), as well as through HarrisDecima Research's e-Vox panel. A total of 398 individuals completed the survey between 15 September and 5 November 2006. Of the 398 total respondents, 221 were identified as baby boomers who provided care to an individual with AD/dementia. Respondents identified several areas of burden of care. These included negative effects on emotional health (such as increased depression, more stress and greater fatigue), financial costs and a need to change a working situation (e.g. by retiring early, reducing work hours or refusing a promotion). Caregivers of persons with AD/related dementia face important social, physical, psychological and financial pressures. These negatively affect the quality of life of caregivers with a significant increased burden being placed on live-in caregivers versus caregivers who do not co-reside with their care recipients. Interventions that address these pressures will not only improve the health and well-being of caregivers, but likely also the care of persons with AD/dementia.

Affiliate stigma and its association with quality of life among caregivers of relatives with mental illness in Singapore.

PubMed

Zhang, Yunjue; Subramaniam, Mythily; Lee, Siau Pheng; Abdin, Edimansyah; Sagayadevan, Vathsala; Jeyagurunathan, Anitha; Chang, Sherilyn; Shafie, Saleha Binte; Abdul Rahman, Restria Fauziana; Vaingankar, Janhavi Ajit; Chong, Siow Ann

2018-07-01

Affiliated stigma often refers to internalized stigma among family members of stigmatized individuals. This study aimed to investigate the relationship between affiliate stigma and quality of life (QOL) among primary caregivers of individuals with mental illness undergoing treatment at the Institute of Mental Health, Singapore. Three hundred and fifty caregivers were recruited for the study. The World Health Organization Quality of Life questionnaire (WHOQOL-BREF) and Family Stigma Scale (FSS) were administered to the primary caregivers of patients with mental illness. Multiple linear regression analyses were conducted to investigate the association of affiliate stigma with QOL. A high proportion of caregivers of individuals with mental illness experience affiliate stigma in Singapore. All four QOL domains were significantly associated with affiliate stigma. These findings entail that it is imperative to improve public's perception of those with mental illness to reduce stigmatization and thus improve caregiver's QOL. Copyright © 2018. Published by Elsevier B.V.

The Effects of a Family Support Program Including Respite Care on Parenting Stress and Family Quality of Life Perceived by Primary Caregivers of Children with Disabilities in Korea

ERIC Educational Resources Information Center

Sung, Minjung; Park, Jiyeon

2012-01-01

In this study, a family support program was carried out for primary caregivers of children with disabilities. The program included respite care, recreation programs, counseling, and social support coordination based on individual needs of each family. In order to verify the intervention effects, parenting stress and family quality of life were…

Conveying empathy to hospice family caregivers: Team responses to caregiver empathic communication

PubMed Central

Wittenberg-Lyles, Elaine; Oliver, Debra Parker; Demiris, George; Rankin, Anna; Shaunfield, Sara; Kruse, Robin L.

2012-01-01

Objective The goal of this study was to explore empathic communication opportunities presented by family caregivers and responses from interdisciplinary hospice team members. Methods Empathic opportunities and hospice team responses were analyzed from biweekly web-based videoconferences between family caregivers and hospice teams. The authors coded the data using the Empathic Communication Coding System (ECCS) and identified themes within and among the coded data. Results Data analysis identified 270 empathic opportunity-team response sequences. Caregivers expressed statements of emotion and decline most frequently. Two-thirds of the hospice team responses were implicit acknowledgments of caregiver statements and only one-third of the team responses were explicit recognitions of caregiver empathic opportunities. Conclusion Although hospice team members frequently express emotional concerns with family caregivers during one-on-one visits, there is a need for more empathic communication during team meetings that involve caregivers. Practice implications Hospice clinicians should devote more time to discussing emotional issues with patients and their families to enhance patient-centered hospice care. Further consideration should be given to training clinicians to empathize with patients and family caregivers. PMID:22554387

Information and Communication Technologies in the Care of the Elderly: Systematic Review of Applications Aimed at Patients With Dementia and Caregivers

PubMed Central

2016-01-01

Background The interest in applying information and communications technology (ICT) in older adult health care is frequently promoted by the increasing and unsustainable costs of health care services. In turn, the unprecedented growth of the elderly population around the globe has urged institutions, companies, industries, and governments to respond to older adults’ medical needs. Objective The aim of this review is to systematically identify the opportunities that ICT offers to health services, specifically for patients with dementia and their families. Methods A systematic review of the literature about ICT applications that have been developed to assist patients with Alzheimer’s disease (AD) and their primary caregivers was conducted. The bibliographic search included works published between January 2005 and July 2015 in the databases Springer Link, Scopus, and Google Scholar. Of the published papers, 902 were obtained in the initial search, of which 214 were potentially relevant. Included studies fulfilled the following inclusion criteria: (1) studies carried out between the years of 2005 and 2015, (2) studies were published in English or Spanish, (3) studies with titles containing the keywords, (4) studies with abstracts containing information on ICT applications and AD, and (5) studies published in indexed journals, proceedings, and book chapters. Results A total of 26 studies satisfied the inclusion criteria for the current review. Among them, 16 were aimed at the patient with AD and 10 at the primary caregivers and/or family members. The studies targeted applications that included assistive technology (44%, 7/16), telecare (37%, 6/16), and telemedicine (31%, 5/16). The information systems (56%, 9/16) and Internet (44%, 7/16) were the most commonly used enabling technologies for the studies. Finally, areas of attention more covered by the studies were care (56%, 9/16), treatment (56%, 9/16), and management (50%, 8/16). Furthermore, it was found that 20