Nothing left to chance? The impact of locus of control on physical and mental quality of life in terminal cancer patients.

PubMed

Brown, Alaina J; Thaker, Premal H; Sun, Charlotte C; Urbauer, Diana L; Bruera, Eduardo; Bodurka, Diane C; Ramondetta, Lois M

2017-06-01

The purpose of this study is to evaluate if locus of control (LOC) predicts various quality of life (QOL) and mental well-being measures among terminally ill cancer patients at the time of palliative care consult. Multi-site analysis of patients with advanced cancer being seen as new patients in a Palliative and Supportive Care outpatient clinic. Patients completed the following surveys: locus of control (LOC) scale, Functional Assessment of Chronic Illness Therapy-General (FACT-G), Functional Assessment of Chronic Illness Therapy-Spiritual (FACIT-Sp), Hospital Anxiety Depression Scale (HADS), and Herth Hope Index (HHI). Regression models were created to examine the effect of LOC upon QOL, symptoms, and other measures of mental well-being. These models adjusted for the effect of age, gender, race, partnership status, education, and months since diagnosis as potential confounders. This study enrolled 100 patients. After adjusting for site, race, and partnership status, higher levels of LOC chance predicted decreased QOL (FACT-G) (p < 0.01). Higher levels of LOC chance also correlated with increased depression and anxiety (p ≤ 0.01) and decreased meaning/peace and faith (p ≤ 0.01). Additionally, higher levels of LOC chance predicted decreased hope (HHI) (p ≤ 0.001). Terminally ill cancer patients with a high LOC chance may be at risk for decreased physical and mental well-being at the end of life. Efforts should be made to identify these patients and design interventions to increase their feeling of control over the situation in order to improve physical and mental well-being at the end of life.

Toward Dignity in Care: An In-Service Model

ERIC Educational Resources Information Center

Nash, Mary L.; And Others

1977-01-01

How can the dignity or well being of people in the terminal phase of their lives be fostered? A short-term educational program model was developed to assist a group of personnel (N=83) in a hospital for the chronically ill to become more responsive to this challenge. (Author)

Neurodevelopment and Chronic Illness: Mechanisms of Disease and Treatment

ERIC Educational Resources Information Center

Armstrong, F. Daniel

2006-01-01

Successful treatment of many childhood diseases once considered terminal has resulted in the emergence of long-term effects of the disease or consequences of treatment that were previously unrecognized. Many of these long-term effects involve the central nervous system (CNS) and are developmental in the way that they emerge over time. Because we…

Advanced Respite Care: Medically Challenged. Teacher Edition. Respite Care Series.

ERIC Educational Resources Information Center

Oklahoma State Dept. of Vocational and Technical Education, Stillwater. Curriculum and Instructional Materials Center.

This curriculum guide is designed to help teachers to provide advanced-level training for care providers who want to work with individuals who are chronically or terminally ill and require specialized care. The curriculum contains seven units. Each of the instructional units includes some or all of these basic components: performance objectives,…

Caring for an adolescent with a chronic illness.

PubMed

Buhlmann, U; Fitzpatrick, S B

1987-03-01

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

Specialized Summer Camps: Provide Benefits for Children and Families Alike

ERIC Educational Resources Information Center

Neff, John M.

2009-01-01

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

Respite Care: An Overview of Federal, Selected State, and Private Programs. Report to Congressional Requesters.

ERIC Educational Resources Information Center

General Accounting Office, Washington, DC. Div. of Human Resources.

This report examines respite care services that provide temporary relief to family members and other caretakers of children at risk of abuse or neglect including children who are mentally retarded, behaviorally disturbed, physically disabled, or chronically or terminally ill. In 1988 the 25 states surveyed funded 111 respite care programs as did…

Patients who are near death are frequently unable to self-report dyspnea.

PubMed

Campbell, Margaret L; Templin, Thomas; Walch, Julia

2009-10-01

Standard measures of dyspnea rely on the patient's self-report. Declining consciousness and/or cognitive function and nearness to death may interfere with dyspnea reporting making the patient vulnerable to undertreatment or overtreatment. An observational design was used with 89 consecutive patients referred for inpatient palliative care consultation. Patients were included if they were at risk for dyspnea because of one or more of the following: lung cancer, chronic obstructive pulmonary disease (COPD), heart failure, or pneumonia. Patients were asked "Are you short of breath?" and asked to quantify any distress by pointing to a visual analogue scale (VAS). Other measures included: consciousness, cognitive state, terminal illness severity, and patient demographics. More than half of the patients (54%) were unable to provide a yes or no response. Only 20 of 41 (49%) able to respond with yes or no were able to quantify any distress with the VAS. Ability to self-report was positively associated with consciousness (p < 0.01), cognitive state (p < 0.01), and terminal illness severity (p < 0.01). A significant inverse relationship was found between consciousness and terminal illness severity (p < 0.01). Declines in consciousness and cognitive state were strongly correlated with nearness to death (p < 0.01). Declining consciousness and/or cognitive state are expected when patients are near death. The ability to give even the simplest self-report (yes or no) about dyspnea is lost in the near-death phase of terminal illness, yet the ability to experience distress may persist and may be overlooked and undertreated or overtreated. Other methods for symptom assessment are needed in this context.

The shift to early palliative care: a typology of illness journeys and the role of nursing.

PubMed

Wittenberg-Lyles, Elaine; Goldsmith, Joy; Ragan, Sandra

2011-06-01

For the current study, clinical observations of communication between patients, families, and clinicians during chronic, serious, or terminal illness in a cancer care trajectory were examined for patterns and trends. Five communication characteristics were concluded, which informed a typology of illness journeys experienced by patients with cancer and their families. The isolated journey characterizes an illness path in which communication about terminal prognosis and end-of-life care options are not present; communication is restricted by a curative-only approach to diagnosis as well as the structure of medical care. The rescued journey signifies a transition between curative care (hospital narrative) to noncurative care (hospice narrative), challenging patients and their families with an awareness of dying. The rescued journey allows communication about prognosis and care options, establishes productive experiences through open awareness, and affords patients and families opportunities to experience end-of-life care preferences. Finally, palliative care prior to hospice provides patients and families with an illness journey more readily characterized by open awareness and community, which facilitates a comforted journey. Nurses play a pivotal role in communicating about disease progression and plans of care. The typology presented can inform a structured communication curriculum for nurses and assist in the implementation of early palliative care.

Development and Implementation of a Medication Adherence Training Instrument for Persons Living With HIV: The MATI

ERIC Educational Resources Information Center

McPherson-Baker, Shvawn; Jones, Deborah; Duran, Ron E.; Klimas, Nancy; Schneiderman, Neil

2005-01-01

Recent advances in the medical management of HIV offer the potential for increased longevity, improved quality of life, and the treatment of HIV as a chronic, rather than terminal, illness. The advent of highly active antiretroviral therapy (HAART) has required the necessity of strict adherence to complex medication regimens. As a vital factor in…

[Validation of the Scale of Hope in Terminal Illness for relatives brief version (SHTI-b). Validity and reliability analysis.

PubMed

Villacieros, M; Bermejo, J C; Hassoun, H

2017-12-29

Bermejo and Villacieros' Scale of Hope in Terminal Disease (SHTD) specifically collects meanings of hope facing terminal disease, including considerations relating to psycho-emotional support and that have a transcendental sense. The objective of this paper is to validate the SHTD abbreviated and rephrased to adapt all the items to a single domain. Starting from the published SHTD, an exploratory factor analysis (EFA) was carried out with a sample of 177 valid questionnaires. In a second study, with another sample of 180 valid questionnaires, a confirmatory factor analysis (CFA) and a correlation analysis with other measurements of spiritual wellbeing (Functional Assessment of Chronic Illness Therapy-Sp) and hope (Herth Hope Index) were done. A bidimensional model with satisfactory goodness of fit index values was obtained (GFI = 0.991; CFI = 0.984; SRMR = 0.08; RMSEA = 0.057); the Relations of Transcendence factor obtained a Cronbach's alpha of 0.872 and Personal Relations an alpha of 0.762. The correlations of the SHTI-rb with external measures were: r = 0.527with FACIT; r = 0.266 with HHI; r = 0.667 with the Spirituality subscale of FACIT; and r = 0.348 with the Interrelation factor of HHI. The Relations of Transcendence subscale correlated with both Layout and Expectation and Interrelation of HHI (r = 0.162 and r = 0.329 respectively), while the scale of Personal Relations only correlated with Interrelation of HHI (r = 0.244). The Scale of Hope in Terminal Illness for relatives (brief version) is a valid and reliable specific instrument for terminal patients.

42 CFR 418.22 - Certification of terminal illness.

Code of Federal Regulations, 2013 CFR

2013-10-01

... 42 Public Health 3 2013-10-01 2013-10-01 false Certification of terminal illness. 418.22 Section... Certification of terminal illness. (a) Timing of certification—(1) General rule. The hospice must obtain written certification of terminal illness for each of the periods listed in § 418.21, even if a single election...

42 CFR 418.22 - Certification of terminal illness.

Code of Federal Regulations, 2012 CFR

2012-10-01

... 42 Public Health 3 2012-10-01 2012-10-01 false Certification of terminal illness. 418.22 Section... Certification of terminal illness. (a) Timing of certification—(1) General rule. The hospice must obtain written certification of terminal illness for each of the periods listed in § 418.21, even if a single election...

42 CFR 418.22 - Certification of terminal illness.

Code of Federal Regulations, 2014 CFR

2014-10-01

... 42 Public Health 3 2014-10-01 2014-10-01 false Certification of terminal illness. 418.22 Section... Certification of terminal illness. (a) Timing of certification—(1) General rule. The hospice must obtain written certification of terminal illness for each of the periods listed in § 418.21, even if a single election...

42 CFR 418.22 - Certification of terminal illness.

Code of Federal Regulations, 2011 CFR

2011-10-01

... 42 Public Health 3 2011-10-01 2011-10-01 false Certification of terminal illness. 418.22 Section... Certification of terminal illness. (a) Timing of certification—(1) General rule. The hospice must obtain written certification of terminal illness for each of the periods listed in § 418.21, even if a single election...

When Is Depression a Terminal Illness? Deliberative Suicide in Chronic Mental Illness.

PubMed

George, Constance E

2016-06-01

This commentary explores the utility of hope as a therapeutic tool for intervention in the case of a patient with a mental illness that is refractory to treatment over time, who expresses her intention to commit suicide. It begins with a short discussion differentiating a deliberative consideration of suicide from an impulsive act. Then the commentary defines hope, how it might be used as a therapeutic tool, and which limitations a clinician might confront in such a case. This commentary also considers the role of a physician in orientation not only to the patient but also to her own thoughts, feelings, and emotions regarding a patient's expressed desire to end her life. © 2016 American Medical Association. All Rights Reserved. ISSN 2376-6980.

Death Orientation and Communication with the Terminally Ill.

ERIC Educational Resources Information Center

Eggerman, Sinda; Dustin, Dick

1986-01-01

Examined relationship betwen attitude toward death and the terminal patient and communication with terminally ill in 103 medical students and 15 family physicians. Relationships were found between indices (Terminal Illness Questionnaire, Threat Index) and factors used in determining whether to reveal a terminal diagnosis. (Author/NRB)

The management of diabetes in terminal illness related to cancer.

PubMed

King, E J; Haboubi, H; Evans, D; Baker, I; Bain, S C; Stephens, J W

2012-01-01

The management of diabetes during terminal illness is complex, with lack of agreement and consensus among physicians and multidisciplinary teams. Despite the plethora of guidelines available for the management of diabetes, there exists no agreed, evidence-based strategy for managing diabetes during terminal illness and at the end of life. A number of physiological factors may influence glycaemic control during terminal illness. These include anorexia, cachexia, malabsorption, renal and hepatic failure. Furthermore, controversy exists on the frequency of blood glucose monitoring, the optimum blood glucose range and how to achieve this. We review the factors influencing blood glucose during terminal illness and provide a suggested approach to managing patients with type 1 and type 2 diabetes during the early and late stages of terminal illness.

Factors affecting caregiver burden of terminally ill adults in the home setting - A systematic review.

PubMed

He Leow, Mabel Qi; Wai Chi Chan, Sally

Background: Terminally ill people have complex physical and psychological needs. As a result, their caregivers may experience high levels of burden, and some caregivers are unable to cope with the burden. Thus, it is important to determine the various factors that may influence caregiver burden, so that healthcare professionals may implement strategies to reduce caregiver burden. In this review, "caregiver burden" was expanded to include "caregiver stress" and "caregiver strain", as the two terms were related to caregiver burden. The objective of this systematic review was to identify the factors that may influence caregiver burden of a terminally ill adult in the home setting. Types of participants: This review considered adult participants (above age 18) who were the main caregivers of a terminally ill adult in the home setting, and providing care for the terminally ill person at the point of participation in the study.Types of intervention: There was no specific intervention of interest for the study.Types of outcomes: The focus of study was the factors that affected caregiver burden of the terminally ill person.Types of studies: Quantitative studies such as randomised controlled trials (RCTs), controlled clinical trials (CCTs), interrupted time series (ITSs), controlled before after designs (CBAs), observational design (cohort, case-control), and descriptive surveys were included in the study. This review was limited to papers in English and Mandarin. A literature search from the inception of the database to October 2010 was conducted using major electronic databases. The databases used were CINAHL, MEDLINE, PsycINFO (Ovid), Scopus, SpringerLink, ScienceDirect, Web of Science, Mosby's Nursing Consult, Mednar: Deep web medical search, Proquest Dissertations and Theses and China Journal Net.Methodological quality: The quality of the potential studies was assessed by two independent reviewers using the critical appraisal checklists for descriptive/case studies from the JBI-MAStARI (Joanna Briggs Institute-Meta Analysis of Statistics Assessment and Review Instrument). Quantitative data were extracted from included papers using standardised data extraction tools from the JBI-MAStARI. Findings were presented in narrative form, as statistical pooling was not possible. Seven studies were included in the review. All the studies used a cross-sectional descriptive survey for the collection of data. Four main factors that influenced caregivers' perception of caregiving burden were identified: 1. Caregiver characteristics, 2. Patient characteristics, 3. Social support, and 4. Caregivers' personal protective resources. Caregiver characteristics, patient characteristics, social support, and attitude of caregiver towards the caregiving situation, were found to influence caregivers' perceived caregiving burden. Additional support is required for caregivers who are employed, known to have financial difficulties, caring for patient indicating symptom distress, and caring for a patient at the terminal stage (Level III). Future studies may attempt to develop a framework to identify factors that impact on caregiver burden. More studies on caregiver burden in males, caregiver burden of patients who were at the terminal stages of the various chronic illnesses should be explored.

Revisiting biographical disruption: exploring individual embodied illness experience in people with terminal cancer.

PubMed

Reeve, Joanne; Lloyd-Williams, Mari; Payne, Sheila; Dowrick, Christopher

2010-03-01

Biographical accounts of illness offer useful insights into the social and adaptive processes of living with chronic illness. Yet there are concerns that the underlying theoretical assumptions of a reflexive self seeking to maintain meaning may not reflect the lived experience of individuals. A narrative emphasis may neglect the importance of emotional/felt experiences; while an analytical focus on disruptive processes may not adequately reflect the totality of actual events. In this study, we explored how well biographical theory supports understanding of individual lived experience. Narratives from 19 individuals identified from General Practice lists with a terminal diagnosis of cancer were analysed using the holistic-form approach described by Lieblich. Participants described an ongoing process of living their life, 'managing' disruptive events and maintaining an overall sense of well-being (narrative form = biographical flow). For a minority, continuity was lost when people's capacity to continue living their everyday lives was overwhelmed (narrative form = fracture). The identified emphasis was on individual creative capacity in the face of terminal illness, highlighting the importance of embodied experience in understanding outcome and need. Maintaining continuity was draining: exhaustion precipitated fracture and thus need for external help to restore continuity. By focusing on feelings associated with overall narrative form, rather than individual disruptive events, we highlight the context in which disruptive events are experienced, and individual perceptions of their relative importance. We conclude that combining narrative and emotion offers new insights into the value of understanding of biographical accounts of illness in the context of individual creative capacity. We discuss the possibilities for new approaches to clinical assessment and management of need.

Death Education and Attitudes toward Euthanasia and Terminal Illness.

ERIC Educational Resources Information Center

Nagi, Mostafa H.; Lazerine, Neil G.

1982-01-01

Analyzed attitudes of 614 Protestant and Catholic Cleveland clergy toward terminal illness and euthanasia. Clergy responses revealed that, although eager to prolong life, terminally ill patients feared prolonged illness more than death. The controversial nature of euthanasia became more apparent with clergy who had more training in death…

[Anesthetic care for fibrobronchoscopy in patients with chronic terminal respiratory insufficiency undergoing evaluation for isolated lung transplantation].

PubMed

Solca, M; Elena, A; Croci, M; Damia, G

1993-01-01

During the first 18 month operation of the isolated lung transplantation program at or Institution, eight patients with terminal chronic respiratory failure underwent fiberoptic bronchoscopy and broncho-alveolar lavage as part of their evaluation for isolated lung transplantation. Four patients had severe obstructive, three restrictive, and one mixed, obstructive and restrictive, disease; all of them were on continuous supplemental oxygen. Procedures were performed under topical anaesthesia, with either light sedation or simple monitored anaesthesia care. Monitoring included non-invasive blood pressure measurement, pulse oximeter and precordial stethoscope. No adverse events were recorded, except in one case, when pulse oximeter reading precipitously dropped below 80%, to a minimum of 68-69%. The procedures was terminated short of its completion, and the patient was briefly assisted with manual bag ventilation on oxygen 100%. Pulse oximeter quickly returned to normal levels (above 90%), and the patient promptly recovered, without complications. The importance of monitored anaesthesia care during fiberoptic bronchoscopy (a usually benign procedure) in critically ill patients is greatly emphasized.

The dynamics of utilization review: a case study of 44 Massachusetts hospitals.

PubMed

Gertman, P M; Egdahl, R E

1978-10-01

Utilization review programs have existed on a national basis for over a decade, but relatively little is known about the patients who are scrutinized and what actions are taken to correct unnecessary use. In the fall of 1976, 44 of the 122 Massachusetts hospitals participated in a two-week in depth study of their utilization review activities. Over 22,000 admission and extended stay reviews were performed during this time period, and of these, 2,120 patients' continued stays in the hospital were questioned. In five admission review cases and 79 extended stay review cases, the UR committee formally terminated continued health insurance benefits, and in 12 admission reviews and 74 extended stay reviews, questioning by the UR committee led the attending physician to discharge the patient earlier than would have otherwise occurred. Ninety-four percent of the terminations occurred in Medicare patients and the median age of these patients exceeded 80 years. For medical patients, a disproportionate share of all those cases questioned and of those terminated occurred in chronic illness categories, such as cancer, heart failure, and organic brain syndromes. A higher than expected percentage of surgical cases questioned by the UR committee were in neurosurgical, cardiovascular and orthopedic procedure groups. The frequency with which UR committees identified and acted upon cases suggests that effective self-policing is occurring. A large portion of the utilization problem, however, may be related to the unavailability of appropriate sub-acute care for patients with chronic medical illness or surgical procedures which require long postoperative rehabilitation and recuperation.

Recent developments in the reform of English law on assisted suicide.

PubMed

Shaw, Julia J A

2009-12-01

Assisted suicide remains a deeply contested issue in the U.K. Recently three Assisted Dying for the Terminally Ill Bills were introduced in a three year period, all of which failed. Despite the provision of clear and precise safeguards, at each reading the House of Lords fixed largely on the traditional slippery slope and sanctity of life positions; a disproportionate reliance on theological determinism in particular prevented informed rational debate. People are living longer often with chronic, incurable diseases and palliative care is frequently of poor quality or even unavailable in the U.K. and it is unacceptable that individuals 'suffering unbearably' in their final days have no available domestic alternative. Yet the courts have consistently declined to prosecute in cases where friends and relatives have accompanied terminally ill persons abroad to die, against the provisions of the 1961 Suicide Act s2(1). This article critically assesses recent developments in English law on assisted dying and considers the implications for a more inclusive and reasoned debate in the future.

Suicide and Terminal Illness.

ERIC Educational Resources Information Center

Marzuk, Peter M.

1994-01-01

Reviews epidemiology of suicide among terminally ill. Discusses clinical assessment and management of suicidal terminally ill, emphasizing differences from evaluation and treatment of other suicidal individuals. Focuses on methodological issues inherent in studying treatment and characteristics of this population. Suggests blurring of line between…

Nicole: Suicide and Terminal Illness.

ERIC Educational Resources Information Center

Saunders, Judith M.; And Others

1993-01-01

Presents case summary of 58-year-old woman, terminally ill with cancer, who is contemplating suicide. Includes comments from Kjell Rudestam from the Fielding Institute and from Margaret Battin from the University of Utah who debate appropriate responses to people who contemplate suicide because of terminal illness. (NB)

Rational Suicide and the Crisis of Terminal Illness.

ERIC Educational Resources Information Center

Lokhandwala, Tasneem M.; Westefeld, John S.

1998-01-01

Whether or not suicide may be considered a rational choice for clients with terminal illness is controversial. Rational suicide and the literature and statistics pertaining to suicide and terminal illness are reviewed. Implications of accepting rational suicide as a treatment option, including moral and ethical issues, are addressed. (Author/EMK)

The Chronically Ill Child in the School.

ERIC Educational Resources Information Center

Sexson, Sandra; Madan-Swain, Avi

1995-01-01

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

The impact of awareness of terminal illness on quality of death and care decision making: a prospective nationwide survey of bereaved family members of advanced cancer patients.

PubMed

Ahn, Eunmi; Shin, Dong Wook; Choi, Jin Young; Kang, Jina; Kim, Dae Kyun; Kim, Hyesuk; Lee, Eunil; Hwang, Kwan Ok; Oh, Bumjo; Cho, BeLong

2013-12-01

We aimed to assess whether awareness of a terminal illness can affect care decision making processes and the achievement of a good death in advanced cancer patients receiving palliative care services. Awareness of terminal illness at the time of palliative care service admission was assessed by the health care professionals during the routine initial comprehensive assessment process and was recorded in the national terminal cancer patient registry. A follow-up nationwide bereavement survey was conducted, which contained questions regarding decision making processes and the Korean version of the Good Death Inventory. Among the 345 patients included in the final analysis, the majority (68.4%) of the patients were aware of the terminal illness. Awareness of the terminal illness tended to reduce discordances in care decision making (adjusted odds ratio = 0.55; 95% CI: 0.29-1.07), and increased the patients' own decision making when there were discordances between patients and their families (adjusted odds ratio = 3.79; 95% CI: 1.31-10.94). The Good Death Inventory score was significantly higher among patients who were aware of their terminal illnesses compared with those who were not (5.04 vs. 4.80; p = 0.013) and especially in the domains of 'control over the future' (5.18 vs. 4.04; p < 0.001), 'maintaining hope and pleasure' (4.55 vs. 3.92; p = 0.002), and 'unawareness of death' (4.41 vs. 4.26; p = 0.024). Awareness of the terminal illness had beneficial effect on the harmonious decision making, patient autonomy, and patient's quality of death. Disclosure of terminal illness should be encouraged. Copyright © 2013 John Wiley & Sons, Ltd.

Life threatening illness in popular movies-a first descriptive analysis.

PubMed

Drukarczyk, Laura; Klein, Carsten; Ostgathe, Christoph; Stiel, Stephanie

2014-01-01

In the last two decades, public attention towards illness, dying and death has evolved. In particular, advance care planning, living wills, end-of-life care, and autonomy are increasingly discussed. How this change in public awareness has influenced the presentation of dying and death in cinema needs clarification. Over a one year period, November 2011 until October 2012, a systematic search was conducted to identify movies dealing with incurable diseases produced in 1991-2010 35 movies could be identified and were analyzed in detail and investigated the presentation of illness and death. The number of movies focusing on terminal illness, dying, and death has increased since 1991. The total number of movies that made the yearly German Federal Film Board (FFA) hit list and included a focus on terminal illness, dying, and death increased from 1991 (1 movie) to 2011 (6 movies). The gender of the main characters suffering from terminal illness was distributed equally; three movies portrayed terminally ill children. More than one third of the terminally ill characters died in hospital. The terms "palliative" or "hospice care" were not mentioned once in any films. The number of movies dealing with terminal illness continues to increase and a considerable audience has shown interest in these films. Due to a limited true-to-life performance in the films, a presentation closer to reality could be a major public educational resource.

Caregiver Grief in Terminal Illness and Bereavement: A Mixed-Methods Study

ERIC Educational Resources Information Center

Waldrop, Deborah P.

2007-01-01

Caregivers experience multiple losses during the downhill trajectory of a loved one's terminal illness. Using mixed methods, this two-stage study explored caregiver grief during a terminal illness and after the care recipient's death. Caregiver grief was a state of heightened responsiveness during end-stage care: anxiety, hostility, depression,…

Preparation for Counseling Adults with Terminal Illness: Personal and Professional Parallels

ERIC Educational Resources Information Center

Manis, Amie A.; Bodenhorn, Nancy

2006-01-01

This article presents a review of the literature on counseling adults with terminal illness, particularly the literature on the nature of preparation that counselors and other professionals who attend to the needs of adults with a terminal illness require. The authors review information and findings from philosophical, psychological, practical,…

The right to information for the terminally ill patient.

PubMed Central

Osuna, E; Pérez-Cárceles, M D; Esteban, M A; Luna, A

1998-01-01

OBJECTIVES: To analyse the attitudes of medical personnel towards terminally ill patients and their right to be fully informed. DESIGN: Self-administered questionnaire composed of 56 closed questions. SETTING: Three general hospitals and eleven health centres in Granada (Spain). The sample comprised 168 doctors and 207 nurses. RESULTS: A high percentage of medical personnel (24.1%) do not think that informing the terminally ill would help them face their illness with greater serenity. Eighty-four per cent think the patient's own home is the best place to die: 8.9% of the subjects questioned state that the would not like to be informed of an incurable illness. CONCLUSION: In our opinion any information given should depend on the patient's personality, the stage of the illness and family circumstances. Our study confirms that a hospital is not the ideal environment for attending to the needs of the terminally ill and their families. PMID:9602997

TERMINAL ILLNESS IN AN INDIAN SETTING: PROBLEMS OF COMMUNICATION

PubMed Central

Khanna, R.; Singh, R.P.N.

1988-01-01

SUMMARY A study of 50 terminally ill cancer patients revealed that 52% were uninformed regarding their diagnosis and prognosis. In almost all cases the relatives had been adequately informed. No less than 82% of the terminally ill patients showed an awareness of the fatal prognosis. Most of the patients found the communication with the doctor and the relatives as unsatisfactory. Comparing this group with another group of non-terminal medically ill patients showed striking differences between the two groups. The findings are compared with those reported from the West and the implications of the above observations discussed. PMID:21927320

[Should assistance to suicide be allowed in a case of chronic persistent depression in a nursing home patient].

PubMed

Wettstein, A

2010-05-12

A 75 years old widower suffered since 26 years of many episodes of recurrent depressions. A compensated diabetes and a chronic, slowly progressive sensory-motor Neuropathy are relevant somatic comorbidities. Because of anxiety attacks complicating his progressively severe depression he could not be cared adequately in the old people home he lived in and was hospitalised. The anxiety responded well to Benzodiazepines, but the severe depression persisted despite a pharmacotherapy with Lithium, Mianserin and Citalopran. He was therefore transferred into a nursing home. There he demanded - supported by his son - an assisted suicide. 2 psychiatrists judged his wish to die as independent to his actual depression, a geronto-psychiatrist judged his suicidal ideas as a typical symptom of depression. Therefore the demanded assisted suicide was not allowed in the nursing home according to communal legal rules not allowing assisted suicide of persons with psychiatric illness in communal institutions. A hospitalisation against his own and his son's will was however not done and the assisted suicide was executed in privacy. This in Switzerland is legal even in cases of severe chronic psychiatric illness without a terminal disease.

The Stigma of Dying: Attitudes Toward the Terminally Ill

ERIC Educational Resources Information Center

Epley, Rita J.; McCaghy, Charles H.

1978-01-01

Using a range of semantic differential adjectives, 233 college students indicated attitudes toward young and old people who were healthy, ill, or terminally ill. Attitudes toward each state of health category separate into three factors: attitudes toward healthy, ill, and dying persons. (Author)

Finding Boundaries Inside Prison Walls: Case Study of a Terminally Ill Inmate

ERIC Educational Resources Information Center

O'Connor, Mary-Frances

2004-01-01

The number of terminally ill prison inmates rises each year. Mental health professionals are uniquely prepared to provide therapy during the end-of-life process with their assessment, training, empathy, and communication skills. This case study examines the six-month therapy of one terminally ill inmate, using a client-centered approach. Drawing…

26 CFR 25.7520-3 - Limitation on the application of section 7520.

Code of Federal Regulations, 2013 CFR

2013-04-01

... are illustrated by the following example: Example. Terminal illness. The donor transfers property... have an incurable illness or other deteriorating physical condition is considered terminally ill if.... The donor is age 75 but has been diagnosed with an incurable illness and has at least a 50 percent...

26 CFR 25.7520-3 - Limitation on the application of section 7520.

Code of Federal Regulations, 2012 CFR

2012-04-01

... are illustrated by the following example: Example. Terminal illness. The donor transfers property... have an incurable illness or other deteriorating physical condition is considered terminally ill if.... The donor is age 75 but has been diagnosed with an incurable illness and has at least a 50 percent...

26 CFR 25.7520-3 - Limitation on the application of section 7520.

Code of Federal Regulations, 2014 CFR

2014-04-01

... are illustrated by the following example: Example. Terminal illness. The donor transfers property... have an incurable illness or other deteriorating physical condition is considered terminally ill if.... The donor is age 75 but has been diagnosed with an incurable illness and has at least a 50 percent...

Pediatric Critical Care Transport as a Conduit to Terminal Extubation at Home: A Case Series.

PubMed

Noje, Corina; Bernier, Meghan L; Costabile, Philomena M; Klein, Bruce L; Kudchadkar, Sapna R

2017-01-01

To present our single-center's experience with three palliative critical care transports home from the PICU for terminal extubation. We performed a retrospective chart review of patients transported between January 1, 2012, and December 31, 2014. All cases were identified from our institutional pediatric transport database. Patients were terminally ill children unable to separate from mechanical ventilation in the PICU, who were transported home for terminal extubation and end-of-life care according to their families' wishes. Patients underwent palliative care transport home for terminal extubation. The rate of palliative care transports home for terminal extubation during the study period was 2.6 per 100 deaths. The patients were 7 months, 6 years, and 18 years old and had complex chronic conditions. The transfer process was protocolized. The families were approached by the PICU staff during multidisciplinary goals-of-care meetings. Parental expectations were clarified, and home hospice care was arranged pretransfer. All transports were performed by our pediatric critical care transport team, and all terminal extubations were performed by physicians. All patients had unstable medical conditions and urgent needs for transport to comply with the families' wishes for withdrawal of life support and death at home. As such, all three cases presented similar logistic challenges, including establishing do-not-resuscitate status pretransport, having limited time to organize the transport, and coordinating home palliative care services with available community resources. Although a relatively infrequent practice in pediatric critical care, transport home for terminal extubation represents a feasible alternative for families seeking out-of-hospital end-of-life care for their critically ill technology-dependent children. Our single-center experience supports the need for development of formal programs for end-of-life critical care transports to include patient screening tools, palliative care home discharge algorithms, transport protocols, and resource utilization and cost analyses.

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

PubMed

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

2013-01-01

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

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

PubMed

Sharpe, Donald; Rossiter, Lucille

2002-12-01

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

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

PubMed

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

2017-07-01

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

Disclosure of terminal illness to patients and families: diversity of governing codes in 14 Islamic countries.

PubMed

Abdulhameed, Hunida E; Hammami, Muhammad M; Mohamed, Elbushra A Hameed

2011-08-01

The consistency of codes governing disclosure of terminal illness to patients and families in Islamic countries has not been studied until now. To review available codes on disclosure of terminal illness in Islamic countries. DATA SOURCE AND EXTRACTION: Data were extracted through searches on Google and PubMed. Codes related to disclosure of terminal illness to patients or families were abstracted, and then classified independently by the three authors. Codes for 14 Islamic countries were located. Five codes were silent regarding informing the patient, seven allowed concealment, one mandated disclosure and one prohibited disclosure. Five codes were silent regarding informing the family, four allowed disclosure and five mandated/recommended disclosure. The Islamic Organization for Medical Sciences code was silent on both issues. Codes regarding disclosure of terminal illness to patients and families differed markedly among Islamic countries. They were silent in one-third of the codes, and tended to favour a paternalistic/utilitarian, family-centred approach over an autonomous, patient-centred approach.

Creating the final conversations scale: a measure of end-of-life relational communication with terminally ill individuals.

PubMed

Generous, Mark Alan; Keeley, Maureen P

2014-01-01

Final conversations (FCs) are defined as the communicative interactions, both verbal and nonverbal, that occur between terminally ill patients and relational partners. In this study, the "Final Conversations Scale" was developed and tested. A total of 152 participants that had engaged in final conversations with individuals that were terminally ill completed the newly developed instrument. Factor analysis produced a five-factor structure, including: messages of spirituality/religion; expressions of love; proactive difficult relationship talk; everyday communication; and talk about illness/death. Participants' perceptions of the relational closeness and difficulty with the deceased significantly influenced the individuals' recalled frequency of FCs messages. Practical and scholarly implications focus on the needs of the family members regarding their communication with terminally ill individuals, as well as directions for future research with the FCs Scale.

Terminal illness and access to Phase 1 experimental agents, surgeries and devices: reviewing the ethical arguments.

PubMed

Schüklenk, Udo; Lowry, Christopher

2009-01-01

The advent of AIDS brought about a group of patients unwilling to accept crucial aspects of the methodological standards for clinical research investigating Phase 1 drugs, surgeries or devices. Their arguments against placebo controls in trials, which depended--at the time--on the terminal status of patient volunteers led to a renewed discussion of the ethics of denying patients with catastrophic illnesses access to last-chance experimental drugs, surgeries or devices. Existing ethics and health policy literature on the topic of access to experimental drugs. The positions of those arguing for or against free access to experimental drugs for terminally ill patients are irreconcilable. At stake are questions about the kinds of personal sacrifices society can reasonably expect patients in clinical trials to make to ensure statistically predictive results. These would benefit by necessity a much larger number of current and future patients--the conflict is about individual versus public interests. It is also about the question of whether or not the state can legitimately prevent patients with terminal illnesses from unfettered access to experimental drugs, surgeries or devices in order to motivate them to participate in clinical trials. We review the ethical arguments for and against the provision of access to Phase 1 agents for terminally ill patients. Finding a compromise between providing free or no access to Phase 1 drugs for terminally ill patients. We ought to investigate means to increase access to experimental drugs for terminally ill patients without sacrificing necessary clinical trials' sounds scientific methods.

Just caring: health care rationing, terminal illness, and the medically least well off.

PubMed

Fleck, Leonard M

2011-01-01

What does it mean to be a "just" and "caring" society in meeting the health care needs of the terminally ill when we have only limited resources to meet virtually unlimited health care needs? That question is the focus of this essay. Put another way: relative to all the other health care needs in our society, especially the need for lifesaving or life-prolonging health care, how high a priority ought the health care needs of persons who are terminally ill have? On the one hand, we might see the terminally ill as being among the "medically least well off" and therefore deserving very high priority. On the other hand, we might see them as squandering vast medical resources for marginal medical benefits, thereby denying needed resources to others who would benefit much more. We begin the essay by making a number of morally relevant distinctions with regard to the category of "being terminally ill." We note, given contemporary medicine, that individuals may be terminally ill several times in the course of a life. Not all such circumstances make equal just claims to needed health care. We also note that our conceptions of health care justice are ultimately incapable of making very fine-grained, morally justified rationing judgments in complex medical circumstances. We conclude that we must finally rely upon fair processes of rational democratic deliberation to articulate such judgments for our own future, possibly terminally ill selves, thereby undercutting the rhetoric of "death panels." © 2011 American Society of Law, Medicine & Ethics, Inc.

Peace, Equanimity, and Acceptance in the Cancer Experience (PEACE): validation of a scale to assess acceptance and struggle with terminal illness.

PubMed

Mack, Jennifer W; Nilsson, Matthew; Balboni, Tracy; Friedlander, Robert J; Block, Susan D; Trice, Elizabeth; Prigerson, Holly G

2008-06-01

The role of emotional acceptance of a terminal illness in end-of-life (EOL) care is not known. The authors developed a measure of peaceful acceptance at the EOL, and evaluated the role of peaceful acceptance in EOL decision-making and care. The authors developed the Peace, Equanimity, and Acceptance in the Cancer Experience (PEACE) questionnaire to measure the extent to which patients with advanced cancer have a sense of peaceful acceptance of their terminal illness. The scale was administered to 160 patients with advanced cancer along with measures of other attributes that hypothetically are related to acceptance, including cognitive acceptance of terminal illness. EOL outcomes in 56 patients who died during the study also were examined. The 12-item PEACE questionnaire had 2 subscales: a 7-item Struggle With Illness subscale (Cronbach alpha = .81) and a 5-item Peaceful Acceptance subscale (alpha = .78). Both subscales were associated with patients' self-reported peacefulness (correlation coefficient [r] = 0.66 for acceptance [P <.0001]; r = -0.37 for struggle [P < .0001]). Struggle With Illness scores were associated with cognitive terminal illness acknowledgment (mean scores, 14.9 vs 12.4 for patients who were not aware that their illness was terminal; P = .001) and with some aspects of advance care planning (living will or healthcare proxy: mean scores, 13.9 vs 11.5; P = .02). In addition, among patients who had died, the use of a feeding tube at the EOL was associated inversely with Peaceful Acceptance (P = .015). The current study indicated that the PEACE questionnaire is a valid and reliable measure of peaceful acceptance and struggle with illness. Scores were associated with some choices for EOL care among patients with advanced cancer. (c) 2008 American Cancer Society.

Pediatric Critical Care Transport as a Conduit to Terminal Extubation at Home: A Case Series

PubMed Central

Noje, Corina; Bernier, Meghan L.; Costabile, Philomena M.; Klein, Bruce L.; Kudchadkar, Sapna R.

2016-01-01

Objective To present our single-center’s experience with three palliative critical care transports home from the pediatric intensive care unit (PICU) for terminal extubation. Design, Setting, Patients All cases were identified from our institutional Pediatric Transport database. Patients in the case series were terminally ill children unable to separate from mechanical ventilation in the PICU, who were transported home between January 1, 2012 and December 31, 2014 for terminal extubation and end-of-life care according to their families’ wishes. Interventions, Measurements, Main Results The rate of palliative care transports home for terminal extubation during the study period was 2.6 per 100 deaths. The patients were 7 months, 6 years, and 18 years old and had complex chronic conditions. The transfer process was protocolized. The families were approached by the PICU staff during multidisciplinary goals-of-care meetings. Parental expectations were clarified and home hospice care was arranged pre-transfer. All transports were performed by our pediatric critical care transport team, and all terminal extubations were performed by physicians. All patients had unstable medical conditions and urgent needs for transport to comply with the families’ wishes for withdrawal of life-support and death at home. As such, all three cases presented similar logistical challenges, including establishing do-not-resuscitate status pre-transport, having limited time to organize the transport, and coordinating home palliative care services with available community resources. Conclusions Though a relatively infrequent practice in pediatric critical care, transport home for terminal extubation represents a feasible alternative for families seeking out-of-hospital end-of-life care for their critically ill technology-dependent children. Our single-center experience supports the need for development of formal programs for end-of-life critical care transports to include patient screening tools, palliative care home discharge algorithms, transport protocols, and resource utilization and cost analyses. PMID:27801708

Shelter-based palliative care for the homeless terminally ill.

PubMed

Podymow, Tiina; Turnbull, Jeffrey; Coyle, Doug

2006-03-01

The homeless have high rates of mortality, but live in environments not conducive to terminal care. Traditional palliative care hospitals may be reluctant to accept such patients, due to behavior or lifestyle concerns. The Ottawa Inner City Health Project (OICHP) is a pilot study to improve health care delivery to homeless adults. This is a retrospective analysis of a cohort of terminally ill homeless individuals and the effectiveness of shelter-based palliative care. As proof of principle, a cost comparison was performed. 28 consecutive homeless terminally ill patients were admitted and died at a shelter-based palliative care hospice. Demographics, diagnoses at admission and course were recorded. Burden of illness was assessed by medical and psychiatric diagnoses, addictions, Karnofsky scale and symptom management. An expert panel was convened to identify alternate care locations. Using standard costing scales, direct versus alternate care costs were compared. 28 patients had a mean age 49 years; average length of stay 120 days. DIAGNOSES: liver disease 43%, HIV/AIDS 25%, malignancy 25% and other 8%. Addiction to drugs or alcohol and mental illness in 82% of patients. Karnofsky performance score mean 40 +/- 16.8. Pain management with continuous opiates in 71%. The majority reunited with family. Compared to alternate care locations, the hospice projected 1.39 million dollars savings for the patients described. The homeless terminally ill have a heavy burden of disease including physical illness, psychiatric conditions and addictions. Shelter-based palliative care can provide effective end-of-life care to terminally ill homeless individuals at potentially substantial cost savings.

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

PubMed

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

2016-04-01

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

Effects of a physician-led home care team on terminal care.

PubMed

Zimmer, J G; Groth-Juncker, A; McCusker, J

1984-04-01

Inconsistent results in studies of cost-effectiveness of home health care have led to the need for identification of target populations for whom cost-savings can be anticipated if expanded home care programs are introduced. This analysis of results of a randomized controlled study of efficacy of a physician/geriatric nurse practitioner/social worker home care team identifies such a potential target population. The team provides round-the-clock on-call medical services in the home when needed, in addition to usual nursing and other home care services, to home-bound chronically or terminally ill elderly patients. Overall health services utilization and estimated costs were not substantially different for the patients who did not die while in the study; however, for those who did die, team patients had considerably lower rates of hospitalization and overall cost than controls, and more frequently died at home. Of 21 team and 12 control patients who died but had at least two weeks of utilization experience in the study, team patients had about half the number of hospital days compared with controls during the terminal two weeks, and although they had more home care services, had only 69 per cent of the estimated total health care costs of the controls. Satisfaction with care received was significantly greater among the total group of team patients, and especially among their family caretakers, than among controls. This model is effective in providing appropriate medical care for seriously ill and terminal patients, and in enabling them to die at home if they so wish, while at the same time reducing costs of care during the terminal period.

Dying with Dignity: Difficult Times, Difficult Choices. A Report Presented by the Chairman of the Select Committee on Aging. House of Representatives, Ninety-Ninth Congress, First Session.

ERIC Educational Resources Information Center

Congress of the U.S., Washington, DC. House Select Committee on Aging.

This report from the Select Committee on Aging examines financial, medical, and social issues surrounding terminally ill patients with special emphasis on the elderly terminally ill. The first section discusses topics related to the medical treatment of the terminally ill. Two basic issues are important: the right to have medical treatment and the…

Chronically Ill Children in America: Background and Recommendations.

ERIC Educational Resources Information Center

Hobbs, Nicholas; And Others

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

South African adolescents with cystic fibrosis: a qualitative exploration of their bio-psychosocial fields.

PubMed

Hugo, Carina Jacobie; van der Merwe, Mariette

2014-01-01

This qualitative case study explored risk factors and protective factors in the bio-psychosocial fields of adolescents living with cystic fibrosis (CF). Semi-structured interviews were conducted with adolescents in the middle and late adolescent years (15-22 years) who had the defining characteristics of CF and were living in Gauteng province. Themes emerged from individual interviews. The fundamental human need to be understood and to understand was negatively affected as the illness affected socialisation and learning. Participants experienced an array of emotions including loss and bereavement linked to their illness and when friends with CF died. Constructive internal dialogue and positive thinking emerged as protective variables. Participants generally showed awareness of how they regulated their contact with the illness and how they self-regulate. Despite the severity of their symptoms and the taxing demands of managing CF, participants expressed hope for the future and could find some meaning in the illness. Adolescents with CF who participated in this study indicated that they felt different from their peers. Apart from the general developmental tasks typical to adolescence they faced the challenge of managing a severe chronic and potentially terminal illness.

Cortical Deficits of Glutamic Acid Decarboxylase 67 Expression in Schizophrenia: Clinical, Protein, and Cell Type-Specific Features

PubMed Central

Curley, Allison A.; Arion, Dominique; Volk, David W.; Asafu-Adjei, Josephine K.; Sampson, Allan R.; Fish, Kenneth N.; Lewis, David A.

2012-01-01

Objective Cognitive deficits in schizophrenia are associated with altered activity of the dorsolateral prefrontal cortex, which has been attributed to lower expression of the 67 kDa isoform of glutamic acid decarboxylase (GAD67), the major γ-aminobutyric acid (GABA)-synthesizing enzyme. However, little is know n about the relationship of prefrontal GAD67 m RNA levels and illness severity, translation of the transcript into protein, and protein levels in axon terminals, the key site of GABA production and function. Method Quantitative polymerase chain reaction was used to measure GAD67 m RNA levels in postmortem specimens of dorsolateral prefrontal cortex from subjects with schizophrenia and matched comparison subjects with no know n history of psychiatric or neurological disorders (N=42 pairs). In a subset of this cohort in which potential confounds of protein measures were controlled (N=19 pairs), Western blotting was used to quantify tissue levels of GAD67 protein in tissue. In five of these pairs, multilabel confocalimm unofluorescence was used to quantify GAD67 protein levels in the axon terminals of parvalbumin-containing GABA neurons, which are know n to have low levels of GAD67 m RNA in schizophrenia. Results GAD67 m RNA levels were significantly lower in schizophrenia subjects (by 15%), but transcript levels were not associated with predictors or measures of illness severity or chronicity. In schizophrenia subjects, GAD67 protein levels were significantly lower in total gray matter (by 10%) and in parvalbumin axon terminals (by 49%). Conclusions The findings that lower GAD67 m RNA expression is com m on in schizophrenia, that it is not a consequence of having the illness, and that it leads to less translation of the protein, especially in the axon terminals of parvalbumin-containing neurons, support the hypothesis that lower GABA synthesis in parvalbumin neurons contributes to dorsolateral prefrontal cortex dysfunction and impaired cognition in schizophrenia. PMID:21632647

Cortical deficits of glutamic acid decarboxylase 67 expression in schizophrenia: clinical, protein, and cell type-specific features.

PubMed

Curley, Allison A; Arion, Dominique; Volk, David W; Asafu-Adjei, Josephine K; Sampson, Allan R; Fish, Kenneth N; Lewis, David A

2011-09-01

Cognitive deficits in schizophrenia are associated with altered activity of the dorsolateral prefrontal cortex, which has been attributed to lower expression of the 67 kDa isoform of glutamic acid decarboxylase (GAD67), the major γ-aminobutyric acid (GABA)-synthesizing enzyme. However, little is known about the relationship of prefrontal GAD67 mRNA levels and illness severity, translation of the transcript into protein, and protein levels in axon terminals, the key site of GABA production and function. Quantitative polymerase chain reaction was used to measure GAD67 mRNA levels in postmortem specimens of dorsolateral prefrontal cortex from subjects with schizophrenia and matched comparison subjects with no known history of psychiatric or neurological disorders (N=42 pairs). In a subset of this cohort in which potential confounds of protein measures were controlled (N=19 pairs), Western blotting was used to quantify tissue levels of GAD67 protein in tissue. In five of these pairs, multilabel confocal immunofluorescence was used to quantify GAD67 protein levels in the axon terminals of parvalbumin-containing GABA neurons, which are known to have low levels of GAD67 mRNA in schizophrenia. GAD67 mRNA levels were significantly lower in schizophrenia subjects (by 15%), but transcript levels were not associated with predictors or measures of illness severity or chronicity. In schizophrenia subjects, GAD67 protein levels were significantly lower in total gray matter (by 10%) and in parvalbumin axon terminals (by 49%). The findings that lower GAD67 mRNA expression is common in schizophrenia, that it is not a consequence of having the illness, and that it leads to less translation of the protein, especially in the axon terminals of parvalbumin-containing neurons, support the hypothesis that lower GABA synthesis in parvalbumin neurons contributes to dorsolateral prefrontal cortex dysfunction and impaired cognition in schizophrenia.

Psychiatric comorbidity among terminally ill patients in general practice in the Netherlands: a comparison between patients with cancer and heart failure.

PubMed

Ng, Chong Guan; Dijkstra, Ellen; Smeets, Hugo; Boks, Marco P M; de Wit, Niek J

2013-01-01

It is unclear whether psychiatric disorders are specifically related to the terminal phase of cancer, or independent of the underlying disease. To investigate the rate of psychiatric comorbidity and psychotropic drugs prescription in terminally ill patients in the GP setting, comparing both patients with terminal cancer and heart failure. Retrospective cohort study using the Utrecht General Practitioner Research Network. Equally-sized groups of patients with terminal cancer and heart failure were randomly selected from the database of four general practices over the years 2005-2009. Psychiatric comorbidities were determined using the International Classification for Primary Care (ICPC) codes and psychotropic drugs prescriptions using the Anatomical Therapeutic Chemical (ATC) Classification System codes. A total of 191 terminally ill patients were included in the study (111 with cancer and 80 with heart failure). The mean age for patients with terminal cancer (70.8 years, standard deviation [SD] = 12.8) was 15 years younger than that of patients with heart failure (85.6 years, SD = 9.2). Half of the terminally ill patients (50.3 %) were prescribed psychotropics, but only 13.6% of them had obtained a psychiatric diagnosis. There were no significant differences in prevalence of psychiatric disease and psychotropic drug prescription between patients with terminal cancer and heart failure. The results demonstrate a high use of psychotropic drugs in terminally ill patients, often in the absence of a formal diagnosis of a psychiatric disorder. The absence of differences between patients with cancer and heart failure suggests that psychiatric diagnoses and increased psychotropic prescriptions are primarily related to the terminal stage of the disease and not to the background of cancer or heart failure.

Development and psychometric evaluation of the Chronic Illness Anticipated Stigma Scale

PubMed Central

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

2015-01-01

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

THE ADOPTION OF BUDDHISM'S PRINCIPLES AS A MEANS OF IMPROVING PHYSICIANS' WORK WITH TERMINALLY ILL PATIENTS.

PubMed

Wolf, Ruth

2014-10-01

The medical approach as summarized by Leibowitz--"We must treat the person, not just the disease"--highlights the importance of treating the sick person and not only the illness' pathology. This approach calls for healing not only the physical side, but also--and mainly--the mental aspect of the patient. One of the goals of this article is to turn physicians' attention towards the compassion necessary in treating a person with a severe or chronic illness, or a person who is dying--precisely because sometimes there is no medical cure for the physical state of such a patient. Therefore, physicians' attention does need to be directed to providing emotional assistance to such a patient. Sometimes, the emotional strength the patient draws from the medical team that is treating him can change his view of, and approach to, the illness, and can enable his body to muster the emotional strength necessary to deal with his situation. Buddhism's approach enables the sick patient to experience his illness in a different way, by making peace with one's situation and, sometimes, even viewing the situation differently--viewing the illness as a type of renewal. Buddhism, therefore, enables a sick person to choose a different point of view when his energy is exhausted and he loses hope, providing quality of life to patients. In such a situation, a sick person finds emotional strength in the knowledge that the end of his life is actually a renewal somewhere else. The limited life expectancy of the terminally ill patient demands that he be able to spend his time with minimal concerns and worries, and does not leave much time for treating the emotional side--the patient's fear. In light of this fact, the patient's ability to look ahead and grasp at hope is the most important issue. As much as possible, this is accomplished in an atmosphere of acceptance and with the absence, or reduction, of fear. The freedom to decide for oneself how to behave, according to one's own approach, is what makes it possible for the sick individual to feel empowered, and is liable to encourage the patient to adopt a different point of view. The Buddhist approach recommends replacing the helplessness that usually accompanies the predicament of terminally ill patients with acceptance of responsibility for their behavior in any given situation; this is Buddhism's main contribution to both physicians and patients alike.

Differences between terminally ill cancer patients who died after euthanasia had been performed and terminally ill cancer patients who did not request euthanasia.

PubMed

Georges, Jean-Jacques; Onwuteaka-Philipsen, Bregje D; van der Wal, Gerrit; van der Heide, Agnes; van der Maas, Paul J

2005-12-01

Palliative care, directed at improving the quality of life of terminally ill patients, is generally not aimed at any form of postponing or hastening death. It is possible that high quality palliative care could prevent requests for euthanasia. However, empirical evidence on this issue is scarce. In a national survey of end-of-life medical decisions in The Netherlands the subject of care at the end of life has been addressed. Data on terminally ill cancer patients who died after their request was granted and euthanasia had been performed were compared with those of terminally ill cancer patients who did not request euthanasia. The results show that the prevalence and severity of symptoms e.g., pain, feeling unwell, nausea, was higher in patients who died after their request was granted and euthanasia had been performed. No differences concerning the treatment of symptoms or the care provided were found between the two groups. The results suggest that the practice of euthanasia is mainly related to the patient's suffering.

Spirituality and Awareness of Diagnoses in Terminally Ill Patients With Cancer.

PubMed

Lai, Carlo; Luciani, Massimiliano; Galli, Federico; Morelli, Emanuela; Del Prete, Francesca; Ginobbi, Patrizia; Penco, Italo; Aceto, Paola; Lombardo, Luigi

2017-07-01

Aims of the present study were to investigate the association between awareness of own illness condition and psychological outcome in end-of-life phase and to test the association between the spirituality and the awareness of own illness condition. Three hundred and ninety-nine terminally ill patients with cancer were enrolled in a hospice in central Italy. One hundred patients satisfied the inclusion criteria. The Systems of Belief Inventory, the Hospital Anxiety and Depression Scale, and a psychological interview to determine the level of awareness of the illness diagnosis (aware; partially aware; and not aware) were administered to terminally ill patients. The main finding was that the awareness of one's own illness condition was positively associated with the extrinsic spirituality and negatively associated with intrinsic spirituality (regression model R = .26; R 2 = .07; adjusted R 2 = .05; F 2, 97 = 3.45; P = .036). The aware group showed lower anxiety and depression ( F 2, 97 = 1.9; P = . 075; F 2, 97 = 2.6; P = .04) scores than partially aware and not aware groups. The psychological outcome was not associated with the spirituality level. In terminally ill patients with cancer, the levels of depression and anxiety were lower in patients aware of their own illness state. Moreover, higher levels of extrinsic and lower levels of intrinsic spirituality predicted the awareness of one's own illness state.

Rough Set Theory based prognostication of life expectancy for terminally ill patients.

PubMed

Gil-Herrera, Eleazar; Yalcin, Ali; Tsalatsanis, Athanasios; Barnes, Laura E; Djulbegovic, Benjamin

2011-01-01

We present a novel knowledge discovery methodology that relies on Rough Set Theory to predict the life expectancy of terminally ill patients in an effort to improve the hospice referral process. Life expectancy prognostication is particularly valuable for terminally ill patients since it enables them and their families to initiate end-of-life discussions and choose the most desired management strategy for the remainder of their lives. We utilize retrospective data from 9105 patients to demonstrate the design and implementation details of a series of classifiers developed to identify potential hospice candidates. Preliminary results confirm the efficacy of the proposed methodology. We envision our work as a part of a comprehensive decision support system designed to assist terminally ill patients in making end-of-life care decisions.

The use of life review to enhance spiritual well-being in patients with terminal illnesses: An integrative review.

PubMed

Kwan, Cecilia W M; Ng, Marques S N; Chan, Carmen W H

2017-12-01

To conduct an integrative review of the current literature on using life review as an intervention to address the spiritual need of patients with terminal illnesses. Palliative care highlights the holistic approach of care including the spiritual aspect. Life review has been used in palliative nursing intending to enhance patients' emotional and spiritual well-being, and quality of life. However, there is a lack of publications that provide a structured overview on life review programmes and their effectiveness. Integrative review. The Whittemore and Knafl integrative review method was used. Five major online databases were included in our literature search. The keywords used were "life review" and "palliative care, terminal care, terminally ill, death & dying, hospice, spiritual wellbeing, spirituality". Seven primary papers were identified, critically appraised and synthesised in the final review. There are limited clinical studies on life review programmes for patients with terminal illness. The research design of these studies is too widely varied for meta-analysis. Here, we identified two major programmes of life review as an intervention to address the spiritual well-being of patients with terminal illness. However, repeated studies on the effectiveness of these two programmes are lacking. The shorter programme of life review is more likely to be applicable and effective for terminal patients. Further research in this area is required to provide strong evidence on the effectiveness and applicability of life review in patients receiving palliative care. This review adds weight to the need of a better understanding on the use of life review in addressing the spiritual needs of patients with terminal illness. Such understanding would provide evidence for the use of life review as an alternative approach in palliative care delivery. © 2017 John Wiley & Sons Ltd.

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

ERIC Educational Resources Information Center

Royster, Lynn; Marshall, Olena

2008-01-01

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

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

ERIC Educational Resources Information Center

Jackson, Megan

2013-01-01

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

26 CFR 1.7520-3 - Limitation on the application of section 7520.

Code of Federal Regulations, 2014 CFR

2014-04-01

... incurable illness or other deteriorating physical condition is considered terminally ill if there is at... factor would represent the right to receive $1.00 per year for a term of 25 years. Example 2. Terminal illness. The taxpayer transfers property worth $1,000,000 to a charitable remainder unitrust described in...

26 CFR 1.7520-3 - Limitation on the application of section 7520.

Code of Federal Regulations, 2012 CFR

2012-04-01

... incurable illness or other deteriorating physical condition is considered terminally ill if there is at... factor would represent the right to receive $1.00 per year for a term of 25 years. Example 2. Terminal illness. The taxpayer transfers property worth $1,000,000 to a charitable remainder unitrust described in...

26 CFR 1.7520-3 - Limitation on the application of section 7520.

Code of Federal Regulations, 2013 CFR

2013-04-01

... incurable illness or other deteriorating physical condition is considered terminally ill if there is at... factor would represent the right to receive $1.00 per year for a term of 25 years. Example 2. Terminal illness. The taxpayer transfers property worth $1,000,000 to a charitable remainder unitrust described in...

26 CFR 1.7520-3 - Limitation on the application of section 7520.

Code of Federal Regulations, 2011 CFR

2011-04-01

... incurable illness or other deteriorating physical condition is considered terminally ill if there is at... factor would represent the right to receive $1.00 per year for a term of 25 years. Example 2. Terminal illness. The taxpayer transfers property worth $1,000,000 to a charitable remainder unitrust described in...

Caring for teens with chronic illness: risky business?

PubMed

Louis-Jacques, Jennifer; Samples, Cathryn

2011-08-01

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

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

ERIC Educational Resources Information Center

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

2017-01-01

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

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

PubMed

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

2012-10-01

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

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

PubMed

Pinquart, M

2013-03-01

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

26 CFR 1.7520-2 - Valuation of charitable interests.

Code of Federal Regulations, 2010 CFR

2010-04-01

... measuring lives, a description of any relevant terminal illness condition of any measuring life, and (if applicable) an explanation of how any terminal illness condition was taken into account in valuing the...

26 CFR 25.7520-2 - Valuation of charitable interests.

Code of Federal Regulations, 2014 CFR

2014-04-01

... of any relevant terminal illness condition of any measuring life, and (if applicable) an explanation of how any terminal illness condition was taken into account in valuing the interest; and (v) A...

26 CFR 1.7520-2 - Valuation of charitable interests.

Code of Federal Regulations, 2013 CFR

2013-04-01

... measuring lives, a description of any relevant terminal illness condition of any measuring life, and (if applicable) an explanation of how any terminal illness condition was taken into account in valuing the...

26 CFR 1.7520-2 - Valuation of charitable interests.

Code of Federal Regulations, 2012 CFR

2012-04-01

... measuring lives, a description of any relevant terminal illness condition of any measuring life, and (if applicable) an explanation of how any terminal illness condition was taken into account in valuing the...

26 CFR 25.7520-2 - Valuation of charitable interests.

Code of Federal Regulations, 2010 CFR

2010-04-01

... of any relevant terminal illness condition of any measuring life, and (if applicable) an explanation of how any terminal illness condition was taken into account in valuing the interest; and (v) A...

26 CFR 1.7520-2 - Valuation of charitable interests.

Code of Federal Regulations, 2011 CFR

2011-04-01

... measuring lives, a description of any relevant terminal illness condition of any measuring life, and (if applicable) an explanation of how any terminal illness condition was taken into account in valuing the...

26 CFR 25.7520-2 - Valuation of charitable interests.

Code of Federal Regulations, 2011 CFR

2011-04-01

... of any relevant terminal illness condition of any measuring life, and (if applicable) an explanation of how any terminal illness condition was taken into account in valuing the interest; and (v) A...

26 CFR 1.7520-2 - Valuation of charitable interests.

Code of Federal Regulations, 2014 CFR

2014-04-01

... measuring lives, a description of any relevant terminal illness condition of any measuring life, and (if applicable) an explanation of how any terminal illness condition was taken into account in valuing the...

26 CFR 25.7520-2 - Valuation of charitable interests.

Code of Federal Regulations, 2013 CFR

2013-04-01

... of any relevant terminal illness condition of any measuring life, and (if applicable) an explanation of how any terminal illness condition was taken into account in valuing the interest; and (v) A...

26 CFR 25.7520-2 - Valuation of charitable interests.

Code of Federal Regulations, 2012 CFR

2012-04-01

... of any relevant terminal illness condition of any measuring life, and (if applicable) an explanation of how any terminal illness condition was taken into account in valuing the interest; and (v) A...

Continuous subcutaneous infusion of compound oxycodone for the relief of dyspnea in patients with terminally ill cancer: a retrospective study.

PubMed

Kawabata, Masahiro; Kaneishi, Keisuke

2013-05-01

Pain and dyspnea are the most prevalent and distressing symptoms in patients with terminally ill cancer. Evidences have accumulated for the effects of morphine on dyspnea, whereas little is known about the effects of oxycodone on dyspnea. We investigated the effectiveness of oxycodone for dyspnea in patients with terminally ill cancer. The injectable form of compound oxycodone (iOC) containing hydrocotarnine was administered continuously via subcutaneous route. We administered iOC to 136 patients. The effect on dyspnea was less conspicuous than pain, yet iOC was effective for dyspnea with varying degrees. None of the adverse effects observed were serious. These results suggest that continuous subcutaneous administration of oxycodone could be one of the reasonable alternatives in the management of dyspnea in patients with terminally ill cancer.

Loneliness and Quality of Life in Chronically Ill Rural Older Adults

PubMed Central

Theeke, Laurie A.; Mallow, Jennifer

2015-01-01

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

Assessing Hopelessness in Terminally Ill Cancer Patients: Development of the Hopelessness Assessment in Illness Questionnaire

ERIC Educational Resources Information Center

Rosenfeld, Barry; Pessin, Hayley; Lewis, Charles; Abbey, Jennifer; Olden, Megan; Sachs, Emily; Amakawa, Lia; Kolva, Elissa; Brescia, Robert; Breitbart, William

2011-01-01

Hopelessness has become an increasingly important construct in palliative care research, yet concerns exist regarding the utility of existing measures when applied to patients with a terminal illness. This article describes a series of studies focused on the exploration, development, and analysis of a measure of hopelessness specifically intended…

Hope in terminal illness: an evolutionary concept analysis.

PubMed

Johnson, Sarah

2007-09-01

to clarify the concept of hope as perceived by patients with a terminal illness, to develop hope as an evidence-based nursing concept, to contribute new knowledge and insights about hope to the relatively new field of palliative care; endeavouring to maximize the quality of life of terminally ill patients in the future. utilizing Rodgers' (2000a) evolutionary concept analysis methodology and thematic content analysis, 17 pieces of research-based literature on hope as perceived by adult patients with any terminal illness pathology, from the disciplines of nursing and medicine have been reviewed and analyzed. An exemplary case of the concept in action is presented along with the evolution of the concept hope in terminal illness. Ten essential attributes of the concept were identified: positive expectation; personal qualities; spirituality; goals; comfort; help/caring; interpersonal relationships; control; legacy; and life review. Patients' hopes and goals are scaled down and refocused in order to live in the present and enjoy the time they have left with loved ones. By completing all the steps to Rodgers' (2000a) evolutionary view of concept analysis, a working definition and clarification of the concept in its current use has been achieved. This provides a solid conceptual foundation for further study.

Talking with a child about a parent's terminal illness

MedlinePlus

... gov/ency/patientinstructions/000848.htm Talking with a child about a parent's terminal illness To use the ... your child's anxiety. How to Talk to Your Child You may wonder when it is the right ...

26 CFR 20.7520-2 - Valuation of charitable interests.

Code of Federal Regulations, 2012 CFR

2012-04-01

... terminal illness condition of any measuring life, and (if applicable) an explanation of how any terminal illness condition was taken into account in valuing the interest; and (v) A computation of the deduction...

26 CFR 20.7520-2 - Valuation of charitable interests.

Code of Federal Regulations, 2014 CFR

2014-04-01

... terminal illness condition of any measuring life, and (if applicable) an explanation of how any terminal illness condition was taken into account in valuing the interest; and (v) A computation of the deduction...

26 CFR 20.7520-2 - Valuation of charitable interests.

Code of Federal Regulations, 2010 CFR

2010-04-01

... terminal illness condition of any measuring life, and (if applicable) an explanation of how any terminal illness condition was taken into account in valuing the interest; and (v) A computation of the deduction...

26 CFR 20.7520-2 - Valuation of charitable interests.

Code of Federal Regulations, 2013 CFR

2013-04-01

... terminal illness condition of any measuring life, and (if applicable) an explanation of how any terminal illness condition was taken into account in valuing the interest; and (v) A computation of the deduction...

26 CFR 20.7520-2 - Valuation of charitable interests.

Code of Federal Regulations, 2011 CFR

2011-04-01

... terminal illness condition of any measuring life, and (if applicable) an explanation of how any terminal illness condition was taken into account in valuing the interest; and (v) A computation of the deduction...

Do Incarcerated Offenders Experience the Five Stages of Grief as Do Terminally Ill Patients?

ERIC Educational Resources Information Center

Pledger, Carolyn Brastow

1985-01-01

Examines Kubler-Ross' five stages of grief (denial, anger, bargaining, depression, acceptance) as they are experienced not by terminally ill persons, but by 20 criminal offenders and their families during incarceration. Concludes that shock of arrest and incarceration stimulates reactions similar to those of persons coping with terminal diagnosis.…

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

PubMed

Lehoux, Pascale

2008-06-01

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

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

PubMed

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

2011-03-01

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

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

ERIC Educational Resources Information Center

Burns, Margaret A.

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

Cultural expressions of bodily awareness among chronically ill Filipino Americans.

PubMed

Becker, Gay

2003-01-01

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

Experiences and attitudes of patients with terminal cancer and their family caregivers toward the disclosure of terminal illness.

PubMed

Yun, Young Ho; Kwon, Yong Chol; Lee, Myung Kyung; Lee, Woo Jin; Jung, Kyung Hae; Do, Young Rok; Kim, Samyong; Heo, Dae Seog; Choi, Jong Soo; Park, Sang Yoon

2010-04-10

PURPOSE We investigated the experiences of cancer patients and their family caregivers who became aware that the cancer was terminal, how they became aware, and how they felt about disclosure of the information. PATIENTS AND METHODS In this cohort study, we administered questionnaires to 619 consecutive patients determined by physicians to be terminally ill and to their family caregivers. RESULTS A total of 481 patients and 381 family caregivers completed the questionnaire. A majority of patients (58.0%) and caregivers (83.4%) were aware of the patient's terminal status. Approximately 28% of patients and 23% of caregivers reported that they guessed it from the patient's worsening condition. The patient group was more likely than the caregiver group (78.6% v 69.6%) to prefer that patients be informed of their terminal status. Patients informed of their terminal diagnosis had a significantly better quality of life and fewer symptoms and had a lower rate of emotional distress than patients who guessed it from their worsening condition. Younger patients and patients who paid the treatment costs themselves were significantly more likely to want to be told when their illness was terminal. If the patient paid the treatment cost and was employed at the time of the cancer diagnosis, the family caregivers were more likely to prefer disclosure of terminal illness. CONCLUSION Most patients with terminal cancer and their family caregivers preferred disclosure, and patients who knew of their terminal diagnosis had a lower rate of emotional distress and a higher health-related quality of life.

Parental Involvement of Mothers with Chronic Illness and Children's Academic Achievement

ERIC Educational Resources Information Center

Chen, Yung-Chi; Fish, Marian C.

2013-01-01

This study examined how maternal chronic illnesses may affect children's academic achievement through parental involvement. A total of 189 mothers diagnosed with chronic illnesses, such as multiple sclerosis, diabetes, cancer, HIV/AIDS, chronic pain, asthma, myelodysplasic syndrome, and fibromyalgia, and with a child in middle school or high…

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

PubMed

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

2018-05-25

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

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

PubMed

Becker, Gay; Newsom, Edwina

2005-07-01

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

Velcro on the slippery slope: the role of psychiatry in active voluntary euthanasia.

PubMed

Ryan, C J

1995-12-01

The aim of the paper is to determine the role that psychiatrists should play in legislation that establishes a right to active voluntary euthanasia (AVE). One version of the "slippery slope" argument, usually invoked against the legalisation of AVE, is recast as an argument for the introduction of strong safeguards in any future AVE legislation. The literature surrounding the prevalence of psychiatric illnesses in the terminally ill, physicians' ability to identify such illnesses and the aetiology of suicide in the terminally ill is examined. The strength of the slippery slope argument, combined with the poor ability of general physicians to diagnose psychiatric illness in the terminally ill, demands that any legislation allowing AVE should require a mandatory psychiatric review of the patient requesting euthanasia. Any legislation adopted that establishes a right to active voluntary euthanasia should include a mandatory psychiatric review of the person requesting euthanasia and a cooling off period before the request is acceded to. In addition, the discovery of a serious mental illness ought to disqualify the affected person from the right to AVE until that illness resolves.

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

PubMed

Karademas, Evangelos C

2010-03-01

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

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

PubMed

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

2014-06-01

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

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

PubMed Central

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

2015-01-01

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

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

PubMed

Han, Jina

2017-05-01

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

Terminal illness and the increased mortality risk of conventional antipsychotics in observational studies: a systematic review.

PubMed

Luijendijk, Hendrika J; de Bruin, Niels C; Hulshof, Tessa A; Koolman, Xander

2016-02-01

Numerous large observational studies have shown an increased risk of mortality in elderly users of conventional antipsychotics. Health authorities have warned against use of these drugs. However, terminal illness is a potentially strong confounder of the observational findings. So, the objective of this study was to systematically assess whether terminal illness may have biased the observational association between conventional antipsychotics and risk of mortality in elderly patients. Studies were searched in PubMed, CINAHL, Embase, the references of selected studies and articles referring to selected studies (Web of Science). Inclusion criteria were (i) observational studies that estimated (ii) the risk of all-cause mortality in (iii) new elderly users of (iv) conventional antipsychotics compared with atypical antipsychotics or no use. Two investigators assessed the characteristics of the exposure and reference groups, main results, measured confounders and methods used to adjust for unmeasured confounders. We identified 21 studies. All studies were based on administrative medical and pharmaceutical databases. Sicker and older patients received conventional antipsychotics more often than new antipsychotics. The risk of dying was especially high in the first month of use, and when haloperidol was administered per injection or in high doses. Terminal illness was not measured in any study. Instrumental variables that were used were also confounded by terminal illness. We conclude that terminal illness has not been adjusted for in observational studies that reported an increased risk of mortality risk in elderly users of conventional antipsychotics. As the validity of the evidence is questionable, so is the warning based on it. Copyright © 2015 John Wiley & Sons, Ltd.

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

PubMed

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

2001-09-01

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

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

PubMed

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

2017-12-01

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

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

PubMed Central

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

2012-01-01

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

Factors that influence advance directives completion amongst terminally ill patients at a tertiary hospital in Kenya.

PubMed

Omondi, Stephen; Weru, John; Shaikh, Asim Jamal; Yonga, Gerald

2017-01-25

An advance directive (AD) is a written or verbal document that legally stipulates a person's health care preference while they are competent to make decisions for themselves and is used to guide decisions on life-sustaining treatment in the event that they become incapacitated. AD can take the form of a living will, a limitation of care document, a do-not-resuscitate order, or an appointment of a surrogate by durable power of attorney. The completion rate of AD varies from region to region, and it is influenced by multiple factors. The objectives of this study were to determine the proportion of terminally ill patients with AD and to identify the factors that influence the completion of AD amongst terminally ill patients at a tertiary hospital in Kenya. The study was a retrospective survey. All available records of terminally ill patients seen at Aga Khan University Hospital, Nairobi, between July 2010 and December 2015, and that met the inclusion criteria were included in the study. In total, 216 records of terminally ill patients were analyzed: 89 records were of patients that had AD and 127 records were of patients that did not have AD. The proportion of terminally ill patients that had completed AD was 41.2%. The factors that were associated with the completion of AD on bivariate analysis were history of ICU admission, history of endotracheal intubation, functional status of the patient, the medical specialty taking care of the patient, patient's caregiver discussing the AD with the patient, and a palliative specialist review. On multivariate regression analysis, discussion of AD with a caregiver and patient's functional impairment were the factors with statistically significant association with completion of AD. The proportion of terminally ill patients that had AD in their medical records was significant. However, most terminally ill patients did not have AD. Our data, perhaps the first on the subject in East Africa, suggest that most of the factors associated with AD completion mirrored those seen in other regions of the world. Discussion between patient and their physician and patient's functional impairment were the factors independently associated with completion of AD. Therefore, physicians need to be aware of the importance of discussions of AD with their patients.

Peace, Equanimity, and Acceptance in the Cancer Experience (PEACE): Validation of a scale to assess acceptance and struggle with terminal illness

PubMed Central

Mack, Jennifer W.; Nilsson, Matthew; Balboni, Tracy; Friedlander, Robert J.; Block, Susan D.; Trice, Elizabeth; Prigerson, Holly G.

2013-01-01

Objectives The role of emotional acceptance of a terminal illness in end-of-life (EOL) care is not known. We developed a measure of peaceful acceptance at the EOL, and evaluated the role of peaceful acceptance in EOL decision-making and care. Methods We developed the Peace, Equanimity, and Acceptance in the Cancer Experience (PEACE) questionnaire to measure the extent to which patients with advanced cancer feel a sense of peaceful acceptance of their terminal illness. The scale was administered to 160 advanced cancer patients along with measures of other attributes hypothesized to be related to acceptance, including cognitive acceptance of terminal illness. EOL outcomes in 56 patients who died during the study were also examined. Results The 12-item PEACE questionnaire had two subscales: a 7-item Struggle with Illness (Cronbach's α =.81) and a 5-item Peaceful Acceptance (α = .78) subscale. Both subscales were associated with patients’ self-reported peacefulness (r=.66 for acceptance, P<.0001; r=−.37 for struggle, P<.0001.) Struggle with Illness scores were associated with cognitive terminal illness acknowledgement (mean scores 14.9 versus 12.4, P=.001) and some aspects of advance care planning (living will or health care proxy, mean scores 13.9 versus 11.5, P=.02). In addition, among patients who had died, use of a feeding tube at the EOL was inversely associated with Peaceful Acceptance (P=.015). Conclusion The PEACE questionnaire is a valid and reliable measure of Peaceful Acceptance and Struggle with Illness. Scores are associated with some choices for EOL care among patients with advanced cancer. PMID:18429006

Illness Identity in Adults with a Chronic Illness.

PubMed

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

2018-02-21

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

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

ERIC Educational Resources Information Center

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

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

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

PubMed

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

2012-01-01

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

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

PubMed

Årestedt, Liselott; Benzein, Eva; Persson, Carina

2015-05-01

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

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

PubMed

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

2011-08-01

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

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

PubMed Central

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

2012-01-01

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

Health Care Reform and Concurrent Curative Care for Terminally Ill Children: A Policy Analysis

PubMed Central

Lindley, Lisa C.

2012-01-01

Within the Patient Protection and Affordable Care Act of 2010 or health care reform, is a relatively small provision about concurrent curative care that significantly affects terminally ill children. Effective on March 23, 2010, terminally ill children, who are enrolled in a Medicaid or state Children’s Health Insurance Plans (CHIP) hospice benefit, may concurrently receive curative care related to their terminal health condition. The purpose of this article was to conduct a policy analysis of the concurrent curative care legislation by examining the intended goals of the policy to improve access to care and enhance quality of end of life care for terminally ill children. In addition, the policy analysis explored the political feasibility of implementing concurrent curative care at the state-level. Based on this policy analysis, the federal policy of concurrent curative care for children would generally achieve its intended goals. However, important policy omissions focus attention on the need for further federal end of life care legislation for children. These findings have implications nurses. PMID:22822304

Mesmer minus magic: hypnosis and modern medicine.

PubMed

Spiegel, David

2002-10-01

The implications and effects of the French commission that passed judgment on Mesmer's work is examined in light of the pioneering role of hypnosis as the first Western conception of a psychotherapy, the ancient philosophical debate between idealism and empiricism, and the conflict in modern medicine between biotechnological emphasis on cure and the need for care as many previously terminal illnesses are converted to chronic diseases. The panel's report is interpreted as negative about the literal theory of animal magnetism but actually supportive of the potential therapeutic power of suggestion and "positive thinking." This aspect of hypnosis is described as a forerunner of modern cognitive therapies of depression and other illnesses. The panel exerted a constructive effect in applying scientific method and rigorous evaluation to hypnotic treatment, an application of Enlightenment philosophy that presaged the Flexner era in modern medicine. Both hypnosis and medicine ultimately benefited.

Recognizing dying in terminal illness.

PubMed

Taylor, Paul M; Johnson, Miriam

2011-08-01

Recognizing dying in terminally ill patients is a complex clinical skill. This article outlines the approach to the decision, common difficulties encountered in patients with both malignant and non-malignant disease, and a simple approach to considering the question 'Is this patient dying?'

Islamic views on artificial nutrition and hydration in terminally ill patients.

PubMed

Alsolamy, Sami

2014-02-01

Withholding and withdrawing artificial nutrition and hydration from terminally ill patients poses many ethical challenges. The literature provides little information about the Islamic beliefs, attitudes, and laws related to these challenges. Artificial nutrition and hydration may be futile and reduce quality of life. They can also harm the terminally ill patient because of complications such as aspiration pneumonia, dyspnea, nausea, diarrhea, and hypervolemia. From the perspective of Islam, rules governing the care of terminally ill patients are derived from the principle that injury and harm should be prevented or avoided. The hastening of death by the withdrawal of food and drink is forbidden, but Islamic law permits the withdrawal of futile, death-delaying treatment, including life support. Nutritional support is considered basic care and not medical treatment, and there is an obligation to provide nutrition and hydration for the dying person unless it shortens life, causes more harm than benefit, or is contrary to an advance directive that is consistent with Islamic law. The decision about withholding or withdrawing artificial nutrition and hydration from the terminally ill Muslim patient is made with informed consent, considering the clinical context of minimizing harm to the patient, with input from the patient, family members, health care providers, and religious scholars. © 2012 John Wiley & Sons Ltd.

Pharmacokinetic considerations and recommendations in palliative care, with focus on morphine, midazolam and haloperidol.

PubMed

Franken, L G; de Winter, B C M; van Esch, H J; van Zuylen, L; Baar, F P M; Tibboel, D; Mathôt, R A A; van Gelder, T; Koch, B C P

2016-06-01

A variety of medications are used for symptom control in palliative care, such as morphine, midazolam and haloperidol. The pharmacokinetics of these drugs may be altered in these patients as a result of physiological changes that occur at the end stage of life. This review gives an overview of how the pharmacokinetics in terminally ill patients may differ from the average population and discusses the effect of terminal illness on each of the four pharmacokinetic processes absorption, distribution, metabolism, and elimination. Specific considerations are also given for three commonly prescribed drugs in palliative care: morphine, midazolam and haloperidol). The pharmacokinetics of drugs in terminally ill patients can be complex and limited evidence exists on guided drug use in this population. To improve the quality of life of these patients, more knowledge and more pharmacokinetic/pharmacodynamics studies in terminally ill patients are needed to develop individualised dosing guidelines. Until then knowledge of pharmacokinetics and the physiological changes that occur in the final days of life can provide a base for dosing adjustments that will improve the quality of life of terminally ill patients. As the interaction of drugs with the physiology of dying is complex, pharmacological treatment is probably best assessed in a multi-disciplinary setting and the advice of a pharmacist, or clinical pharmacologist, is highly recommended.

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

PubMed

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

2005-09-01

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

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

PubMed

Shen, Chan; Sambamoorthi, Usha; Rust, George

2008-06-01

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

Employment Barriers Among Welfare Recipients and Applicants With Chronically Ill Children

PubMed Central

Smith, Lauren A.; Romero, Diana; Wood, Pamela R.; Wampler, Nina S.; Chavkin, Wendy; Wise, Paul H.

2002-01-01

Objectives. This study evaluated the association of chronic child illness with parental employment among individuals who have had contact with the welfare system. Methods. Parents of children with chronic illnesses were interviewed. Results. Current and former welfare recipients and welfare applicants were more likely than those with no contact with the welfare system to report that their children’s illnesses adversely affected their employment. Logistic regression analyses showed that current and former receipt of welfare, pending welfare application, and high rates of child health care use were predictors of unemployment. Conclusions. Welfare recipients and applicants with chronically ill children face substantial barriers to employment, including high child health care use rates and missed work. The welfare reform reauthorization scheduled to occur later in 2002 should address the implications of chronic child illness for parental employment. PMID:12197972

Parent Preferences for Shared Decision-making in Acute Versus Chronic Illness.

PubMed

Tom, Dina M; Aquino, Christian; Arredondo, Anthony R; Foster, Byron A

2017-10-01

The goal of this study was to examine preferences for shared decision-making (SDM) in parents of acutely ill versus chronically ill children in the inpatient setting. Additionally, we explored the effect of parental perception of illness severity and uncertainty in illness on decision-making preference. In this cross-sectional study, we surveyed parents of children admitted to pediatric inpatient units at an academic, tertiary-care hospital. Surveys were administered in person and used validated tools to assess SDM preferences and uncertainty in illness. Descriptive statistics evaluated associations stratified by acute versus chronic illness, and multivariable analyses were performed. Of the 200 parents who participated, the majority were women (78%), Hispanic (81.5%), English speaking (73%), between 30 and 39 years old (37.5%), and had an education achievement of less than a college degree (77%). The mean age of hospitalized children was 8.1 years, and half reported a chronic illness. Most parents preferred an active (43%) or collaborative (40%) role in SDM. There was no association with SDM preference by demographics, number of previous hospitalizations, perception of illness severity, or uncertainty. However, parents of chronically ill children significantly preferred a passive role in SDM when they perceived a high level of uncertainty in illness. Most parents of hospitalized children prefer to take an active or collaborative role in SDM. However, parents of chronically ill children who perceive high levels of uncertainty surrounding their children's illness prefer a passive role, thus illustrating the complexity in decision-making among this parent population. Copyright © 2017 by the American Academy of Pediatrics.

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

PubMed Central

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

2017-01-01

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

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

ERIC Educational Resources Information Center

Revenson, Tracey A.; Felton, Barbara J.

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

Living with a chronic illness - reaching out to others

MedlinePlus

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

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

PubMed Central

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

2014-01-01

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

Dying and the Conspiracy of Denial

ERIC Educational Resources Information Center

Doherty, Gillian; Doherty, Joseph

1976-01-01

The first author presents her reviews on death based on her experiences as a nurse and a wife whose husband had a terminal illness. The second author presents a poem expressing his views on death while he was dying of a terminal illness. (HLM)

Common myths about caring for patients with terminal illness: opportunities to improve care in the hospital setting.

PubMed

Cherlin, Emily; Morris, Victor; Morris, Jensa; Johnson-Hurzeler, Rosemary; Sullivan, Gail M; Bradley, Elizabeth H

2007-11-01

Shortcomings in the quality of care of hospitalized patients at the end of life are well documented. Although hospitalists and residents are often involved in the care of hospitalized patients with terminal illness, little is known about their knowledge and beliefs concerning terminal illness, despite the importance of such physicians to the quality of care at the end of life. In 2006 we conducted an exploratory study at a large academic medical center to examine the knowledge, attitudes, and practices of hospitalists and residents (n = 52, response rate = 85.2%) about the care of terminally ill patients. Data were collected using a 22-item survey instrument adapted from previously published instruments. Several common myths about treating terminally ill patients were identified. These myths pertained to essential aspects of end-of-life care including pain and symptom control, indications for various medications, and eligibility for hospice. Physicians reported positive attitudes about hospice care as well as the belief that many patients who would benefit from hospice do not receive hospice at all or only late in the course of their illness. Our findings identified misunderstandings that hospitalists and residents commonly have, including about facts essential to know in order to provide appropriate pain and symptom management. Future interventions to improve knowledge need to focus on specific clinical knowledge about opioid therapy, as well as information about eligibility rules for hospice. (c) 2007 Society of Hospital Medicine.

Assessing Hopelessness in Terminally Ill Cancer Patients: Development of the Hopelessness Assessment in Illness Questionnaire

PubMed Central

Rosenfeld, Barry; Pessin, Hayley; Lewis, Charles; Abbey, Jennifer; Olden, Megan; Sachs, Emily; Amakawa, Lia; Kolva, Elissa; Brescia, Robert; Breitbart, William

2013-01-01

Hopelessness has become an increasingly important construct in palliative care research, yet concerns exist regarding the utility of existing measures when applied to patients with a terminal illness. This article describes a series of studies focused on the exploration, development, and analysis of a measure of hopelessness specifically intended for use with terminally ill cancer patients. The 1st stage of measure development involved interviews with 13 palliative care experts and 30 terminally ill patients. Qualitative analysis of the patient interviews culminated in the development of a set of potential questionnaire items. In the 2nd study phase, we evaluated these preliminary items with a sample of 314 participants, using item response theory and classical test theory to identify optimal items and response format. These analyses generated an 8-item measure that we tested in a final study phase, using a 3rd sample (n = 228) to assess reliability and concurrent validity. These analyses demonstrated strong support for the Hopelessness Assessment in Illness Questionnaire providing greater explanatory power than existing measures of hopelessness and found little evidence that this assessment was confounded by illness-related variables (e.g., prognosis). In summary, these 3 studies suggest that this brief measure of hopelessness is particularly useful for palliative care settings. Further research is needed to assess the applicability of the measure to other populations and contexts. PMID:21443366

Responding to Students' Chronic Illnesses

ERIC Educational Resources Information Center

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

2010-01-01

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

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

PubMed

Peck, Blake; Lillibridge, Jennifer

2005-03-01

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

Assessing the Decision-Making Capacity of Terminally Ill Patients with Cancer.

PubMed

Kolva, Elissa; Rosenfeld, Barry; Saracino, Rebecca

2018-05-01

Despite the clinical, ethical, and legal magnitude of end-of-life decision-making, the capacity of terminally ill patients to make the medical decisions they often face is largely unknown. In practice, clinicians are responsible for determining when their patients are no longer competent to make treatment decisions, yet the accuracy of these assessments is unclear. The purpose of this study was to explore decision-making capacity and its assessment in terminally ill cancer patients. Fifty-five patients with advanced cancer receiving inpatient palliative care and 50 healthy adults were administered the MacArthur Competence Assessment Tool for Treatment (MacCAT-T) to evaluate decision-making capacity with regard to the four most commonly used legal standards: Choice, Understanding, Appreciation, and Reasoning. Participants made a hypothetical treatment decision about whether to accept artificial nutrition and hydration for treatment of cachexia. Participants' physicians independently rated their decision-making capacity. Terminally ill participants were significantly more impaired than healthy adults on all MacCAT-T subscales. Most terminally ill participants were able to express a treatment choice (85.7%), but impairment was common on the Understanding (44.2%), Appreciation (49.0%), and Reasoning (85.4%) subscales. Agreement between physician-rated capacity and performance on the MacCAT-T subscales was poor. The use of the MacCAT-T revealed high rates of decisional impairment in terminally ill participants. Participants' physicians infrequently detected impairment identified by the MacCAT-T. The findings from the present study reinforce the need for engagement in advance care planning for patients with advanced cancer. Copyright © 2018 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.

Prevalence and content of written ethics policies on euthanasia in Catholic healthcare institutions in Belgium (Flanders).

PubMed

Gastmans, Chris; Lemiengre, Joke; van der Wal, Gerrit; Schotsmans, Paul; Dierckx de Casterlé, Bernadette

2006-04-01

Euthanasia is performed worldwide, regardless of the existence of laws governing it. Belgium became the second country in the world to enact a law on euthanasia in 2002. Healthcare institutions bear responsibility for guaranteeing the quality of care for patients at the end of life, and for ensuring support for caregivers involved. Therefore, institutional ethics policies on end-of-life decision-making, especially on euthanasia, may be useful. A cross-sectional mail survey of general directors of Catholic hospitals and nursing homes in Belgium was used to describe the prevalence and content of written ethics policies for competent terminally ill, incompetent terminally ill, and non-terminally ill patients. Of the 298 targeted institutions, 81% of hospitals and 62% of nursing homes returned complete questionnaires. Of these, 79% of hospitals and 30% of nursing homes had a written ethics policy on euthanasia. Of hospitals 83% and of nursing homes 85% permitted euthanasia for competent terminally ill patients only in exceptional cases in accordance with legal due care criteria and provisions outlined by the palliative filter procedure. Euthanasia for incompetent terminally ill patients was prohibited by 27% of the hospitals and by 60% of the nursing homes. For non-terminally ill patients, these figures were 43 and 64%, respectively. Catholic healthcare institutions in Belgium (Flanders) made great efforts to develop written ethics policies on euthanasia. Only a small group of institutions completely prohibited euthanasia. Most of the institutions considered euthanasia to be an option if all possible alternatives (e.g., palliative filter procedure, which contains more rigorous criteria than those in the Belgian Euthanasia Act), have been thoroughly investigated.

When Terminal Illness Is Worse Than Death: A Multicenter Study of Health-Care Providers' Resuscitation Desires.

PubMed

Chavez, Luis O; Einav, Sharon; Varon, Joseph

2017-11-01

To investigate how a terminal illness may affect the health-care providers' resuscitation preferences. We conducted a cross-sectional survey in 9 health-care institutions located in 4 geographical regions in North and Central America, investigating attitudes toward end-of-life practices in health-care providers. Statistical analysis included descriptive statistics and χ 2 test for the presence of associations ( P < 0.05 being significant) and Cramer V for the strength of the association. The main outcome measured the correlation between the respondents' present code status and their preference for cardiopulmonary resuscitation (CPR) in case of terminal illness. A total of 852 surveys were completed. Among the respondents, 21% (n = 180) were physicians, 36.9% (n = 317) were nurses, 10.5% (n = 90) were medical students, and 265 participants were other staff members of the institutions. Most respondents (58.3%; n = 500) desired "definitely full code" (physicians 73.2%; n = 131), only 13.8% of the respondents (physicians 8.33%; n = 15) desired "definitely no code" or "partial support," and 20.9% of the respondents (n = 179; among physicians 18.4%; n = 33) had never considered their code status. There was an association between current code status and resuscitation preference in case of terminal illness ( P < .001), but this association was overall quite weak (Cramer V = 0.180). Subgroup analysis revealed no association between current code status and terminal illness code preference among physicians ( P = .290) and nurses ( P = .316), whereupon other hospital workers were more consistent ( P < .01, Cramer V = .291). Doctors and nurses have different end-of-life preferences than other hospital workers. Their desire to undergo CPR may change when facing a terminal illness.

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

PubMed

Schulze, A; Wermuth, I

2007-04-01

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

Two cases of death due to plastic bag suffocation.

PubMed

Nadesan, K; Beng, O B

2001-01-01

Deaths due to plastic bag suffocation or plastic bag asphyxia are not reported in Malaysia. In the West many suicides by plastic bag asphyxia, particularly in the elderly and those who are chronically and terminally ill, have been reported. Accidental deaths too are not uncommon in the West, both among small children who play with shopping bags and adolescents who are solvent abusers. Another well-known but not so common form of accidental death from plastic bag asphyxia is sexual asphyxia, which is mostly seen among adult males. Homicide by plastic bag asphyxia too is reported in the West and the victims are invariably infants or adults who are frail or terminally ill and who cannot struggle. Two deaths due to plastic bag asphyxia are presented. Both the autopsies were performed at the University Hospital Mortuary, Kuala Lumpur. Both victims were 50-year old married Chinese males. One death was diagnosed as suicide and the other as sexual asphyxia. Sexual asphyxia is generally believed to be a problem associated exclusively with the West. Specific autopsy findings are often absent in deaths due to plastic bag asphyxia and therefore such deaths could be missed when some interested parties have altered the scene and most importantly have removed the plastic bag. A visit to the scene of death is invariably useful.

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

PubMed

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

2011-10-01

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

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

PubMed

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

2015-06-01

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

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

ERIC Educational Resources Information Center

Katzman, Lauren

2013-01-01

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

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

Single parents of children with chronic illness: an understudied phenomenon.

PubMed

Brown, Ronald T; Wiener, Lori; Kupst, Mary Jo; Brennan, Tara; Behrman, Richard; Compas, Bruce E; David Elkin, T; Fairclough, Diane L; Friebert, Sarah; Katz, Ernest; Kazak, Anne E; Madan-Swain, Avi; Mansfield, Nancy; Mullins, Larry L; Noll, Robert; Patenaude, Andrea Farkas; Phipps, Sean; Sahler, O J; Sourkes, Barbara; Zeltzer, Lonnie

2008-05-01

To examine the chronic illness literature and evaluate the impact on single parenting and children and adolescents with chronic illness. We conducted literature reviews of relevant research pertaining to single-parent families on PubMed, Medline, and PsychINFO and also surveyed pertinent book chapters and all of the articles from the Journal of Pediatric Psychology since 1987 for articles, specifically examining the potential associations of single (lone) parenting versus two-parent households on children's psychosocial functioning and the impact of the child's illness on caregiver functioning. While the literature has examined and discussed the stressors associated with parenting a child with an illness, including the impact of illness on finances, family roles, and caregiver burden, few studies have examined single parents of children and adolescents with chronic illnesses and related stressors stemming from being a lone caregiver. There is a dearth of studies examining the association between lone parenting and psychosocial functioning among children and adolescents with chronic illnesses. Specific questions necessitating future investigation are summarized and recommendations are made for future research in this important area of inquiry.

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

PubMed

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

2014-10-01

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

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

PubMed

del Pilar Camargo Plazas, Maria

2009-01-01

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

Rational suicide in the terminally ill.

PubMed

Fontana, Joyce S

2002-01-01

To examine the current debate over the right to die specific to the rational suicide of terminally ill patients. Literature was reviewed for information concerning historical end-of-life practices and the past acceptance of suicide. Another review showed philosophical opinions and perspectives that spanned from ancient Greece and the Roman Empire to modern philosophical discourse. A case study of a terminally ill woman who chose suicide is presented to apply the history and philosophy to nursing care today. As more nursing care is delivered in patients' homes, nurses will face this situation with increasing frequency. A call is made for organizations to provide guidelines for nursing practice.

Development and validation of a prognostic nomogram for terminally ill cancer patients.

PubMed

Feliu, Jaime; Jiménez-Gordo, Ana María; Madero, Rosario; Rodríguez-Aizcorbe, José Ramón; Espinosa, Enrique; Castro, Javier; Acedo, Jesús Domingo; Martínez, Beatriz; Alonso-Babarro, Alberto; Molina, Raquel; Cámara, Juan Carlos; García-Paredes, María Luisa; González-Barón, Manuel

2011-11-02

Determining life expectancy in terminally ill cancer patients is a difficult task. We aimed to develop and validate a nomogram to predict the length of survival in patients with terminal disease. From February 1, 2003, to December 31, 2005, 406 consecutive terminally ill patients were entered into the study. We analyzed 38 features prognostic of life expectancy among terminally ill patients by multivariable Cox regression and identified the most accurate and parsimonious model by backward variable elimination according to the Akaike information criterion. Five clinical and laboratory variables were built into a nomogram to estimate the probability of patient survival at 15, 30, and 60 days. We validated and calibrated the nomogram with an external validation cohort of 474 patients who were treated from June 1, 2006, through December 31, 2007. The median overall survival was 29.1 days for the training set and 18.3 days for the validation set. Eastern Cooperative Oncology Group performance status, lactate dehydrogenase levels, lymphocyte levels, albumin levels, and time from initial diagnosis to diagnosis of terminal disease were retained in the multivariable Cox proportional hazards model as independent prognostic factors of survival and formed the basis of the nomogram. The nomogram had high predictive performance, with a bootstrapped corrected concordance index of 0.70, and it showed good calibration. External independent validation revealed 68% predictive accuracy. We developed a highly accurate tool that uses basic clinical and analytical information to predict the probability of survival at 15, 30, and 60 days in terminally ill cancer patients. This tool can help physicians making decisions on clinical care at the end of life.

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

ERIC Educational Resources Information Center

Cohen, Andrew J.

1998-01-01

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

School Reentry for the Child with Chronic Illness.

ERIC Educational Resources Information Center

Sexson, Sandra B.; Madan-Swain, Avi

1993-01-01

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

Children Coping with Chronic Illness.

ERIC Educational Resources Information Center

Perez, Lissette M.

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

A Metasynthesis of Factors Affecting Self-Management of Chronic Illness

PubMed Central

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

2015-01-01

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

42 CFR 418.22 - Certification of terminal illness.

Code of Federal Regulations, 2010 CFR

2010-10-01

... certification of terminal illness for each of the periods listed in § 418.21, even if a single election... certification. Certification will be based on the physician's or medical director's clinical judgment regarding... certification or recertification form, in addition to the physician's signature on the certification or...

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

PubMed

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

2016-07-01

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

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

PubMed

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

2015-01-01

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

Nurses' attitudes to terminally ill patients.

PubMed

Román, E M; Sorribes, E; Ezquerro, O

2001-05-01

The care of terminally ill patients is a challenge for nurses that has raised special interest in recent years. Several studies have shown a stereotyped negative attitude in nurses towards terminally ill patients. However, all have used methods with several limitations. The aim of the study presented in this paper was to identify the nurses' attitude to the terminally ill patient in Catalonia, Spain, and the relationship of this attitude to different socio-demographic data (type of centre, shift, years of experience, age and sex) by means of a new quantitative method based on the free word-association test. One hundred and seventy-five nurses working in 18 hospitals and hospices in Catalonia, Spain were included in the study. Data were analysed by the Associative Semantic Field Differential method by means of the computer programme CONTEXT and a quantitative evaluation of the degree of attitudes positivity was obtained. The study revealed a general slight negative trend in attitudes towards the terminally ill patient. A more positive attitude was observed in older caregivers and in women. The positivity in attitude decreased from morning to night shift. No differences were observed between nurses working in hospitals and those working in hospices. We conclude that nursing attitudes can be analysed by methods such as that used in this study. Attempts can be made to modify this attitude in caregivers by means of training programmes and stimulating awareness of an adequate professional approach.

Journey of a Woman With Terminal Cervical Cancer.

PubMed

Kessler, Theresa A

2016-06-01

When a cervical cancer diagnosis is made during a terminal stage, a woman is faced with many challenges. Although a terminal illness has many negative effects, such as physical pain, scarring, fear, and sexual dysfunction, women may experience a positive impact on their life, such as improved well-being and a greater appreciation of daily life. The individual experience can lead to personal revelations. Sometimes, the diagnosis can even be seen as a blessing. Understanding a personal experience in a real-life context of the terminal stages of disease is important. This story shares the day-to-day journey of a woman living with a terminal illness of cervical cancer.

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

PubMed

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

2013-09-04

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

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

PubMed Central

2013-01-01

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

[Not Available].

PubMed

1989-07-01

A special balloon race last week symbolically launched a new charity aimed at providing holidays for sick and disabled children. Richard Branson, head of the Virgin Group, launched the National Holiday Fund for Sick and Disabled Children by releasing the last of 5,000 sponsored balloons. The National Holiday Fund, founded by two police officers, aims to brighten the lives of disabled, and chronically or terminally ill children by sending them on dream holidays. Specialist teams, will assess the children and accompany them on holiday. Each of the 5,000 balloons has been sponsored for £1. The sponsor of the balloon which travels the furthest will win £100.

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

PubMed

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

2017-10-01

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

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

PubMed

Hallion, Madeleine; Taylor, Amanda; Roberts, Rachel

2018-02-01

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

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

PubMed

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

2007-01-01

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

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

PubMed

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

2015-10-01

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

Teachers' Knowledge and Support Systems Regarding Students with Terminal Illness

ERIC Educational Resources Information Center

Heller, Kathryn Wolff; Coleman, Mari Beth; Best, Sherwood J.; Emerson, Judith

2013-01-01

This study examined teachers' knowledge and support when working with students with terminal illness or having experienced a student death. One hundred and ninety teachers of students with physical or multiple disabilities responded to a 40 item questionnaire that was distributed nationally. Results indicated that teachers have greater knowledge…

Characteristics of Persons Approving of Physician-Assisted Death

ERIC Educational Resources Information Center

Blevins, Dean; Preston, Thomas A.; Werth, James L., Jr.

2005-01-01

The present study describes the characteristics and attitudes of non-terminally ill persons who support physician-assisted death (PAD) along with their expectations and preferences for care in the future. Participants (N=101) completed a survey assessing current affect and attitudes and those expected if terminally ill. Participants' responses…

28 CFR 2.77 - Medical parole.

Code of Federal Regulations, 2012 CFR

2012-07-01

... granted a medical parole on the basis of terminal illness if: (1) The institution's medical staff has... medical condition that is not terminal, the Commission shall determine whether or not to release the... due to an incurable illness or disease; and (2) The Commission finds that: (i) The prisoner will not...

28 CFR 2.77 - Medical parole.

Code of Federal Regulations, 2010 CFR

2010-07-01

... granted a medical parole on the basis of terminal illness if: (1) The institution's medical staff has... medical condition that is not terminal, the Commission shall determine whether or not to release the... due to an incurable illness or disease; and (2) The Commission finds that: (i) The prisoner will not...

28 CFR 2.77 - Medical parole.

Code of Federal Regulations, 2013 CFR

2013-07-01

... granted a medical parole on the basis of terminal illness if: (1) The institution's medical staff has... medical condition that is not terminal, the Commission shall determine whether or not to release the... due to an incurable illness or disease; and (2) The Commission finds that: (i) The prisoner will not...

28 CFR 2.77 - Medical parole.

Code of Federal Regulations, 2014 CFR

2014-07-01

... granted a medical parole on the basis of terminal illness if: (1) The institution's medical staff has... medical condition that is not terminal, the Commission shall determine whether or not to release the... due to an incurable illness or disease; and (2) The Commission finds that: (i) The prisoner will not...

28 CFR 2.77 - Medical parole.

Code of Federal Regulations, 2011 CFR

2011-07-01

... granted a medical parole on the basis of terminal illness if: (1) The institution's medical staff has... medical condition that is not terminal, the Commission shall determine whether or not to release the... due to an incurable illness or disease; and (2) The Commission finds that: (i) The prisoner will not...

Terminal Illness: Counseling with a Family Perspective

ERIC Educational Resources Information Center

Krieger, G. W.; Bascue, L. O.

1975-01-01

When facing terminal illness, the dying individual needs to accept death and his feelings about it, deal with potential isolation from friends and relatives, and find meaning in his remaining time. Family members need also to accept death. Family counseling offers a treatment method for responding to these needs. (Author)

Family Approaches to the Chronically Mentally Ill: Implications for Rural Areas.

ERIC Educational Resources Information Center

Kilpatrick, Allie C.; Kilpatrick, Ebb G.

The decade of the 1980s has witnessed a rebirth of concern regarding the chronically mentally ill. The way mental health professionals view families of the chronically mentally ill has changed dramatically, largely because of the emergence of the biological theories of causation for schizophrenia. Innovative programs for families have included…

78 FR 6404 - Agency Information Collection (Survey of Chronic Gastrointestinal Illness in Persian Gulf...

Federal Register 2010, 2011, 2012, 2013, 2014

2013-01-30

...: Approximately 25 percent military troops who were deployed in the first Persian Gulf War returned with... of Chronic Gastrointestinal Illness in Persian Gulf Veterans) Activities Under OMB Review AGENCY.... Survey of Chronic Gastrointestinal Illness in Persian Gulf Veterans, VA Form 10-21092a. b. VA Research...

Effects of Sudden vs. Chronic Illness Death on Bereavement Outcome.

ERIC Educational Resources Information Center

Sanders, Catherine M.

1982-01-01

Interviewed bereaved persons shortly after the death of a close family member and 18 months later. Respondents were grouped according to mode of death. The short-term chronic illness group made the most favorable adjustment. Sudden death and long-term chronic illness death groups sustained higher intensities of bereavement. (Author/RC)

Women's self-management of chronic illnesses in the context of caregiving: a grounded theory study.

PubMed

Martinez-Marcos, Mercedes; De la Cuesta-Benjumea, Carmen

2015-06-01

Uncover how women self-manage their own chronic illness while taking care of a dependent relative. International policies place special emphasis in promoting interventions addressed to control, prevent and care for people with chronic health conditions. Self-management is a crucial part of this care. Caregivers are more prone to have chronic illness than non-caregivers. They are confronted with dilemmas about taking care of themselves while taking care of their dependent relative and the rest of their families. Caregivers articulate strategies to enable them to focus their energy on caring. Qualitative study using constructivist grounded theory. Thirty-nine women caregivers with a chronic illness participated in the study. Twenty-three semi-structured interviews and two focus groups were carried out between April 2010-December 2011. Data were analysed using grounded theory procedures. Self-management helps women caregivers with a chronic illness to balance the demands of their own illness and those of the dependent relative. They self-manage their illness by self-regulating the treatment, by regulating their strength and by controlling their emotions. Women caregivers integrate effectively and creatively the management of their chronic illnesses within the complexities of family care. This renders their health needs invisible and reaffirms them as capable caregivers. Identifying self-management strategies of women caregivers allow health professionals to acknowledge and reinforce effective self-care measures and to deter those that are ineffective and lessen their quality of life. © 2014 John Wiley & Sons Ltd.

Employment status and work-related difficulties among family members of terminally ill patients compared with the general population.

PubMed

Kim, Seon Young; Chang, Yoon-Jung; Do, Young Rok; Kim, Sam Yong; Park, Sang Yoon; Jeong, Hyun Sik; Kang, Jung Hun; Kim, Si-Yung; Ro, Jung Sil; Lee, Jung Lim; Lee, Woo Jin; Park, Sook Ryun; Yun, Young Ho

2013-01-01

Although caregiving to patients with terminal illness is known to be a stressful burden to family members, little attention has been focused on work-related problems. We aimed to investigate employment status and work-related difficulties of family caregivers of terminal cancer patients, comparing with the general population. Using structured questionnaires, we assessed family caregivers of 481 cancer patients determined by physicians to be terminally ill, from 11 university hospitals and the National Cancer Center in Korea. Among 381 family caregivers of terminal cancer patients (response rate, 87.6%), 169 (43.9%) were not working before cancer diagnosis, but currently 233 (63.7%) were not working. Compared with the general population (36.5%), the percentage of not working among the family caregivers was higher (OR = 2.39; 95% CI= 1.73-3.29). A major reason for not working was to provide assistance to the patients (71.6%). 40.6% of those who continued working and 32.3% of those who not working family members reported extreme fatigue. Caregivers of old age, those who were female, those with a lower household income, and those caring for patients with a low performance status were not working at a more significant rate. Family caregivers of terminal cancer patients suffer job loss and severe work-related difficulties, probably due to caregiving itself and to fatigue. We need to develop supportive programs to overcome the burden of caregivers of the terminally ill.

Sickness absence management: encouraging attendance or 'risk-taking' presenteeism in employees with chronic illness?

PubMed

Munir, Fehmidah; Yarker, Joanna; Haslam, Cheryl

2008-01-01

To investigate the organizational perspectives on the effectiveness of their attendance management policies for chronically ill employees. A mixed-method approach was employed involving questionnaire survey with employees and in-depth interviews with key stakeholders of the organizational policies. Participants reported that attendance management polices and the point at which systems were triggered, posed problems for employees managing chronic illness. These systems presented risk to health: employees were more likely to turn up for work despite feeling unwell (presenteeism) to avoid a disciplinary situation but absence-related support was only provided once illness progressed to long-term sick leave. Attendance management polices also raised ethical concerns for 'forced' illness disclosure and immense pressures on line managers to manage attendance. Participants felt their current attendance management polices were unfavourable toward those managing a chronic illness. The policies heavily focused on attendance despite illness and on providing return to work support following long-term sick leave. Drawing on the results, the authors conclude that attendance management should promote job retention rather than merely prevent absence per se. They outline areas of improvement in the attendance management of employees with chronic illness.

How Clinicians Feel about Working with Spouses of the Chronically Ill.

PubMed

Ingram, Douglas H

2015-09-01

Clinicians who provide psychotherapy to spouses or partners of the chronically ill were solicited through listserves of psychodynamic and other organizations. The current report excluded those therapists working with spouses of dementia patients. Interviews were conducted with clinicians who responded. The interviews highlight the challenges commonly encountered by psychotherapeutic work with this cohort of therapy patients. A comparison is drawn that shows both overlap and distinctions between the experiences of those therapists engaging with spouses of chronically ill patients without a dementing process and those working with spouses of chronically ill patients who do suffer from a dementing process.

Extending the P4P agenda, part 2: how Medicare can reduce waste and improve the care of the chronically ill.

PubMed

Wennberg, John E; Fisher, Elliott S; Skinner, Jonathan S; Bronner, Kristen K

2007-01-01

The care of Americans with severe chronic illnesses is disorganized, unnecessarily costly, and undisciplined by sound clinical science. The federal government should invest in a crash program to improve the scientific basis of managing chronic illness, and the Centers for Medicare and Medicaid Services (CMS) should extend its pay-for-performance (P4P) agenda to ensure that within ten years all Americans with severe chronic illnesses have access to accountable health care organizations providing evidence-based prospective care. This paper recommends a strategy for achieving this goal.

How do macro-level contexts and policies affect the employment chances of chronically ill and disabled people? Part II: The impact of active and passive labor market policies.

PubMed

Holland, Paula; Nylén, Lotta; Thielen, Karsten; van der Wel, Kjetil A; Chen, Wen-Hao; Barr, Ben; Burström, Bo; Diderichsen, Finn; Andersen, Per Kragh; Dahl, Espen; Uppal, Sharanjit; Clayton, Stephen; Whitehead, Margaret

2011-01-01

The authors investigate three hypotheses on the influence of labor market deregulation, decommodification, and investment in active labor market policies on the employment of chronically ill and disabled people. The study explores the interaction between employment, chronic illness, and educational level for men and women in Canada, Denmark, Norway, Sweden, and the United Kingdom, countries with advanced social welfare systems and universal health care but with varying types of active and passive labor market policies. People with chronic illness were found to fare better in employment terms in the Nordic countries than in Canada or the United Kingdom. Their employment chances also varied by educational level and country. The employment impact of having both chronic illness and low education was not just additive but synergistic. This amplification was strongest for British men and women, Norwegian men, and Danish women. Hypotheses on the disincentive effects of tighter employment regulation or more generous welfare benefits were not supported. The hypothesis that greater investments in active labor market policies may improve the employment of chronically ill people was partially supported. Attention must be paid to the differential impact of macro-level policies on the labor market participation of chronically ill and disabled people with low education, a group facing multiple barriers to gaining employment.

Comforts of Home: Home Care of the Terminally Ill

PubMed Central

Fraser, Jacqueline

1990-01-01

When a terminal illness is diagnosed, it is appropriate for the family physician to take a primary role in future management. Care goals change from being disease-focused and cure-directed to being person-focused and comfort-targeted. The patient and family comprise the unit of care. Care of the terminally ill in the home requires good planning, teamwork, excellent symptom management, and a commitment by the family physician to be available or provide alternate coverage. Death in the home should be an option for the patient and family whenever feasible. Caring for patients until death and supporting their families and friends are rewarding and positive parts of family practice. PMID:21233972

How music-inspired weeping can help terminally ill patients.

PubMed

Norton, Kay

2011-09-01

Music's power to improve the 'human condition' has been acknowledged since ancient times. Something as counter-intuitive as weeping in response to music can ameliorate suffering for a time even for terminally ill patients. Several benefits-including catharsis, communication, and experiencing vitality-can be associated with grieving in response to "sad" music. In addressing the potential rewards of such an activity for terminally ill patients, this author combines concepts from philosopher Jerrold R. Levinson's article, entitled "Music and Negative Emotion," an illustration from a major motion picture, and supporting research from medical reports and aesthetic writings. Carefully offering this experience is recommended for patients who retain the capacity to express preference.

Effects of Parental Chronic Illness on Children's Psychosocial and Educational Functioning: A Literature Review

ERIC Educational Resources Information Center

Chen, Cliff Yung-Chi

2017-01-01

A good number of children grow up in households where a parent has been diagnosed with medical chronic illness. Parental chronic illness is stressful for children and adolescents and may have some potential impact on children's adjustment and functioning. Some emerging research conducted in the fields of medicine, nursing, and family studies has…

Psychosocial Experiences of Chronic Illness in Individuals with an Intellectual Disability: A Systematic Review of the Literature

ERIC Educational Resources Information Center

Flynn, Samantha; Hulbert-Williams, Nicholas; Hulbert-Williams, Lee; Bramwell, Ros

2015-01-01

Background: Increased life expectancy has led to an increase in diagnoses of chronic illness in people with an intellectual disability; despite this increase, research about the psychological impact is rare. This review explored the psychosocial experiences of chronic illness in adults with an intellectual disability, revealing potential…

Life after the Shock! The Impact on Families of Caring for Young Children with Chronic Illness

ERIC Educational Resources Information Center

Ashton, Jean

2004-01-01

The stresses experienced by most families include limitations on time, conditions of employment, financial burdens and sibling rivalry. For the families of a child with a chronic illness, these stresses are often compounded, making family functioning problematic. Chronic illness is marked by permanency and the need for ongoing vigilance with…

Outcomes of On-Line Financial Education for Chronically Ill Rural Women

ERIC Educational Resources Information Center

Haynes, Deborah C.; Haynes, George W.; Weinert, Clarann

2011-01-01

This research was part of a larger longitudinal study of chronically ill rural women to determine if computer technology could be effective in allowing the women to take control of their own well-being, including finances. The current study examined whether chronically ill rural women can effectively use on-line personal finance educational…

Chronic Illness & Mental Health

MedlinePlus

... chronic medical conditions have a higher risk of depression. The same factors that increase risk of depression ... a chronic or long-term illness. People with depression are at higher risk for other medical conditions. ...

Online self-management interventions for chronically ill patients: cognitive impairment and technology issues.

PubMed

Archer, Norm; Keshavjee, Karim; Demers, Catherine; Lee, Ryan

2014-04-01

As the fraction of the population with chronic diseases continues to grow, methods and/or technologies must be found to help the chronically ill to take more responsibility to self-manage their illnesses. Internet based and/or mobile support for disease self-management interventions have often proved effective, but patients with chronic illnesses may have co-occurring cognitive impairment, making it more difficult for them to cope with technologies. Many older patients are also not familiar with technologies or they may have cognitive disabilities or dementia that reduce their ability to self-manage their healthcare. On-line solutions to the needs of chronically ill patients must be investigated and acted upon with care in an integrated manner, since resources invested in these solutions will be lost if patients do not adopt and continue to use them successfully. To review the capabilities of online and mobile support for self-management of chronic illnesses, and the impacts that age and disease-related issues have on these interventions, including cognitive impairment and lack of access or familiarity with Internet or mobile technologies. This study includes a review of the co-occurrence of cognitive impairment with chronic diseases, and discusses how cognitive impairment, dyadic caregiver patient support, patient efficacy with technology, and smart home technologies can impact the effectiveness and sustainability of online support for disease self-management. Disease self-management interventions (SMIs) using online patient centered support can often enable patients to manage their own chronic illnesses. However, our findings show that cognitive impairment often co-occurs in patients with chronic disease. This, along with age-related increases in multiple chronic illnesses and lack of technology efficacy, can be obstacles to Internet and mobile support for chronic disease self-management. Patients with chronic diseases may have greater than expected difficulties in using Internet and mobile technologies for disease self-management, often due to cognitive impairment or unfamiliarity with technology. Approaches to dealing with such barriers include suitable integration of solutions involving patient-caregiver dyads, better design of online applications, careful attention to technology adoption and sustainability, and smart home technologies. Copyright © 2014 Elsevier Ireland Ltd. All rights reserved.

Coping with Loneliness among the Terminally Ill

ERIC Educational Resources Information Center

Rokach, Ami

2007-01-01

Loneliness is a universal phenomenon, and its pain is intensified by a diagnosis of a terminal illness. The present study is an investigation of the strategies used by patients with Multiple sclerosis (MS), by individuals diagnosed with cancer, and by the general population to cope with loneliness. Three hundred and twenty nine MS patients, 315…

Preparing Classroom Teachers for the Impending Death of a Student with Terminal Illness.

ERIC Educational Resources Information Center

Rice, Craig J.; Gourley, Junean Krajewski

2003-01-01

This article discusses students with terminal illnesses and the challenges teachers face in dealing with the issue of death. Classroom strategies for dealing with death are described and include using children's literature that explores death, using deaths of pets as teachable moments, and using children's films. (Contains references.) (CR)

Teaching Third-Year Medical Students how to Care for Terminally Ill Patients.

ERIC Educational Resources Information Center

Martin, Robert W.; Wylie, Norma

1989-01-01

A successful seven-day course offered to third-year medical students is an integrated program for teaching them how to deal with terminal illness. The course uses lectures, audiovisual aids, and group and individual sessions to enhance self-awareness and practical application of the material in a clinical setting. (Author/MSE)

Pain Control Research in the Terminally Ill.

ERIC Educational Resources Information Center

Levy, Michael H.

1988-01-01

Two main goals in the care of the terminally ill are to optimize the quality of their remaining life and to alleviate the distress of their survivors. Pain control research has contributed significantly to meeting those goals, but continued progress is needed in both basic studies and expanded applications of new techniques. (Author/NB)

Perceived resource support for chronic illnesses among diabetics in north-western China.

PubMed

Zhong, Huiqin; Shao, Ya; Fan, Ling; Zhong, Tangshen; Ren, Lu; Wang, Yan

2016-06-01

A high level of social support can improve long-term diabetes self-management. Support from a single source has been evaluated. This study aims to analyze support from multiple and multilevel sources for diabetic patients by using the Chronic Illness Resources Survey (CIRS). Factors influencing the utilization of the CIRS were also evaluated. A total of 297 patients with diabetes were investigated using the CIRS and Perceived Diabetes Self-management Scale in Shihezi City, China. Descriptive statistics were used to explain demographic variables and scores of the scales. Factors affecting the utilization of chronic illness resources were determined through univariate analysis and then examined by multivariate logistic regression analysis. Of the 297 diabetic patients surveyed, 67% failed to reach the standard (more than 3 points) of utilizing chronic illness resources. Moreover, utilization of chronic illness resources was positively moderately correlated with self-management of diabetes (r = 0.75, P < 0.05). According to the multivariate logistic regression analysis, age (OR, 3.42; 95%CI, 1.19-9.84) and monthly income (OR, 5.27; 95%CI, 1.86-14.90) were significantly positively associated with the CIRS score. Individuals with high school (OR, 2.61; 95%CI, 1.13-6.05) and college (OR, 3.02; 95%CI, 1.13-8.04) degrees obtained higher scores in the survey than those with elementary school education. Results indicated that utilization of resources and support for chronic illness self-management, particularly personal adjustment and organization, were not ideal among diabetics in the communities of north-western China. Improved utilization of chronic illness resources was conducive for proper diabetes self-management. Furthermore, the level of utilization of chronic illness resources increased with age, literacy level, and monthly income.

Neighbourly support of people with chronic illness; is it related to neighbourhood social capital?

PubMed

Waverijn, Geeke; Heijmans, Monique; Groenewegen, Peter P

2017-01-01

The neighbourhood may provide resources for health. It is to date unknown whether people who live in neighbourhoods with more social capital have more access to practical and emotional support by neighbours, or whether this is a resource only available to those who are personally connected to people in their neighbourhood. We investigated whether support by neighbours of people with chronic illness was related to neighbourhood social capital and to individual neighbourhood connections. Furthermore, we investigated whether support received from neighbours by people with chronic illness differed according to demographic and disease characteristics. We collected data on support by neighbours and individual connections to neighbours among 2272 people with chronic illness in 2015. Data on neighbourhood social capital were collected among 69,336 people in 3425 neighbourhoods between May 2011 and September 2012. Neighbourhood social capital was estimated with ecometric measurements. We conducted multilevel regression analyses. People with chronic illness were more likely to receive practical and emotional support from neighbours if they had more individual connections to people in their neighbourhood. People with chronic illness were not more likely to receive practical and emotional support from neighbours if they lived in a neighbourhood with more social capital. People with chronic illness with moderate physical disabilities or with comorbidity, and people with chronic illness who lived together with their partner or children, were more likely to receive support from neighbours. To gain more insight into the benefits of neighbourhood social capital, it is necessary to differentiate between the resources only accessible through individual connections to people in the neighbourhood and resources provided through social capital on the neighbourhood level. Copyright © 2016 Elsevier Ltd. All rights reserved.

A literature review on self-care of chronic illness: definition, assessment and related outcomes.

PubMed

Ausili, Davide; Masotto, Matteo; Dall'Ora, Chiara; Salvini, Lorena; Di Mauro, Stefania

2014-01-01

Chronic illnesses care represents a challenging issue for people well-being and future health systems' sustainability. Promotion of self-care is considered a key point for chronically ill patients' care. The aim of this literature was to explore: how self-care of chronic illness has been theoretically defined; how self-care can be assessed in clinical and research settings; what associations exist between self-care and health outcomes of chronically ill patients. A wide range of definitions and terminologies related to self-care of chronic illness has been found in the literature. Although some common elements useful to explain the concept of self-care have been identified, the physical, cognitive, emotional and social processes underlying self-care remain controversial and poorly defined. Valid and reliable disease-specific assessment tools have been developed and used in a growing number of studies; however, the lack of utilization of standardized instruments in clinical practice has been referred by many authors. Significant correlations between self-care of chronic illness and outcome measures e.g. general health status, quality of life and healthcare costs, are reported by a limited number of studies. Supporting patient self-care is recognized as a crucial factor in chronic illness care. A deeper analysis of variables and processes influencing self-care could help for a full description of the phenomenon. A systematic evaluation of self-care in health professionals' everyday clinical practice is strongly recommended. The development of general non-disease-specific assessment tools could facilitate the evaluation of complex patients, especially those with multiple co-morbidities. Although self-care has been recognized as a vital intermediate outcome, further large-scale studies clarifying the association between self-care and patients' and health systems' outcomes are needed.

Family members' views on the benefits of harp music vigils for terminally-ill or dying loved ones.

PubMed

Ganzini, Linda; Rakoski, Alexa; Cohn, Sharilyn; Mularski, Richard A

2015-02-01

Music-thanatology is a palliative modality that uses harp and voice to provide bedside vigils, particularly for terminally ill or actively dying. We sought to determine the benefits of music vigils for terminally ill patients. Survey of 55 family members, whose terminally ill loved one experienced a music vigil during hospitalization, regarding effects on the patient's breathing, relaxation, comfort, pain and ability to sleep. Written comments on negative and positive results of the vigils were coded using content analysis. Family members perceived that the vigils resulted in modest improvement in the patients' breathing, relaxation, comfort, and ability to sleep, with fewer positive effects on pain, and almost no negative effects. Open ended comments focused on the positive benefit in increasing calm, relaxation, comfort. Comments on the positive effects for the family were almost as common as comments on the positive results for the patient. The use of music-vigils in palliative care should be investigated more extensively as our study supports that this intervention has benefits, almost no risk, minimal cost, and may improve patient-family experience of the dying process.

Attitudes toward mental illness in adults by mental illness-related factors and chronic disease status: 2007 and 2009 Behavioral Risk Factor Surveillance System.

PubMed

Kobau, Rosemarie; Zack, Matthew M

2013-11-01

We examined how attitudes toward mental illness treatment and its course differ by serious psychological distress, mental illness treatment, chronic disease, and sociodemographic factors using representative state-based data. Using data from jurisdictions supporting the Behavioral Risk Factor Surveillance System's Mental Illness and Stigma Module (35 states, the District of Columbia, and Puerto Rico), we compared adjusted proportions of adults agreeing that "Treatment can help people with mental illness lead normal lives" (treatment effectiveness) and that "People are generally caring and sympathetic to people with mental illness" (supportive environment), by demographic characteristics, serious psychological distress, chronic disease status, and mental illness treatment. Attitudes regarding treatment effectiveness and a supportive environment for people with mental illness varied within and between groups. Most adults receiving mental illness treatment agreed that treatment is effective. Fewer adults with serious psychological distress than those without such distress agreed that treatment is effective. Fewer of those receiving treatment, those with psychological distress, and those with chronic disease perceived the environment as supportive. These data can be used to target interventions for population subgroups with less favorable attitudes and for surveillance.

Giving patients responsibility or fostering mutual response-ability: family physicians' constructions of effective chronic illness management.

PubMed

Thille, Patricia H; Russell, Grant M

2010-10-01

Current visions of family medicine and models of chronic illness management integrate evidence-based medicine with collaborative, patient-centered care, despite critiques that these constructs conflict with each other. With this potential conflict in mind, we applied a critical discursive psychology methodology to present discursive patterns articulated by 13 family physicians in Ontario, Canada, regarding care of patients living with multiple chronic illnesses. Physicians constructed competing versions of the terms "effective chronic illness management" and "patient involvement." One construction integrated individual responsibility for health with primacy of "evidence," resulting in a conceptualization consistent with paternalistic care. The second constructed effective care as involving active partnership of physician and patient, implying a need to foster the ability of both practitioners and patients to respond to complex challenges as they arose. The former pattern is inconsistent with visions of family medicine and chronic illness management, whereas the latter embodies it.

Consequences of caring for a child with a chronic disease: Employment and leisure time of parents.

PubMed

Hatzmann, Janneke; Peek, Niels; Heymans, Hugo; Maurice-Stam, Heleen; Grootenhuis, Martha

2014-12-01

Chronically ill children require several hours of additional care per day compared to healthy children. As parents provide most of this care, they have to incorporate it into their daily schedule, which implies a reduction in time for other activities. The study aimed to assess the effect of having a chronically ill child on parental employment and parental leisure activity time, and to explore the role of demographic, social, and disease-related variables in relation to employment and leisure activities. Outcomes of 576 parents of chronically ill children and 441 parents of healthy school children were analyzed with multivariate regression. Having a chronically ill child was negatively related with family employment, maternal labor force participation, and leisure activity time. Use of child care was positively related to family and maternal employment of the total group of parents. Within parents of chronically ill children, most important finding was the negative relation of dependency of the child on daily care and low parental educational level with family and maternal employment. In conclusion, parents of chronically ill children, mothers in particular, are disadvantaged in society probably due to the challenge of combining child care with work and leisure time. © The Author(s) 2013.

A center for self-management of chronic illnesses in diverse groups.

PubMed

Inouye, Jillian; Boland, Mary G; Nigg, Claudio R; Sullivan, Kathleen; Leake, Anne; Mark, Debra; Albright, Cheryl L

2011-01-01

Prevention and successful treatment of chronic disease require a scientific understanding of the impacts and interactions of ethnicity, culture, and illness on self-management interventions. This article presents one approach to developing effective methods to address the needs of ethnic minorities living with chronic illnesses. Described is the University of Hawaii Center for Ohana Self-Management of Chronic Illnesses (COSMCI) located in the School of Nursing & Dental Hygiene and funded by the National Institute of Nursing Research (Award Number P20NR010671). The interdisciplinary center focuses on family and community self-management interventions in ethnically diverse populations with chronic illnesses. Areas discussed are: 1) the operational structure for creating an environment conducive to interdisciplinary ohana self-management chronic illness research in ethnically diverse populations; and 2) the development of sustainable interdisciplinary, biobehavioral research capacity. The COSMCI uses a social cognitive theory framework to guide the application of established self-management interventions to Asian and Pacific Island populations (API) through three conceptually linked research projects on HIV infection, type 2 diabetes, and chronic obstructive pulmonary disease. COSMI addresses the feasibility of sharing of lessons learned among the approaches taken. The interdisciplinary nature of COSMCI increases the potential success of the intervention efforts. Hawaii Medical Journal Copyright 2010.

Promoting an ethic of engagement in pediatric palliative care research.

PubMed

Rahimzadeh, Vasiliki; Bartlett, Gillian; Longo, Cristina; Crimi, Laura; Macdonald, Mary Ellen; Jabado, Nada; Ells, Carolyn

2015-10-16

This paper defends the ethical and empirical significance of direct engagement with terminally ill children and adolescents in PPC research on health-related quality of life. Clinical trials and other forms of health research have resulted in tremendous progress for improving clinical outcomes among children and adolescents diagnosed with a life-threatening illness. Less attention has been paid, however, to engaging this patient population directly in studies aimed at optimizing health-related quality of life in PPC. Though not restricted to care at the end of life, PPC--and by extension PPC research--is in part dependent on recognizing the social complexities of death and dying and where health-related quality of life is a fundamental element. To explore these complexities in depth requires partnership with terminally ill children and adolescents, and acknowledgement of their active social and moral agency in research. Principles of pediatric research ethics, theoretical tenets of the "new sociology of the child(hood)," and human rights codified in the United Nations Convention on the Rights of the Child (UNCRC) underpin the position that a more engagement-centered approach is needed in PPC research. The ethics, sociologies and human rights of engagement will each be discussed as they relate to research with terminally ill children and adolescents in PPC. Qualitative method(ologies) presented in this paper, such as deliberative stakeholder consultations and phenomenology of practice can serve as meaningful vehicles for achieving i) participation among terminally ill children and adolescents; ii) evidence-bases for PPC best practices; and iii) fulfillment of research ethics principles. PPC research based on direct engagement with PPC patients better reflects their unique expertise and social epistemologies of terminal illness. Such an approach to research would strengthen both the ethical and methodological soundness of HRQoL inquiry in PPC.

Chronic illness and Hmong shamans.

PubMed

Helsel, Deborah; Mochel, Marilyn; Bauer, Robert

2005-04-01

Among the challenges health care personnel in California's central valley face has been finding ways to help Hmong Americans manage chronic illness. Interviews were conducted with 11 Hmong shamans diagnosed with diabetes or hypertension and were qualitatively analyzed to ascertain respondents' understanding and management of their illnesses. Hmong shamans are influential individuals within their communities and are often the resource persons to whom patients turn for information on health. Understanding the shamans' perspective on chronic illness was seen as a gateway to understanding how the broader Hmong American community perceived these conditions. The concept of chronic illness was not well understood, resulting in sporadic medication and dietary regimens, limited awareness of potential complications, and a persistent impression that these illnesses could be cured rather than managed. Suggestions for patient educators include family and community involvement in care regimens and the use of descriptive terminology to identify the disease.

Sleep and Culture in Children with Medical Conditions

PubMed Central

Koinis-Mitchell, Daphne

2010-01-01

Objectives To provide an integrative review of the existing literature on the interrelationships among sleep, culture, and medical conditions in children. Methods A comprehensive literature search was conducted using PubMed, Medline, and PsychINFO computerized databases and bibliographies of relevant articles. Results Children with chronic illnesses experience more sleep problems than healthy children. Cultural beliefs and practices are likely to impact the sleep of children with chronic illnesses. Few studies have examined cultural factors affecting the relationship between sleep and illness, but existing evidence suggests the relationship between sleep and illness is exacerbated for diverse groups. Conclusions Sleep is of critical importance to children with chronic illnesses. Cultural factors can predispose children both to sleep problems and to certain medical conditions. Additional research is needed to address the limitations of the existing literature, and to develop culturally sensitive interventions to treat sleep problems in children with chronic illnesses. PMID:20332222

An Exploratory Study of the Relationship of Family Support and Coping with Adjustment: Implications for College Students with a Chronic Illness

ERIC Educational Resources Information Center

Wodka, Ericka L.; Barakat, Lamia P.

2007-01-01

To examine the role of family support and coping in the adjustment of adolescents with chronic illness (CI) transitioning into college, college freshmen and sophomores (N[subscript chronic illness] = 32, N[subscript primarily negative life event] = 53, N[subscript primarily positive life event] = 16) were administered standard measures. CI group…

Nutritional Needs of the Handicapped/Chronically Ill Child. Manual I: Nutrition Program Planning. Presentations from a National Interdisciplinary Symposium.

ERIC Educational Resources Information Center

Ekvall, Shirley M., Ed.; And Others

The following papers were delivered at a symposium on improving the nutritional status of a child who is chronically ill or handicapped: (1) "Planning Comprehensive Health Services for the Chronically Ill/Handicapped Child; (2) "Future National Directions in Maternal and Child Health"; (3) "Nutrition Services in a State Crippled Children's…

Reserve-building activities attenuate treatment burden in chronic illness: The mediating role of appraisal and social support

PubMed Central

Schwartz, Carolyn E; Zhang, Jie; Michael, Wesley; Eton, David T; Rapkin, Bruce D

2018-01-01

This study examines the importance of four psychosocial factors—personality, cognitive appraisal of quality of life, social support, and current reserve-building—in predicting treatment burden in chronically ill patients. Chronically ill patients (n = 446) completed web-based measures. Structural equation modeling was used to investigate psychosocial factors predicting treatment burden. Reserve-building activities indirectly reduced treatment burden by: (1) reducing health worries appraisals, (2) reducing financial difficulties, (3) increasing calm and peaceful appraisals, and (4) increasing perceived social support. These findings point to key behaviors that chronically ill people can use to attenuate their treatment burden. PMID:29785278

Tools to assess living with a chronic illness: A systematic review.

PubMed

Ambrosio, Leire; Portillo, Mari Carmen

2018-05-16

To analyse the currently available instruments to assess living with a chronic illness and related aspects. A review of the evidence was made using the databases: Medline, CINHAL, PsycINFO, Cochrane Library, Embase and Cuiden. The criteria that limited the search were: the language, English and / or Spanish and studies carried out in an adult population. Years of article publication were not used as a limit. A total of 16 instruments were identified and analysed that apparently measured the concept of living with a chronic illness and/or related aspects. According to the name of the instrument, four seemed to evaluate the concept of living with a chronic illness while the rest of the instruments evaluated aspects intrinsically related to the concept of "living with", such as attributes or the meaning of living with a chronic illness. Different instruments were identified to evaluate daily living for the chronically ill patient, as well as related aspects. According to this review, further validation studies are required in other populations and/or contexts in order to achieve valid and reliable instruments that could be used in clinical practice. Copyright © 2018 Elsevier España, S.L.U. All rights reserved.

Quick screening tool for patients with severe negative emotional reactions to chronic illness: psychometric study of the negative emotions due to chronic illness screening test (NECIS).

PubMed

Huang, Yun-Hsin; Wu, Chih-Hsun; Chen, Hsiu-Jung; Cheng, Yih-Ru; Hung, Fu-Chien; Leung, Kai-Kuan; Lue, Bee-Horng; Chen, Ching-Yu; Chiu, Tai-Yuan; Wu, Yin-Chang

2018-01-16

Severe negative emotional reactions to chronic illness are maladaptive to patients and they need to be addressed in a primary care setting. The psychometric properties of a quick screening tool-the Negative Emotions due to Chronic Illness Screening Test (NECIS)-for general emotional problems among patients with chronic illness being treated in a primary care setting was investigated. Three studies including 375 of patients with chronic illness were used to assess and analyze internal consistency, test-retest reliability, criterion-related validity, a cut-off point for distinguishing maladaptive emotions and clinical application validity of NECIS. Self-report questionnaires were used. Internal consistency (Cronbach's α) ranged from 0.78 to 0.82, and the test-retest reliability was 0.71 (P < 0.001). Criterion-related validity was 0.51 (P < 0.001). Based on the 'severe maladaptation' and 'moderate maladaptation' groups defined by using the 'Worsening due to Chronic Illness' index as the analysis reference, the receiver-operating characteristic curve analysis revealed an area under the curve of 0.81 and 0.82 (ps < 0.001), and a cut-off point of 19/20 was the most satisfactory for distinguishing those with overly negative emotions, with a sensitivity and specificity of 83.3 and 69.0%, and 68.5 and 83.0%, respectively. The clinical application validity analysis revealed that low NECIS group showed significantly better adaptation to chronic illness on the scales of subjective health, general satisfaction with life, self-efficacy of self-care for disease, illness perception and stressors in everyday life. The NECIS has satisfactory psychometric properties for use in the primary care setting. © The Author 2017. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Individual care plans for chronically ill patients within primary care in the Netherlands: Dissemination and associations with patient characteristics and patient-perceived quality of care.

PubMed

Jansen, Daphne L; Heijmans, Monique; Rijken, Mieke

2015-06-01

To examine the use of individual care plans (ICPs) within primary chronic illness care in the Netherlands, and to explore the relationships between ICP use, patient characteristics, and patient-perceived quality of care. Cross-sectional study using survey data from a panel of chronically ill patients and medical registration data provided by their general practices. A sample of 1377 patients with somatic chronic disease(s) randomly selected in general practices throughout the Netherlands, supplemented with a sample of 225 COPD patients, also recruited from general practices. (i) Percentage of ICP use based on self-report by chronically ill patients, and (ii) patient-perceived quality of care as assessed using the Patient Assessment of Chronic Illness Care (PACIC). ICP use among the total generic sample was low (9%), but slightly higher (13%) among patients diagnosed with diabetes or COPD, diseases for which disease management programmes have been set up in the Netherlands. Patients with a low educational level and patients with poor(er) self-rated health were more likely to have an ICP. Compared with patients without an ICP, patients with an ICP more often reported that the care they received was patient-centred, proactive, planned, and included collaborative goal setting, problem-solving, and follow-up support. Findings reveal a discrepancy between practice and policy aspirations regarding ICP use in primary chronic illness care. More research is needed to gain insight into the effectiveness of ICPs to improve the quality of chronic illness care in various patient populations.

A meta-ethnographic synthesis on phenomenographic studies of patients’ experiences of chronic illness

PubMed Central

Röing, Marta

2015-01-01

Phenomenography is a qualitative research approach developed within an educational framework, focusing on the qualitative experience of learning. It is also being used, to a lesser degree, in healthcare research. In the present study, we conducted a meta-ethnographic synthesis of phenomenographic studies on chronic illness, in order to give a broader perspective of how chronic illness can be experienced. Our aim was not to describe patients’ various individual experiences of illness, but instead to identify the different ways chronic illness can be experienced by patients. Our synthesis and phenomenographic interpretation of 12 selected articles found that patients’ experiences of chronic illness can be described in terms of a different lived body, a struggle with threat to identity and self-esteem, a diminished lifeworld, and a challenging reality. These experiences relate to each other in a process of recurring loops, where the different ways of experiencing continue to influence each other over time. According to these findings, the use of phenomenography as a research approach has the potential to add to the understanding of how chronic illness can be experienced. Patients may benefit from seeing that their illness can be experienced in many different ways and that it has many aspects, which then can lead to a better understanding and coping with their illness. We suggest that it may be worthwhile to expand the scope of phenomenography outside pedagogics. This presupposes a revision of the application to include a wider and more comprehensive description, for instance, of the different ways illness and healthcare phenomena can be experienced, and how these different ways are related to each other, with less focus on hierarchical relations. PMID:25690674

Storytelling by Adults Diagnosed with Terminal Illness: Narrative Identifying through Dialogical Research

ERIC Educational Resources Information Center

Sauer, Michael Paul

2012-01-01

The purpose of this dialogical qualitative research study was to gain insight into the process of storytelling with adults diagnosed with terminal illness as a way of making meaning of their experiences and lives. The study was informed by the conceptual frameworks of story, storytelling, and story listening which are grounded in the theory of…

Fear of Death, Mortality Communication, and Psychological Distress among Secular and Religiously Observant Family Caregivers of Terminal Cancer Patients

ERIC Educational Resources Information Center

Bachner, Yaacov G.; O'Rourke, Norm; Carmel, Sara

2011-01-01

Previous research suggests that caregivers and terminally ill patients face substantial difficulties discussing illness and death. Existing research, however, has focused primarily on the experience of patients. The current study compared responses as well as the relative strength of association between mortality communication, fear of death, and…

Integrated Care for the Terminally Ill: Variations in the Utilization of Formal Services.

ERIC Educational Resources Information Center

Meyers, Allan R.; And Others

1983-01-01

A review of 85 patients who received home care for terminal illness showed that a small proportion of patients use a relatively high volume of both in-patient and home care services. Data suggest that there are two dimensions of service utilization: a medical dimension and a social dimension. (Author/RC)

Spouses' Effectiveness as End-of-Life Health Care Surrogates: Accuracy, Uncertainty, and Errors of Overtreatment or Undertreatment

ERIC Educational Resources Information Center

Moorman, Sara M.; Carr, Deborah

2008-01-01

Purpose: We document the extent to which older adults accurately report their spouses' end-of-life treatment preferences, in the hypothetical scenarios of terminal illness with severe physical pain and terminal illness with severe cognitive impairment. We investigate the extent to which accurate reports, inaccurate reports (i.e., errors of…

Care for chronic illness in Australian general practice – focus groups of chronic disease self-help groups over 10 years: implications for chronic care systems reforms

PubMed Central

Martin, Carmel M; Peterson, Chris; Robinson, Rowena; Sturmberg, Joachim P

2009-01-01

Background Chronic disease is a major global challenge. However, chronic illness and its care, when intruding into everyday life, has received less attention in Asia Pacific countries, including Australia, who are in the process of transitioning to chronic disease orientated health systems. Aim The study aims to examine experiences of chronic illness before and after the introduction of Australian Medicare incentives for longer consultations and structured health assessments in general practice. Methods Self-help groups around the conditions of diabetes, epilepsy, asthma and cancer identified key informants to participate in 4 disease specific focus groups. Audio taped transcripts of the focus groups were coded using grounded theory methodology. Key themes and lesser themes identified using a process of saturation until the study questions on needs and experiences of care were addressed. Thematic comparisons were made across the 2002/3 and 1992/3 focus groups. Findings At times of chronic illness, there was need to find and then ensure access to 'the right GP'. The 'right GP or specialist' committed to an in-depth relationship of trust, personal rapport and understanding together with clinical and therapeutic competence. The 'right GP', the main specialist, the community nurse and the pharmacist were key providers, whose success depended on interprofessional communication. The need to trust and rely on care providers was balanced by the need for self-efficacy 'to be in control of disease and treatment' and 'to be your own case manager'. Changes in Medicare appeared to have little penetration into everyday perceptions of chronic illness burden or time and quality of GP care. Inequity of health system support for different disease groupings emerged. Diabetes, asthma and certain cancers, like breast cancer, had greater support, despite common experiences of disease burden, and a need for research and support programs. Conclusion Core themes around chronic illness experience and care needs remained consistent over the 10 year period. Reforms did not appear to alleviate the burden of chronic illness across disease groups, yet some were more privileged than others. Thus in the future, chronic care reforms should build from greater understanding of the needs of people with chronic illness. PMID:19161636

Paradise regained: how elderly people who are chronically mentally ill reinvent a social self.

PubMed

van Dongen, E

2001-01-01

Throughout their lives, chronic mentally ill people go through a series of disruptive events and periods of suffering. In general, the literature suggests that people with long-standing mental illnesses are extremely vulnerable and cannot maintain themselves without assistance. When old age is added to this mix, the result is a heavy burden for both the patient and the caregiver. While the negative consequences, for both patient and caregiver, of suffering chronic illness during old age must not be ignored, neither should the positive periods in these people's lives. There are times when the mutual identification between cold and young yields vivid examples of the latter's ability to reconstitute a social self. In this paper I look at chronic illness in old age as a struggle on the part of the sufferer to reconcile her/his experiences of suffering in the light of approaching death. I attempt to show that the process of aging with a chronic mental illness involves not only decay and suffering, but also resilience and vitality.

From personal challenge to technical fix: the risks of depersonalised care.

PubMed

Reeve, Joanne; Lynch, Tom; Lloyd-Williams, Mari; Payne, Sheila

2012-03-01

Our research focuses on the complexity of needs associated with distress in people with advanced cancer. We have recently completed a large longitudinal survey exploring the interplay between a number of components of distress, including depression, demoralisation, debility and spirituality, amongst a cohort of people living with terminal cancer. Participants were recruited from 25 hospices across the Northwest of England between 2007-2009. A purposive subsample of 27 people was invited to take part in a qualitative interview to explore in greater depth their personal experiences of living with illness and related distress. Holistic-content analysis revealed two emerging themes: 'personal or personalised care' and 'expectations of truth and certainty'. We discuss these themes in the light of Illich's critique of health care as a 'technical response to a personal challenge'. We highlight the need for further work to explore the impact of organisation of care on personalised need and suggest looking to the chronic illness self-management literature for help in developing future palliative care approaches. © 2011 Blackwell Publishing Ltd.

Nutritional Needs of the Child with a Handicap or Chronic Illness. Manual II: Clinical Nutrition. Presentations from a National Interdisciplinary Symposium.

ERIC Educational Resources Information Center

Ekvall, Shirley M.; Wheby, Elizabeth A.

The following papers were presented at a symposium on clinical nutrition for the child who is chronically ill or handicapped: (1) "Food Allergy"; (2) "Anemia and the Chronically Ill or Handicapped Child"; (3) "Nutrition and Neurotransmitters--Clinical Implications"; (4) "The Importance of Lipid Type in the Diet after Burn Injury"; (5) "Advances of…

Impact of chronic illness timing and persistence at school entry on child and parent outcomes: Australian longitudinal study.

PubMed

Quach, Jon; Barnett, Tony

2015-01-01

To understand the prevalence and timing of child chronic illness at school entry; associations with child learning, behavior and health-related quality of life and parent mental health at ages 6 to 7, 8 to 9, and 10 to 11 years; and cumulative health care costs. Data were drawn from the first 4 waves of the Longitudinal Study of Australian Children. Children were aged 4 to 5 years at wave 1, with data collection every 2 years. Parent-reported timing of child chronic illness at school entry was categorized into 4 chronic illness groups based on changes between waves 1 and 2: none, resolving, incident and persistent. Child outcomes included: parent-reported quality of life, parent- and teacher-reported behavior, teacher-reported child learning, teacher-reported child-teacher relationship, directly assessed nonverbal and verbal cognition and parent self-reported mental health. Linear regression, adjusted for gender and socioeconomic position, was used to quantify longitudinal associations between chronic illness timing at school entry with outcomes at age 6 to 7 years, 8 to 9 years and 10 to 11 years. Of the 4983 children enrolled in the study, chronic illness data was available for 4464 children (89.6%) at both waves 1 and 2. From wave 1, 6.1% had a condition that persisted until wave 2, while 14.1% had a condition that resolved. Furthermore, 4.7% had a newly emerging condition at wave 2. Compared with the no chronic illness group, children with persistent or emerging chronic illness during school entry had the poorest outcomes (except father's mental health) at all time points, while children with resolving conditions had smaller differences. Child chronic illness at school entry is associated with poorer longitudinal child and maternal outcomes. Therefore, future research should aim to determine the risk and protective factors that contribute to the poorer child and parent outcomes experienced in this growing population. Copyright © 2015 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.

The impact of chronic physical illness, maternal depressive symptoms, family functioning, and self-esteem on symptoms of anxiety and depression in children.

PubMed

Ferro, Mark A; Boyle, Michael H

2015-01-01

The present study extends earlier research identifying an increased risk of anxiety among children with chronic physical illness (CwCPI) by examining a more complete model that explains how physical illness leads to increased symptoms of anxiety and depression. We tested a stress-generation model linking chronic physical illness to symptoms of anxiety and depression in a population-based sample of children aged 10 to 15 years. We hypothesized that having a chronic physical illness would be associated with more symptoms of anxiety and depression, increased levels of maternal depressive symptoms, more family dysfunction, and lower self-esteem; and, that maternal depressive symptoms, family dysfunction, and child self-esteem would mediate the influence of chronic physical illness on symptoms of anxiety and depression. Data came from the National Longitudinal Survey of Children and Youth (N = 10,646). Mediating processes were analyzed using latent growth curve modeling. Childhood chronic physical illness was associated with increases in symptoms of anxiety and depression, β = 0.20, p < 0.001. Mediating effects were also observed such that chronic physical illness resulted in increases in symptoms of maternal depression and family dysfunction, leading to declines in child self-esteem, and in turn, increases in symptoms of anxiety and depression. CwCPI are at-risk for symptoms of anxiety and depression. Some of this elevated risk appears to work through family processes and child self-esteem. This study supports the use of family-centered care approaches among CwCPI to minimize burden on families and promote healthy psychological development for children.

The impact of illness-related shame on psychological health and social relationships: Testing a mediational model in students with chronic illness.

PubMed

Trindade, Inês A; Duarte, Joana; Ferreira, Cláudia; Coutinho, Mariana; Pinto-Gouveia, José

2018-05-01

This study explores the impact of illness-related shame on the quality of social relationships and psychological health in chronic patients. We aimed to examine the roles of fear of receiving compassion from others and experiential avoidance as potential mediators of this relationship. Although some studies have demonstrated the negative impact of chronic illness-related shame on psychological functioning, the mechanisms that may underlie this link remain understudied. The sample was comprised by 115 college students, which had been diagnosed with at least 1 chronic illness. Participants completed self-report measures on an online platform. This study's design was cross-sectional. A path analysis was conducted using structural equation modelling. Results showed that the impact of illness-related shame on both psychological health (R 2  = .45) and the quality of social relationships (R 2  = .33) was fully accounted by fear of compassion from others and experiential avoidance. This model revealed an excellent fit. Fear of receiving compassion from others was the main mediator of the illness-related shame link with the quality of social relationships (β = -.22). The main mediator of the association between shame-related chronic illness and psychological health was experiential avoidance (β = -.21).This study shed light on possible psychological mechanisms linking feelings of shame associated with having a chronic condition and impaired social relationships and mental health. On one hand, resisting feelings of compassion and care from others and, on the other hand, avoiding difficult internal experiences and situations that might trigger them seem to underlie the impact of shame on psychological and social functioning in chronic patients. Copyright © 2018 John Wiley & Sons, Ltd.

Pre-travel advice seeking from GPs by travellers with chronic illness seen at a travel clinic.

PubMed

Gagneux-Brunon, Amandine; Andrillat, Carole; Fouilloux, Pascale; Daoud, Fatiha; Defontaine, Christiane; Charles, Rodolphe; Lucht, Frédéric; Botelho-Nevers, Elisabeth

2016-03-01

Travellers are ageing and frequently report chronic illness. Pre-travel health advice is crucial, particularly in this subgroup, and general practitioners (GPs) are first in line for treatment adjustment before departure. Our aim is to evaluate pre-travel health advice seeking from GPs by travellers with chronic illness seen at a travel clinic. A cross-sectional observational survey using a questionnaire was conducted between August 2013 and July 2014 in travellers attending the travel medicine clinic of a tertiary university hospital in France. During the study, 2019 travellers were included. Mean age was 39.4 years (±18.8). Three hundred and ninety-one (19.4%) travellers reported a history of a chronic illness. Arterial hypertension and diabetes mellitus were the most frequently reported illnesses, affecting, respectively, 168 (8.3%) travellers and 102 (5.1%). Hajj pilgrims were more likely to report a history of chronic illness than other travellers. Only 810 (40.1%) travellers sought pre-travel advice from their GP. Six hundred and fifty-two (40.1%) healthy travellers and 158 (40.5%) travellers reporting chronic illness sought pre-travel advice from their GP (P = 0.96). Travellers with a history of chronic illness do not seek pre-travel health advice from their GP more frequently than healthy travellers. Travel health specialists are generally not the best practitioners to manage the care of underlying medical conditions presenting risks during travel. However, GPs offer continuity and disease management expertise to improve the specificity of pre-travel planning. Thus, ongoing collaboration between the traveller, GP and travel health specialist is likely to yield the best outcomes. © International Society of Travel Medicine, 2016. All rights reserved. Published by Oxford University Press. For permissions, please e-mail: journals.permissions@oup.com.

In search of attachment: a qualitative study of chronically ill women transitioning between family physicians in rural Ontario, Canada.

PubMed

Randall, Ellen; Crooks, Valorie A; Goldsmith, Laurie J

2012-12-23

Most Canadians receive basic health services from a family physician and these physicians are particularly critical in the management of chronic disease. Canada, however, has an endemic shortage of family physicians. Physician shortages and turnover are particularly acute in rural regions, leaving their residents at risk of needing to transition between family physicians. The knowledge base about how patients manage transitioning in a climate of scarcity remains nascent. The purpose of this study is to explore the experience of transitioning for chronically ill, rurally situated Canadian women to provide insight into if and how the system supports transitioning patients and to identify opportunities for enhancing that support. Chronically ill women managing rheumatic diseases residing in two rural counties in the province of Ontario were recruited to participate in face-to-face, semi-structured interviews. Interview transcripts were analysed thematically to identify emergent themes associated with the transitioning experience. Seventeen women participated in this study. Ten had experienced transitioning and four with long-standing family physicians anticipated doing so soon. The remaining three expressed concerns about transitioning. Thematic analysis revealed the presence of a transitioning trajectory with three phases. The detachment phase focused on activities related to the termination of a physician-patient relationship, including haphazard notification tactics and the absence of referrals to replacement physicians. For those unable to immediately find a new doctor, there was a phase of unattachment during which patients had to improvise ways to receive care from alternative providers or walk-in clinics. The final phase, attachment, was characterized by acceptance into the practice of a new family physician. Participants often found transitioning challenging, largely due to perceived gaps in support from the health care system. Barriers to a smooth transition included inadequate notification procedures, lack of formal assistance finding new physicians, and unsatisfactory experiences seeking care during unattachment. The participants' accounts reveal opportunities for a stronger system presence during transition and a need for further research into alternative models of primary care delivery.

Beyond fighting fires and chasing tails? Chronic illness care plans in Ontario, Canada.

PubMed

Russell, Grant; Thille, Patricia; Hogg, William; Lemelin, Jacques

2008-01-01

Recent work has conceptualized new models for the primary care management of patients with chronic illness. This study investigated the experience of family physicians and patients with a chronic illness management initiative that involved the joint formulation of comprehensive individual patient care plans. A qualitative evaluation, framed by phenomenology, immediately followed a randomized controlled trial examining the effect of external facilitators in enhancing the delivery of chronic condition care planning in primary care. The study, set in Ontario family practices, used semistructured in-depth interviews with a purposive sample of 13 family physicians, 20 patients, and all 3 study facilitators. Analysis used independent transcript review and constant comparative methods. Despite the intervention being grounded in patient-centered principles, family physicians generally viewed chronic illness management from a predominantly biomedical perspective. Only a few enthusiasts viewed systematic care planning as a new approach to managing patients with chronic illness. Most family physicians found the strategy to be difficult to implement within existing organizational and financial constraints. For these participants, care planning conflicted with preexisting concepts of their role and of their patient's abilities to become partners in care. The few patients who noticed the process spoke favorably about their experience. Although the experiences of the enthusiastic family physicians were encouraging, we found important individual-level barriers to chronic illness management in primary care. These issues seemed to transcend existing organizational and resource constraints.

First Do No Harm: Euthanasia of Patients with Dementia in Belgium

PubMed Central

Cohen-Almagor, Raphael

2016-01-01

In Memory of Ed Pellegrino Euthanasia in Belgium is not limited to terminally ill patients. It may be applied to patients with chronic degenerative diseases. Currently, people in Belgium wish to make it possible to euthanize incompetent patients who suffer from dementia. This article explains the Belgian law and then explores arguments for and against euthanasia of patients with dementia. It probes the dementia paradox by elucidating Dworkin’s distinction between critical and experiential interests, arguing that at the end-of-life this distinction is not clearcut. It argues against euthanasia for patients with dementia, for respecting patients’ humanity and for providing them with more care, compassion, and good doctoring. PMID:26661050

The "La Caixa" Foundation and WHO Collaborating Center Spanish National Program for enhancing psychosocial and spiritual palliative care for patients with advanced diseases, and their families: preliminary findings.

PubMed

Gómez-Batiste, Xavier; Buisan, Montse; González, M Pau; Velasco, David; de Pascual, Verónica; Espinosa, Jose; Novellas, Anna; Martínez-Muñoz, Marisa; Simón, Marc; Calle, Candela; Lanaspa, Jaume; Breitbart, William

2011-09-01

The psycho-social needs of patients with advanced chronic illness and their families include emotional, spiritual, and bereavement care. With a funding initiative by the La Caixa Foundation and design by the WHO Collaborating Center, we developed and implemented a program for the comprehensive care of terminally-ill individuals and their families, in Spain. The intent was to improve the psycho-social and spiritual dimensions of care, to generate experience and evidence, to explore models, and to act as catalyst in the Spanish National Strategy for Palliative Care. We reviewed the process of design, implementation, and initial evaluation of the program at 18 months. Thirty psycho-social teams' (PST) acting as support teams projects were initiated. There were 120 full-time healthcare professionals appointed (58% clinical psychologists). These professionals received training through a comprehensive postgraduate course, and all used the same documentation. Some results were collated 18 months post-implementation. The total number of patients attended to was 10,954, and the number of relatives was 17,715. The preliminary clinical outcomes show a significant improvement in well-being, and a decrease in anxiety and insomnia, although there was a smaller impact on alleviating depression. Healthcare professionals collated results on satisfaction with palliative care (PC) services. Based on these preliminary results, we suggest that the PST can be a model of organization that is effective and efficient in improving the psycho-social and spiritual aspects of care of terminally ill patients. Further follow-up and evaluation with validated tools are the main goals for the immediate future.

Course and predictors of depressive symptoms among family caregivers of terminally ill cancer patients until their death.

PubMed

Tang, Siew Tzuh; Chang, Wen-Cheng; Chen, Jen-Shi; Wang, Hung-Ming; Shen, Wen Chi; Li, Chung-Yi; Liao, Yen-Chi

2013-06-01

Few studies have investigated the impact of providing end-of-life care on family caregivers' depressive symptoms over time, especially until the patient's death. The purpose of this study was to identify the course and predictors of depressive symptoms in caregivers of terminally ill cancer patients until they died. For this prospective, longitudinal study of 193 caregivers, data were collected using the Center for Epidemiological Studies Depression Scale, Symptom Distress Scale, Medical Outcomes Study Social Support Survey, and Caregiver Reaction Assessment scale. The course and predictors of depressive symptoms were analyzed using the generalized estimating equation model. Caregivers' depressive symptoms increased as the patient's death approached. Spousal or adult child family caregivers suffered more depressive symptoms if they self-identified as lacking social support and confidence in offering substantial assistance for younger terminally ill cancer patients with higher levels of symptom distress. Caregivers were susceptible to higher levels of depressive symptoms if they were heavily burdened by caregiving, that is, experienced more disruptions in schedules, greater health deterioration, stronger sense of family abandonment, and lower caregiver esteem. Psychological well-being of caregivers of terminally ill cancer patients deteriorated in response to progression of the patient's disease and impending death. Effective interventions should be developed and provided to high-risk caregivers as identified in our study. Increasing caregivers' strength of perceived social support, facilitating their confidence in caregiving, and alleviating their subjective burden may lessen the development of depressive symptoms in caregivers of terminally ill cancer patients throughout the dying process. Copyright © 2012 John Wiley & Sons, Ltd.

The influence of family adaptability and cohesion on anxiety and depression of terminally ill cancer patients.

PubMed

Park, Young-Yoon; Jeong, Young-Jin; Lee, Junyong; Moon, Nayun; Bang, Inho; Kim, Hyunju; Yun, Kyung-Sook; Kim, Yong-I; Jeon, Tae-Hee

2018-01-01

This study investigated the effect of family members on terminally ill cancer patients by measuring the relationship of the presence of the family caregivers, visiting time by family and friends, and family adaptability and cohesion with patient's anxiety and depression. From June, 2016 to March, 2017, 100 terminally ill cancer patients who were admitted to a palliative care unit in Seoul, South Korea, were surveyed, and their medical records were reviewed. The Korean version of the Family Adaptability and Cohesion Evaluation Scales III and Hospital Anxiety-Depression Scale was used. Chi-square and multiple logistic regression analyses were used. The results of the chi-square analysis showed that the presence of family caregivers and family visit times did not have statistically significant effects on anxiety and depression in terminally ill cancer patients. In multiple logistic regression, when adjusted for age, sex, ECOG PS, and the monthly average income, the odds ratios (ORs) of the low family adaptability to anxiety and depression were 2.4 (1.03-5.83) and 5.4 (1.10-26.87), respectively. The OR of low family cohesion for depression was 5.4 (1.10-27.20) when adjusted for age, sex, ECOG PS, and monthly average household income. A higher family adaptability resulted in a lower degree of anxiety and depression in terminally ill cancer patients. The higher the family cohesion, the lower the degree of depression in the patient. The presence of the family caregiver and the visiting time by family and friends did not affect the patient's anxiety and depression.

The Impact of Family Behaviors and Communication Patterns on Chronic Illness Outcomes: A Systematic Review

PubMed Central

Rosland, Ann-Marie; Heisler, Michele; Piette, John D.

2013-01-01

In general, social support from family members affects chronic illness outcomes, but evidence on which specific family behaviors are most important to adult patient outcomes has not been summarized. We systematically reviewed studies examining the effect of specific family member behaviors and communication patterns on adult chronic illness self-management and clinical outcomes. Thirty studies meeting inclusion criteria were identified, representing 22 participant cohorts, and including adults with arthritis, chronic cardiovascular disease, diabetes, and/or end stage renal disease. Family emphasis on self-reliance and personal achievement, family cohesion, and attentive responses to symptoms were associated with better patient outcomes. Critical, overprotective, controlling, and distracting family responses to illness management were associated with negative patient outcomes. Study limitations included cross-sectional designs (11 cohorts), however results from longitudinal studies were similar. Findings suggest that future interventions aiming to improve chronic illness outcomes should emphasize increased family use of attentive coping techniques and family support for the patient’s autonomous motivation. PMID:21691845

Culture and Chronic Illness: Raising Children with Disabling Conditions in a Culturally Diverse World. Papers presented at an Invitational Conference (Racine, Wisconsin, June 1992).

ERIC Educational Resources Information Center

Pediatrics, 1993

1993-01-01

This special supplement presents two background papers, three working papers, and key recommendations from a conference on culture and chronic illness in childhood. The meeting had as its goal the identification of the state of knowledge on the interface among culture, chronic illness, child development, and family functioning, for the purpose of…

A shared respite—The meaning of place for family well-being in families living with chronic illness

PubMed Central

Årestedt, Liselott; Benzein, Eva; Persson, Carina; Rämgård, Margareta

2016-01-01

Living with chronic illness is a family affair that involves ongoing changes and challenges in everyday life. When life changes, the environment is important for family health and well-being. The relation between a place and a family is rarely described, and therefore the aim of this study was to explore the meaning of place for family well-being in families living with chronic illness. A qualitative design was chosen. Data were collected by photovoice combined with narrative family research interviews with 10 families living with chronic illness. A phenomenological hermeneutic analysis was used to interpret the data. The results showed that the meaning of place for family well-being in families living with chronic illness can be described as “a shared respite.” This main theme included three subthemes: “a place for relief,” “a place for reflection,” and “a place for re-creation.” These results were further understood by means of the concept place security. Feeling well means having place security in these families. Through knowledge about the meaning of place for family well-being, health care personnel can stimulate families living with chronic illness to find respite in places that contribute to well-being, both in familiar and new places. PMID:26956097

A shared respite--The meaning of place for family well-being in families living with chronic illness.

PubMed

Årestedt, Liselott; Benzein, Eva; Persson, Carina; Rämgård, Margareta

2016-01-01

Living with chronic illness is a family affair that involves ongoing changes and challenges in everyday life. When life changes, the environment is important for family health and well-being. The relation between a place and a family is rarely described, and therefore the aim of this study was to explore the meaning of place for family well-being in families living with chronic illness. A qualitative design was chosen. Data were collected by photovoice combined with narrative family research interviews with 10 families living with chronic illness. A phenomenological hermeneutic analysis was used to interpret the data. The results showed that the meaning of place for family well-being in families living with chronic illness can be described as "a shared respite." This main theme included three subthemes: "a place for relief," "a place for reflection," and "a place for re-creation." These results were further understood by means of the concept place security. Feeling well means having place security in these families. Through knowledge about the meaning of place for family well-being, health care personnel can stimulate families living with chronic illness to find respite in places that contribute to well-being, both in familiar and new places.

Ethical Guidelines for Counselors when Working with Clients with Terminal Illness Requesting Physician Aid in Dying

ERIC Educational Resources Information Center

Kurt, Layla J.; Piazza, Nick J.

2012-01-01

In 2005, the American Counseling Association (ACA) introduced a new ethical standard for counselors working with clients with terminal illness who are considering hastened death options. The authors' purpose is to inform counselors of the Death With Dignity Act and explore relevant ethical guidelines in the "ACA Code of Ethics" (ACA, 2005).

Systematic review of positive youth development programs for adolescents with chronic illness.

PubMed

Maslow, Gary R; Chung, Richard J

2013-05-01

The Positive Youth Development (PYD) framework has been successfully used to support at-risk youth. However, its effectiveness in fostering positive outcomes for adolescents with chronic illness has not been established. We performed a systematic review of PYD-consistent programs for adolescents with chronic illness. Data sources included PubMed, CINAHL, and PsychINFO. Guided by an analytic framework, we searched for studies of PYD-consistent programs serving adolescents and young adults aged 13 through 24 with chronic illness. References were screened iteratively with increasing depth until a focused cohort was obtained and reviewed in full. The authors separately reviewed the studies using structured analysis forms. Relevant study details were abstracted during the review process. Fifteen studies describing 14 programs were included in the analysis. Three comprehensive programs included all 3 core components of a PYD program, including opportunities for youth leadership, skill building, and sustained connections between youth and adults. Four programs were primarily mentoring programs, and 7 others focused on youth leadership. Programs served youth with a variety of chronic illnesses. The quality and type of evaluation varied considerably, with most reporting psychosocial outcomes but only a few including medical outcomes. The PYD-consistent programs identified in this review can serve as models for the development of youth development programs for adolescents with chronic illness. Additional study is needed to evaluate such programs rigorously with respect to both psychosocial and health-related outcomes. PYD-consistent programs have the potential to reach youth with chronic illness and promote positive adult outcomes broadly.

Psychological interventions for mental health disorders in children with chronic physical illness: a systematic review.

PubMed

Bennett, Sophie; Shafran, Roz; Coughtrey, Anna; Walker, Susan; Heyman, Isobel

2015-04-01

Children with chronic physical illness are significantly more likely to develop common psychiatric symptoms than otherwise healthy children. These children therefore warrant effective integrated healthcare yet it is not established whether the known, effective, psychological treatments for symptoms of common childhood mental health disorders work in children with chronic physical illness. EMBASE, MEDLINE, PsycINFO and CINAHL databases were searched with predefined terms relating to evidence-based psychological interventions for psychiatric symptoms in children with chronic physical illness. We included all studies (randomised and non-randomised designs) investigating interventions aimed primarily at treating common psychiatric symptoms in children with a chronic physical illness in the review. Two reviewers independently assessed the relevance of abstracts identified, extracted data and undertook quality analysis. Ten studies (209 children, including 70 in control groups) met the criteria for inclusion in the review. All studies demonstrated some positive outcomes of cognitive behavioural therapy for the treatment of psychiatric symptoms in children with chronic physical illness. Only two randomised controlled trials, both investigating interventions for symptoms of depression, were found. There is preliminary evidence that cognitive behavioural therapy has positive effects in the treatment of symptoms of depression and anxiety in children with chronic physical illness. However, the current evidence base is weak and fully powered randomised controlled trials are needed to establish the efficacy of psychological treatments in this vulnerable population. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

Post-millennial trends of socioeconomic inequalities in chronic illness among adults in Germany.

PubMed

Hoebel, Jens; Kuntz, Benjamin; Moor, Irene; Kroll, Lars Eric; Lampert, Thomas

2018-03-27

Time trends in health inequalities have scarcely been studied in Germany as only few national data have been available. In this paper, we explore trends in socioeconomic inequalities in the prevalence of chronic illness using Germany-wide data from four cross-sectional health surveys conducted between 2003 and 2012 (n = 54,197; ages 25-69 years). We thereby expand a prior analysis on post-millennial inequality trends in behavioural risk factors by turning the focus to chronic illness as the outcome measure. The regression-based slope index of inequality (SII) and relative index of inequality (RII) were calculated to estimate the extent of absolute and relative socioeconomic inequalities in chronic illness, respectively. The results for men revealed a significant increase in the extent of socioeconomic inequalities in chronic illness between 2003 and 2012 on both the absolute and relative scales (SII 2003  = 0.06, SII 2012  = 0.17, p-trend = 0.013; RII 2003  = 1.18, RII 2012  = 1.57, p-trend = 0.013). In women, similar increases in socioeconomic inequalities in chronic illness were found (SII 2003  = 0.05, SII 2012  = 0.14, p-trend = 0.022; RII 2003  = 1.14, RII 2012  = 1.40, p-trend = 0.021). Whereas in men this trend was driven by an increasing prevalence of chronic illness in the low socioeconomic group, the trend in women was predominantly the result of a declining prevalence in the high socioeconomic group.

The experiences of chronically ill patients and registered nurses when they negotiate patient care in hospital settings: a feminist poststructural approach: A qualitative study that explores negotiation of patient care between patients and chronically ill patients in hospital settings.

PubMed

Griscti, Odette; Aston, Megan; Martin-Misener, Ruth; Mcleod, Deborah; Warner, Grace

2016-07-01

The aim of this study was to understand the experiences of chronically ill patients and registered nurse in negotiating patient care in hospital. Specifically, we explored how social and institutional discourses shaped power relations and negotiation of patient care. Current literature indicates that although nurses embrace this notion, such partnerships are not easily implemented. Most existing studies focus on the role of the nurse as the leader of the partnership with little attention paid to how social and institutional values, beliefs and practices shape nurse/patient power relations; or how these relationships are negotiated between nurses and patients. The theoretical and methodological approaches used in this study are based on the precepts of Foucault and feminist poststructural theorists. In depth interviews were conducted with eight chronically ill patients and 10 registered nurses. Both nurses and patients commented about the relationships that develop between nurses and chronically ill patients and how these relationships facilitate negotiation of patient care. Both parties described challenging moments and how institutional discourses may hinder positive negotiations of care. In this paper we highlight three themes that emerged: getting to know each other, they are not the sickest patients and finding time to listen. This study offers an innovative way of unpacking negotiation of care between chronically ill patients and registered nurses. It exposes how social and institutional discourses play a pivotal role in shaping negotiations between nurses and chronically ill patients. Negotiating care with chronically ill patients is not as asymmetric as portrayed in some of the literature and tends to be based on mutual agreements between nurses and patients. Nurses make it a point to listen to patients' needs and resist institutional discourses that preclude them from spending time with patients. © 2016 John Wiley & Sons Ltd.

The epidemiology of chronic critical illness in the United States*.

PubMed

Kahn, Jeremy M; Le, Tri; Angus, Derek C; Cox, Christopher E; Hough, Catherine L; White, Douglas B; Yende, Sachin; Carson, Shannon S

2015-02-01

The epidemiology of chronic critical illness is not well characterized. We sought to determine the prevalence, outcomes, and associated costs of chronic critical illness in the United States. Population-based cohort study using data from the United States Healthcare Costs and Utilization Project from 2004 to 2009. Acute care hospitals in Massachusetts, North Carolina, Nebraska, New York, and Washington. Adult and pediatric patients meeting a consensus-derived definition for chronic critical illness, which included one of six eligible clinical conditions (prolonged acute mechanical ventilation, tracheotomy, stroke, traumatic brain injury, sepsis, or severe wounds) plus at least 8 days in an ICU. None. Out of 3,235,741 admissions to an ICU during the study period, 246,151 (7.6%) met the consensus definition for chronic critical illness. The most common eligibility conditions were prolonged acute mechanical ventilation (72.0% of eligible admissions) and sepsis (63.7% of eligible admissions). Among patients meeting chronic critical illness criteria through sepsis, the infections were community acquired in 48.5% and hospital acquired in 51.5%. In-hospital mortality was 30.9% with little change over the study period. The overall population-based prevalence was 34.4 per 100,000. The prevalence varied substantially with age, peaking at 82.1 per 100,000 individuals 75-79 years old but then declining coincident with a rise in mortality before day 8 in otherwise eligible patients. Extrapolating to the entire United States, for 2009, we estimated a total of 380,001 cases; 107,880 in-hospital deaths and $26 billion in hospital-related costs. Using a consensus-based definition, the prevalence, hospital mortality, and costs of chronic critical illness are substantial. Chronic critical illness is particularly common in the elderly although in very old patients the prevalence declines, in part because of an increase in early mortality among potentially eligible patients.

Time spent on health related activities associated with chronic illness: a scoping literature review.

PubMed

Jowsey, Tanisha; Yen, Laurann; W, Paul Mathews

2012-12-03

The management of health care, particularly for people with chronic conditions, combines the activities of health professionals, patients, informal carers and social networks that support them. Understanding the non-professional roles in health management requires information about the health related activities (HRA) that are undertaken by patients and informal carers. This understanding allows management planning that incorporates the capacity of patients and informal carers, as well as identifying the particular skills, knowledge and technical support that are necessary. This review was undertaken to identify how much time people with chronic illness and their informal carers spend on HRA. Literature searches of three electronic databases (CINAHL, Medline, and PubMed) and two journals (Time and Society, Sociology of Health and Illness) were carried out in 2011 using the following search terms (and derivatives): chronic illness AND time AND consumer OR carer. The search was aimed at finding studies of time spent on HRA. A scoping literature review method was utilised. Twenty-two peer reviewed articles published between 1990 and 2010 were included for review. The review identified limited but specific studies about time use by people with a chronic illness and/or their carers. While illness work was seen as demanding, few studies combined inquiry about both defined tasks and defined time use. It also identified methodological issues such as consistency of definition and data collection methods, which remain unresolved. While HRA are seen as demanding by people doing them, few studies have measured actual time taken to carry out a comprehensive range of HRA. The results of this review suggest that both patients with chronic illness and informal carers may be spending 2 hours a day or more on HRA. Illnesses such as diabetes may be associated with higher time use. More empirical research is needed to understand the time demands of self-management, particularly for those affected by chronic illness.

The use of mixed methods in studying a chronic illness.

PubMed

Jason, Leonard A; Reed, Jordan

This article explores mixed methods approaches with an illness called Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). Qualitative and Quantitative data were used to investigate the epidemiology of this illness, as well as explore attributions based on the name of the illness, and finally treatment approaches. In each of the domains within the ME and CFS research reviewed, our analyses were richer and our findings ultimately more impactful when we integrated qualitative and quantitative research methods. The use of a multiphase mixed methods research program provided our team unique vantage points for better understanding social and community issues involving this controversial chronic illness. Further, this approach allowed us to implement the insights gained through an advocacy lens to change policy, recommend and evaluate treatments, and amplify voices within the patient population. In this way, we believe that the practice of methodological pluralism is especially applicable and effective to the study of chronic illness, and believe other investigators will benefit from the use of these approaches with similar disenfranchised and unfairly treated populations.

Impact of awareness of terminal illness and use of palliative care or intensive care unit on the survival of terminally ill patients with cancer: prospective cohort study.

PubMed

Yun, Young Ho; Lee, Myung Kyung; Kim, Seon Young; Lee, Woo Jin; Jung, Kyung Hae; Do, Young Rok; Kim, Samyong; Heo, Dae Seog; Choi, Jong Soo; Park, Sang Yoon; Jeong, Hyun Sik; Kang, Jung Hun; Kim, Si-Young; Ro, Jungsil; Lee, Jung Lim; Park, Sook Ryun; Park, Sohee

2011-06-20

We conducted this study to evaluate the validity of the perception that awareness of their terminal prognosis and use of palliative care or nonuse of an intensive care unit (ICU) causes patients to die sooner than they would otherwise. In this prospective cohort study at 11 university hospitals and the National Cancer Center in Korea, we administered questionnaires to 619 consecutive patients immediately after they were determined by physicians to be terminally ill. We followed patients during 6 months after enrollment and assessed how their survival was affected by the disclosure of terminal illness and administration of palliative care or nonuse of the ICU. In a follow-up of 481 patients and 163.8 person-years, we identified 466 deceased patients. Nineteen percent of the patients died within 1 month, while 41.3% lived for 3 months, and 17.7% lived for 6 months. Once the cancer was judged terminal, the median survival time was 69 days. On multivariate analysis, neither patient awareness of terminal status at baseline (adjusted hazard ratio [aHR], 1.20; 95% CI, 0.96 to 1.51), use of a palliative care facility (aHR, 0.96; 95% CI, 0.76 to 1.21), nor general prostration (aHR, 1.23; 95% CI, 0.96 to 1.57) was associated with reduced survival. Use of the ICU (aHR, 1.47; 95% CI, 1.06 to 2.05) and poor Eastern Cooperative Oncology Group performance status (aHR, 1.37; 95% CI, 1.10 to 1.71) were significantly associated with poor survival. Patients' being aware that they are dying and entering a palliative care facility or ICU does not seem to influence patients' survival.

[Development in the National Hospice Care Service in Korea].

PubMed

Lee, S W; Lee, E O; Ahn, H S; Heo, D S; Kim, D S; Kim, H S; Lee, H J

1997-01-01

The urgent needs to establish hospice care systems in Korea arise from the following reasons: (1) a drastic increase in chronically ill patients with the increase of aged population: (2) rapid changes in living environment from the traditional habitation (e.g., Many Koreans living in apartment complexes, which is the most popular form of modern residence in recent years, prefer to die in the hospital.): the overall increase in patients with advanced cancer: (4) recent trends in early discharge of terminally ill patients from the limited hospital facilities to accommodate other medical insurance beneficiaries: (5) easy acceptance of euthanasia owing to the recent social atmosphere that belittles the dignity of human life: (6) medical and nursing care of AIDS patient in terminal stage: (7) and the problem associated with inhumane medical care system, overtreatment, and groundless fears against narcotics. Terminally ill patients were used to be treated in the hospital in the past. In these days, however, they are forced to have home cares with little assistance from the qualified medical personnel because of insufficient hospital facilities, which are even short for the need of emergency patients and provide priority cares to medical insurance beneficiaries with other acute problems. And yet, neither are there any administrative organizations nor systematic medical studies that deal with the level of terminally ill patient's need, their family's problems and resources of hospice care systems in Korea. Thus, most patients are not able to get appropriate medical care at the terminal stage of their lives. The objective of this study is to make comprehensive database for various hospice care organization currently in operation, link them through medical information system, and develop an easily accessible hospice care model that meets the need of most Korean people. Our survey results may be summarized as follows: Nationally there are 40 organizations that provide partial or full hospice care. However, these organizations are not linked to any formal medical service network. Furthermore, the objective of hospice care, care principles, personnel with appropriate training, educational programs, standard for care, costs, consulting service to patients' family members, the extent of medical care from professional staff members, status of hospice facility, and management of those institutions are neither clearly defined nor organized compared to the international hospice care standards. The surveys on patients of terminal stage, grouped in hospice and non-hospice care patients, reveal what they want visiting nursing care to help their pain control, psychological, social and spiritual demands. While the more than 90% of hospice care patients want to reduce their pains, the non-hospice care patients, in addition to their desire for pain control, demanded more psychological, social and spiritual helps as well. The results of this research could be utilized to (1) define the standard of hospice care, (2) provide the guidance for hospice medical care costs, (3) establish the database of hospice care systems, (4) develop softwares, (5) build communication network through Medinet, and (6) provide an organized visiting home nursing care system. These information should be a valuable resource to many medical staffs who are involved in cancer therapy, nursing care, and social welfare programs.

Finding boundaries inside prison walls: case study of a terminally ill inmate.

PubMed

O'Connor, Mary-Frances

2004-01-01

The number of terminally ill prison inmates rises each year. Mental health professionals are uniquely prepared to provide therapy during the end-of-life process with their assessment, training, empathy, and communication skills. This case study examines the six-month therapy of one terminally ill inmate, using a client-centered approach. Drawing from existential therapy, the review of meaningful life events in the client's life clarifies current goals and the value of the current final stage of life. Ethical issues that arose are discussed, including pain management and compassionate release. Creative solutions to these ethical dilemmas were implemented through consideration of the overt and underlying goals of the inmate, the necessary rules and protocols of the prison, and in conjunction with professional codes of ethics.

High-quality chronic care delivery improves experiences of chronically ill patients receiving care

PubMed Central

Cramm, Jane Murray; Nieboer, Anna Petra

2013-01-01

Objective Investigate whether high-quality chronic care delivery improved the experiences of patients. Design This study had a longitudinal design. Setting and Participants We surveyed professionals and patients in 17 disease management programs targeting patients with cardiovascular diseases, chronic obstructive pulmonary disease, heart failure, stroke, comorbidity and eating disorders. Main Outcome Measures Patients completed questionnaires including the Patient Assessment of Chronic Illness Care (PACIC) [T1 (2010), 2637/4576 (58%); T2 (2011), 2314/4330 (53%)]. Professionals' Assessment of Chronic Illness Care (ACIC) scores [T1, 150/274 (55%); T2, 225/325 (68%)] were used as a context variable for care delivery. We used two-tailed, paired t-tests to investigate improvements in chronic illness care quality and patients' experiences with chronic care delivery. We employed multilevel analyses to investigate the predictive role of chronic care delivery quality in improving patients' experiences with care delivery. Results Overall, care quality and patients' experiences with chronic illness care delivery significantly improved. PACIC scores improved significantly from 2.89 at T1 to 2.96 at T2 and ACIC-S scores improved significantly from 6.83 at T1 to 7.18 at T2. After adjusting for patients' experiences with care delivery at T1, age, educational level, marital status, gender and mental and physical quality of life, analyses showed that the quality of chronic care delivery at T1 (P < 0.001) and changes in care delivery quality (P < 0.001) predicted patients' experiences with chronic care delivery at T2. Conclusion This research showed that care quality and changes therein predict more positive experiences of patients with various chronic conditions over time. PMID:24123243

Program for the Chronically Ill.

ERIC Educational Resources Information Center

Schoenherr, Arline; Schnarr, Barbara

The program for chronically ill students in the Detroit public schools is described. Forms are presented listing needed information and implications for teachers of the following conditions: diabetes, sickle cell anemia, chronic renal failure, congenital heart disease, hemophilia, rheumatoid arthritis, asthma, leukemia, and cystic fibrosis. The…

Exploring views on satisfaction with life in young children with chronic illness: an innovative approach to the collection of self-report data from children under 11.

PubMed

Christie, Deborah; Romano, Gabriella; Barnes, Jacqueline; Madge, Nicola; Nicholas, David B; Koot, Hans M; Armstrong, Daniel F; Shevlin, Mark; Kantaris, Xenya; Khatun, Hasina; Sutcliffe, Alastair G

2012-01-01

The objective of this study was to explore young children's views on the impact of chronic illness on their life in order to inform future development of a patient-based self-report health outcome measure. We describe an approach to facilitating self-report views from young children with chronic illness. A board game was designed in order to obtain qualitative data from 39 children with a range of chronic illness conditions and 38 healthy controls ranging in age from 3 to 11 years. The format was effective in engaging young children in a self-report process of determining satisfaction with life and identified nine domains. The board game enabled children aged 5-11 years with chronic illness to describe the effects of living with illness on home, family, friends, school and life in general. It generated direct, non-interpreted material from children who, because of their age, may have been considered unable or limited their ability to discuss and describe how they feel. Obtaining this information for children aged 4 and under continues to be a challenge.

The efficacy of a senior outreach program in the reduction of hospital readmissions and emergency department visits among chronically ill seniors.

PubMed

Prior, Michael K; Bahret, Beverly A; Allen, Reva I; Pasupuleti, Sudershan

2012-01-01

This study reports on the effectiveness of a community-based senior outreach program in decreasing rehospitalizations and emergency department visits among chronically ill seniors. Participants had been repeatedly hospitalized with chronic illnesses and were subsequently served in an in-home program designed to address their psychosocial and medical needs. Participation in the program was found to be related to lower hospital readmission rates and emergency department usage. Clients also reported decreased financial concerns and depression and anxiety and increased social support. The study adds to the growing body of work supporting community-based programs as effective strategies for decreasing health care usage and improving quality of life for chronically ill seniors.

Within the web: the family-practitioner relationship in the context of chronic childhood illness.

PubMed

Dickinson, Annette R; Smythe, Elizabeth; Spence, Deb

2006-12-01

This hermeneutic phenomenological study explores the relationship between health professionals and families who have a child with a chronic illness. Study participants included 10 family groups who had a child with a chronic illness and 12 practitioners from the disciplines of nursing, medicine, dietetics, physiotherapy and speech therapy. Data were collected by narrative audiotaped interviewing. The results of this study revealed that chronic childhood illness 'throws' families and practitioners together into a web of relationships, which must work for the sake of the child. However, children are usually excluded from the relationship. To understand and manage the child's illness, practitioners and families 'go around' and act 'in-between' relationships. While the quality of the relationship from the family perspective is not essential, relationships are more successful when practitioners recognize the uniqueness of each family web. The nature of the relationship is often simple, yet it coexists with complexity.

Illness representations as mediators of the relationship between dispositional optimism and depression in patients with chronic tinnitus: a cross-sectional study.

PubMed

Vollmann, Manja; Scharloo, Margreet; Langguth, Berthold; Kalkouskaya, Natallia; Salewski, Christel

2013-01-01

Both dispositional optimism and illness representations are related to psychological health in chronic patients. In a group of chronic tinnitus sufferers, the interplay between these two variables was examined. Specifically, it was tested to what extent the relationship between dispositional optimism and depression is mediated by more positive illness representations. The study had a cross-sectional design. One hundred and eighteen patients diagnosed with chronic tinnitus completed questionnaires assessing optimism (Life Orientation Test-Revised [LOT-R]), illness representations (Illness Perceptions Questionnaire-Revised [IPQ-R]) and depression (Hospital Anxiety and Depression Scale [HADS]). Correlation analysis showed that optimism was associated with more positive illness representations and lower levels of depression. Simple mediation analyses revealed that the relationship between optimism and depression was partially mediated by the illness representation dimensions consequences, treatment control, coherence, emotional representations and internal causes. A multiple mediation analysis indicated that the total mediation effect of illness representations is particularly due to the dimension consequences. Optimism influences depression in tinnitus patients both directly and indirectly. The indirect effect indicates that optimism is associated with more positive tinnitus-specific illness representations which, in turn, are related to less depression. These findings contribute to a better understanding of the interplay between generalised expectancies, illness-specific perceptions and psychological adjustment to medical conditions.

Using Freire's Participatory Educational Method to Understand the Experience of Living With Chronic Illness in the Current Age of Globalization.

PubMed

Camargo Plazas, Maria del Pilar; Cameron, Brenda L

2015-06-01

Many approaches and efforts have been used to better understand chronic diseases worldwide. Yet, little is known about the meaning of living with chronic illness under the pressures of globalization and neoliberal ideologies. Through Freire's participatory educational method, this article presents an innovative approach to understanding the multiple dimensions of living with chronic illness. In this way, we hope to use an innovative approach to address the impact of globalization on the daily life of chronically ill people and thus expand to the body of knowledge on nursing. This article uses Freire's participatory educational method to understand the multiple dimensions of living with chronic illness. This qualitative study follows an interpretive inquiry approach and uses a critical hermeneutic phenomenological method and critical research methodologies. Five participants were recruited for this participatory educational activity. Data collection methods included digitally recorded semistructured individual interviews and a Freire's participatory educational method session. Data analysis included a thematic analysis. Participants reported lacking adequate access to healthcare services because of insurance policies; a general perception that they were an unwanted burden on the healthcare system; and a general lack of government support, advocacy, and political interest. This research activity assisted participants to gain a new critical perspective about the condition of others with chronic diseases and thus provided an enlightening opportunity to learn about the illnesses and experiences of others and to realize that others experienced the same oppression from the healthcare system. Participants became agents of change within their own families and communities. Chronic diseases cause many economic and social consequences in their victims. These findings urge us to move from merely acknowledging the difficulties of people who live with chronic illness in an age of globalization to taking the actions necessary to bring about healthcare, social, and political reform through a process of conscientization and mutual transformation.

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

PubMed

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

2015-06-01

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

Economic hardship associated with managing chronic illness: a qualitative inquiry

PubMed Central

Jeon, Yun-Hee; Essue, Beverley; Jan, Stephen; Wells, Robert; Whitworth, Judith A

2009-01-01

Background Chronic illness and disability can have damaging, even catastrophic, socioeconomic effects on individuals and their households. We examined the experiences of people affected by chronic heart failure, complicated diabetes and chronic obstructive pulmonary disease to inform patient centred policy development. This paper provides a first level, qualitative understanding of the economic impact of chronic illness. Methods Interviews were conducted with patients aged between 45 and 85 years who had one or more of the index conditions and family carers from the Australian Capital Territory and Western Sydney, Australia (n = 66). Content analysis guided the interpretation of data. Results The affordability of medical treatments and care required to manage illness were identified as the key aspects of economic hardship, which compromised patients' capacity to proactively engage in self-management and risk reduction behaviours. Factors exacerbating hardship included ineligibility for government support, co-morbidity, health service flexibility, and health literacy. Participants who were on multiple medications, from culturally and linguistically diverse or Indigenous backgrounds, and/or not in paid employment, experienced economic hardship more harshly and their management of chronic illness was jeopardised as a consequence. Economic hardship was felt among not only those ineligible for government financial supports but also those receiving subsidies that were insufficient to meet the costs of managing long-term illness over and above necessary daily living expenses. Conclusion This research provides insights into the economic stressors associated with managing chronic illness, demonstrating that economic hardship requires households to make difficult decisions between care and basic living expenses. These decisions may cause less than optimal health outcomes and increased costs to the health system. The findings support the necessity of a critical analysis of health, social and welfare policies to identify cross-sectoral strategies to alleviate such hardship and improve the affordability of managing chronic conditions. In a climate of global economic instability, research into the economic impact of chronic illness on individuals' health and well-being and their disease management capacity, such as this study, provides timely evidence to inform policy development. PMID:19818128

Effects of loneliness on illness perception in persons with a chronic disease.

PubMed

Özkan Tuncay, Fatma; Fertelli, Tülay; Mollaoğlu, Mukadder

2018-04-01

To determine the effects of loneliness on illness perception in persons with a chronic disease. How an illness is perceived not only affects all dimensions of a person's life but also plays an important role in his/her coping with the complications and consequences of the disease. One of the factors that influence the illness perception is loneliness. The study is a descriptive study. The study sample included 206 individuals over the 18 years of age, conscious, having had a chronic illness at least 1 year, having no communication problems and agreeing to participate in the study after being informed about the study. Data were collected with the Personal Information Form, the Illness Perception Questionnaire and the University of California Los Angeles Loneliness Scale. The forms were administered to the participants in an unoccupied patient room, and the data were collected through face-to-face interviews. The results of the study revealed that individuals with a chronic disease perceived emotional symptoms accompanying the disease more intensely that they accepted their disease was a chronic one and that their personal control and treatment control of the disease were at a middle level. The mean score the participants obtained from the University of California Los Angeles Loneliness Scale was 38.49 ± 11.15. There was a significant negative correlation between this mean score and the mean scores obtained from the following subscales consequences, treatment control, illness perception and emotional representations. In this study, it was concluded that the participants perceived their loneliness level as moderate and that their illness perception was negatively affected as their loneliness levels increased. The knowledge of clinical nurses about perception of patients with chronic illnesses and conditions affecting that perception will enhance compliance with the illness management or treatment strategies. Clinical nurses should observe residents closely for signs of depression and loneliness and support their sense of coherence to reduce emotional and social loneliness. © 2018 John Wiley & Sons Ltd.

[Terminal sedation: consultation with a second physician as is the case in euthanasia and assisted suicide].

PubMed

Ponsioen, B P; Schuurman, W H A Elink; van den Hurk, A J P M; van der Poel, B N M; Runia, E H

2005-02-26

In terminally-ill patients in the Netherlands deep sedation by means of a continuous subcutaneous infusion with midazolam occurs more frequently than euthanasia and assisted suicide. Deep terminal sedation is applied to relieve symptoms during the phase of dying, but in contrast to euthanasia and assisted suicide, does not hasten death. In three terminally-ill patients, a 65-year-old man suffering from pulmonary carcinoma, a 94-year-old woman with general malaise, nausea and anorexia, and a 79-year-old woman in the final stage of ovarian carcinoma, a general-practitioner advisor was consulted about an end-of-life decision--deep terminal sedation versus euthanasia or assisted suicide. The first two patients were given deep sedation until death, in both cases a day and a half later. The third patient's request for euthanasia was considered to meet the legal criteria for euthanasia. Compliance with the Dutch statutory criteria for due care in euthanasia and assisted suicide might also be helpful when deciding about terminal deep sedation, but the role and responsibility of the attending physician may differ. However, the radical effects of sedation on the terminally-ill patient and the rapid changes in the clinical situation of the patient when the decision to sedate is taken, both emphasize the need for consultation with another physician.

Understanding stigma in chronic health conditions: implications for nursing.

PubMed

Engebretson, Joan

2013-10-01

This article explores the social processes in stigmatization and the theoretical background on the impact in chronic illness. Review of literature from social sciences and applications to health issues. Understanding the social utility of stigmatization in preserving social cohesion and protecting the social order is an important function. However, this process can be harmful when applied to persons with chronic illness, such as HIV-AIDS, and psychiatric illness. These individuals often become shamed, ostracized, isolated, discredited, and socially and economically marginalized. Recent theoretical work on stigma has identified several issues and patient responses that may have implications in many other chronic conditions. Stigma is based on visible or nonvisible health conditions and can be both externally imposed or perceived in a process of self-stigma. Understanding stigma can aid clinicians in providing supportive help for patients with chronic illness. Stigma has been well researched in a few chronic illnesses; however, future studies in other conditions are much needed. Recognizing the underlying social factors has potential use in health-promoting behaviors. Sensitivity to stigma allows health professionals to critically reflect on ways the healthcare environment may add to stigma for their patients. ©2013 The Author(s) ©2013 American Association of Nurse Practitioners.

Illness Perception and Information Behaviour of Patients with Rare Chronic Diseases

ERIC Educational Resources Information Center

Katavic, Snježana Stanarevic; Tanackovic, Sanjica Faletar; Badurina, Boris

2016-01-01

Introduction: This study examined possible correlations between health information behaviour and illness perception among patients with rare chronic diseases. Illness perception is related to coping strategies used by patients, and some health information behaviour practices may be associated with better coping and more positive perception of…

A Therapeutic Approach for Treating Chronic Illness and Disability among College Students

ERIC Educational Resources Information Center

Haemmelmann, Katie L.; McClain, Mary-Catherine

2013-01-01

Research in chronic illness and disability (CID) in college students has demonstrated that students with disabilities encounter more difficulties psychosocially than their nondisabled counterparts. Subsequently, these difficulties impact the ability of these students to successfully adapt. Using the illness intrusiveness model in combination with…

Coping strategies in episodic and chronic tension-type headache.

PubMed

Rollnik, J D; Karst, M; Fink, M; Dengler, R

2001-03-01

To study the importance of coping with illness strategies in tension-type headache (TTH). The pathophysiology of TTH is complex, and coping with illness strategies might contribute to the transformation to a chronic form. We examined 89 subjects (mean age, 45.6 +/- 14.8 years; range, 18 to 72 years) with episodic (n = 37) and chronic (n = 52) TTH. Patients were required to fill in a Freiburg Questionnaire of Coping with Illness (FQCI), a von Zerssen Depression Scale, quality-of-life questionnaires, and a headache home diary (over 4 weeks). In addition, pressure pain thresholds (temporal muscles) and total tenderness scores were obtained. Patients with chronic TTH exhibited poorer quality-of-life measures, slightly more depressive symptoms, and significantly stronger avoidance behavior and endurance strategies on FQCI scales F4 and F5 (P< .05). There was no difference between episodic and chronic TTH with respect to measures of muscle tenderness or pain thresholds. We conclude that disadvantageous coping with illness strategies might contribute to a transformation to chronic TTH.

The anatomy and physiology of the terminal thoracic duct and ostial valve in health and disease: potential implications for intervention.

PubMed

Ratnayake, Chathura Bathiya Bandara; Escott, Alistair Brian James; Phillips, Anthony Ronald John; Windsor, John Albert

2018-07-01

The thoracic duct (TD) transports lymph drained from the body to the venous system in the neck via the lymphovenous junction. There has been increased interest in the TD lymph (including gut lymph) because of its putative role in the promotion of systemic inflammation and organ dysfunction during acute and critical illness. Minimally invasive TD cannulation has recently been described as a potential method to access TD lymph for investigation. However, marked anatomical variability exists in the terminal segment and the physiology regarding the ostial valve and terminal TD is poorly understood. A systematic review was conducted using three databases from 1909 until May 2017. Human and animal studies were included and data from surgical, radiological and cadaveric studies were retrieved. Sixty-three articles from the last 108 years were included in the analysis. The terminal TD exists as a single duct in its terminal course in 72% of cases and 13% have multiple terminations: double (8.5%), triple (1.8%) and quadruple (2.2%). The ostial valve functions to regulate flow in relation to the respiratory cycle. The patency of this valve found at the lymphovenous junction opening, is determined by venous wall tension. During inspiration, central venous pressure (CVP) falls and the valve cusps collapse to allow antegrade flow of lymph into the vein. During early expiration when CVP and venous wall tension rises, the ostial valve leaflets cover the opening of the lymphovenous junction preventing antegrade lymph flow. During chronic disease states associated with an elevated mean CVP (e.g. in heart failure or cirrhosis), there is a limitation of flow across the lymphovenous junction. Although lymph production is increased in both heart failure and cirrhosis, TD lymph outflow across the lymphovenous junction is unable to compensate for this increase. In conclusion the terminal TD shows marked anatomical variability and TD lymph flow is controlled at the ostial valve, which responds to changes in CVP. This information is relevant to techniques for cannulating the TD, with the aid of minimally invasive methods and high resolution ultrasonography, to enable longitudinal physiology and lymph composition studies in awake patients with both acute and chronic disease. © 2018 Anatomical Society.

Pilot undergraduate course teaches students about chronic illness in children: an educational intervention study.

PubMed

Montenegro, Roberto E; Birnie, Krista D; Fisher, Paul Graham; Dahl, Gary V; Binkley, John; Schiffman, Joshua D

2014-01-01

Recent data question whether medical education adequately prepares physicians to care for the growing number of children with chronic medical conditions. We describe a 10-week course designed to provide undergraduate students with the knowledge and skills required to understand and care for children with chronic or catastrophic illnesses. The course presented the illness experience from the child's perspective and thus presented information in a manner that was efficient, conducive, and memorable. The curriculum was designed like a graduate-level seminar that included workshops, lectures, readings, writing, and lively discussions. This is an educational intervention study that used survey data to assess changes in attitudes among and between participants completing this course versus students not exposed to this course. We used Somers' D test and Fisher's z-transformation to perform both pre- and post-nonparametric comparisons. Course participants were more likely to change their attitudes and agree that chronically ill children "feel comfortable talking with their peers about their condition" (P=0.003) and less likely to agree that these children "want to be treated differently," "want more sympathy," or "care less about romantic relationships" (P = 0.003, 0.002 and 0.02, respectively). Controls were more likely to continue to agree that chronically ill children "want to be treated differently" (P = 0.009) and "care less about romantic relationships" (P = 0.02), and less likely to agree that these children "talk openly" or "feel comfortable talking with their peers about their condition" (P = 0.04). This classroom-based course serves as a feasible and cost-effective model for universities and medical schools to aid in improving student attitudes toward treating chronically ill children. The course provides the unique opportunity to learn directly from those who care for and those who have lived with chronic illness.

Understanding the school experiences of children and adolescents with serious chronic illness: a systematic meta-review.

PubMed

Lum, A; Wakefield, C E; Donnan, B; Burns, M A; Fardell, J E; Marshall, G M

2017-09-01

Serious chronic illness can have a detrimental effect on school attendance, participation and engagement, leaving affected students at risk of failing to meet their developmental potential. An improved understanding of factors that help to explain or mitigate this risk can help educators and health professionals deliver the most effective support. This meta-review critiqued the available evidence examining the link between six chronic illnesses (asthma, cancer, chronic kidney diseases, heart diseases, cystic fibrosis and gastrointestinal diseases) and children's and adolescents' school experiences and outcomes, as well as investigating the medical, school, psychosocial and sociodemographic factors that are linked to poorer or better school outcomes. We searched CINAHL, Cochrane Database, EMBASE, ERIC, MEDLINE, ProQuest Theses and Dissertations, and PsycINFO (2000-2015). Systematic and narrative reviews, and meta-analyses, of original studies examining students' subjective school experiences and objective school outcomes were eligible. We used the Preferred Reporting Items for Systematic Reviews and Meta-analyses criteria to critically appraise all systematic reviews. The Grading of Recommendations Assessment, Development, and Evaluation system guided our recommendations for practice and research. Eighteen reviews of 172 studies including more than 40 000 students were eligible. Therefore, we chose to conduct a meta-review to provide an overview of the literature on the relationship between chronic illness and school experiences and outcomes. We also explored the associated medical, school, psychosocial and sociodemographic factors affecting the relationship between illness and school experiences and outcomes. Students with chronic illness demonstrate mixed school experiences and outcomes that are often worse than students without chronic illness. Modifiable factors, such as students' engagement with school, may be novel yet appropriate targets of educational support to ensure that these students reach their full schooling potential. © 2017 John Wiley & Sons Ltd.

Patients understanding of depression associated with chronic physical illness: a qualitative study

PubMed Central

2014-01-01

Background Detection of depression can be difficult in primary care, particularly when associated with chronic illness. Patient beliefs may affect detection and subsequent engagement with management. We explored patient beliefs about the nature of depression associated with physical illness. Methods A qualitative interview study of patients registered with general practices in Leeds, UK. We invited patients with coronary heart disease or diabetes from primary care to participate in semi-structured interviews exploring their beliefs and experiences. We analysed transcripts using a thematic approach, extended to consider narratives as important contextual elements. Results We interviewed 26 patients, including 17 with personal experience of depression. We developed six themes: recognising a problem, complex causality, the role of the primary care, responsibility, resilience, and the role of their life story. Participants did not consistently talk about depression as an illness-like disorder. They described a change in their sense of self against the background of their life stories. Participants were unsure about seeking help from general practitioners (GPs) and felt a personal responsibility to overcome depression themselves. Chronic illness, as opposed to other life pressures, was seen as a justifiable cause of depression. Conclusions People with chronic illness do not necessarily regard depression as an easily defined illness, especially outside of the context of their life stories. Efforts to engage patients with chronic illness in the detection and management of depression may need further tailoring to accommodate beliefs about how people view themselves, responsibility and negative views of treatment. PMID:24555886

Race, unemployment rate, and chronic mental illness: a 15-year trend analysis.

PubMed

Lo, Celia C; Cheng, Tyrone C

2014-07-01

Before abating, the recession of the first decade of this century doubled the US unemployment rate. High unemployment is conceptualized as a stressor having serious effects on individuals' mental health. Data from surveys administered repeatedly over 15 years (1997-2011) described changes over time in the prevalence of chronic mental illness among US adults. The data allowed us to pinpoint changes characterizing the White majority--but not Black, Hispanic, or Asian minorities--and to ask whether such changes were attributable to economic conditions (measured via national unemployment rates). We combined 1.5 decades' worth of National Health Interview Survey data in one secondary analysis. We took social structural and demographic factors into account and let adjusted probability of chronic mental illness indicate prevalence of chronic mental illness We observed, as a general trend, that chronic mental illness probability increased as the unemployment rate rose. A greater increase in probability was observed for Blacks than Whites, notably during 2007-2011, the heart of the recession Our results confirmed that structural risk posed by the recent recession and by vulnerability to the recession's effects was differentially linked to Blacks. This led to the group's high probability of chronic mental illness, observed even when individual-level social structural and demographic factors were controlled. Future research should specify the particular kinds of vulnerability that created the additional disadvantage experienced by Black respondents.

Racial and ethnic differences in advance care planning among patients with cancer: impact of terminal illness acknowledgment, religiousness, and treatment preferences.

PubMed

Smith, Alexander K; McCarthy, Ellen P; Paulk, Elizabeth; Balboni, Tracy A; Maciejewski, Paul K; Block, Susan D; Prigerson, Holly G

2008-09-01

Despite well-documented racial and ethnic differences in advance care planning (ACP), we know little about why these differences exist. This study tested proposed mediators of racial/ethnic differences in ACP. We studied 312 non-Hispanic white, 83 non-Hispanic black, and 73 Hispanic patients with advanced cancer in the Coping with Cancer study, a federally funded multisite prospective cohort study designed to examine racial/ethnic disparities in ACP and end-of-life care. We assessed the impact of terminal illness acknowledgment, religiousness, and treatment preferences on racial/ethnic differences in ACP. Compared with white patients, black and Hispanic patients were less likely to have an ACP (white patients, 80%; black patients, 47%; Hispanic patients, 47%) and more likely to want life-prolonging care even if he or she had only a few days left to live (white patients, 14%; black patients, 45%; Hispanic patients, 34%) and to consider religion very important (white patients, 44%; black patients, 88%; Hispanic patients, 73%; all P < .001, comparison of black or Hispanic patients with white patients). Hispanic patients were less likely and black patients marginally less likely to acknowledge their terminally ill status (white patients, 39% v Hispanic patients, 11%; P < .001; white v black patients, 27%; P = .05). Racial/ethnic differences in ACP persisted after adjustment for clinical and demographic factors, terminal illness acknowledgment, religiousness, and treatment preferences (has ACP, black v white patients, adjusted relative risk, 0.64 [95% CI, 0.49 to 0.83]; Hispanic v white patients, 0.65 [95% CI, 0.47 to 0.89]). Although black and Hispanic patients are less likely to consider themselves terminally ill and more likely to want intensive treatment, these factors did not explain observed disparities in ACP.

Oral health conditions affect functional and social activities of terminally-ill cancer patients

PubMed Central

Fischer, D.J.; Epstein, J.B.; Yao, Y.; Wilkie, D.J.

2013-01-01

Purpose Oral conditions are established complications in terminally-ill cancer patients. Yet despite significant morbidity, the characteristics and impact of oral conditions in these patients are poorly documented. The study objective was to characterize oral conditions in terminally-ill cancer patients to determine the presence, severity, and the functional and social impact of these oral conditions. Methods This was an observational clinical study including terminally-ill cancer patients (2.5–3 week life expectancy). Data were obtained via the Oral Problems Scale (OPS) that measures the presence of subjective xerostomia, orofacial pain, taste change, and the functional/social impact of oral conditions and a demographic questionnaire. A standardized oral examination was used to assess objective salivary hypofunction, fungal infection, mucosal erythema, and ulceration. Regression analysis and t test investigated the associations between measures. Results Of 104 participants, most were ≥50 years of age, female, and high-school educated; 45% were African American, 43% Caucasian, and 37% married. Oral conditions frequencies were: salivary hypofunction (98%), mucosal erythema (50%), ulceration (20%), fungal infection (36%), and other oral problems (46%). Xerostomia, taste change, and orofacial pain all had significant functional impact; p<.001, p=.042 and p<.001, respectively. Orofacial pain also had a significant social impact (p<.001). Patients with oral ulcerations had significantly more orofacial pain with a social impact than patients without ulcers (p=.003). Erythema was significantly associated with fungal infection and with mucosal ulceration (p<.001). Conclusions Oral conditions significantly affect functional and social activities in terminally-ill cancer patients. Identification and management of oral conditions in these patients should therefore be an important clinical consideration. PMID:24232310

Perceptions of chronically ill and healthy consumers about electronic personal health records: a comparative empirical investigation.

PubMed

Cocosila, Mihail; Archer, Norm

2014-07-23

To develop a model of consumer perceptions of electronic personal health records (PHRs) and validate it in a comparative study between consumers who report having a chronic illness and those who report being well. A model of PHR use motivators and barriers was built and tested through a national survey across Canada. Data were collected from 800 individuals, 18 years or older. Half reported having a chronic illness or disability and half reported being well. Analyses were performed with structural equation modelling techniques. A total of 389 answers from chronically ill and 383 from well participants were collected. Perceived usefulness was the key explanation of the intention to use PHRs for both ill and well people (total effect of 0.601 and 0.565, respectively) followed by security, privacy and trust in PHRs (total effect of 0.377 and 0.479, respectively). Conversely, computer anxiety was perceived as a significant barrier (total effect of -0.327 for ill individuals and -0.212 for well individuals). The model proposed was appropriate in explaining key consumer positive and negative perceptions on electronic PHR use. We found little difference in perceptions of electronic PHRs between chronically ill and well individuals, although self-reporting their health status might have influenced the results. To increase the adoption rate of electronic PHRs among both chronically ill and well consumers it is necessary to reinforce consumer perceptions of the usefulness of and trust in these eHealth technologies while mitigating their anxieties about computer use in general. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

Experiences of coexisting with chronic illnesses among elderly women in communities.

PubMed

Chang, Yu-Mei; Tsao, Lee-Ing; Huang, Min-His

2014-01-01

Based on the increasing numbers of women in the aging population, the health of women will become critical in the future. Our purpose in this study was to analyze the experiences of elderly women with chronic illness. Twelve elderly Taiwanese women participated in in-depth interviews. "Using my own power out of the disease shackle" was the core category referring to elderly women who coexist with chronic illnesses. Elderly women should be provided with individually targeted plans for disease management and health maintenance to enable them to participate in health care decisions at the onset of chronic diseases.

The private struggle of mothers with asthma: a gender perspective on illness management.

PubMed

van Mens-Verhulst, Janneke; Radtke, H Lorraine; Spence, Cheryl D

2004-07-01

Little attention has been paid to the specific problems of mothers with chronic illness. In this study of mothers with asthma, we asked the question: "how do they manage their illness"? We interviewed a purposive sample of four Dutch and four Canadian mothers living with asthma and varying in age and socio-economic class. Our analysis explored challenges the mothers face, three main strategies of non-medical illness management (prevention, normalization and mobilizing support), and the influence of age and class differences. Unhealthy cycles of living with asthma are identified and suggestions for mother-specific interventions are offered. By drawing attention to the gendered nature of chronic illness management and to patients' own experiences, a more useful frame of reference is created for professionals who do not have first hand knowledge of living with a chronic illness.

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

PubMed

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

1993-10-01

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

Association between nutritional status and subjective health status in chronically ill children attending special schools.

PubMed

Joosten, Koen; van der Velde, Kelly; Joosten, Pieter; Rutten, Hans; Hulst, Jessie; Dulfer, Karolijn

2016-04-01

In hospitalized children with a chronic disease, malnutrition was associated with a lower subjective health status. In outpatient children with a chronic disease attending special schools, this association has never been studied. The aim of this study was to assess the association between nutritional status and subjective health status in chronically ill children attending special schools. Overall, 642 children, median age 9.8 years (IQR 7.7-11.5), 60 % male, 72 % Caucasian, were included in this prospective study in nine special schools for chronically ill children in the Netherlands. Overall malnutrition was assessed as: acute malnutrition (<-2 SDS for weight for height (WFH)) and chronic malnutrition (<-2 SDS for height for age). The malnutrition risk was assessed with the nutritional risk-screening tool STRONGkids. Subjective health status was assessed with EQ-5D. Overall, 16 % of the children had overall malnutrition: 3 % acute and 13 % chronic malnutrition. Nurses reported 'some/severe problems' on the health status dimensions mobility (15 %), self-care (17 %), usual activities (19 %), pain/discomfort (22 %), and anxiety/depression (22 %) in chronically ill children. Their mean visual analogue scale score (VAS) was 73.0 (SD 11.1). Malnutrition, medication usage, and younger age explained 38 % of the variance of the VAS score. The presence of overall malnutrition in chronically ill children attending special schools was associated with lower subjective health status, especially in younger children and in those with chronic medication usage. Therefore, it is important to develop and use profile-screening tools to identify these children.

Childhood trauma and chronic illness in adulthood: mental health and socioeconomic status as explanatory factors and buffers.

PubMed

Mock, Steven E; Arai, Susan M

2010-01-01

Experiences of traumatic events in childhood have been shown to have long-term consequences for health in adulthood. With data from the 2005 Canadian Community Health Survey we take a life course perspective of cumulative disadvantage and examine the potential role of mental health and socioeconomic status in adulthood as multiple mediators of the link between childhood trauma and chronic illness in adulthood. Mental health and socioeconomic status are also tested as buffers against the typically adverse consequences of childhood trauma. The results suggest mental health and socioeconomic status partially explain the association of childhood trauma with chronic illness in adulthood, with mental health showing a stronger effect. In addition, an analysis of the interactions suggested higher socioeconomic status is a potential protective factor for those with a history of trauma. Results also suggest cumulative disadvantage following trauma may lead to chronic illness and suggest the need for public health expenditures on resources such as counseling and income supports to prevent or reduce psychological harm and chronic illness resulting from traumatic events.

Rethinking 'risk' and self-management for chronic illness.

PubMed

Morden, Andrew; Jinks, Clare; Ong, Bie Nio

2012-02-01

Self-management for chronic illness is a current high profile UK healthcare policy. Policy and clinical recommendations relating to chronic illnesses are framed within a language of lifestyle risk management. This article argues the enactment of risk within current UK self-management policy is intimately related to neo-liberal ideology and is geared towards population governance. The approach that dominates policy perspectives to 'risk' management is critiqued for positioning people as rational subjects who calculate risk probabilities and act upon them. Furthermore this perspective fails to understand the lay person's construction and enactment of risk, their agenda and contextual needs when living with chronic illness. Of everyday relevance to lay people is the management of risk and uncertainty relating to social roles and obligations, the emotions involved when encountering the risk and uncertainty in chronic illness, and the challenges posed by social structural factors and social environments that have to be managed. Thus, clinical enactments of self-management policy would benefit from taking a more holistic view to patient need and seek to avoid solely communicating lifestyle risk factors to be self-managed.

77 FR 64597 - Proposed Information Collection (Survey of Chronic Gastrointestinal Illness in Persian Gulf...

Federal Register 2010, 2011, 2012, 2013, 2014

2012-10-22

... information needed to evaluate chronic gastrointestinal disorders in Persian Gulf War Veterans. DATES: Written... deployed in the first Persian Gulf War returned with persistent gastrointestinal symptoms, typical of... of Chronic Gastrointestinal Illness in Persian Gulf Veterans (Irritable Bowel Syndrome--Diarrhea...

Modifiable correlates of illness perceptions in adults with chronic somatic conditions: A systematic review.

PubMed

Arat, Seher; De Cock, Diederik; Moons, Philip; Vandenberghe, Joris; Westhovens, René

2018-04-01

When individuals become ill, they want to understand and give meaning to their illness. The interpretation of this illness experience, or illness perception, is influenced by a range of individual, contextual, and cultural factors. Some of these factors may be modifiable by nursing interventions. The purpose of this systematic review was to investigate which modifiable factors were correlated with illness perceptions across studies of adults with different chronic somatic diseases. Using search terms tailored to each of four electronic databases, studies retrieved were reviewed by two independent evaluators, and each relevant article was assessed for methodological quality. Results were standardized by calculating correlation coefficients. Fifteen papers on illness perceptions in a variety of chronic diseases met the inclusion criteria. All used standardized measures of illness perceptions. We identified five groups of modifiable correlates of illness perceptions: illness-related factors, psychosocial factors, medication beliefs, information provision and satisfaction with information received, and quality of care. Our findings add to the knowledge of modifiable factors correlated with illness perceptions, including the importance of illness-related factors and psychosocial factors such as anxiety and depression. Knowledge of these correlates can facilitate understanding of patients' illness perceptions and might be useful in tailoring patient education programs. © 2018 Wiley Periodicals, Inc.

Effect of nutritional support on terminally ill patients with cancer in a palliative care unit.

PubMed

Amano, Koji; Morita, Tatsuya; Baba, Mika; Kawasaki, Muneyoshi; Nakajima, Shinichiro; Uemura, Minako; Kobayashi, Yuka; Hori, Moeko; Wakayama, Hiroshi

2013-11-01

The role of nutritional support on terminally ill patients with cancer in a palliative care unit has not been clarified. A total of 63 patients were retrospectively investigated; the patients receiving individualized nutritional support (intervention group [n = 22]) were compared to the others (control group [n = 41]). The intervention group received individualized nutritional support. There were no significant differences in the characteristics of patients between the groups. The prevalence of bedsores was significantly lower in the intervention group (14% vs 46%, P = .012). The prevalence of edema and the use of antibiotic therapies tended to be lower in the intervention group than in the control group (36% vs 54%, P = .19; 14% vs 27%, P = .34, respectively). Some terminally ill patients with cancer in a palliative care unit might benefit from nutritional support.

Perceived conflict in the couple and chronic illness management: preliminary analyses from the Quebec Health Survey.

PubMed

Soubhi, Hassan; Fortin, Martin; Hudon, Catherine

2006-10-19

The quality of the relationship with the spouse/partner appears crucial among patients with multiple chronic conditions where illness management is complex and multifaceted. This study draws on data from the Quebec Health Survey (QHS) to examine, among patients with one or more chronic conditions, the relation between marital status, the perceived conflict with the spouse/partner, and what the patients do to manage their illness as well as how they perceive their health. Data from the QHS 1998 were used. The sample included 7547 coupled adults who had one or more chronic health problems lasting more than 6 months. Independent variables included marital status, perceived conflict with the spouse/partner, and the number of chronic conditions. Illness management was defined broadly as a measure of the patient's efforts at self-care and an illness status indicator, including visits to the generalist and the specialist, the use of telephone health line in the last 12 months, self-rated general health, mental health, and a measure of psychological distress. Linkages between the independent variables and illness management were assessed for males and females separately with logistic regressions, while accounting for the survey sampling design and household clustering. Female patients who did not live with their partner and had never been married were more likely to report a negative perception of their general health and a higher psychological distress than those who were married. Perceived conflict with the partner was linked to a negative perception of mental health and a higher psychological distress among both men and women. Compared to patients with only one chronic condition, males who reported more than one chronic condition were more likely to have consulted a generalist prior to the survey and used the telephone health line, whereas females were more likely to have consulted a specialist. Both males and females with more than one chronic condition were more likely to have a negative perception of their general health and mental health. The study provides a useful preliminary measure of the importance of living arrangements and the quality of the couple relationship in chronic illness management broadly conceived as a measure of the patient's efforts at self-care and an illness status indicator. Results of this study prod us to examine more closely, within longitudinal designs, the influence of living arrangements and the presence of conflict in the couple on chronic illness management as well as the modifying effect of gender on these associations.

Mothers' Attributions Regarding the Behavior of Chronically Ill Children.

ERIC Educational Resources Information Center

Walker, Lynn S.

Parents of chronically ill children are faced with the difficult task of being vigilant and yet not overprotective of their children. The literature suggests that parents hold a positive bias toward their ill children. Attribution theory gives a framework in which to study parents' ideas about their children's behavior. A study was conducted to…

Health, Health Beliefs, and Body Image in School-Aged Girls.

ERIC Educational Resources Information Center

Johnson, Melissa Ramirez

When Spielberger's State-Trait Anxiety Scale was administered to 26 healthy and 26 chronically ill children, it was found that the chronically ill were significantly more anxious than the healthy. Results also suggested that the question of sex differences in children's emotional response to illness deserves further investigation in studies…

A Dyadic Approach: Applying a Developmental-Conceptual Model to Couples Coping with Chronic Illness

ERIC Educational Resources Information Center

Checton, Maria G.; Magsamen-Conrad, Kate; Venetis, Maria K.; Greene, Kathryn

2015-01-01

The purpose of the present study was to apply Berg and Upchurch's developmental-conceptual model toward a better understanding of how couples cope with chronic illness. Specifically, a model was hypothesized in which proximal factors (relational quality), dyadic appraisal (illness interference), and dyadic coping (partner support) influence…

Profiles of Chronic Illness Knowledge in a Community Sample of American Adults

ERIC Educational Resources Information Center

Jackson, Todd

2009-01-01

The author identified profiles of chronic illness knowledge (i.e., heart disease, cancer, diabetes) in a community sample of American adults and examined the effect of sociodemographic influences on relations of illness knowledge to health practices and well-being. Participants were 181 women and 120 men who completed measures of illness…

Patients With Hepatocellular Carcinoma Near the End of Life: A Longitudinal Qualitative Study of Their Illness Experiences.

PubMed

Hansen, Lissi; Rosenkranz, Susan J; Vaccaro, Gina M; Chang, Michael F

2015-01-01

In the United States, the incidence of hepatocellular carcinoma (HCC) is rising. For those diagnosed with terminal HCC, there is no curative treatment and duration of survival is typically 1 to 2 years. Research on illness and treatment experiences toward the end of life for patients with terminal HCC is limited. The aim of this study was to explore the illness experiences of patients with terminal HCC as they approached the end of life. This study used a prospective, longitudinal descriptive design. Interview data were collected from 14 patients once a month for up to 6 months, for a total of 45 interviews. Data were analyzed using conventional content analysis. Three major themes (illness perceptions, decision to start treatment, and navigating treatment over time) and 10 subthemes were identified that were reflected across time in all patient experiences. Patients faced challenges with symptom experiences, treatment decisions, and unmet information needs affecting their quality of life. Gaining knowledge about the challenges facing patients with HCC is crucial for designing interventions that optimize their quality of life. Healthcare professionals may improve the quality of life of patients with terminal HCC by eliciting patients' perceptions of their illness and treatment decisions, symptom experiences, and information needs as the disease progresses and providing symptom management and offering information tailored to their needs. Care for patients with HCC who are approaching the end of life should be multidisciplinary and include timely referral to palliative care.

Return Migration among Elderly, Chronically Ill Bosnian Refugees: Does Health Matter?

PubMed Central

Handlos, Line Neerup; Olwig, Karen Fog; Bygbjerg, Ib Christian; Kristiansen, Maria; Norredam, Marie Louise

2015-01-01

Elderly migrants constitute a considerable share of global return migration; nevertheless, literature on the health aspects of the return migration among these migrants is still scarce. This study explores the significance of return migration among elderly, chronically ill Bosnian refugees from Denmark and the role of health issues in their decision to return. It is based on semi-structured interviews with 33 elderly, chronically ill Bosnian refugees who have moved back to Bosnia and Herzegovina, and 10 elderly, chronically ill Bosnian refugees who have remained in Denmark. The interviews show that physical health, in the sense of the absence of illness and easy access to necessary health-care services and medicines, was not highly prioritized when the decision was made whether or not to return. However, if health is regarded more broadly as involving more than mere physical health and the absence of illness, health did matter. Viewed as physical, social and mental well-being in line with WHO’s definition of health, health was indeed one of the most important factors when the decision to return was made. PMID:26473899

Return Migration among Elderly, Chronically Ill Bosnian Refugees: Does Health Matter?

PubMed

Handlos, Line Neerup; Olwig, Karen Fog; Bygbjerg, Ib Christian; Kristiansen, Maria; Norredam, Marie Louise

2015-10-12

Elderly migrants constitute a considerable share of global return migration; nevertheless, literature on the health aspects of the return migration among these migrants is still scarce. This study explores the significance of return migration among elderly, chronically ill Bosnian refugees from Denmark and the role of health issues in their decision to return. It is based on semi-structured interviews with 33 elderly, chronically ill Bosnian refugees who have moved back to Bosnia and Herzegovina, and 10 elderly, chronically ill Bosnian refugees who have remained in Denmark. The interviews show that physical health, in the sense of the absence of illness and easy access to necessary health-care services and medicines, was not highly prioritized when the decision was made whether or not to return. However, if health is regarded more broadly as involving more than mere physical health and the absence of illness, health did matter. Viewed as physical, social and mental well-being in line with WHO's definition of health, health was indeed one of the most important factors when the decision to return was made.

The use of mixed methods in studying a chronic illness

PubMed Central

Jason, Leonard A.; Reed, Jordan

2016-01-01

This article explores mixed methods approaches with an illness called Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). Qualitative and Quantitative data were used to investigate the epidemiology of this illness, as well as explore attributions based on the name of the illness, and finally treatment approaches. In each of the domains within the ME and CFS research reviewed, our analyses were richer and our findings ultimately more impactful when we integrated qualitative and quantitative research methods. The use of a multiphase mixed methods research program provided our team unique vantage points for better understanding social and community issues involving this controversial chronic illness. Further, this approach allowed us to implement the insights gained through an advocacy lens to change policy, recommend and evaluate treatments, and amplify voices within the patient population. In this way, we believe that the practice of methodological pluralism is especially applicable and effective to the study of chronic illness, and believe other investigators will benefit from the use of these approaches with similar disenfranchised and unfairly treated populations. PMID:27088060

Disability Risks of Chronic Illnesses and Impairments. Disability Statistics Report 2.

ERIC Educational Resources Information Center

LaPlante, Mitchell P.

This report provides results from an investigation of comparative disability risks of specific chronic physical and mental illnesses, diseases, and impairments. National estimates are presented of the risks of chronic health conditions causing disability--including activity limitation, work disability, and need for assistance in basic life…

Dying at home: experience of the Verdun local community service centre.

PubMed

Kiyanda, Brigitte Gagnon; Dechêne, Geneviève; Marchand, Robert

2015-04-01

To demonstrate that it is possible for a team of palliative care nurses in an urban centre to care for more than 50% of their terminally ill patients at home until they die, and that medical care delivered in the home is a determining factor in death at home versus death in a hospital. Analysis of place of death of terminally ill patients who died in 2012 and 2013 (N = 212) and who had been cared for by palliative care nurses, by type of medical care. The centre local de services communautaires (CLSC) in Verdun, Que, an urban neighbourhood in southwest Montreal. A total of 212 terminally ill patients. Rate of deaths at home. Of the 212 patients cared for at home by palliative care nurses, 56.6% died at home; 62.6% received medical home care from CLSC physicians, compared with 5.0% who did not receive medical home care from any physician. Combined with a straightforward restructuring of the nursing care delivered by CLSCs, development of medical services delivered in the home would enable the more than 50% of terminally ill patients in Quebec who are cared for by CLSCs to die at home--something that most of them wish for. Copyright© the College of Family Physicians of Canada.

The impact of loneliness on the relationship between depression and pain of Hong Kong Chinese terminally ill patients.

PubMed

Chan, Wallace Chi Ho; Kwan, Chi Wai; Chi, Iris; Chong, Alice Ming Lin

2014-05-01

Depression and pain often coexist in terminally ill patients, but few studies have examined their relationship among larger samples. Other psychosocial factors experienced by patients may become barriers to pain management and affect the relationship between depression and pain. This study aims to examine the relationship between depression and pain in terminally ill Chinese elders in Hong Kong and explore the moderating effect of psychosocial factors such as loneliness, communication, and being at ease interacting with others. A secondary data analysis was conducted on a large cohort of community-dwelling Chinese elders applying for long-term care service in Hong Kong between 2004 and 2009. A total of 312 elders who had a prognosis of less than 6 months were included. Depression was associated positively and significantly with pain. However, loneliness moderated this relationship, and for participants who felt lonely, depression and pain were no longer significantly associated. Findings support the positive relationship between depression and pain in terminally ill elders. Feeling lonely may affect the tendency to report pain. To ensure optimal pain management for patients in palliative and end-of-life care, assessment and intervention should focus on the impact of psychosocial factors such as loneliness, and how they may affect elders' reporting of pain.

Current approaches to helping children cope with a parent's terminal illness.

PubMed

Christ, Grace H; Christ, Adolph E

2006-01-01

Much has been learned about childhood bereavement in the last few decades as studies have increasingly focused on the direct interviewing of children about their recovery from the tragic loss of a parent. It has been shown that children do indeed mourn, although differently from adults. Important moderating and mediating variables have been identified that impact their recovery from the loss of a parent, which can be the focus of intervention. When death is expected, the terminal phase of an illness has been found to be particularly stressful for children, yet seldom investigated. Similarly, few studies have explored the impact of development on children's experience and expression of grief. We present research findings that clarify phases in children's experience during the terminal illness, hospital visits, the death, and its immediate aftermath, as well as how the parent is mourned and issues in longer term reconstitution. Variations in children's responses in these phases are described as they were experienced by 87 children from 3 different developmental groupings: 3 to 5 years, 6 to 8 years, and 9 to 11 years. Recommendations are suggested for parents and professionals about ways to understand and support children during the terminal illness, at the time of death, and during the phase of reconstitution.

Relationships between personal attitudes about death and communication with terminally ill patients: How oncology clinicians grapple with mortality.

PubMed

Rodenbach, Rachel A; Rodenbach, Kyle E; Tejani, Mohamedtaki A; Epstein, Ronald M

2016-03-01

Clinician discomfort with death may affect care of patients but has not been well-studied. This study explores oncology clinicians' attitudes surrounding their own death and how these attitudes both affect and are affected by their care of dying patients and their communication with them. Qualitative interviews with physicians (n=25), nurse practitioners (n=7), and physician assistants (n=1) in medical or hematologic oncology clinical practices about communication styles, care of terminally ill patients, and personal perspectives about mortality. Clinicians described three communication styles used with patients about death and dying: direct, indirect, or selectively direct. Most reported an acceptance of their mortality that was "conditional," meaning that that they could not fully know how they would respond if actually terminally ill. For many clinicians, caring for dying patients affected their outlook on life and death, and their own perspectives on life and death affected their approach to caring for dying patients. An awareness of personal mortality may help clinicians to discuss death more openly with patients and to provide better care. Efforts to promote self-awareness and communication training are key to facilitating clear communication with and compassionate care of terminally ill patients. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.

Challenges for co-morbid chronic illness care and policy in Australia: a qualitative study

PubMed Central

Jowsey, Tanisha; Jeon, Yun-Hee; Dugdale, Paul; Glasgow, Nicholas J; Kljakovic, Marjan; Usherwood, Tim

2009-01-01

Background In response to the escalating burden of chronic illness in Australia, recent health policies have emphasised the promotion of patient self-management and better preventive care. A notable omission from these policies is the acknowledgment that patients with chronic illness tend to have co-morbid conditions. Our objectives were: to identify the common challenges co-morbidity poses to patients and carers in their experiences of self-management; to detail the views and perceptions of health professionals about these challenges; and to discuss policy options to improve health care for people with co-morbid chronic illness. The method included semi-structured interviews and focus groups with 129 purposively sampled participants. Participants were people with Type 2 diabetes, chronic obstructive pulmonary disease and/or chronic heart failure as well as carers and health care professionals. Content analysis of the interview data was conducted using NVivo7 software. Results Patients and their carers found co-morbidity influenced their capacity to manage chronic illness in three ways. First, co-morbidity created barriers to patients acting on risk factors; second, it complicated the process of recognising the early symptoms of deterioration of each condition, and third, it complicated their capacity to manage medication. Conclusion Findings highlight challenges that patients with multiple chronic conditions face in relation to preventive care and self-management. Future clinical policy initiatives need to move away from single illness orientation toward strategies that meet the needs of people with co-morbid conditions and strengthen their capacity to self-manage. These patients will benefit directly from specialised education and services that cater to the needs of people with clusters of co-morbidities. PMID:19735576

Building on transformative learning and response shift theory to investigate health-related quality of life changes over time in individuals with chronic health conditions and disability.

PubMed

Barclay-Goddard, Ruth; King, Judy; Dubouloz, Claire-Jehanne; Schwartz, Carolyn E

2012-02-01

A major goal of treatment for people living with chronic illness or disability is self-management leading to optimized health-related quality of life. This change process has been described in the adult education literature as transformative learning, while in health-related quality of life research, response shift has emerged as a key concept. Response shift and transformative learning literature were reviewed, and the theoretical frameworks of the 2 concepts were compared and contrasted. Response shift is described as a change in internal standards, values, or definition of a construct (eg, health-related quality of life) over time, commonly seen in individuals with chronic illness. In the context of chronic illness, transformative learning is described as a complex process of personal change including beliefs, feelings, knowledge, and values. Transformative learning is often triggered by the diagnosis of a chronic illness. This results in a critical reflection of taken-for-granted assumptions and leads to new ways of thinking, influencing personal changes in daily living. Comparing the models of response shift and transformative learning in chronic illness, the catalyst in response shift appears comparable with the trigger in transformational learning; mechanisms to process of changing; and perceived quality of life to outcomes. Both transformative learning and response shift have much to offer health care providers in understanding the learning process for the person living with chronic illness or disability to optimize their quality of life. Suggestions for future research in response shift and transformative learning in individuals with chronic health conditions and disability are proposed. Copyright © 2012 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.

Depression and anxiety in patients on chronic hemodialysis in University Clinical Hospital Mostar.

PubMed

Klarić, Miro; Letica, Ivona; Petrov, Bozo; Tomić, Monika; Klarić, Branka; Letica, Ludvig; Francisković, Tanja

2009-12-01

Depression and anxiety are prevailing mental problem in patients on chronic hemodialysis and they have great influence on outcome of illness. Additionally, these disorders are rarely identified in that population of patients and they are insufficiently treated. The aim of this study was to assess the prevalence of depression and anxiety in patients on chronic hemodialysis in University Clinical Hospital Mostar and to examine the correlation between the demographic variables and the time spent on dialysis with depression and anxiety levels. The experimental group consisted of 56 patients on chronic hemodialysis in Mostar Clinical Hospital. The control group 1 consisted of 53 patients diagnosed with a chronic illness and treated for at least a year, while the control group 2 consisted of 51 persons who were not diagnosed with any chronic somatic or mental illness. Demographic data were collected using the constructed questionnaire. The Beck Depression Inventory-BDI was used to determine depression, while the Spielberger State-Trait Anxiety Inventory-STAI was used to determine anxiety. We recorded significantly higher prevalence of depression in patients on chronic dialysis (51.8%) than in patients with a chronic illness (41.5%) and persons without chronic illnesses (9.8%; p < 0.001). Trait anxiety level was significantly higher in hemodialysed patients compared to the other two groups (p = 0.006) but there were no significant differences in state anxiety level. The study has not shown any significant difference in the prevalence of depression and anxiety level regarding the differences in sex, gender and education level, apart from a higher level of state anxiety in patients with a lower education level (p = 0.032). These results indicate that patients on hemodialysis have a significantly higher level of depression and a higher level of trait anxiety compared to patients with chronic illnesses and especially compared to general population.

Multiple Chronic Condition Combinations and Depression in Community-Dwelling Older Adults.

PubMed

Pruchno, Rachel A; Wilson-Genderson, Maureen; Heid, Allison R

2016-07-01

The U.S. Department of Health and Human Services recently called for a paradigm shift from the study of individual chronic conditions to multiple chronic conditions (MCCs). We identify the most common combinations of chronic diseases experienced by a sample of community-dwelling older people and assess whether depression is differentially associated with combinations of illnesses. Self-reports of diagnosed chronic conditions and depressive symptoms were provided by 5,688 people participating in the ORANJ BOWL(SM) research panel. Each respondent was categorized as belonging to one of 32 groups. ANOVA examined the association between depressive symptoms and combinations of illnesses. People with more health conditions experienced higher levels of depression than people with fewer health conditions. People with some illness combinations had higher levels of depressive symptoms than people with other illness combinations. Findings confirm extensive variability in the combinations of illnesses experienced by older adults and demonstrate the complex associations of specific illness combinations with depressive symptoms. Results highlight the need to expand our conceptualization of research and treatment around MCCs and call for a person-centered approach that addresses the unique needs of individuals with MCCs. © 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.

42 CFR 431.51 - Free choice of providers.

Code of Federal Regulations, 2010 CFR

2010-10-01

... developmental disabilities or with chronic mental illness. This limitation may only be permitted so that the... chronic mental illness are capable of ensuring that those individuals receive needed services. (d...

Just regionalisation: rehabilitating care for people with disabilities and chronic illnesses.

PubMed

Secker, Barbara; Goldenberg, Maya J; Gibson, Barbara E; Wagner, Frank; Parke, Bob; Breslin, Jonathan; Thompson, Alison; Lear, Jonathan R; Singer, Peter A

2006-08-29

Regionalised models of health care delivery have important implications for people with disabilities and chronic illnesses yet the ethical issues surrounding disability and regionalisation have not yet been explored. Although there is ethics-related research into disability and chronic illness, studies of regionalisation experiences, and research directed at improving health systems for these patient populations, to our knowledge these streams of research have not been brought together. Using the Canadian province of Ontario as a case study, we address this gap by examining the ethics of regionalisation and the implications for people with disabilities and chronic illnesses. The critical success factors we provide have broad applicability for guiding and/or evaluating new and existing regionalised health care strategies. Ontario is in the process of implementing fourteen Local Health Integration Networks (LHINs). The implementation of the LHINs provides a rare opportunity to address systematically the unmet diverse care needs of people with disabilities and chronic illnesses. The core of this paper provides a series of composite case vignettes illustrating integration opportunities relevant to these populations, namely: (i) rehabilitation and services for people with disabilities; (ii) chronic illness and cancer care; (iii) senior's health; (iv) community support services; (v) children's health; (vi) health promotion; and (vii) mental health and addiction services. For each vignette, we interpret the governing principles developed by the LHINs - equitable access based on patient need, preserving patient choice, responsiveness to local population health needs, shared accountability and patient-centred care - and describe how they apply. We then offer critical success factors to guide the LHINs in upholding these principles in response to the needs of people with disabilities and chronic illnesses. This paper aims to bridge an important gap in the literature by examining the ethics of a new regionalisation strategy with a focus on the implications for people with disabilities and chronic illnesses across multiple sites of care. While Ontario is used as a case study to contextualize our discussion, the issues we identify, the ethical principles we apply, and the critical success factors we provide have broader applicability for guiding and evaluating the development of - or revisions to - a regionalised health care strategy.

Paediatric chronic illness and educational failure: the role of emotional and behavioural problems.

PubMed

Layte, Richard; McCrory, Cathal

2013-08-01

Chronic illness in childhood is associated with worse educational outcomes. The association is usually explained via lowered cognitive development, decreased readiness to learn and school absence. However, this paper examines whether worse psychological adjustment may also play a role. We use data from the Growing Up in Ireland study, a cohort study, which collected data on 8,568 nine-year-old children through the Irish national school system using a two-stage sampling method. Maximum likelihood path analytic models are used to assess the direct effect of child chronic illness on reading and maths test scores and the mediating role of emotional and behavioural problems. In unadjusted analyses, children with a mental and behavioural condition scored 14.5 % points less on reading tests and 16.9 % points less on maths tests than their healthy peers. Children with non-mental and behavioural conditions scored 3 % points less on both tests, a significant difference. Mental and behavioural (OR, 9.58) and other chronic conditions (OR, 1.61) were significantly more likely to have 'high' levels of difficulties on the SDQ. Path analysis models showed that the association between chronic illness and educational test scores was completely mediated by emotional and behavioural problems controlling for school absence and bullying by peers. Child and adolescent chronic illness can have significant effects on educational development and a long-lasting impact on future life-chances. The psychological adjustment of the child is important in mediating the effect of chronic illness on educational outcomes. Interventions should target this developmental pathway.

Parenting stress among caregivers of children with chronic illness: a systematic review.

PubMed

Cousino, Melissa K; Hazen, Rebecca A

2013-09-01

To critically review, analyze, and synthesize the literature on parenting stress among caregivers of children with asthma, cancer, cystic fibrosis, diabetes, epilepsy, juvenile rheumatoid arthritis, and/or sickle cell disease. Method PsychInfo, MEDLINE, and Cumulative Index to Nursing and Allied Health Literature were searched according to inclusion criteria. Meta-analysis of 13 studies and qualitative analysis of 96 studies was conducted. Results Caregivers of children with chronic illness reported significantly greater general parenting stress than caregivers of healthy children (d = .40; p = ≤.0001). Qualitative analysis revealed that greater general parenting stress was associated with greater parental responsibility for treatment management and was unrelated to illness duration and severity across illness populations. Greater parenting stress was associated with poorer psychological adjustment in caregivers and children with chronic illness. Conclusion Parenting stress is an important target for future intervention. General and illness-specific measures of parenting stress should be used in future studies.

Two fatal cases of type E adult food-borne botulism with early symptoms and terminal neurologic signs.

PubMed Central

Badhey, H; Cleri, D J; D'Amato, R F; Vernaleo, J R; Veinni, V; Tessler, J; Wallman, A A; Mastellone, A J; Giuliani, M; Hochstein, L

1986-01-01

Type E botulism, one of the least common forms of botulinal intoxication on the East Coast of the United States, is described for two elderly patients with chronic underlying disease. Both patients consumed tainted kapchunka, a salted, ungutted whitefish. Gastrointestinal symptoms and signs were prominent, but neurologic complaints, although noted soon after the consumption of the fish in one patient, did not progress until late in the course of the patient's illness. One patient exhibited both urinary retention, which was reported mainly in one outbreak of type E botulism (M.G. Koenig, A. Spickard, M.A. Cardella, and D.E. Rogers, Medicine [Baltimore] 43:517-545, 1964), and muscular fasciculations, which have been rarely reported. PMID:3514662

Palliative psychiatry for severe persistent mental illness as a new approach to psychiatry? Definition, scope, benefits, and risks.

PubMed

Trachsel, Manuel; Irwin, Scott A; Biller-Andorno, Nikola; Hoff, Paul; Riese, Florian

2016-07-22

As a significant proportion of patients receiving palliative care suffer from states of anxiety, depression, delirium, or other mental symptoms, psychiatry and palliative care already collaborate closely in the palliative care of medical conditions. Despite this well-established involvement of psychiatrists in palliative care, psychiatry does not currently explicitly provide palliative care for patients with mental illness outside the context of terminal medical illness. Based on the WHO definition of palliative care, a, a working definition of palliative psychiatry is proposed. Palliative psychiatry focuses on mental health rather than medical/physical issues. We propose that the beneficiaries of palliative psychiatry are patients with severe persistent mental illness, who are at risk of therapeutic neglect and/or overly aggressive care within current paradigms. These include long-term residential care patients with severe chronic schizophrenia and insufficient quality of life, those with therapy-refractory depressions and repeated suicide attempts, and those with severe long-standing therapy-refractory anorexia nervosa. An explicitly palliative approach within psychiatry has the potential to improve quality of care, person-centredness, outcomes, and autonomy for patients with severe persistent mental illness. The first step towards a palliative psychiatry is to acknowledge those palliative approaches that already exist implicitly in psychiatry. Basic skills for a palliative psychiatry include communication of diagnosis and prognosis, symptom assessment and management, support for advance (mental health) care planning, assessment of caregiver needs, and referral to specialized services. Some of these may already be considered core skills of psychiatrists, but for a truly palliative approach they should be exercised guided by an awareness of the limited functional prognosis and lifespan of patients with severe persistent mental illness.

Online Peer-to-Peer Communities in the Daily Lives of People With Chronic Illness: A Qualitative Systematic Review.

PubMed

Kingod, Natasja; Cleal, Bryan; Wahlberg, Ayo; Husted, Gitte R

2017-01-01

This qualitative systematic review investigated how individuals with chronic illness experience online peer-to-peer support and how their experiences influence daily life with illness. Selected studies were appraised by quality criteria focused upon research questions and study design, participant selection, methods of data collection, and methods of analysis. Four themes were identified: (a) illness-associated identity work, (b) social support and connectivity, (c) experiential knowledge sharing, and (d) collective voice and mobilization. Findings indicate that online peer-to-peer communities provide a supportive space for daily self-care related to chronic illness. Online communities provided a valued space to strengthen social ties and exchange knowledge that supported offline ties and patient-doctor relationships. Individuals used online communities to exchange experiential knowledge about everyday life with illness. This type of knowledge was perceived as extending far beyond medical care. Online communities were also used to mobilize and raise collective awareness about illness-specific concerns. © The Author(s) 2016.

Management of Chronic Kidney Disease Patients in the Intensive Care Unit: Mixing Acute and Chronic Illness.

PubMed

De Rosa, Silvia; Samoni, Sara; Villa, Gianluca; Ronco, Claudio

2017-01-01

Patients with chronic kidney disease (CKD) are at high risk for developing critical illness and for admission to intensive care units (ICU). 'Critically ill CKD patients' frequently develop an acute worsening of renal function (i.e. acute-on-chronic, AoC) that contributes to long-term kidney dysfunction, potentially leading to end-stage kidney disease (ESKD). An integrated multidisciplinary effort is thus necessary to adequately manage the multi-organ damage of those kidney patients and contemporaneously reduce the progression of kidney dysfunction when they are critically ill. The aim of this review is to describe (1) the pathophysiological mechanisms underlying the development of AoC kidney dysfunction and its role in the progression toward ESKD; (2) the most common clinical presentations of critical illness among CKD/ESKD patients; and (3) the continuum of care for CKD/ESKD patients from maintenance hemodialysis/peritoneal dialysis to acute renal replacement therapy performed in ICU and, vice-versa, for AoC patients who develop ESKD. © 2017 S. Karger AG, Basel.

The role of disease management programs in the health behavior of chronically ill patients.

PubMed

Cramm, Jane Murray; Adams, Samantha A; Walters, Bethany Hipple; Tsiachristas, Apostolos; Bal, Roland; Huijsman, Robbert; Rutten-Van Mölken, Maureen P M H; Nieboer, Anna Petra

2014-04-01

Investigate the effects of disease management program (DMP) implementation on physical activity, smoking, and physical quality of life among chronically ill patients. This study used a mixed-methods approach involving qualitative (35 interviews with project managers) and quantitative (survey of patients from 18 DMPs) data collection. Questionnaire response rates were 51% (2010; 2619/5108) at T0 and 47% (2011; 2191/4693) at T1. Physical activity and the percentage of smokers improved significantly over time, whereas physical quality of life declined. After adjusting for patients' physical quality of life at T0, age, educational level, marital status, and gender, physical activity at T0 (p<0.01), changes in physical activity (p<0.001), and percentage of smokers at T0 (p<0.05) predicted physical quality of life at T1. Project managers reported that DMPs improved patient-professional interaction. The ability to set more concrete targets improved patients' health behaviors. DMPs appear to improve physical activity among chronically ill patients over time. Furthermore, (changes in) health behavior are important for the physical quality of life of chronically ill patients. Redesigning care systems and implementing DMPs based on the chronic care model may improve health behavior among chronically ill patients. Copyright © 2014 The Authors. Published by Elsevier Ireland Ltd.. All rights reserved.

Including Young Children With "New" Chronic Illnesses in an Early Childhood Education Setting.

ERIC Educational Resources Information Center

Fauvre, Mary

1988-01-01

Presents suggestions for successfully including young children with "new" life-threatening, chronic illnesses -- various types of cancer, heart, liver, and kidney diseases -- in early childhood education classes. (BB)

76 FR 74039 - Approaches to Reducing Sodium Consumption; Establishment of Dockets; Request for Comments, Data...

Federal Register 2010, 2011, 2012, 2013, 2014

2011-11-30

... and other chronic illnesses; sodium consumption practices; motivation and barriers in reducing sodium... role of sodium in hypertension and other chronic illnesses; sodium consumption practices; motivation...

The College Experience for Students with Chronic Illness: Implications for Academic Advising

ERIC Educational Resources Information Center

Houman, Katie M.; Stapley, Janice C.

2013-01-01

A purposive sample (2 males, 3 females) of students (aged 18-29 years) with chronic illness completed standardized measures and a semi-structured interview. Content analysis of the interview data revealed two themes: stress exacerbating symptoms of illness and a desire for a support group on campus. Viewed through the theory of emerging adulthood,…

Imaginal Coping and Childhood Illness: How Children Relate to Treatments for Chronic Illness.

ERIC Educational Resources Information Center

Clark, Cindy Dell

This ethnographic study used multiple approaches to try to determine the emotional experience of young children (ages 5 to 8) with chronic illnesses. Forty-six children with severe asthma and diabetes were interviewed on two separate occasions using child-centered in-depth interviews that included play-based interviewing. The study also employed…

Alagille Syndrome: A Case Report Highlighting Dysmorphic Facies, Chronic Illness, and Depression

PubMed Central

Winthrop, Zachary A.; Salman, Rabia; Majeed, Salman

2016-01-01

Alagille syndrome is a rare multisystem disorder affecting the liver, heart, vertebrae, eyes, and face. Alagille syndrome shares multiple phenotypic variants of other congenital or chronic childhood illnesses such as DiGeorge syndrome, Down syndrome, spina bifida, type 1 diabetes mellitus, and cystic fibrosis. All of these chronic illnesses have well-established links to psychiatric conditions. There are few community resources for Alagille patients, as it is an extremely rare condition. Despite the overlap with other chronic childhood illnesses, the psychiatric manifestations of Alagille syndrome have not been previously discussed in literature. The current study is a case report of a twelve-year-old female hospitalized in our pediatric psychiatric hospital for suicidal ideation with intent and plan. The patient had major depressive disorder, anxiety, other specified feeding and eating disorder, and attention-deficit/hyperactive disorder. PMID:28018696

Peer Attachment, Perceived Parenting Style, Self-concept, and School Adjustments in Adolescents with Chronic Illness.

PubMed

Ahn, Jeong-Ah; Lee, Sunhee

2016-12-01

The purpose of this study was to identify how peer attachment and parenting style differentially affect self-concept and school adjustment in adolescents with and without chronic illness. A cross-sectional study using multiple group analysis on the Korean panel data was used. A nationwide stratified multistage cluster sampling method was used and the survey was conducted in 2013 on 2,092 first-year middle school students in Korea. We used standardized instruments by the National Youth Policy Institute to measure peer attachment, parenting style, self-concept, and school adjustment. Multiple-group structural equation modeling was used to evaluate the difference of relations for peer attachment, parenting style, self-concept, and school adjustment variable between adolescents with chronic illness and those without chronic illness. The model fit of a multiple-group structural equation modeling was good. The difference of the path from negative parenting style to self-concept between the two groups was significant, and a significant between-group difference in the overall path was found. This indicated that self-concept in adolescents with chronic illness was more negatively affected by negative parenting style than in adolescents without chronic illness. Healthcare providers can promote the process of school adjustment in several ways, such as discussing this issue directly with adolescent patients, along with their parents and peers, examining how the organization and content of the treatment can be modified according to the adolescents' school life. Copyright © 2016. Published by Elsevier B.V.

A Q-Methodological Study of the Kubler-Ross Stage Theory.

ERIC Educational Resources Information Center

Metzger, Anne M.

1979-01-01

Investigated the correspondence between stage changes hypothesized by the Kubler-Ross theory and the perception of the course of illness by seriously ill patients and their spouses. Supported the use of Q-methodology as a research procedure for investigations of terminal illness. (Author)

Mind-Body Approaches and Chronic Illness: Status of Research

ERIC Educational Resources Information Center

Riccio, Cynthia A.; Pliego, Jessica; Rae, William A.

2016-01-01

An increasing number of children experience chronic health issues that affect their academic and behavioral functioning, as well as psychological well-being. At the same time, psychological stress can exacerbate the chronic illness. The first line of treatment most often is medical (e.g., pharmacology, surgery, radiation). Even when the medical…

An Evaluation of Collaborative Interventions to Improve Chronic Illness Care: Framework and Study Design

ERIC Educational Resources Information Center

Cretin, Shan; Shortell, Stephen M.; Keeler, Emmett B.

2004-01-01

The authors' dual-purpose evaluation assesses the effectiveness of formal collaboratives in stimulating organizational changes to improve chronic illness care (the chronic care model or CCM). Intervention and comparison sites are compared before and after introduction of the CCM. Multiple data sources are used to measure the degree of…

Women Confronting the Reality of Multiple Sclerosis: A Qualitative Model of Self-Healing

ERIC Educational Resources Information Center

Romagosa, Carol J.

2010-01-01

Multiple sclerosis (MS) is a chronic debilitating disease that has an uncertain course. Although uncertainty is a universal experience in chronic illness, uncertainty in MS is especially threatening to psychological well-being. Chronic illness, including conditions of disability, is one of our greatest health care problems as society ages. Never…

Physician-Assisted Death and Severe, Treatment-Resistant Depression.

PubMed

Steinbock, Bonnie

2017-09-01

Should people suffering from untreatable psychiatric conditions be eligible for physician-assisted death? This is possible in Belgium and the Netherlands, where PAD for psychiatric conditions is permitted, though rare, so long as the criteria of due care are met. Those opposed to all instances of PAD point to Belgium and the Netherlands as a dark warning that once PAD is legalized, restricting it will prove impossible because safeguards, such as the requirement that a patient be terminally ill, will inevitably be eroded or discarded. However, some supporters respond that limiting PAD to those suffering from terminal illness, or physical illnesses generally, is arbitrary and illogical. In addition, precisely because such patients are not terminally ill, their suffering may last for years, even the rest of their lives. Finally, severe depression may not be treatable. If PAD is justifiable under some conditions-as I shall assume in this article-then why wouldn't it be justifiable for these patients? Why shouldn't psychiatrists who have nothing else to offer their suffering patients be able to help them to die, if that is what they want? © 2017 The Hastings Center.

The preference of place of death and its predictors among terminally ill patients with cancer and their caregivers in China.

PubMed

Gu, Xiaoli; Cheng, Wenwu; Cheng, Menglei; Liu, Minghui; Zhang, Zhe

2015-12-01

To describe the preference of place of death among Chinese patients with cancer and their caregivers and to identify factors associated with the preference. A prospective questionnaire research was conducted in terminally ill patients with cancer and their caregivers. Questions included sociodemographic characteristics and information about patients' diseases and patients' preference of place of death. Home (53.64%) was the first choice for 522 patients, 51.34% of participated caregivers chose home as the preferred place of death, and patient-caregiver dyads achieved 84.10% agreement. Patients who lived in rural area, with lower education level and lived with relatives, expressed more preference to die at home. This study described information about the preference of place of death and its potential predictive factors in terminally ill patients with cancer in mainland of China. © The Author(s) 2014.

Intentions to work during terminal illness: an exploratory study of antecedent conditions.

PubMed

Westaby, James D; Versenyi, Andrea; Hausmann, Robert C

2005-11-01

Facing a terminal illness is an unimaginably difficult experience, yet many individuals intend to work despite their prognosis. However, research has not systematically examined the potential antecedents underlying such intentions. Using behavioral intention theory as an underlying framework, this study hypothesized that reasons for working (intrinsic and extrinsic), the will to live, disability severity, accessibility of travel, and age would predict intentions to work during terminal illness. A representative sample of medically diagnosed amyotrophic lateral sclerosis (a.k.a. Lou Gehrig's disease) patients with a mean life expectancy of approximately 3 years participated (mean age=57.8 years). Controlling for length of diagnosis, employment status, and demographic variables, results indicated that intrinsic reasons were particularly strong predictors of intentions, followed by age, disability severity, and accessibility of travel. Exploratory findings also indicated that behavioral intentions were positively related to future employment status, consistent with past theory. ((c) 2005 APA, all rights reserved).

A Structured Approach to End-of-Life Decision Making Improves Quality of Care for Patients With Terminal Illness in a Teaching Hospital in Ghana.

PubMed

Edwin, Ama Kyerewaa; Johnson McGee, Summer; Opare-Lokko, Edwina Addo; Gyakobo, Mawuli Kotope

2016-03-01

To determine whether a structured approach to end-of-life decision-making directed by a compassionate interdisciplinary team would improve the quality of care for patients with terminal illness in a teaching hospital in Ghana. A retrospective analysis was done for 20 patients who consented to participate in the structured approach to end-of-life decision-making. Twenty patients whose care did not follow the structured approach were selected as controls. Outcome measures were nociceptive pain control, completing relationships, and emotional response towards dying. These measures were statistically superior in the study group compared to the control group. A structured approach to end-of-life decision-making significantly improves the quality of care for patients with terminal illness in the domains of pain control, completing relationships and emotional responses towards dying. © The Author(s) 2014.

Caregiver grief in terminal illness and bereavement: a mixed-methods study.

PubMed

Waldrop, Deborah P

2007-08-01

Caregivers experience multiple losses during the downhill trajectory of a loved one's terminal illness. Using mixed methods, this two-stage study explored caregiver grief during a terminal illness and after the care recipient's death. Caregiver grief was a state of heightened responsiveness during end-stage care: anxiety, hostility, depression, and trouble concentrating, remembering, and getting things done. Following the death, caregiver grief became a state of sustained reactivity: Overall distress was diminished and anxiety and hostility decreased significantly, but loneliness, sadness, and tears increased. Overwhelming responses were triggered by unforeseen visual or auditory reminders of the person. Sleep disturbances began during end-stage care and continued after the death. At both times, caregiver grief was highly influenced by the social context; relationships with family and friends (more cohesive versus conflicted) shaped responses. Social work practitioners can help caregivers who may be unaware they are experiencing grief to identify and integrate these normal responses to loss.

Providing Support to Relatives and Friends Managing Both Chronic Physical Illness and Depression: the Views of a National Sample of U.S. Adults

PubMed Central

Janevic, Mary; Rosland, Ann-Marie; Wiitala, Wyndy; Connell, Cathleen M; Piette, John D.

2012-01-01

Objective To describe how comorbid depression in chronically ill adults affects the willingness of their family and friends to provide them with illness management support. Methods We identified a national sample of U.S. adults (n=1027), all of whom had a close relative or friend with a chronic physical illness. We examined whether respondents were less willing to help their relatives/friends with disease management when they reported that these relatives/friends were also diagnosed with depression. Results In multivariate models, the odds of respondents being willing to provide disease-management support doubled when the relative/friend was depressed (adjusted odds ratio (AOR) = 1.99; 95% C.I=1.31, 3.02). Respondents were willing to perform an equal number of illness support tasks for relatives/friends with and without depression. However, respondents reported 30% more difficulties discussing health issues (incidence rate ratio (IRR)=1.30; 95% C.I=1.11,1.53), and 44% more barriers to providing support (IRR=1.44; 95% C.I=1.18, 1.75) to depressed relatives/friends. Conclusion U.S. adults are more willing to provide disease-management support for chronically ill relatives/friends with depression. However, helping depressed relatives/friends is also more challenging. Practice implications By providing resources for potential supporters, health providers could mobilize an important source of disease-management support for patients with chronic illness and depression. PMID:22748757

26 CFR 7.105-2 - Substantial gainful activity.

Code of Federal Regulations, 2014 CFR

2014-04-01

... convenience. Even though the taxpayer's illness is terminal, the employment was recommended for therapeutic... from employment as a teacher because of terminal cancer. The taxpayer's physician recommended...

26 CFR 7.105-2 - Substantial gainful activity.

Code of Federal Regulations, 2013 CFR

2013-04-01

... convenience. Even though the taxpayer's illness is terminal, the employment was recommended for therapeutic... from employment as a teacher because of terminal cancer. The taxpayer's physician recommended...

26 CFR 7.105-2 - Substantial gainful activity.

Code of Federal Regulations, 2012 CFR

2012-04-01

... convenience. Even though the taxpayer's illness is terminal, the employment was recommended for therapeutic... from employment as a teacher because of terminal cancer. The taxpayer's physician recommended...

Housing and Food Insecurity, Care Access, and Health Status Among the Chronically Ill: An Analysis of the Behavioral Risk Factor Surveillance System.

PubMed

Charkhchi, Paniz; Fazeli Dehkordy, Soudabeh; Carlos, Ruth C

2018-05-01

The proportion of the United States population with chronic illness continues to rise. Understanding the determinants of quality of care-particularly social determinants-is critical to the provision of care in this population. To estimate the prevalence of housing and food insecurity among persons with common chronic conditions and to assess the independent effects of chronic illness and sociodemographic characteristics on (1) housing and food insecurity, and (2) health care access hardship and health status. Cross-sectional study. We used data from the 11 states and one territory that completed the social context module of the 2015 Behavioral Risk Factor Surveillance System (BRFSS). We estimated the prevalence of housing and food insecurity among patients with cancer, stroke, cardiovascular disease, and chronic lung disease. Logistic regression models were used to assess the independent effects of housing and food insecurity, chronic conditions, and demographics on health care access and health status. Among the chronically ill, 36.71% (95% CI: 35.54-37.88) experienced housing insecurity and 30.60% (95% CI: 29.49-31.71) experienced food insecurity. Cardiovascular and lung disease increased the likelihood of housing (OR 1.69, 95% CI: 1.07-2.66 and OR 1.71, 95% CI: 1.12-2.60, respectively) and food insecurity (OR 1.75, 95% CI: 1.12-2.73 and OR 1.78, 95% CI: 1.20-2.63, respectively). Housing and food insecurity significantly increased the risk of health care access hardship. Being insured or having an income level above 200% of the federal poverty level significantly reduced the likelihood of access hardship, while female gender significantly increased the likelihood. Chronic illness independently affects housing and food insecurity. In turn, food and housing anxiety leads to reduced access to care, likely due to cost concerns, and correlates with poorer health. A more complete understanding of the pathways by which chronic illness influences social determinants and clinical outcomes is needed.

Self-management support in chronic illness care: a concept analysis.

PubMed

Kawi, Jennifer

2012-01-01

This article reports on the concept analysis of self-management support (SMS) to provide clarity for systematic implementation in practice. SMS is a concept in its early phase of development. It is increasingly evident in literature on chronic illness care. However, the definition has been simplified or vague leading to variable SMS programs and inconsistent outcomes. Elucidation of SMS is necessary in chronic illness care to facilitate clear understanding and implementation. Rodgers' evolutionary concept analysis method was used to examine SMS. Data sources included systematic multidisciplinary searches of multiple search engines. SMS refers to comprehensive sustaining approaches toward improving chronic illness outcomes consisting of patient-centered attributes (involving patients as partners; providing diverse, innovative educational modalities specific to patients' needs; individualizing patient care), provider attributes (possessing adequate knowledge, skills, attitudes in providing care), and organizational attributes (putting an organized system of care in place, having multidisciplinary team approach, using tangible and social support). A well-clarified SMS concept is important in theory development. The attributes offer necessary components in SMS programs for systematic implementation, evaluation, and research. There is great potential that SMS can help improve outcomes of chronic illness care.

Developing interventions for chronically ill patients: is coping a helpful concept?

PubMed

de Ridder, D; Schreurs, K

2001-03-01

In this review, the role of coping in the development of psychosocial interventions for chronically ill patients is discussed. After summarizing the theoretical issues involved in the translation of the coping concept into an intervention, a review is undertaken of 35 studies concerned with the impact of interventions aimed at improving coping on patients' quality of life. These studies concern seven different chronic disease types (AIDS, asthma, cancer, cardiovascular diseases, chronic pain, diabetes, and rheumatoid arthritis) and show explicit consideration of attempts to manage illness in terms of coping to be rare. Many studies nevertheless address the equivalent of coping, namely behaviors and/or cognitions intended to deal with an illness situation appraised as stressful. The results of these studies are encouraging, although largely limited to the improvement of one or two particular coping strategies and problem-focused strategies in particular. It is argued that in order to expand on these initially positive findings, greater and more explicit consideration should be given to the potential of the coping concept for intervention with the chronically ill. The appraisal of stressful situations, the use of coping resources, and the strategic application of particular coping strategies should, for example, be given more careful consideration.

Chronic stress and illness in children: the role of allostatic load.

PubMed

Johnston-Brooks, C H; Lewis, M A; Evans, G W; Whalen, C K

1998-01-01

Recent studies of stress have highlighted the contributions of chronic psychological and environmental stressors to health and well-being. Children may be especially vulnerable to the negative effects of chronic stressors. Allostasis, the body's ability to adapt and adjust to environmental demands, has been proposed as an explanatory mechanism for the stress-health link, yet empirical evidence is minimal. This study tested the proposition that allostasis may be an underlying physiological mechanism linking chronic stress to poor health outcomes in school-aged children. Specifically, we examined whether allostasis would mediate or moderate the link between chronic stress and health. To test the hypothesis that allostasis contributes to the relation between chronic stress and poor health, we examined household density as a chronic environmental stressor, cardiovascular reactivity (CVR) as a marker of allostatic load, and number of school absences due to illness as the health outcome in a sample of 81 boys. Structural equation modeling indicated that the mediating model fit the data well, accounting for 17% of the variance in days ill. Results provide the first evidence that CVR may mediate the relation between household density and medical illness in children. More generally, these findings support the role of allostasis as an underlying mechanism in the link between chronic stress and health.

Cultural diversity: family path through terminal illness.

PubMed

Baider, L

2012-04-01

In trying to comprehend a culture and its ways of structuring the world, much can be learned from addressing the manner in which intimate family relationships are ordered and family crises channeled toward care. A family's experience with illness cannot be considered in isolation from the cultural milieu in which it occurs. Family adaptation to cancer diagnosis is a continuous motion between many critical strata--a fragile oscillation between hope and desperation. Processes for optimal functioning and the well-being of members are seen to vary over time, as challenges unfold and families evolve across the life cycle and illness trajectory. The manner in which the healthcare system and family manage illness and terminal care is a particularly helpful window into the cultural, religious and traditional values of every family in a particular society.

Describing and analysing primary health care system support for chronic illness care in Indigenous communities in Australia's Northern Territory - use of the Chronic Care Model.

PubMed

Si, Damin; Bailie, Ross; Cunningham, Joan; Robinson, Gary; Dowden, Michelle; Stewart, Allison; Connors, Christine; Weeramanthri, Tarun

2008-05-28

Indigenous Australians experience disproportionately high prevalence of, and morbidity and mortality from chronic illness such as diabetes, renal disease and cardiovascular disease. Improving the understanding of how Indigenous primary care systems are organised to deliver chronic illness care will inform efforts to improve the quality of care for Indigenous people. This cross-sectional study was conducted in 12 Indigenous communities in Australia's Northern Territory. Using the Chronic Care Model as a framework, we carried out a mail-out survey to collect information on material, financial and human resources relating to chronic illness care in participating health centres. Follow up face-to-face interviews with health centre staff were conducted to identify successes and difficulties in the systems in relation to providing chronic illness care to community members. Participating health centres had distinct areas of strength and weakness in each component of systems: 1) organisational influence - strengthened by inclusion of chronic illness goals in business plans, appointment of designated chronic disease coordinators and introduction of external clinical audits, but weakened by lack of training in disease prevention and health promotion and limited access to Medicare funding; 2) community linkages - facilitated by working together with community organisations (e.g. local stores) and running community-based programs (e.g. "health week"), but detracted by a shortage of staff especially of Aboriginal health workers working in the community; 3) self management - promoted through patient education and goal setting with clients, but impeded by limited focus on family and community-based activities due to understaffing; 4) decision support - facilitated by distribution of clinical guidelines and their integration with daily care, but limited by inadequate access to and support from specialists; 5) delivery system design - strengthened by provision of transport for clients to health centres, separate men's and women's clinic rooms, specific roles of primary care team members in relation to chronic illness care, effective teamwork, and functional pathology and pharmacy systems, but weakened by staff shortage (particularly doctors and Aboriginal health workers) and high staff turnover; and 6) clinical information systems - facilitated by wide adoption of computerised information systems, but weakened by the systems' complexity and lack of IT maintenance and upgrade support. Using concrete examples, this study translates the concept of the Chronic Care Model (and associated systems view) into practical application in Australian Indigenous primary care settings. This approach proved to be useful in understanding the quality of primary care systems for prevention and management of chronic illness. Further refinement of the systems should focus on both increasing human and financial resources and improving management practice.

29 CFR 1904.46 - Definitions.

Code of Federal Regulations, 2014 CFR

2014-07-01

... AND REPORTING OCCUPATIONAL INJURIES AND ILLNESSES Definitions § 1904.46 Definitions. The Act. The Act... offices, terminals, stations, etc. that either supervise such activities or are the base from which... § 1904.30(b)(3). Injury or illness. An injury or illness is an abnormal condition or disorder. Injuries...

29 CFR 1904.46 - Definitions.

Code of Federal Regulations, 2012 CFR

2012-07-01

... AND REPORTING OCCUPATIONAL INJURIES AND ILLNESSES Definitions § 1904.46 Definitions. The Act. The Act... offices, terminals, stations, etc. that either supervise such activities or are the base from which... § 1904.30(b)(3). Injury or illness. An injury or illness is an abnormal condition or disorder. Injuries...

29 CFR 1904.46 - Definitions.

Code of Federal Regulations, 2013 CFR

2013-07-01

... AND REPORTING OCCUPATIONAL INJURIES AND ILLNESSES Definitions § 1904.46 Definitions. The Act. The Act... offices, terminals, stations, etc. that either supervise such activities or are the base from which... § 1904.30(b)(3). Injury or illness. An injury or illness is an abnormal condition or disorder. Injuries...

29 CFR 1904.46 - Definitions.

Code of Federal Regulations, 2011 CFR

2011-07-01

... AND REPORTING OCCUPATIONAL INJURIES AND ILLNESSES Definitions § 1904.46 Definitions. The Act. The Act... offices, terminals, stations, etc. that either supervise such activities or are the base from which... § 1904.30(b)(3). Injury or illness. An injury or illness is an abnormal condition or disorder. Injuries...

Effectiveness of neurofeedback therapy for anxiety and stress in adults living with a chronic illness: a systematic review protocol.

PubMed

Blaskovits, Farriss; Tyerman, Jane; Luctkar-Flude, Marian

2017-07-01

The objective of this review is to systematically examine the effectiveness of neurofeedback therapy for managing anxiety and stress in adults living with a chronic illness.The specific objectives are to identify which neurofeedback systems and/or protocols demonstrate effectiveness and determine the level of supporting evidence.The review question is as follows: What is the effectiveness of neurofeedback therapy for managing anxiety and stress in an adult population aged 18 years of age or older living with a chronic illness?

Chronic Illness Associated with Mold and Mycotoxins: Is Naso-Sinus Fungal Biofilm the Culprit?

PubMed Central

Brewer, Joseph H.; Thrasher, Jack D.; Hooper, Dennis

2013-01-01

It has recently been demonstrated that patients who develop chronic illness after prior exposure to water damaged buildings (WDB) and mold have the presence of mycotoxins, which can be detected in the urine. We hypothesized that the mold may be harbored internally and continue to release and/or produce mycotoxins which contribute to ongoing chronic illness. The sinuses are the most likely candidate as a site for the internal mold and mycotoxin production. In this paper, we review the literature supporting this concept. PMID:24368325

Chronic illness associated with mold and mycotoxins: is naso-sinus fungal biofilm the culprit?

PubMed

Brewer, Joseph H; Thrasher, Jack D; Hooper, Dennis

2013-12-24

It has recently been demonstrated that patients who develop chronic illness after prior exposure to water damaged buildings (WDB) and mold have the presence of mycotoxins, which can be detected in the urine. We hypothesized that the mold may be harbored internally and continue to release and/or produce mycotoxins which contribute to ongoing chronic illness. The sinuses are the most likely candidate as a site for the internal mold and mycotoxin production. In this paper, we review the literature supporting this concept.

Florence Nightingale: her Crimean fever and chronic illness.

PubMed

Dossey, Barbara M

2010-03-01

Florence Nightingale's Crimean fever and chronic illness have intrigued historians for more than a century and a half. The purpose of this article is threefold: (a) to discuss the facts that point to the cause of Nightingale's Crimean fever as brucellosis, (b) to show that her debilitating illness for 32 years (1855-1887) was compatible with the specific form of chronic brucellosis, and (c) to present new evidence that she was still having severe symptoms in December 1887, when it was previously felt that she had no severe symptoms after 1870.

Close relationships and the management of chronic illness: Associations and interventions.

PubMed

Martire, Lynn M; Helgeson, Vicki S

2017-09-01

Self-management of a chronic illness involves not only monitoring symptoms, adhering to medication regimens, and keeping medical appointments but also making and maintaining difficult lifestyle changes. This article highlights correlational and intervention research suggesting family members are influential in children's and adults' illness management. The argument is made that a dyadic approach to chronic illness management that targets the influence of close relationships may yield more sustainable effects on patient behavior than has been achieved in the past. In particular, dyadic approaches aimed at helping patients and family members to find ways to collaborate in goal setting for these behaviors is recommended. Such dyadic interventions may also benefit family members who are ill or are at risk because of poor health behaviors. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

Say 'trouble's gone': chronic illness and employability in job training programmes.

PubMed

Tsui, Emma K

2013-01-01

The concept of biographical disruption has unique relevance for socioeconomically disadvantaged groups who participate in entry-level job training programmes. In these programmes trainees often suffer from various forms of chronic illness and must arrange these illnesses into a picture of employability. In this article I use ethnographic data and narrative analysis to examine closely two trainees' illness-related experiences, expressions and talk, and find that their ability to present their illnesses in ways that are consistent with programmatic goals is strongly influenced by family support, responsibilities and roles, as well as particular aspects of illness, like the interpretability of symptoms. I also find that the concept of biographical disruption has a curious traction in the world of job training, particularly among job training programme staff who would like to see trainees mobilise a variety of resources to help manage their illness. However, for trainees, many of whom have lived with chronic illness for years, the concept of biographical disruption may be more limited as a tool for understanding the experiences of illness. A more meaningful disruptive force in the lives of trainees appears to be the programme itself and the strategies for dealing with illness that programme staff may extend. © 2012 The Author. Sociology of Health & Illness © 2012 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd.

Experiences of sexuality and intimacy in terminal illness: a phenomenological study.

PubMed

Taylor, Bridget

2014-05-01

There is a paucity of research considering sexuality and intimacy in palliative care. It is therefore unclear whether palliative care professionals have a role in addressing these issues with patients and their partners. To understand people's experiences of sexuality and intimacy when living with a terminal illness. A Heideggerian hermeneutic (interpretive) phenomenological study was undertaken. Data were collected using one-to-one conversational interviews. An iterative approach to analysing the narratives was used to reveal shared meanings. A total of 27 patients and 14 partners of patients with either cancer or motor neuron disease were recruited from outpatient, community and hospice inpatient units. All participants were aware that the illness was life-limiting. When someone is living with a life-limiting illness, their coupled relationship is also dying. In their being-towards-death-of-the-couple, patients and partners of patients with motor neuron disease and terminal cancer experienced connecting and disconnecting within their coupled relationship. Becoming-apart-as-a-couple was experienced as loss of spontaneity, as lack of reciprocity and as rejection. This was influenced by a range of factors including medical treatments, disfigurement and the disabling effects of equipment. Some participants experienced re-connecting through becoming-closer-as-a-couple, although this was not always sustained. This study sheds new light on people's experiences of sexuality and intimacy when living with a terminal illness. The ethos of holistic care requires palliative care professionals to provide opportunities for patients and their partners to discuss any concerns they might have about their coupled relationship and to understand the meanings symptoms have for them.

On the Edge of Life, I: Assessment of, Reaction to, and Management of the Terminally Ill Recorded in an Intensive Care Unit Journal

PubMed Central

Sekeres, Mikkael A.; Stern, Theodore A.

2002-01-01

Background: In a general hospital, few clinical settings match the intensity of the intensive care unit (ICU) experience. Clinical rotations in ICUs elicit and emphasize the struggles house officers face on a daily basis throughout their training. Method: These struggles were recorded by hundreds of residents in a journal maintained in the Massachusetts General Hospital's Medical ICU for the past 20 years. We systematically reviewed these unsolicited entries to define and to illustrate how house officers respond to caring for terminally ill patients. The 3 overarching topics that surfaced repeatedly were assessment of terminally ill patients, reaction to their prognosis, and management of their disease or their eventual demise. Results: House officers record affective reactions and cognitive assessments to cope with the stress and dysfunction associated with the care of the critically ill and to facilitate their management of these patients. Journal entries by residents reveal a deep concern for the welfare of their patients, conflict about the technological advances and limitations of the system, and reflection on how involved physicians should become with their patients. Conclusion: House officer journal entries reflect a combination of newly gained medical knowledge and coping strategies in managing terminally ill patients. House officers also demonstrate a deep concern for the welfare of their patients. Insight from years of reflection from past house officers can help prepare trainees and residency programs for the breadth and intensity of the ICU experience and for work in clinical practice settings that follow completion of training. PMID:15014705

Advance directives lessen the decisional burden of surrogate decision-making for the chronically critically ill.

PubMed

Hickman, Ronald L; Pinto, Melissa D

2014-03-01

To identify the relationships between advance directive status, demographic characteristics and decisional burden (role stress and depressive symptoms) of surrogate decision-makers (SDMs) of patients with chronic critical illness. Although the prevalence of advance directives among Americans has increased, SDMs are ultimately responsible for complex medical decisions of the chronically critically ill patient. Decisional burden has lasting psychological effects on SDMs. There is insufficient evidence on the influence of advance directives on the decisional burden of surrogate decision-makers of patients with chronic critical illness. The study was a secondary data analysis of cross-sectional data. Data were obtained from 489 surrogate decision-makers of chronically critically ill patients at two academic medical centres in Northeast Ohio, United States, between September 2005-May 2008. Data were collected using demographic forms and questionnaires. A single-item measure of role stress and the Center for Epidemiological Studies Depression (CESD) scale were used to capture the SDM's decisional burden. Descriptive statistics, t-tests, chi-square and path analyses were performed. Surrogate decision-makers who were nonwhite, with low socioeconomic status and low education level were less likely to have advance directive documentation for their chronically critically ill patient. The presence of an advance directive mitigates the decisional burden by directly reducing the SDM's role stress and indirectly lessening the severity of depressive symptoms. Most SDMs of chronically critically ill patients will not have the benefit of knowing the patient's preferences for life-sustaining therapies and consequently be at risk of increased decisional burden. Study results are clinically useful for patient education on the influence of advance directives. Patients may be informed that SDMs without advance directives are at risk of increased decisional burden and will require decisional support to facilitate patient-centred decision-making. © 2013 John Wiley & Sons Ltd.

Household illness, poverty and physical and emotional child abuse victimisation: findings from South Africa's first prospective cohort study.

PubMed

Meinck, Franziska; Cluver, Lucie D; Boyes, Mark E

2015-05-01

Physical and emotional abuse of children is a large scale problem in South Africa, with severe negative outcomes for survivors. Although chronic household illness has shown to be a predictor for physical and emotional abuse, no research has thus far investigated the different pathways from household chronic illness to child abuse victimisation in South Africa. Confidential self-report questionnaires using internationally utilised measures were completed by children aged 10-17 (n = 3515, 56.7% female) using door-to-door sampling in randomly selected areas in rural and urban locations of South Africa. Follow-up surveys were conducted a year later (96.7% retention rate). Using multiple mediation analyses, this study investigated direct and indirect effects of chronic household illness (AIDS or other illness) on frequent (monthly) physical and emotional abuse victimisation with poverty and extent of the ill person's disability as hypothesised mediators. For children in AIDS-ill families, a positive direct effect on physical abuse was obtained. In addition, positive indirect effects through poverty and disability were established. For boys, a positive direct and indirect effect of AIDS-illness on emotional abuse through poverty were detected. For girls, a positive indirect effect through poverty was observed. For children in households with other chronic illness, a negative indirect effect on physical abuse was obtained. In addition, a negative indirect effect through poverty and positive indirect effect through disability was established. For boys, positive and negative indirect effects through poverty and disability were found respectively. For girls, a negative indirect effect through poverty was observed. These results indicate that children in families affected by AIDS-illness are at higher risk of child abuse victimisation, and this risk is mediated by higher levels of poverty and disability. Children affected by other chronic illness are at lower risk for abuse victimisation unless they are subject to higher levels of household disability. Interventions aiming to reduce poverty and increase family support may help prevent child abuse in families experiencing illness in South Africa.

Double jeopardy: assessing the association between internal displacement, housing quality and chronic illness in a low-income neighborhood.

PubMed

Habib, Rima R; Yassin, Nasser; Ghanawi, Joly; Haddad, Pascale; Mahfoud, Ziyad

2011-04-01

PURPOSE: This study analyzed associations between war-related internal displacement, housing quality and the prevalence of chronic illness in Nabaa, a low-income neighborhood on the outskirts of Beirut, Lebanon. METHODS: A cross-sectional survey of sociodemographics, household characteristics and health conditions of the study population was carried out in 2002. Using a structured questionnaire, the research team surveyed 1,151 households representing 4,987 residents of all ages. The survey was administered to a proxy respondent from each household in face-to-face interviews. A multiple logistic regression model using the generalized estimation equation method was constructed to assess the simultaneous effect of displacement and housing quality on reported ill health, while adjusting for potential confounders. RESULTS: Housing quality and internal displacement were strongly associated with occurrences of chronic illness. The most vulnerable respondents were older residents, females and internally displaced people, who reported high rates of chronic illnesses. Residents with high levels of education were less likely to report a chronic illness than those that had elementary education or less. CONCLUSION: Nabaa residents' experience of poor health was associated with inadequate housing quality. Moreover, residents who have been displaced experience worse living conditions and were more likely to experience poor health than those who were not displaced. These results reveal a need for policies to improve housing quality and alleviate war-related consequences in low-income neighborhoods.

Patient activation in primary healthcare: a comparison between healthier individuals and those with a chronic illness.

PubMed

Wong, Sabrina T; Peterson, Sandra; Black, Charlyn

2011-05-01

Current policy directions place increasing expectations on patients to actively engage in their care, especially in chronic disease management. We examined relationships between patient activation and multiple dimensions of primary healthcare (PHC), including access, utilization, responsiveness, interpersonal communication, and satisfaction for patients with and without chronic illness. Cross-sectional, random digit dial survey conducted in British Columbia (BC), Canada. Stratified sample of adults (n=504), aged 19 to 90 years, who had visited their regular provider within the past 24 months. All data were weighted to represent residents living in BC. Patient activation and PHC experiences include accessibility, continuity, whole-person care, interpersonal communication, responsiveness, chronic disease management, and satisfaction. The multivariate models provide evidence that both quantity of time and quality of interactions with one's regular provider are associated with higher patient activation. Those with no chronic illness had higher activation scores when they spent more time talking with their regular provider, experienced less hurried communication, or if their test results were explained. The more time people with chronic illness are able to spend with their physician, the more activated they were. Chronic illness respondents also had higher activation scores if they reported higher whole-person care or if they were more satisfied. Positive interactions between the patient and the provider can influence the patient's abilities to engage in and be confident in maintaining/improving his/her health. Supporting patients in becoming actively engaged, in ways that work for them, is essential to providing high quality care, especially among those with a chronic condition.

College Freshmen with Chronic Illness: A Comparison with Healthy First-Year Students

ERIC Educational Resources Information Center

Herts, Kate L.; Wallis, Elizabeth; Maslow, Gary

2014-01-01

Over the past four decades, advances in medicine have decreased the mortality rates of many previously fatal chronic diseases. Children who would have died early in life are now living well into adulthood, and many are matriculating as college students. Data regarding the prevalence of chronic illness among college students, the college experience…

Differential Outcomes of Adolescents with Chronically Ill and Healthy Parents

ERIC Educational Resources Information Center

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

2013-01-01

Approximately 10% of children grow up with a parent who has been diagnosed with a chronic medical condition (CMC) and seem to be at risk for adjustment difficulties. We examined differences in behavioral, psychosocial and academic outcomes between 161 adolescents from 101 families with a chronically ill parent and 112 adolescents from 68 families…

Defining the neurotoxin derived illness chronic ciguatera using markers of chronic systemic inflammatory disturbances: a case/control study.

PubMed

Shoemaker, Ritchie C; House, Dennis; Ryan, James C

2010-01-01

Ciguatoxins are extremely potent neurotoxins, produced by tropical marine dinoflagellates, that persistently enter into our food web. Over 100,000 people annually experience acute ciguatera poisoning from consuming toxic fish. Roughly 5% of these victims will develop chronic ciguatera (CC), a widespread, multisymptom, multisystem, chronic illness that can last tens of years. CC is marked by disproportionate disability and non-specific refractory symptoms such as fatigue, cognitive deficits and pain, and is suggestive of other illnesses. Its unknown pathophysiology makes both diagnosis and treatment difficult. We wanted to compare objective parameters of visual contrast sensitivity testing, measures of innate immune response and genetic markers in cases to controls to assess the potential for the presence of persistent inflammatory parameters that are demonstrated in other biotoxin associated illnesses at a single specialty clinic. Using 59 CC cases and 59 controls we present in retrospective review, in all cases, abnormalities in immune responses paralleling the chronic systemic inflammatory response syndrome seen in several other chronic diseases. This study defines a preliminary case definition using medical history, total symptoms, visual contrast sensitivity, HLA DR genotype analysis, reduction of regulatory neuropeptides VIP and MSH, and multiple measures of inflammatory immune response, especially C4a and TGFβ1, thereby providing a basis for identification and targeted therapy. CC provides a model for chronic human illness associated with initiation of inflammatory responses by biologically produced neurotoxins. Copyright © 2010 Elsevier Inc. All rights reserved.

An index of the ratio of inflammatory to antiviral cell types mediates the effects of social adversity and age on chronic illness.

PubMed

Simons, Ronald L; Lei, Man-Kit; Beach, Steven R H; Barr, Ashley B; Cutrona, Carolyn E; Gibbons, Frederick X; Philibert, Robert A

2017-07-01

It is assumed that both social stress and chronological age increase the risk of chronic illness, in part, through their effect on systemic inflammation. Unfortunately, observational studies usually employ single-marker measures of inflammation (e.g., Interleukin-6, C-reactive protein) that preclude strong tests for mediational effects. The present study investigated the extent to which the effects of socioeconomic disadvantage and age on onset of chronic illness is mediated by dominance of the innate (inflammatory) over the acquired (antiviral) components of the immune system. We assessed inflammation using the ratio of inflammatory to antiviral cell types (ITACT Ratio). This approach provided a stronger test of evolutionary arguments regarding the effect of social stress on chronic inflammation than is the case with cytokine measures, and afforded an opportunity to replicate findings obtained utilizing mRNA. We used structural equation modeling and longitudinal data from a sample of 100 middle-age African American women to perform our analyses. Dominance of inflammatory over antiviral cell activity was associated with each of the eight illnesses included in our chronic illness measure. Both socioeconomic disadvantage and age were also associated with inflammatory dominance. Pursuant to the central focus of the study, the effects of socioeconomic adversity and age on increased illness were mediated by our measure of inflammatory dominance. The indirect effect of these variables through inflammatory cell profile was significant, with neither socioeconomic disadvantage nor age showing a significant association with illness once the impact of inflammatory cell profile was taken into account. First, the analysis provides preliminary validation of a new measure of inflammation that is calculated based on the ratio of inflammatory to antiviral white blood cells. Second, our results support the hypothesis that socioeconomic disadvantage and chronological age increase risk for chronic illness in part through their effect on inflammatory processes. Copyright © 2017 Elsevier Ltd. All rights reserved.

Canada's Compassionate Care Benefit: views of family caregivers in chronic illness.

PubMed

Williams, Allison; Crooks, Valorie A; Stajduhar, Kelli I; Allan, Diane; Cohen, S Robin

2006-09-01

Based on a pilot evaluation of Canada's recently introduced Compassionate Care Benefit (CCB), the purpose of this paper is to highlight the experiences of family caregivers caring for people with non-malignant advanced chronic illness. Using Patton's (1997) utilization-focused evaluation approach, 25 telephone interviews were conducted with three groups of family caregivers: those who had successfully applied for the CCB; those who were unsuccessful in their applications; those who had never applied for the benefit. The CCB has a number of limitations, particularly for caregivers of patients diagnosed with non-malignant advanced chronic illness. The central limitations are: difficulties associated with accurate prognostication; limited definition of "family member"; insufficient length of the funding period. By modelling similar programmes internationally, such as those in Sweden, Norway, and the Netherlands, Canada would likely find the CCB to have greater relevance and accessibility to Canadian caregivers, particularly those caring for people with non-malignant advanced chronic illness.

Child Attitude Toward Illness Scale (CATIS): A systematic review of the literature.

PubMed

Ramsey, Rachelle R; Ryan, Jamie L; Fedele, David A; Mullins, Larry L; Chaney, John M; Wagner, Janelle L

2016-06-01

The objective of this study was to systematically review the literature utilizing the Child Attitude Toward Illness Scale (CATIS) as a measure of illness attitudes within pediatric chronic illness, including epilepsy, and provide recommendations for its use. This review includes an examination of the psychometric properties of the CATIS and the relationship between the CATIS and psychological, academic, behavioral, and illness variables. Electronic searches were conducted using Medline and PsychINFO to identify twenty-two relevant publications. The CATIS was identified as a reliable and valid self-report assessment tool across chronic illnesses, including pediatric epilepsy. Although originally developed for children ages 8-12, the CATIS has demonstrated reliability and validity in youth ages 8-22. The CATIS scores were reliably associated with cognitive appraisal variables and internalizing symptoms. Initial support exists for the relation between illness attitudes and externalizing behavior, academic functioning, and psychosocial care needs. Mixed findings were reported with regard to the relation between illness attitudes and demographic and disease variables, as well as both social and family functioning. The CATIS is a psychometrically sound self-report instrument for measuring illness attitudes and demonstrates clinical utility for examining adjustment outcomes across chronic illnesses, particularly pediatric epilepsy. Copyright © 2016 Elsevier Inc. All rights reserved.

Applying a coping with stress questionnaire for cancer patients to patients with non-cancer chronic illnesses.

PubMed

Orive, Miren; Quintana, Jose M; Vrotsou, Kalliopi; Las Hayas, Carlota; Bilbao, Amaia; Barrio, Irantzu; Matellanes, Begoña; Padierna, Jesús A

2013-06-01

One of the few instruments to evaluate coping skills among patients with chronic illnesses is the Cuestionario de Afrontamiento al Estrés para Pacientes Oncológicos (CAEPO), created initially for cancer patients. We evaluate how well CAEPO applies to patients with non-cancer chronic illnesses. A total of 344 patients (115 with chronic hepatitis C, 120 with inflammatory bowel disease and 109 with recurrent vertigo) completed the CAEPO. Exploratory factor analysis and Cronbach's alpha provide only partial support for the seven factors suggested by the original CAEPO. A streamlined version with fewer dimensions and items may be a better solution for identifying coping strategies among these patients.

45 CFR 211.10 - Termination of hospitalization.

Code of Federal Regulations, 2010 CFR

2010-10-01

... of the hospital finds that the eligible person hospitalized for mental illness (whether or not... accordance with laws governing hospitalization for mental illness as may be in force and generally applicable...

Gratitude uniquely predicts lower depression in chronic illness populations: A longitudinal study of inflammatory bowel disease and arthritis.

PubMed

Sirois, Fuschia M; Wood, Alex M

2017-02-01

Although gratitude has been identified as a key clinically relevant trait for improving well-being, it is understudied within medical populations. The current study addressed this gap and extended previous and limited cross-sectional research by examining the longitudinal associations of gratitude to depression in 2 chronic illness samples, arthritis and inflammatory bowel disease (IBD). Two chronic illness samples, arthritis (N = 423) and IBD (N = 427), completed online surveys at Time 1 (T1). One hundred sixty-three people with arthritis and 144 people with IBD completed the 6-month follow-up survey (T2). Depression, gratitude, illness cognitions, perceived stress, social support, and disease-related variables were assessed at T1 and T2. At T2, 57.2% of the arthritis sample and 53.4% of the IBD sample met the cut off scores for significant depression. T1 gratitude was negatively associated with depressive symptoms at T1 and T2 in both samples (rs from -.43 to -.50). Regression analyses revealed that T1 gratitude remained a significant and unique predictor of lower T2 depression after controlling for T1 depression, relevant demographic variables, illness cognitions, changes in illness-relevant variables, and another positive psychological construct, thriving, in both samples. As the first investigation of the longitudinal associations of gratitude to psychological well-being in the context of chronic illness, the current study provides important evidence for the relevance of gratitude for health-related clinical populations. Further intervention-based research is warranted to more fully understand the potential benefits of gratitude for adjustment to chronic illness. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

42 CFR 476.71 - QIO review requirements.

Code of Federal Regulations, 2013 CFR

2013-10-01

... necessary for the diagnosis and treatment of illness or injury or to improve functioning of a malformed body member, or (with respect to pneumococcal vaccine) for prevention of illness or (in the case of hospice care) for the palliation and management of terminal illness; (2) Whether the quality of the services...

42 CFR 476.71 - QIO review requirements.

Code of Federal Regulations, 2014 CFR

2014-10-01

... treatment of illness or injury or to improve functioning of a malformed body member, or (with respect to pneumococcal vaccine) for prevention of illness or (in the case of hospice care) for the palliation and management of terminal illness; (2) Whether the quality of the services meets professionally recognized...

42 CFR 476.71 - QIO review requirements.

Code of Federal Regulations, 2012 CFR

2012-10-01

... necessary for the diagnosis and treatment of illness or injury or to improve functioning of a malformed body member, or (with respect to pneumococcal vaccine) for prevention of illness or (in the case of hospice care) for the palliation and management of terminal illness; (2) Whether the quality of the services...

42 CFR 476.71 - QIO review requirements.

Code of Federal Regulations, 2011 CFR

2011-10-01

... necessary for the diagnosis and treatment of illness or injury or to improve functioning of a malformed body member, or (with respect to pneumococcal vaccine) for prevention of illness or (in the case of hospice care) for the palliation and management of terminal illness; (2) Whether the quality of the services...

Views on a brief mindfulness intervention among patients with long-term illness.

PubMed

Howarth, Ana; Perkins-Porras, Linda; Copland, Claire; Ussher, Michael

2016-11-15

Chronic illness is the leading cause of death in the UK and worldwide. Psychological therapies to support self-management have been shown to play an important role in helping those with chronic illness cope; more recently, the therapeutic benefits of mindfulness approaches have become evident for managing depression and other distressing emotions. Brief guided mindfulness interventions, are more convenient than intensive traditional programmes requiring regular attendance but have been less explored. This study assessed views on a brief (i.e., 10 min) mindfulness intervention for those with specific long-term illnesses. Semi-structured interviews and focus groups were conducted with chronic illness patient groups (i.e., chronic obstructive pulmonary disease, chronic pain and cardiovascular disease), designed to capture the acceptability and feasibility of the intervention. The interviews were conducted after use of a mindfulness based audio in clinic and, one week later, after use in the patient's own environment. Interviews were recorded, transcribed and analysed using thematic analysis. In total, a combination of 18 interviews and focus groups were conducted among 14 patients. Recruitment was most successful with chronic pain patients. All patients reported benefits such as feelings of relaxation and improved coping with symptoms. While the wording and content of the audio were generally well received, it was suggested that the length could be increased, as it felt rushed, and that more guidance about the purpose of mindfulness, and when to use it, was needed. A brief mindfulness intervention was well accepted among patients with long-term illness. The intervention may benefit by being lengthened and by offering further guidance on its use.

Disease-management partnership functioning, synergy and effectiveness in delivering chronic-illness care.

PubMed

Cramm, Jane Murray; Nieboer, Anna Petra

2012-06-01

This study explored associations among disease-management partnership functioning, synergy and effectiveness in the delivery of chronic-illness care. This study had a cross-sectional design. The study sample consists of 218 professionals (out of 393) participating in 22 disease-management partnerships in various regions of the Netherlands. We assessed the relationships among partnership functioning, synergy and effectiveness in the delivery of chronic-illness care. Partnership functioning was assessed through leadership, resources, administration and efficiency. Synergy was considered the proximal outcome of partnership functioning, which, in turn, influenced the effectiveness of disease-management partnerships [measured with the Assessment of Chronic Illness Care (ACIC) survey instrument]. Overall ACIC scores ranged from 3 to 10, indicating basic/intermediate to optimal/comprehensive delivery of chronic-illness care. The results of the regression analysis demonstrate that partnership effectiveness was positively associated with leadership (β = 0.25; P≤ 0.01), and resources (β = 0.31; P≤ 0.001). No significant relationship was found between administration, efficiency and partnership effectiveness. Partnership synergy acted as a mediator for partnership functioning and was statistically significantly associated with partnership effectiveness (β = 0.25; P≤ 0.001). Disease-management partnerships seemed better able to deliver higher levels of chronic-illness care when synergy is created between partners. Synergy was more likely to emerge with boundary-spanning leaders who understood and appreciated partners' different perspectives, could bridge their diverse cultures and were comfortable sharing ideas, resources and power. In addition, the acknowledgement of and ability to use members' resources are valuable in engaging partners' involvement and achieving synergy in disease-management partnerships.

Interventions and decision-making at the end of life: the effect of establishing the terminal illness situation.

PubMed

Campos-Calderón, C; Montoya-Juárez, R; Hueso-Montoro, C; Hernández-López, E; Ojeda-Virto, F; García-Caro, M P

2016-11-07

Many 'routine' interventions performed in hospital rooms have repercussions for the comfort of the patient, and the decision to perform them should depend on whether the patient is identified as in a terminal phase. The aim of this study is to analyse the health interventions performed and decisions made in the last days of life in patients with advanced oncological and non-oncological illness to ascertain whether identifying the patient's terminal illness situation has any effect on these decisions. Retrospective study of the clinical histories of deceased patients in four hospitals in Granada (Spain) in 2010. Clinical histories corresponding to the last three months of the patient's life were reviewed. A total of 202 clinical histories were reviewed, 60 % of which were those of non-oncology patients. Opioid prescriptions (58.4 %), palliative sedation (35.1 %) and Do Not Resuscitate (DNR) orders (34.7 %) were the decisions most often reflected in the histories, and differences in these decisions were found between patients registered as terminal and those who were not registered as terminal. The most frequent interventions in the final 14 days and 48 h were parenteral hydration (96-83 %), peripheral venous catheter (90.1-82 %) and oxygen therapy (81.2-70.5 %). There were statistically significant differences between the patients who were registered as terminal and those not registered as terminal in the number of interventions applied in the final 14 days and 48 h (p = 0.01-p = 0.00) and in many of the described treatments. The recognition of a patient's terminal status in the clinical history conditions the decisions that are made and is generally associated with a lower number of interventions.

Aging and the Right to Terminate Medical Treatment

ERIC Educational Resources Information Center

Haug, Marie

1978-01-01

Belief in right to terminate medical care in case of irreversible terminal illness is analyzed by age, education, health, and attitudes to patient rights. Although age is related to supporting right to halt treatment, with those over 65 least supportive, relation to professional care in general has more explanatory power. (Author)

Care of the Chronically Ill at Home: An Unresolved Dilemma in Health Policy for the United States

PubMed Central

Buhler-Wilkerson, Karen

2007-01-01

The problems of caring for patients with disabling illnesses who neither get well nor die are not new. Such patients have always required assistance at home from family, benevolent volunteers, or paid caregivers. Despite two centuries of experimentation, however, no agreement exists concerning the balance between the public and private resources to be allocated through state funding, private insurance, and family contributions for the daily and routine care at home for chronically ill persons of all ages. This article examines these issues and the unavoidable tensions between fiscal reality and legitimate need. It also uses historical and policy analyses to explain why home care has never become the cornerstone for caring for the chronically ill. PMID:18070332

Dimensions of Phenomenology in Exploring Patient’s Suffering in Long-Life Illnesses

PubMed Central

Al Kalaldeh, Mahmoud; Shosha, Ghada Abu; Saiah, Najah; Salameh, Omar

2017-01-01

Background: Patients’ suffering has been increasingly investigated by health-care researchers especially in the chronically ill. Suffering is viewed as a progressive negative consequence that associated with pain, impaired self-esteem, and social alienation. This qualitative evidence synthesis aimed to provide further insights into the application of phenomenology in explaining suffering among patients with chronic illnesses. Methods: Studies included in this qualitative evidence synthesis study were retrieved by searching from the following electronic databases: CINAHL, PubMed Central, and EBSCO. Findings: Phenomenology is regarded as influential to generate in-depth evidence about suffering that are grounded in chronically ill patients’ perspectives. The philosophical constructs of suffering suggested fundamental dimensions such as stress, distress, hopelessness, and depression along with pain. Evidence encompasses the entire manifestation of suffering in which all interrelated meanings are understood and referred to a unique structure. Hermeneutic phenomenology was adopted as an effective strategy to elucidate human experience leading to the discovery of the embedded meanings of life experience. Conclusion: The phenomenological approach provides nursing research with the pathway to explore patients’ suffering experiences in the chronically ill. PMID:29582010

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

ERIC Educational Resources Information Center

Akre, Christina; Suris, Joan-Carles

2014-01-01

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

Paradigms for investigating rehabilitation and adaptation to childhood disability and chronic illness.

PubMed

Harper, D C

1991-10-01

Significant research perspectives in investigating chronic illness and disability are presented. Historical research conceptualizations in childhood disability are reviewed and newer contexts for evaluating disorder are presented. Future research in childhood illness and disability is directed toward basing investigations on theoretical models and promoting prospective longitudinal programs. Pediatric psychologists are encouraged to consider more collaborative efforts to move the field forward systematically.

Patient- and family-centered performance measures focused on actionable processes of care for persistent and chronic critical illness: protocol for a systematic review.

PubMed

Rose, Louise; Istanboulian, Laura; Allum, Laura; Burry, Lisa; Dale, Craig; Hart, Nicholas; Kydonaki, Claire; Ramsay, Pam; Pattison, Natalie; Connolly, Bronwen

2017-04-17

Approximately 5 to 10% of critically ill patients transition from acute critical illness to a state of persistent and in some cases chronic critical illness. These patients have unique and complex needs that require a change in the clinical management plan and overall goals of care to a focus on rehabilitation, symptom relief, discharge planning, and in some cases, end-of-life care. However, existing indicators and measures of care quality, and tools such as checklists, that foster implementation of best practices, may not be sufficiently inclusive in terms of actionable processes of care relevant to these patients. Therefore, the aim of this systematic review is to identify the processes of care, performance measures, quality indicators, and outcomes including reports of patient/family experience described in the current evidence base relevant to patients with persistent or chronic critical illness and their family members. Two authors will independently search from inception to November 2016: MEDLINE, Embase, CINAHL, Web of Science, the Cochrane Library, PROSPERO, the Joanna Briggs Institute and the International Clinical Trials Registry Platform. We will include all study designs except case series/reports of <10 patients describing their study population (aged 18 years and older) using terms such as persistent critical illness, chronic critical illness, and prolonged mechanical ventilation. Two authors will independently perform data extraction and complete risk of bias assessment. Our primary outcome is to determine actionable processes of care and interventions deemed relevant to patients experiencing persistent or chronic critical illness and their family members. Secondary outcomes include (1) performance measures and quality indicators considered relevant to our population of interest and (2) themes related to patient and family experience. We will use our systematic review findings, with data from patient, family member and clinician interviews, and a subsequent consensus building process to inform the development of quality metrics and tools to measure processes of care, outcomes and experience for patients experiencing persistent or chronic critical illness and their family members. PROSPERO CRD42016052715.

Illness perception in Chinese adults with epilepsy.

PubMed

Ji, Haixia; Zhang, Lei; Li, Lunlan; Gong, Guiping; Cao, Zhaolun; Zhang, Jianfeng; Zhou, Nong; Wang, Yu; Tu, Houmian; Wang, Kai

2016-12-01

Epilepsy is among the most common neurological disorders worldwide. Understanding the patient's subjective experience plays an important role in the treatment and rehabilitation of the patient. However, few studies are concerned about the illness perception of Chinese adults with epilepsy. 117 Chinese adults with epilepsy and 87 Chinese adults with chronic liver disease completed the Chinese version of the Revised Illness Perception Questionnaire (CIPQ-R). The Chinese epilepsy patients also completed the Social Support Rating Scale (SSRS) and Simplified Coping Style Questionnaire (SCSQ). A comparison about CIPQ-R score between the epilepsy group and chronic liver group was conducted using the independent sample t test. Partial correlation coefficients were calculated among the eight subscales of the CIPQ-R and its associated factors. Results for the CIPQ-R indicated that both the epilepsy patients and the chronic liver disease patients had a moderate belief in their personal control and treatment control over their disorder. Consistent with our hypothesis, patients with epilepsy and those with chronic liver disease perceived their respective disease similarly in terms of timeline and illness coherence. However, epilepsy patients had a higher negative emotional representations level than that we expected when compared to those of the patients suffering from chronic liver disease. Partial correlation analysis in Chinese epilepsy patients showed that the timeline acute/chronic dimension and emotional representations dimension were closely related to the other dimensions of illness perception. Moreover, the illness perception of the patients was significantly associated with social support, coping style, duration of epilepsy, seizure frequency, and the number of antiepileptic drugs. Chinese patients with epilepsy had limited understanding of the illness, and poor belief in personal control and treatment control. They had a negative emotional response to their illness, and feared of the effects on the patient or patient's family. Social support, coping style, duration of epilepsy, seizure frequency, and the number of antiepileptic drugs could affect the illness perception of these patients. Further studies should focus on how to improve patients' attitudes towards their disease. Copyright © 2016 Elsevier B.V. All rights reserved.

Facilitating job retention for chronically ill employees: perspectives of line managers and human resource managers

PubMed Central

2011-01-01

Background Chronic diseases are a leading contributor to work disability and job loss in Europe. Recent EU policies aim to improve job retention among chronically ill employees. Disability and occupational health researchers argue that this requires a coordinated and pro-active approach at the workplace by occupational health professionals, line managers (LMs) and human resource managers (HRM). Little is known about the perspectives of LMs an HRM on what is needed to facilitate job retention among chronically ill employees. The aim of this qualitative study was to explore and compare the perspectives of Dutch LMs and HRM on this issue. Methods Concept mapping methodology was used to elicit and map statements (ideas) from 10 LMs and 17 HRM about what is needed to ensure continued employment for chronically ill employees. Study participants were recruited through a higher education and an occupational health services organization. Results Participants generated 35 statements. Each group (LMs and HRM) sorted these statements into six thematic clusters. LMs and HRM identified four similar clusters: LMs and HRM must be knowledgeable about the impact of chronic disease on the employee; employees must accept responsibility for work retention; work adaptations must be implemented; and clear company policy. Thematic clusters identified only by LMs were: good manager/employee cooperation and knowledge transfer within the company. Unique clusters identified by HRM were: company culture and organizational support. Conclusions There were both similarities and differences between the views of LMs and HRM on what may facilitate job retention for chronically ill employees. LMs perceived manager/employee cooperation as the most important mechanism for enabling continued employment for these employees. HRM perceived organizational policy and culture as the most important mechanism. The findings provide information about topics that occupational health researchers and planners should address in developing job retention programs for chronically ill workers. PMID:21586139

Facilitating job retention for chronically ill employees: perspectives of line managers and human resource managers.

PubMed

Haafkens, Joke A; Kopnina, Helen; Meerman, Martha G M; van Dijk, Frank J H

2011-05-17

Chronic diseases are a leading contributor to work disability and job loss in Europe. Recent EU policies aim to improve job retention among chronically ill employees. Disability and occupational health researchers argue that this requires a coordinated and pro-active approach at the workplace by occupational health professionals, line managers (LMs) and human resource managers (HRM). Little is known about the perspectives of LMs an HRM on what is needed to facilitate job retention among chronically ill employees. The aim of this qualitative study was to explore and compare the perspectives of Dutch LMs and HRM on this issue. Concept mapping methodology was used to elicit and map statements (ideas) from 10 LMs and 17 HRM about what is needed to ensure continued employment for chronically ill employees. Study participants were recruited through a higher education and an occupational health services organization. Participants generated 35 statements. Each group (LMs and HRM) sorted these statements into six thematic clusters. LMs and HRM identified four similar clusters: LMs and HRM must be knowledgeable about the impact of chronic disease on the employee; employees must accept responsibility for work retention; work adaptations must be implemented; and clear company policy. Thematic clusters identified only by LMs were: good manager/employee cooperation and knowledge transfer within the company. Unique clusters identified by HRM were: company culture and organizational support. There were both similarities and differences between the views of LMs and HRM on what may facilitate job retention for chronically ill employees. LMs perceived manager/employee cooperation as the most important mechanism for enabling continued employment for these employees. HRM perceived organizational policy and culture as the most important mechanism. The findings provide information about topics that occupational health researchers and planners should address in developing job retention programs for chronically ill workers.

[Self esteem of chronically ill children and adolescence exemplified by obesity and congenital heart defect].

PubMed

Sticker, Elisabeth; Schmidt, Claudia; Steins, Gisela

2003-01-01

Coping with a chronic illness challenges children and adolescents in addition to their normal developmental tasks. This double challenge probably endangers the development of a stable self-esteem. The present investigation explores the possibility whether these processes are different with respect to the kind of illness. Chronic illnesses such as obesity and congenital heart defects (CHD) serve as examples in comparing two samples (8-16 years): obesity (N = 54) as visible and partly controllable illness (with respect to the course of illness) vs. congenital heart disease (N = 56) as invisible and uncontrollable illness (with respect to the origin and course of illness). Self-esteem is measured by a scale (ALS) which focuses on the public areas "school" and "leisure time" and the private area "family". Children and adolescents with CHD (especially females) display an above-average positive self-esteem in all areas. Children and adolescents with obesity mainly display an average self-esteem, the females scoring above-average for the private area "family", the males scoring below-average for the public area "leisure time". Furthermore, leisure-time related self-esteem is significantly lower for obese than for CHD subjects. These specific relations implicate differential accentuations for intervention programs.

A Comparison of Guilt in Bereaved Parents Whose Children Died by Suicide, Accident, or Chronic Disease.

ERIC Educational Resources Information Center

Miles, Margaret Shandor; Demi, Alice Sterner

1992-01-01

Compared guilt experiences of parents (n=132) whose children (aged 1-36) died by suicide, accident, or chronic illness. Guilt was reported by 92 percent of suicide bereaved parents, 78 percent of accident bereaved parents, and 71 percent of chronic disease bereaved parents. Six sources of guilt (Death Causation, Illness-Related, Childrearing,…

A Photo Elicitation Study on Chronically Ill Adolescents’ Identity Constructions During Transition

PubMed Central

Hanghøj, Signe; Boisen, Kirsten A.; Schmiegelow, Kjeld; Hølge-Hazelton, Bibi

2016-01-01

Adolescence is an important phase of life with increasing independence and identity development, and a vulnerable period of life for chronically ill adolescents with a high occurrence of insufficient treatment adherence. We conducted four photo elicitation focus group interviews with 14 adolescents (12-20 years) with juvenile idiopathic arthritis to investigate identity constructions during transition. Using a discourse analysis approach, six identity types were identified distributed on normal and marginal identities, which were lived either at home (home arena) or outside home with peers (out arena). Most participants positioned themselves as normal in the out arena and as ill in the home arena. Few participants positioned themselves as ill in an out arena, and they described how peers perceived this as a marginal and skewed behavior. This study contributes to a better understanding of why it can be extremely difficult to live with a chronic illness during adolescence. PMID:28462329

Utilizing role theory to help employed parents cope with children's chronic illness.

PubMed

Major, Debra A

2003-02-01

Role theory is utilized to detail a six-step process for developing balanced coping through role negotiation. As applied in this paper, the role theory framework provides health educators with a useful tool for helping employed parents cope with a child's chronic illness. The emphasis is on partnering with parents or primary caregivers to identify, understand and manage the multiple role demands of working parents with chronically ill children. Role theory suggests ways health educators can support balanced coping by educating families about the demands of a child's illness, and helping to reduce those demands, helping to increase family resources, supporting parents and facilitating role negotiation. The ultimate goal is the development of balanced coping strategies that (1) meet the medical and emotional needs of the ill child, (2) allow parents to maintain their physical and mental health, and (3) enable parents to meet the demands of their other roles (e.g. paid employment).

Termination of pseudopregnancy in the rat alters the response to progesterone, chlordiazepoxide, and MK-801 in the elevated plus-maze.

PubMed

Bitran, Daniel; Solano, Steven M

2005-07-01

Allopregnanolone, a neurosteroid-reduced metabolite of progesterone, is a well-documented positive modulator of the gamma-aminobutyric type A (GABA(A)) receptor. As has been reported for other positive modulators of the GABA(A) receptor, chronic exposure to neurosteroids is hypothesized to decrease GABA(A) receptor function. Drawing from the literature on chronic exposure to benzodiazepines or alcohol, putative changes in N-methyl-D-aspartate (NMDA) receptor function are also expected after chronic neurosteroid exposure. To assess the sensitivity of the GABA(A) and NMDA receptors after chronic elevation of neurosteroid produced by termination of pseudopregnancy in behavioral tests of anxiety and sensorimotor coordination. Female rats ovariectomized on day 10 of pseudopregnancy were tested in the elevated plus-maze and on the rotor rod after an acute injection of progesterone (4 mg/0.2 ml, s.c.), chlordiazepoxide (5 or 15 mg/kg, i.p.), or MK-801 (0.025, 0.05, or 0.1 mg/kg, i.p.). Pseudopregnancy termination produced an anxiogenic-like response in the plus-maze; an acute injection of progesterone restored baseline levels of behavior in this test. Pseudopregnancy termination eliminated the anxiolytic-like, sedative, and ataxic effects of chlordiazepoxide. In contrast, pseudopregnancy termination produced an increased sensitivity to the anxiolytic-like and ataxic effects of MK-801. The effects of pseudopregnancy termination on the behavioral response to positive modulators of the GABA(A) receptor are consistent with results from studies in which chronic exposure to neurosteroids decreases the response to acute neurosteroid and benzodiazepine administration. However, unlike the enhanced glutamatergic tone resulting from discontinuation of chronic benzodiazepine or alcohol exposure, the termination of pseudopregnancy apparently decreases NMDA receptor function.

42 CFR 418.24 - Election of hospice care.

Code of Federal Regulations, 2013 CFR

2013-10-01

... curative nature of hospice care, as it relates to the individual's terminal illness. (3) Acknowledgement... hospice). (2) Any Medicare services that are related to the treatment of the terminal condition for which...

42 CFR 418.24 - Election of hospice care.

Code of Federal Regulations, 2014 CFR

2014-10-01

... palliative rather than curative nature of hospice care, as it relates to the individual's terminal illness... designated hospice). (2) Any Medicare services that are related to the treatment of the terminal condition...

42 CFR 418.24 - Election of hospice care.

Code of Federal Regulations, 2011 CFR

2011-10-01

... curative nature of hospice care, as it relates to the individual's terminal illness. (3) Acknowledgement... hospice). (2) Any Medicare services that are related to the treatment of the terminal condition for which...

42 CFR 418.24 - Election of hospice care.

Code of Federal Regulations, 2012 CFR

2012-10-01

... curative nature of hospice care, as it relates to the individual's terminal illness. (3) Acknowledgement... hospice). (2) Any Medicare services that are related to the treatment of the terminal condition for which...

Adaptive Leadership Framework for Chronic Illness

PubMed Central

Anderson, Ruth A.; Bailey, Donald E.; Wu, Bei; Corazzini, Kirsten; McConnell, Eleanor S.; Thygeson, N. Marcus; Docherty, Sharron L.

2015-01-01

We propose the Adaptive Leadership Framework for Chronic Illness as a novel framework for conceptualizing, studying, and providing care. This framework is an application of the Adaptive Leadership Framework developed by Heifetz and colleagues for business. Our framework views health care as a complex adaptive system and addresses the intersection at which people with chronic illness interface with the care system. We shift focus from symptoms to symptoms and the challenges they pose for patients/families. We describe how providers and patients/families might collaborate to create shared meaning of symptoms and challenges to coproduce appropriate approaches to care. PMID:25647829

The impacts of using community health volunteers to coach medication safety behaviors among rural elders with chronic illnesses.

PubMed

Wang, Chi-Jane; Fetzer, Susan J; Yang, Yi-Ching; Wang, Jing-Jy

2013-01-01

It is a challenge for rural health professionals to promote medication safety among older adults taking multiple medications. A volunteer coaching program to promote medication safety among rural elders with chronic illnesses was designed and evaluated. A community-based interventional study randomly assigned 62 rural elders with at least two chronic illnesses to routine care plus volunteer coaching or routine care alone. The volunteer coaching group received a medication safety program, including a coach and reminders by well-trained volunteers, as well as three home visits and five telephone calls over a two-month period. All the subjects received routine medication safety instructions for their chronic illnesses. The program was evaluated using pre- and post-tests of knowledge, attitude and behaviors with regard to medication safety. Results show the volunteer coaching group improved their knowledge of medication safety, but there was no change in attitude after the two-month study period. Moreover, the group demonstrated three improved medication safety behaviors compared to the routine care group. The volunteer coaching program and instructions with pictorial aids can provide a reference for community health professionals who wish to improve the medication safety of chronically ill elders. Copyright © 2013 Mosby, Inc. All rights reserved.

On withholding nutrition and hydration in the terminally ill: has palliative medicine gone too far?

PubMed Central

Craig, G M

1994-01-01

This paper explores ethical issues relating to the management of patients who are terminally ill and unable to maintain their own nutrition and hydration. A policy of sedation without hydration or nutrition is used in palliative medicine under certain circumstances. The author argues that this policy is dangerous, medically, ethically and legally, and can be disturbing for relatives. The role of the family in management is discussed. This issue requires wide debate by the public and the profession. PMID:7527863

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

PubMed

Satterwhite, B B

1978-01-01

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

Care Coordination for the Chronically Ill: Understanding the Patient's Perspective

PubMed Central

Maeng, Daniel D; Martsolf, Grant R; Scanlon, Dennis P; Christianson, Jon B

2012-01-01

Objective To identify factors associated with perception of care coordination problems among chronically ill patients. Methods Patient-level data were obtained from a random-digit dial telephone survey of adults with chronic conditions. The survey measured respondents' self-report of care coordination problems and level of patient activation, using the Patient Activation Measure (PAM-13). Logistic regression was used to assess association between respondents' self-report of care coordination problems and a set of patient characteristics. Results Respondents in the highest activation stage had roughly 30–40 percent lower odds of reporting care coordination problems compared to those in the lowest stage (p < .01). Respondents with multiple chronic conditions were significantly more likely to report coordination problems than those with hypertension only. Respondents' race/ethnicity, employment, insurance status, income, and length of illness were not significantly associated with self-reported care coordination problems. Conclusion We conclude that patient activation and complexity of chronic illness are strongly associated with patients' self-report of care coordination problems. Developing targeted strategies to improve care coordination around these patient characteristics may be an effective way to address the issue. PMID:22985032

[Social representations of illness among people with chronic kidney disease].

PubMed

Campos, Caroline Gonçalves Pustiglione; Mantovani, Maria de Fátima; Nascimento, Maria Elisa Brum do; Cassi, Cristiam Carla

2015-06-01

To describe the social representations of illness among people with chronic kidney disease undergoing haemodialysis. Descriptive, qualitative research, anchored on the social representations theory. This study was conducted in the municipality of Ponta Grossa, Paraná State, Brazil, with 23 adults with chronic kidney disease. Data were collection between February and November 2012 by means of a semi-structured interview, and analyzed using Content Analysis. The interviews led to the categories "the meaning of kidney disease": awareness of finitude, and "survival": the visible with chronic kidney disease. The representation of illness unveiled a difference and interruption in life projects, and haemodialysis meant loss of freedom, imprisonment and stigma. Family ties and the individuals´ social role are determining representations for healthcare.

Coping with terminal illness: the experience of attending Specialist Palliative Day Care.

PubMed

Bradley, Sarah Elizabeth; Frizelle, Dorothy; Johnson, Miriam

2010-10-01

The provision of supportive and palliative care for people with life-shortening illness has been emphasized throughout Department of Health and National Institute of Clinical Excellence (NICE) cancer guidance. However, the question of whether services are achieving this aim has been sparsely researched to date particularly in relation to Specialist Palliative Day Care (SPDC) services. The current study aims to explore the experiences of patients attending SPDC with regard to coping with a terminal illness. The views of 11 patients attending SPDC were explored using semistructured interviews. An exploratory methodology (Interpretative Phenomenological Analysis [IPA]) was used to analyze the data to allow for an in-depth investigation. Emerging themes suggest that SPDC provides an environment in which patients are helped to cope with stressors through a sense of self, belonging, acceptance of the reality of death, and a focus on life. This work provides a piece of the puzzle in the exploration of the processes underpinning attendance at SPDC from a patient's perspective. It suggests that SPDC provides an environment in which patients receive help in coping with terminal illness. In such an under researched area it provides an insight regarding SPDC attendance which can be built upon or challenged by future research.

Finding joy in poor health: The leisure-scapes of chronic illness.

PubMed

McQuoid, Julia

2017-06-01

Globally, increasing numbers of people face the challenge of enjoying life while living with long-term illness. Little research addresses leisure participation for people with chronic illness despite its links with mental and physical health and self-rated quality of life. I use a space-time geographical approach to explore experiences with leisure in everyday life for 26 individuals with chronic kidney disease (CKD) in Australia. I examine ways in which the spatial and temporal characteristics of illness management and symptoms shape where, when, and how participants can enjoy leisure, focusing on: 1) logistical conflicts between illness and leisure; 2) rhythmic interferences with the force of habit in skilful leisure performance; and 3) absorbing experiences of encounter with self and place through leisure. Data were collected from 2013 to 2014. Participants kept diaries over two sample days and then participated in semi-structured interviews. Findings show that the voluntary nature of leisure offered participants important benefits in coping with and managing illness over the long-term, including opportunities to experience greater sense of control, an alternative experience of one's body to the 'sick body', and knowledge creation that supports adaptation to the uncertainties of illness trajectories. The ability to engage in meaningful leisure was constrained by the shaping forces of illness symptoms and management on participants' leisure-scapes. Illness treatment regimens should therefore be adapted to better accommodate leisure participation for chronically ill patients, and leisure should be explicitly incorporated into illness management plans negotiated between patients and health practitioners. Finally, greater understanding of the transformative capacity of habit in activities of experimentation and play may have wider-reaching implications for leisure's potential applications in public health. Leisure should be taken seriously as a vehicle for enhancing wellbeing and adaptation to life with long-term illness. Copyright © 2017 Elsevier Ltd. All rights reserved.

Finding joy in poor health: The leisure-scapes of chronic illness

PubMed Central

2017-01-01

Globally, increasing numbers of people face the challenge of enjoying life while living with long-term illness. Little research addresses leisure participation for people with chronic illness despite its links with mental and physical health and self-rated quality of life. I use a space-time geographical approach to explore experiences with leisure in everyday life for 26 individuals with chronic kidney disease (CKD) in Australia. I examine ways in which the spatial and temporal characteristics of illness management and symptoms shape where, when, and how participants can enjoy leisure, focusing on: 1) logistical conflicts between illness and leisure; 2) rhythmic interferences with the force of habit in skilful leisure performance; and 3) absorbing experiences of encounter with self and place through leisure. Data were collected from 2013 to 2014. Participants kept diaries over two sample days and then participated in semi-structured interviews. Findings show that the voluntary nature of leisure offered participants important benefits in coping with and managing illness over the long-term, including opportunities to experience greater sense of control, an alternative experience of one’s body to the ‘sick body’, and knowledge creation that supports adaptation to the uncertainties of illness trajectories. The ability to engage in meaningful leisure was constrained by the shaping forces of illness symptoms and management on participants’ leisure-scapes. Illness treatment regimens should therefore be adapted to better accommodate leisure participation for chronically ill patients, and leisure should be explicitly incorporated into illness management plans negotiated between patients and health practitioners. Finally, greater understanding of the transformative capacity of habit in activities of experimentation and play may have wider-reaching implications for leisure’s potential applications in public health. Leisure should be taken seriously as a vehicle for enhancing wellbeing and adaptation to life with long-term illness. PMID:28475903

Prolonged grief symptoms related to loss of physical functioning: examining unique associations with medical service utilization.

PubMed

Holland, Jason M; Graves, Stacy; Klingspon, Kara L; Rozalski, Vincent

2016-01-01

Prolonged grief, a severe and chronic form of grieving most commonly studied in the context of bereavement, may have relevance to losses associated with chronic illness (e.g. grief related to loss of functioning or loss of a planned future). The purpose of the present study is to examine the unique associations between prolonged grief symptoms and service utilization patterns. An online self-report assessment battery was administered among a sample of 275 older adults with at least one chronic illness that caused significant physical impairment. Even after statistically controlling for relevant physical health (e.g. severity of physical limitations, somatic symptoms, number of chronic illnesses) and psychosocial variables (e.g. social support, depression/anxiety), more severe prolonged grief symptoms were associated with a greater number of emergency room visits, overnight stays in the hospital and total nights in the hospital. These findings highlight the importance of screening for prolonged grief symptomatology with older individuals with a debilitating chronic illness. Recent evidence suggests that prolonged grief may have relevance for losses associated with physical illness. The present study shows that prolonged grief reactions related to physical illness (e.g. grieving the loss of functioning) are uniquely associated with increased hospital-based service utilization. Given the relevance of prolonged grief reactions in this population, practitioners may wish to assess for these symptoms. Future clinical research should focus on developing interventions to target prolonged grief symptoms associated with these losses.

When work and satisfaction with life do not go hand in hand: health barriers and personal resources in the participation of people with chronic physical disabilities.

PubMed

van Campen, Cretien; Cardol, Mieke

2009-07-01

People with chronic physical disabilities participate less in both paid and voluntary work and are less satisfied with their lives than people without health problems. Governments and scientists have suggested that participation in employment is the main road to well-being. We analysed national survey data on the participation in work and satisfaction with life, comparing people with a chronic illness and a physical disability (n=603) to people with a chronic illness but without a physical disability (n=1199) and the general population (n=6128) in the Netherlands. The results show that the relationship between happiness and work is different for people with a chronic illness and a physical disability, as compared to the other two populations. Fewer people with a chronic illness and disability were categorized as 'satisfied people with work' (i.e. participating in work and satisfied with their life), while most people belonged to a group of 'satisfied people without work' and, surprisingly, not to the expected group of 'dissatisfied people without work'. In order to explain this exceptional distribution we modelled satisfied participation in work as an outcome of a balance between personal resources and barriers. By means of discriminant regression analysis, we identified the severity of motor disability as the main barrier, and education level and age, as the main resource factors that distinguish between 'satisfied people with work' and others among the group of people with a chronic illness and a physical disability.

Unsolicited written narratives as a methodological genre in terminal illness: challenges and limitations.

PubMed

O'Brien, Mary R; Clark, David

2012-02-01

Stories about illness have proven invaluable in helping health professionals understand illness experiences. Such narratives have traditionally been solicited by researchers through interviews and the collection of personal writings, including diaries. These approaches are, however, researcher driven; the impetus for the creation of the story comes from the researcher and not the narrator. In recent years there has been exponential growth in illness narratives created by individuals, of their own volition, and made available for others to read in print or as Internet accounts. We sought to determine whether it was possible to identify such material for use as research data to explore the subject of living with the terminal illness amyotrophic lateral sclerosis/motor neuron disease--the contention being that these accounts are narrator driven and therefore focus on issues of greatest importance to the affected person. We encountered and sought to overcome a number of methodological and ethical challenges, which is our focus here.

Talking about Illness: Mothers' and Toddlers' Conversations during a Joint Book-Reading Task

ERIC Educational Resources Information Center

White, Carmel Parker; Bellamy, Roberta Woodlief; Powell, Monica Creech; Wittenauer, Ashley Rae

2011-01-01

This study examined the language used by mothers to talk about acute and chronic illness while engaged in a joint book-reading of a story where the main character had a cold. Thirty-four toddlers and their mothers participated in the study. Some of the mothers had a chronic illness, and some of the families or the children had had an acute illness…

Primate paneth cell degeneration following methylmercury hydroxide ingestion.

PubMed Central

Mottet, N. K.; Body, R. L.

1976-01-01

The effects of methylmercury on the intestinal epithelium were studied in 14 adolescent male Macaca mulatta monkeys weighing 3 to 5 kg. They were divided into three groups: two controls received daily applesauce vehicle without methylmercury. Nine chronic low-dose animals received 0.2 to 1.0 mg of methylmercury per day for 80 to 491 days. Three acute high-dose animals received 2.0 mg methylmercury for 17 to 18 days, when they became terminally ill. Light and electron microscopic observations were made on samples of duodenum and ileum following perfusion and immersion fixation in a glutaraldehyde-paraformaldehyde fixative. Numerous uniquely structured inclusions were prominent in the Paneth cells of the chronic low-dose animals and some necrotic Paneth cells were seen, especially in the most chronic and higher dosed animals of the group. Acute high-dose treatment produced some inclusions in the Paneth cells similar to those of the chronic low-dose group, but degenerative and necrotic cells were more frequently seen. These alterations were not seen in other intestinal epithelial cells. Paneth cells are selectively altered. These findings suggest that a function of Paneth cells may be to eliminate metals from the body. Images Figure 11 Figure 12 Figure 13 Figure 1 Figure 2 Figure 3 Figures 4 and 5 Figure 14 Figure 15 Figures 16-18 Figures 6-10 PMID:820204

Chronic Illness in Adolescents: A Sociological Perspective.

ERIC Educational Resources Information Center

Silber, Tomas J.

1983-01-01

Relates chronic illness in adolescents to a sociological model of deviance. Four situations are discussed in which the issues of prognosis, responsibility, and stigma elicit societal response. The usefulness of a sociological model consists in making vague societal perceptions and rules explicit. (JAC)

24 CFR 91.5 - Definitions.

Code of Federal Regulations, 2010 CFR

2010-04-01

... chronically homeless, a person must have been sleeping in a place not meant for human habitation (e.g., living... disorder, serious mental illness, developmental disability, or chronic physical illness or disability... designed for, or ordinarily used as, a regular sleeping accommodation for human beings. Homeless...

Health services utilization during terminal illness in Addis Ababa, Ethiopia

PubMed Central

Reniers, Georges; Tesfai, Rebbeca

2009-01-01

Objectives We describe modern and alternative health services use in terminal illness of adults, and assess whether utilization patterns of TB/AIDS patients are distinct from those of patients suffering from other illnesses. Methods Data are from post-mortem interviews with close relatives or caretakers of the deceased. We provide descriptive statistics of health care utilization in adults and discuss their covariates in multivariate analyses. Results Over 85% of terminally sick patients visited a modern medical facility, but less than 40% spent more than 24 hours in a medical facility and only 25% died in one. Traditional healer (11%) and holy water (46%) visits offer a common treatment and healing alternative, but these visits do not co-vary in any consistent manner with the utilization of modern medical services. In terms of the cause of death, we find a higher contact rate with both modern and alternative medical service providers among TB/AIDS patients compared with those suffering from other medical conditions. The duration of illness seems to account for a good share of that variability. Other covariates of health services utilization are socio-economic status, education and age. Conclusions The contact rate of adults with modern medical facilities in terminal illness is almost universal, but their usage intensity is rather low. Alternative curative options are less commonly used, and do not exclude modern health services use. This suggests that both types of services are considered complements rather than alternatives for each other. Because the contact rate with health service providers is greatest for TB/AIDS patients, it is unlikely that HIV/AIDS-related stigma is an impediment to seeking care. We cannot exclude, however, that it delays health-seeking behaviour. PMID:19372240

Health services utilization during terminal illness in Addis Ababa, Ethiopia.

PubMed

Reniers, Georges; Tesfai, Rebbeca

2009-07-01

OBJECTIVES We describe modern and alternative health services use in terminal illness of adults, and assess whether utilization patterns of TB/AIDS patients are distinct from those of patients suffering from other illnesses. METHODS Data are from post-mortem interviews with close relatives or caretakers of the deceased. We provide descriptive statistics of health care utilization in adults and discuss their covariates in multivariate analyses. RESULTS Over 85% of terminally sick patients visited a modern medical facility, but less than 40% spent more than 24 hours in a medical facility and only 25% died in one. Traditional healer (11%) and holy water (46%) visits offer a common treatment and healing alternative, but these visits do not co-vary in any consistent manner with the utilization of modern medical services. In terms of the cause of death, we find a higher contact rate with both modern and alternative medical service providers among TB/AIDS patients compared with those suffering from other medical conditions. The duration of illness seems to account for a good share of that variability. Other covariates of health services utilization are socio-economic status, education and age. CONCLUSIONS The contact rate of adults with modern medical facilities in terminal illness is almost universal, but their usage intensity is rather low. Alternative curative options are less commonly used, and do not exclude modern health services use. This suggests that both types of services are considered complements rather than alternatives for each other. Because the contact rate with health service providers is greatest for TB/AIDS patients, it is unlikely that HIV/AIDS-related stigma is an impediment to seeking care. We cannot exclude, however, that it delays health-seeking behaviour.

KCBX Quality Assurance Project Plan - October 2014

EPA Pesticide Factsheets

This revised plan's standards for data quality, sampling and testing methods, and task management guide the implementation of Ambient Air Monitoring by URS Corporation at the KCBX Terminals Company North and South Terminals in Chicago, Ill.

Abandonment of terminally ill patients in the Byzantine era. An ancient tradition?

PubMed

Lascaratos, J; Poulakou-Rebelakou, E; Marketos, S

1999-06-01

Our research on the texts of the Byzantine historians and chroniclers revealed an apparently curious phenomenon, namely, the abandonment of terminally ill emperors by their physicians when the latter realised that they could not offer any further treatment. This attitude tallies with the mentality of the ancient Greek physicians, who even in Hippocratic times thought the treatment and care of the terminally ill to be a challenge to nature and hubris to the gods. Nevertheless, it is a very curious attitude in the light of the concepts of the Christian Byzantine physicians who, according to the doctrines of the Christian religion, should have been imbued with the spirit of philanthropy and love for their fellowmen. The meticulous analysis of three examples of abandonment of Byzantine emperors, and especially that of Alexius I Comnenus, by their physicians reveals that this custom, following ancient pagan ethics, in those times took on a ritualised form without any significant or real content.

Abandonment of terminally ill patients in the Byzantine era. An ancient tradition?

PubMed Central

Lascaratos, J; Poulakou-Rebelakou, E; Marketos, S

1999-01-01

Our research on the texts of the Byzantine historians and chroniclers revealed an apparently curious phenomenon, namely, the abandonment of terminally ill emperors by their physicians when the latter realised that they could not offer any further treatment. This attitude tallies with the mentality of the ancient Greek physicians, who even in Hippocratic times thought the treatment and care of the terminally ill to be a challenge to nature and hubris to the gods. Nevertheless, it is a very curious attitude in the light of the concepts of the Christian Byzantine physicians who, according to the doctrines of the Christian religion, should have been imbued with the spirit of philanthropy and love for their fellowmen. The meticulous analysis of three examples of abandonment of Byzantine emperors, and especially that of Alexius I Comnenus, by their physicians reveals that this custom, following ancient pagan ethics, in those times took on a ritualised form without any significant or real content. PMID:10390682

Hope Tree: An Interactive Art Installation to Facilitate the Expression of Hope in a Hospice Setting.

PubMed

Collins, Andrew; Bhathal, Darpanjot; Field, Tara; Larlee, Randene; Paje, Rachael; Young, Daneen

2018-01-01

Individuals confronting a terminal illness can experience intense psychological distress. Previous research has shown that hope can enhance one's ability to acknowledge, accept, and fight a terminal illness. Patients can continue to have hope or be hopeful, even in the face of a terminal illness. Can participation in a creative writing practice improve the expression of hope in a hospice setting? In this program evaluation, each expressed hope placed on the "Hope Tree" was independently coded by all research team members utilizing inductive content analysis. Overall themes were derived using a constant comparative approach and arranged into overarching themes based on consensus. Eight major themes emerged from the data: "Peace," "Dreams," "Total well-being," "Acknowledgment of loss," "Relationships," "Hospice care," "Spirituality," and "Dichotomies." The Hope Tree is a creative art project that can be used within a hospice environment to promote hope among family members and the health-care professionals who care for patients.

Physician assisted suicide and the Supreme Court: putting the constitutional claim to rest.

PubMed Central

Mariner, W K

1997-01-01

Like the debate about many controversial questions of ethics and medical care in America, public debate about physician assisted suicide became focused on questions of constitutional law. On June 26, 1997, the United States Supreme Court unanimously rejected any constitutional right of terminally ill patients to physician assisted suicide. An analysis of the Court's reasoning reveals that its decisions resolved only a narrow constitutional question that affects relatively few people--mentally competent, terminally ill patients who wish to hasten their imminent deaths by having a physician prescribe medication that they intend to use to commit suicide. Although suicide is not a crime, states remain free to prohibit assisted suicide. One consequence of the Court's decisions may be renewed debate on state laws. A more productive result would be to address the broader public health concerns that gave rise to support for physician assisted suicide--inadequate care for the terminally ill and prevention of suicide. PMID:9431307

From hope to hope: the experience of older Chinese people with advanced cancer.

PubMed

Chen, Hong; Komaromy, Carol; Valentine, Christine

2015-03-01

In our study that explored the current end-of-life care provision for Chinese older people with advanced/terminal cancer, hope emerged as a significant aspect of coping with their condition. Drawing on data from in-depth interviews with a group of older people, their family carers and health professionals, this article explores participants' constructions of hope in terms of what they were hoping for, how their hopes helped them cope with their illness and what sociocultural resources they drew on to build and sustain these hopes. While acknowledging similarities to Western studies of hope in terminal illness, this article identifies significant divergences in terms of the impact of different sociocultural values and their implications for clinical practice in light of an unfavourable health care environment for patients with advanced cancer and a social support system sustained mainly by Chinese families. It argues that hope represents an important resource for coping with terminal illness among these patients. © The Author(s) 2014.

Judgments of laypersons and general practitioners on justifiability and legality of providing assistance to die to a terminally ill patient: a view from New Zealand.

PubMed

Mitchell, Kay; Glynn Owens, R

2004-07-01

As part of a larger study, four decisions related to a vignette scenario of the elective death of a terminally ill patient suffering intractable pain are examined (doctor supplying information and drugs, assisting patient to take the drugs, or administering a lethal injection). Judgments on justifiability and legality of actions were obtained from laypersons and general practitioners (GPs) in Auckland, New Zealand. The results show that over 72% of laypersons and over 30% of GPs judged all four actions justified. Despite illegality a significant number of laypersons and some doctors were unsure of the legal status of actions. The current law in New Zealand prohibiting physician-assisted death may not reflect judgments by the majority of laypersons or 30% of general practitioners on the justifiability of elective death options for a terminally ill patient with intractable pain. Judgments on justifiability may be related to confusion over the legality of actions.

Communication about chronic critical illness.

PubMed

Nelson, Judith E; Mercado, Alice F; Camhi, Sharon L; Tandon, Nidhi; Wallenstein, Sylvan; August, Gary I; Morrison, R Sean

2007-12-10

Despite poor outcomes, life-sustaining treatments including mechanical ventilation are continued for a large and growing population of patients with chronic critical illness. This may be owing in part to a lack of understanding resulting from inadequate communication between clinicians and patients and families. Our objective was to investigate the informational needs of patients with chronic critical illness and their families and the extent to which these needs are met. In this prospective observational study conducted at 5 adult intensive care units in a large, university-affiliated hospital in New York, New York, 100 patients with chronic critical illness (within 3-7 days of elective tracheotomy for prolonged mechanical ventilation) or surrogates for incapacitated patients were surveyed using an 18-item questionnaire addressing communication about chronic critical illness. Main outcome measures included ratings of importance and reports of whether information was received about questionnaire items. Among 125 consecutive, eligible patients, 100 (80%) were enrolled; questionnaire respondents included 2 patients and 98 surrogates. For all items, more than 78% of respondents rated the information as important for decision making (>98% for 16 of 18 items). Respondents reported receiving no information for a mean (SD) of 9.0 (3.3) of 18 items, with 95% of respondents reporting not receiving information for approximately one-quarter of the items. Of the subjects rating the item as important, 77 of 96 (80%) and 69 of 74 (93%) reported receiving no information about expected functional status at hospital discharge and prognosis for 1-year survival, respectively. Many patients and their families may lack important information for decision making about continuation of treatment in the chronic phase of critical illness. Strategies for effective communication in this clinical context should be investigated and implemented.

Communication About Chronic Critical Illness

PubMed Central

Nelson, Judith E.; Mercado, Alice F.; Camhi, Sharon L.; Tandon, Nidhi; Wallenstein, Sylvan; August, Gary I.; Morrison, R. Sean

2008-01-01

Background Despite poor outcomes, life-sustaining treatments including mechanical ventilation are continued for a large and growing population of patients with chronic critical illness. This may be owing in part to a lack of understanding resulting from inadequate communication between clinicians and patients and families. Our objective was to investigate the informational needs of patients with chronic critical illness and their families and the extent to which these needs are met. Methods In this prospective observational study conducted at 5 adult intensive care units in a large, university-affiliated hospital in New York, New York, 100 patients with chronic critical illness (within 3–7 days of elective tracheotomy for prolonged mechanical ventilation) or surrogates for incapacitated patients were surveyed using an 18-item questionnaire addressing communication about chronic critical illness. Main outcome measures included ratings of importance and reports of whether information was received about questionnaire items. Results Among 125 consecutive, eligible patients, 100 (80%) were enrolled; questionnaire respondents included 2 patients and 98 surrogates. For all items, more than 78% of respondents rated the information as important for decision making (>98% for 16 of 18 items). Respondents reported receiving no information for a mean (SD) of 9.0 (3.3) of 18 items, with 95% of respondents reporting not receiving information for approximately one-quarter of the items. Of the subjects rating the item as important, 77 of 96 (80%) and 69 of 74 (93%) reported receiving no information about expected functional status at hospital discharge and prognosis for 1-year survival, respectively. Conclusions Many patients and their families may lack important information for decision making about continuation of treatment in the chronic phase of critical illness. Strategies for effective communication in this clinical context should be investigated and implemented. PMID:18071175

Black-white disparities in the association between posttraumatic stress disorder and chronic illness

PubMed Central

Nobles, Carrie J.; Valentine, Sarah E.; Borba, Christina P.C.; Gerber, Monica W.; Shtasel, Derri L.; Marques, Luana

2016-01-01

Objective Non-Latino blacks experience a higher proportion of chronic illness and associated disabilities than non-Latino whites. Posttraumatic stress disorder (PTSD) is associated with a greater risk of chronic illness, although few studies have investigated whether the interaction of PTSD with racial disparities may lead to a greater risk of chronic illness among blacks with PTSD than among whites with PTSD. Methods We evaluated data from the population-based National Survey of American Life and the National Comorbidity Survey Replication to investigate the association between race, lifetime PTSD and self-reported chronic illness. Weighted linear and Poisson regression models assessed differences in the magnitude of association between PTSD and chronic illness by race on both the additive and multiplicative scales. Results The magnitude of the association between lifetime PTSD and diabetes was greater among blacks (RD 0.07, 95% CI 0.02, 0.11; RR 1.9, 95% CI 1.4, 2.5) than whites (RD 0.004, 95% CI −0.02, 0.03; RR 1.2, 95% CI 0.7, 1.9) on the additive (p=0.017) scale. The magnitude of the association between lifetime PTSD and heart disease was greater among blacks (RD 0.09, 95% CI 0.05, 0.13) than whites (RD 0.04, 95% CI 0.01, 0.07) on the additive scale at a level approaching significance (p=0.051). Conclusion A lifetime history of PTSD was associated with a significantly greater risk of diabetes among blacks as compared to whites. These findings suggest that continuous exposure to racial inequalities may be associated with a greater risk of PTSD-related health sequela. PMID:27212665

Recent developments in the care, treatment, and rehabilitation of the chronic mentally ill in Nigeria.

PubMed

Jegede, R O; Williams, A O; Sijuwola, A O

1985-06-01

Nigeria, with a population estimated at 80 million, has fewer than 100 psychiatrists and psychologists and only 20 psychiatric facilities. Most chronic mental patients are cared for by their relatives, by traditional healers, or by religious healers affiliated with the new Christian churches, which have proliferated in recent years. Lack of organized social welfare services makes the family the only consistent source of social support for the mentally ill; patients who lose contact with their families often become homeless wanderers. Although the majority of the mentally ill in Nigeria are cared for outside the mental health system, recent developments, such as the establishment of mobile clinics and village-based psychiatric units, show great potential for advancing the treatment of chronic mental illness in Nigeria.

A descriptive and comparative study of the prevalence of depressive and anxiety disorders in low-income adults with type 2 diabetes and other chronic illnesses.

PubMed

Thomas, Janet; Jones, Glenn; Scarinci, Isabel; Brantley, Phillip

2003-08-01

To determine whether type 2 diabetes contributes to the presence of depressive and anxiety disorder diagnoses in low-income adults with hypertension, asthma, and/or arthritis. Using a cross-sectional design, this study administered a structured diagnostic interview to low-income primary care patients diagnosed with type 2 diabetes, hypertension, arthritis, and asthma, as well as to those with no chronic illness (n = 326), to determine the 12-month prevalence of depressive and anxiety disorders. A logistic regression (LR) model was used to assess whether a diagnosis of depression and/or anxiety was associated with type 2 diabetes after adjusting for known risk factors. A high prevalence rate of depressive and/or anxiety disorders was found in the total sample (29%) and in all three illness groups: type 2 diabetes (36%), other chronic illnesses (24%), and no chronic illness (31%). Using LR, a main effect was detected for illness group when age and education were controlled (chi(2) = 22.66, df 4, P = 0.000). Specifically, the odds of occurrence of a depressive and/or anxiety disorder in those with comorbid type 2 diabetes were twice that in the nondiabetic, chronically ill comparison group (odds ratio 2.26, 95% CI 1.28-4.01, P = 0.005). These results suggest a positive contribution of type 2 diabetes to increased rates of depressive and/or anxiety disorders in patients with hypertension, asthma, and/or arthritis and support prior research that type 2 diabetes may serve as an indicator of depression and anxiety in low-income adults treated in primary care clinics.

The Constant Shadow: Reflections on the Life of the Chronically Ill Child.

ERIC Educational Resources Information Center

Massie, Robert K., Jr.

1984-01-01

This article provides insight, through the author's personal experience, into the life of the chronically ill child. Problems encountered by these children and their families due to inadequacies in the educational system, medical profession, and insurance companies are discussed. (DF)

What Knowledge and Skills Do Caregivers Need?

ERIC Educational Resources Information Center

Given, Barbara; Sherwood, Paula R.; Given, Charles W.

2008-01-01

Patients with chronic illnesses and multiple comorbid conditions have intricate treatment protocols that require caregiver involvement, further complicating this already-difficult care. Because better treatments have extended the life spans of most patients with chronic illnesses, caregiver involvement often is required for several years. Many…

20 CFR 30.220 - What are the criteria for eligibility for benefits relating to chronic silicosis?

Code of Federal Regulations, 2010 CFR

2010-04-01

...' COMPENSATION PROGRAMS, DEPARTMENT OF LABOR ENERGY EMPLOYEES OCCUPATIONAL ILLNESS COMPENSATION PROGRAM ACT OF 2000 CLAIMS FOR COMPENSATION UNDER THE ENERGY EMPLOYEES OCCUPATIONAL ILLNESS COMPENSATION PROGRAM ACT... disease that arose as a consequence of the accepted chronic silicosis. ...

[Development of Empowerment Program for Persons with Chronic Mental Illness and Evaluation of Impact].

PubMed

Kim, Mijung; Lee, Kyunghee

2015-12-01

This study was done to develop an empowerment program for people with chronic mental illness and to analyze effects of the program on level of empowerment. The research was conducted using a nonequivalent control group pretest-posttest design. Participants were 37 people with chronic mental illness (experimental group: 18, control group: 19). The empowerment program was provided for 8 weeks (15 sessions). Data were collected between July 21 and October 17, 2014. Data were analyzed using Chi-square, Fisher's exact test, Sapiro-Wilk test, and Repeated measure ANOVA with SPSS/WIN 18.0. Quantitative results show that self-efficacy, interpersonal relationships, attitudes in the workplace, occupational performance capacity, and levels of empowered execute were significantly better in the experimental group compared to the control group. Study findings indicate that this empowerment program for persons with chronic mental illness is effective for improving self efficacy, interpersonal skills, attitudes in the workplace, occupational performance capacity, levels of empowered execute.

The association between trauma and chronic medical conditions in individuals with severe mental illness.

PubMed

Raab, Phillip Andrew; Claypoole, Keith Harvey; Hayashi, Kentaro; Baker, Charlene

2012-10-01

Based on the concept of allostatic load, this study proposed and evaluated a model for the relationship between childhood trauma, chronic medical conditions, and intervening variables affecting this relationship in individuals with severe mental illness. Childhood trauma, adult trauma, major depressive disorder symptoms, posttraumatic stress disorder symptoms, health risk factors, and chronic medical conditions were retrospectively assessed using a cross-sectional survey design in a sample of 117 individuals with severe mental illness receiving public mental health services. Path analyses produced a good-fitting model, with significant pathways from childhood to adult trauma and from adult trauma to chronic medical conditions. Multisample path analyses revealed the equivalence of the model across sex. The results support a model for the relationship between childhood and adult trauma and chronic medical conditions, which highlights the pathophysiological toll of cumulative trauma experienced across the life span and the pressing need to prevent retraumatization in this population.

[Siblings of chronically ill adolescents: does chronic illness have effects on their development potentials?].

PubMed

Boeger, A; Seiffge-Krenke, I

1996-12-01

Sibling relationships have been studied by developmental psychologists for a long time. Whereas previous research on this topic was focused on examining variables such as gender, age differences and sibling sequence, recent research efforts have directed more attention towards understanding the functions siblings perform for one another and what kinds of emotional relationships exist between them. In this regard, we became interested in identifying the special burdens which siblings of chronically sick children and adolescents must deal with. Two case studies are presented here selected from the research findings obtained from investigation in our research project. Coping with chronic illness as seen in juvenile diabetes. These case studies demonstrate that healthy siblings of chronically sick adolescents may be subjected to considerable burdens and illustrate, as well, the kinds of coping mechanisms siblings adopt in order to deal with them.

Differences in illness perception between children with cancer and other chronic diseases and their parents.

PubMed

Szentes, Annamária; Kökönyei, Gyöngyi; Békési, Andrea; Bokrétás, Ildikó; Török, Szabolcs

2017-10-01

The purpose of this study was to explore the differences in illness perception between children with cancer and other chronic diseases. A secondary aim was to examine the similarities and differences between the illness perception of these children and their parents. The Revised Illness Perception Questionnaire (IPQ-R) was used to measure the children's and parents' illness perceptions. In this study, 184 children (ages 8-18 years) and their caregivers completed the questionnaires. This study shows that children with cancer feel that they have greater control over their treatment compared to the other two groups. The children's parents have more pessimistic views of the illness than their children. Examinations of illness perceptions among paediatric cancer patients and their families are essential in designing psychosocial interventions for these families. The clinical value of our results can help better understand the cancer-specific features of illness perceptions.

How do high cost-sharing policies for physician care affect inpatient care use and costs among people with chronic disease?

PubMed

Xin, Haichang

2015-01-01

Rapidly rising health care costs continue to be a significant concern in the United States. High cost-sharing strategies thus have been widely used to address rising health care costs. Since high cost-sharing policies can reduce needed care as well as unneeded care use, it raises the concern whether these policies for physician care are a good strategy for controlling costs among chronically ill patients, especially whether utilization and costs in inpatient care will increase in response. This study examined whether high cost sharing in physician care affects inpatient care utilization and costs differently between individuals with and without chronic conditions. Findings from this study will contribute to the insurance benefit design that can control care utilization and save costs of chronically ill individuals. Prior studies suffered from gaps that limit both internal validity and external validity of their findings. This study has its unique contributions by filling these gaps jointly. The study used data from the 2007 Medical Expenditure Panel Survey, a nationally representative sample, with a cross-sectional study design. Instrumental variable technique was used to address the endogeneity between health care utilization and cost-sharing levels. We used negative binomial regression to analyze the count data and generalized linear models for costs data. To account for national survey sampling design, weight and variance were adjusted. The study compared the effects of high cost-sharing policies on inpatient care utilization and costs between individuals with and without chronic conditions to answer the research question. The final study sample consisted of 4523 individuals; among them, 752 had hospitalizations. The multivariate analysis demonstrated consistent patterns. Compared with low cost-sharing policies, high cost-sharing policies for physician care were not associated with a greater increase in inpatient care utilization (P = .86 for chronically ill people and P = .67 for healthy people, respectively) and costs (P = .38 for chronically ill people and P = .68 for healthy people, respectively). The sensitivity analysis with a 10% cost-sharing level also generated consistent insignificant results for both chronically ill and healthy groups. Relative to nonchronically ill individuals, chronically ill individuals may increase their utilization and expenditures of inpatient care to a similar extent in response to increased physician care cost sharing. This may be due to cost pressure from inpatient care and short observation window. Although this study did not find evidence that high cost-sharing policies for physician care increase inpatient care differently for individuals with and without chronic conditions, interpretation of this finding should be cautious. It is possible that in the long run, these sick people would demonstrate substantial demands for medical care and there could be a total cost increase for health plans ultimately. Health plans need to be cautious of policies for chronically ill enrollees.

A Case of Attempted Suicide in Huntington's Disease: Ethical and Moral Considerations.

PubMed

Furfari, Kristin; Zehnder, Nichole; Abbott, Jean

2016-01-01

A 62-year-old female with Huntington's disease presented after a suicide attempt. Her advance directive stated that she did not want intubation or resuscitation, which her family acknowledged and supported. Despite these directives, she was resuscitated in the emergency department and continued to state that she would attempt suicide again. Her suicidality in the face of a chronic and advancing illness, and her prolonged consistency in her desire to take her own life, left careproviders wondering how to provide ethical, respectful care to this patient. Tension between the ethical principles of autonomy and beneficence is central in this case. The patient's narrative demonstrated that her suicide was an autonomous decision, free from coercion or disordered thinking from mental illness. Beneficence then would seem to necessitate care aligned with the patient's desire to end her life, which created ethical uneasiness for her family and careproviders. The case highlights several end-of-life ethical considerations that have received much recent attention. With ongoing discussions about the legalization of aid in dying across the country, caregivers are challenged to understand what beneficence means in people with terminal illnesses who want a say in their death. This case also highlights the profound moral distress of families and careproviders that arises in such ethically challenging scenarios. Copyright 2016 The Journal of Clinical Ethics. All rights reserved.

Treatment effect with paliperidone palmitate compared with oral antipsychotics in patients with recent-onset versus more chronic schizophrenia and a history of criminal justice system involvement.

PubMed

Alphs, Larry; Bossie, Cynthia; Mao, Lian; Lee, Erin; Starr, H Lynn

2018-02-01

Long-acting injectable antipsychotics (APs) are not well studied in recent-onset schizophrenia. This exploratory analysis of a study designed to reflect real-world schizophrenia, as defined by patients, interventions and outcomes, compared relative treatment effect between once-monthly paliperidone palmitate (PP) and daily oral APs in patients with recent-onset or chronic illness METHODS: This randomized, open-label, event monitoring board-blinded study compared treatment response in subjects with schizophrenia and a history of criminal justice system involvement following treatment with PP or oral APs for 15 months (ClinicalTrials.gov identifier, NCT01157351). Event-free probabilities were estimated using Kaplan-Meier method; hazard ratios (HRs) were estimated using Cox proportional hazard models. This subgroup analysis analysed data by disease duration (≤5 (recent-onset) or >5 years (chronic illness) since first psychiatric diagnosis). Seventy-seven subjects met the criteria for recent-onset illness; 365 for chronic illness. HRs (95% CI) for treatment failure for oral APs versus PP were 1.73 (0.87-3.45; P = 0.121) for recent-onset and 1.37 (1.02-1.85; P = 0.039) for chronic illness. Most common adverse events for PP versus oral APs were injection site pain (recent-onset, 26% vs. 0%; chronic, 17% vs. 0%), increased weight (14% vs. 6%; 12% vs. 6%), akathisia (14% vs. 9%; 10% vs. 7%), insomnia (12% vs. 17%; 18% vs. 10%) and anxiety (12% vs. 6%; 10% vs. 8%). Although neither pre-planned nor adequately powered, the estimated HRs suggest that the relative advantage of PP over oral APs for reducing the risk for treatment failure may be greater in patients with recent-onset schizophrenia than in those with more chronic illness. © 2015 The Authors. Early Intervention in Psychiatry published by Wiley Publishing Asia Pty Ltd.

The Adolescent with a Life-Threatening Illness: Cultural Myths and Social Realities.

ERIC Educational Resources Information Center

Nannis, Ellen D.; And Others

This paper discusses the attitudes of terminally ill adolescent patients towards their illness and their behaviors during their treatment. Preliminary results are reported on an ongoing study of 12 boys and six girls (age 8-21) with metastatic pediatric solid tumors and lymphomas that failed to respond to conventional treatment. Interviews of…

Assisted Suicide, Euthanasia, and Suicide Prevention: The Implications of the Dutch Experience.

ERIC Educational Resources Information Center

Hendin, Herbert

1995-01-01

A study illustrates how legal sanction promotes a culture that transforms suicide into assisted suicide and encourages choosing death when faced with serious illness. The question of extending legal euthanasia to those not physically ill complicates the issue. Also, doctors may feel they can end a terminally-ill patient's life without consent.…

Adaptive leadership framework for chronic illness: framing a research agenda for transforming care delivery.

PubMed

Anderson, Ruth A; Bailey, Donald E; Wu, Bei; Corazzini, Kirsten; McConnell, Eleanor S; Thygeson, N Marcus; Docherty, Sharron L

2015-01-01

We propose the Adaptive Leadership Framework for Chronic Illness as a novel framework for conceptualizing, studying, and providing care. This framework is an application of the Adaptive Leadership Framework developed by Heifetz and colleagues for business. Our framework views health care as a complex adaptive system and addresses the intersection at which people with chronic illness interface with the care system. We shift focus from symptoms to symptoms and the challenges they pose for patients/families. We describe how providers and patients/families might collaborate to create shared meaning of symptoms and challenges to coproduce appropriate approaches to care.

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

PubMed

Vitulano, Lawrence A

2003-07-01

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

Care meanings, expressions, and experiences of those with chronic mental illness.

PubMed

George, Tamara B

2002-02-01

The care meanings, expressions, and experiences of those with a chronic mental illness living in the community were explored with use of Leininger's Theory of Culture Care Diversity and Universality and the Sunrise Model. Results indicate that people with chronic mental illness have identifiable values, norms, and lifeways that set them apart from the dominant culture. Cultural and social structure factors, ethnohistory, and environmental context influence their desired care. Nurses can use this knowledge to provide culturally congruent care in new ways to enhance the quality of life, productivity, and well-being of this subculture. Copyright 2002 by W.B. Saunders Company

Chronically ill rural women: self-identified management problems and solutions.

PubMed

Cudney, Shirley; Sullivan, Therese; Winters, Charlene A; Paul, Lynn; Oriet, Pat

2005-03-01

To add to the knowledge base of illness management of chronically ill, rural women by describing the self-identified problems and solutions reported by women participants in the online health-education segment of the Women to Women (WTW) computer outreach project. WTW is a research-based computer intervention providing health education and online peer support for rural women with chronic diseases. Messages posted to the online chat room were examined to determine the women's self-management problems and solutions. The self-identified problems were: (1) difficulties in carrying through on self-management programmes; (2) negative fears and feelings; (3) poor communication with care providers; and (4) disturbed relationships with family and friends. The self-identified solutions to these problems included problem-solving techniques that were tailored to the rural lifestyle. Although not all problems were 'solvable', they could be 'lived with' if the women's prescriptions for self-management were used. Glimpses into the women's day-to-day experiences of living with chronic illness gleaned from the interactive health-education discussions will give health professionals insights into the women's efforts to manage their illnesses. The data provide health professionals with information to heighten their sensitivity to their clients' day-to-day care and educational needs.

Stigma of visible and invisible chronic conditions.

PubMed

Joachim, G; Acorn, S

2000-07-01

Nurses deliver care to people with various forms of chronic illnesses and conditions. Some chronic conditions, such as paraplegia, are visible while others, such as diabetes, are invisible. Still others, such as multiple sclerosis, are both visible and invisible. Having a chronic illness or condition and being different from the general population subjects a person to possible stigmatization by those who do not have the illness. Coping with stigma involves a variety of strategies including the decision about whether to disclose the condition and suffer further stigma, or attempt to conceal the condition or aspects of the condition and pass for normal. We present a beginning framework that describes the relationship between the elements of stigma and the decision to disclose or hide a chronic condition based on its visibility or invisibility. The specific aims were to combine the results from a meta-study on qualitative research with a review of the quantitative literature, then develop a theoretical framework. Although an understanding of how patients cope with stigmatizing conditions is essential for nurses who aim to deliver comprehensive individualized patient care, there is little current literature on this subject. The relationship between visibility and invisibility and disclosure and non-disclosure remains poorly understood. A framework to facilitate a deeper understanding of the dynamics of chronic illnesses and conditions may prove useful for practice.

Systematic Review: Bullying Involvement of Children With and Without Chronic Physical Illness and/or Physical/Sensory Disability-a Meta-Analytic Comparison With Healthy/Nondisabled Peers.

PubMed

Pinquart, Martin

2017-04-01

To compare levels of victimization and perpetration associated with bullying among children and adolescents with and without chronic physical illnesses and/or physical or sensory disabilities. In total, 107 studies were identified using a systematic search in electronic databases and cross-referencing. A random-effects meta-analysis was computed. Children and adolescents with chronic physical illness or disability were more likely to be victims of bullying in general (odds ratio [OR] = 1.65), particularly physical bullying (OR = 1.47), relational bullying (OR = 1.47), verbal bullying (OR = 1.67), cyberbullying (OR = 1.39), and illness-specific teasing (OR = 5.29). They were also more likely to be bullies in general (OR = 1.28), as well physical (OR = 1.38) and relational bullies (OR = 1.13). The effect sizes varied across different illnesses and disabilities and, in part, by visibility of the disease, school type, and year of assessment. Although most between-group differences tend to be small, some form of intervention is needed to reduce bullying among children and adolescents with chronic physical illnesses and/or physical or sensory disabilities, and illness-specific weight- and appearance-related teasing in particular. © The Author 2016. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com

[Chronic pulmonary diseases: point of view of partners and their assessments with regard to the effects of lung sports].

PubMed

Nell, C; Kehr, K; Hildebrandt, O; Sohrabi, K; Cassel, W; Greulich, T; Koehler, K-I; Koehler, U

2011-12-01

Chronic diseases of the respiratory organs have, besides restrictions of lung function, also physical, mental and social consequences. The chronic disease impacts negatively not only the patient's own quality of life but also that of his/her partner and/or relative. As treatment modalities, besides drug therapy, above all outpatient rehabilitation measures have proved to be effective. In this pilot study we sought answers to three questions: (i) How is the quality of life of the patient's partner and/or relative influenced by the disease? How does the partner/relative assess the effect of the disease on the chronically ill patient? How does the partner/relative assess the effect of lung sports on the chronically ill patient? A specially conceived questionnaire was given to the partners/relatives of 25 patients with chronic pulmonary diseases. The patients, 23 with chronic obstructive pulmonary disease and 2 with pulmonary fibrosis, have been participating in lung sports once a week for more than three years. The average age of the patients was 67 years. The patients' illness also negatively influenced the quality of life of the partner to a considerable extent. The impact of the patients' pulmonary disease on the healthy partner was assessed as being rather moderate. Restrictions of social life were essentially influenced by the amount of assistance required by the pulmonary patient. The therapeutic effects of lung sports on the well-being of the patient were aways considered to be positive by the respective partner/relatives. A chronic pulmonary illness also has a negative influence on the partner/relative's quality of life. The necessity for extensive assistance in daily life is accompanied by a considerable negative impact on the partner's quality of life. According to the opinion of the partner/relative, lung sports have positive effects in all of the chronically ill patient's fields of life. © Georg Thieme Verlag KG Stuttgart · New York.

Issues in Sexuality for Adolescents with Chronic Illnesses and Disabilities. CYDLINE Reviews.

ERIC Educational Resources Information Center

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

This annotated bibliography focuses on sexuality issues regarding adolescents and young adults with disabilities and chronic illnesses. The resources are grouped into the following categories: psychosocial development (23 references); attitudes and knowledge (11 references); sex education (34 references); sexual abuse (four references);…

Open communication with terminally ill cancer patients about illness and death: a comparison between spouses of Ashkenazi and Sephardi ethnic origins.

PubMed

Bachner, Yaacov G; Yosef-Sela, Nili; Carmel, Sara

2014-01-01

Studies document that caregivers face severe difficulties in communicating with their loved ones about both illness and death. To date, a paucity of studies has examined caregiver-patient communication at the end of life within the context of ethnic origin. This study compares the level of open communication between caregivers from 2 ethnic groups and examines the contribution of different caregiver characteristics and situational variables to the explanation of open communication. A total of 77 spouse caregivers of terminally ill cancer patients (comprising 41 Jews of Sephardi origin and 36 Jews of Ashkenazi origin) participated in the study. The questionnaire included measures of caregiver communication, caregiver characteristics (ie, age, gender, education level, optimism, self-efficacy), and situational variables (ie, duration and intensity of care). Spouses of Ashkenazi origin communicated more with their loved ones about illness and death compared with their Sephardi counterparts. Ethnic origin accounted for 16.6% of the explained variance, caregiver characteristics added 20.3%, and situation variables lent a modest contribution of 3.5%. Four variables emerged as significant predictors of caregivers' level of open communication: self-efficacy (β = .33, P < .05), gender (β = .32, P < .01), ethnic origin (β = .25, P <.05), and duration of care (β = .20, P < .05). These findings demonstrate the importance of ethnic origin to caregivers' open communication with terminal cancer patients about illness and death. Moreover, communication level with patients is mostly explained by the caregiver characteristics. Caregiver characteristics should be considered by nurses when developing intervention programs for increasing caregivers' level of open communication with dying patients.

e-Patients Perceptions of Using Personal Health Records for Self-management Support of Chronic Illness.

PubMed

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

2015-06-01

Chronic illness self-management is largely moving from healthcare professionals and into the hands of the patient. One tool that has been promoted to facilitate self-management support of chronic illness by policymakers, health advocates, providers, and consumers is the personal health record. Little is known about how consumers effectively use personal health records for self-management support and for productive patient-provider interactions. The purpose of this study was to learn from chronically ill engaged, experienced, and educated (e-patient) adults how and why they use personal health records for self-management support and productive patient-provider interactions. Eighteen purposively selected consumers were interviewed in two communities. Qualitative description methods were used, and we used a grounded theory approach to analyzing interview data, which was digitally recorded and transcribed verbatim. We identified four major thematic categories that capture the perceptions of the chronically ill using personal health records: (1) patient engagement and health self-management, (2) access to and control over personal health data, (3) promotion of productive communication, and (4) opportunities for training and education. Knowledge gained from the e-patient personal health record users suggest that making improvements to the portal system and providing education to consumers and providers will increase the utility among the experienced users and encourage new users to embrace adoption and use.

[Effects of a Multi-disciplinary Approached, Empowerment Theory Based Self-management Intervention in Older Adults with Chronic Illness].

PubMed

Park, Chorong; Song, Misoon; Cho, Belong; Lim, Jaeyoung; Song, Wook; Chang, Heekyung; Park, Yeon-Hwan

2015-04-01

The purpose of this study was to develop a multi-disciplinary self-management intervention based on empowerment theory and to evaluate the effectiveness of the intervention for older adults with chronic illness. A randomized controlled trial design was used with 43 Korean older adults with chronic illness (Experimental group=22, Control group=21). The intervention consisted of two phases: (1) 8-week multi-disciplinary, team guided, group-based health education, exercise session, and individual empowerment counseling, (2) 16-week self-help group activities including weekly exercise and group discussion to maintain acquired self-management skills and problem-solving skills. Baseline, 8-week, and 24-week assessments measured health empowerment, exercise self-efficacy, physical activity, and physical function. Health empowerment, physical activity, and physical function in the experimental group increased significantly compared to the control group over time. Exercise self-efficacy significantly increased in experimental group over time but there was no significant difference between the two groups. The self-management program based on empowerment theory improved health empowerment, physical activity, and physical function in older adults. The study finding suggests that a health empowerment strategy may be an effective approach for older adults with multiple chronic illnesses in terms of achieving a sense of control over their chronic illness and actively engaging self-management.

Cost and economic burden of illness over 15 years in Nepal: A comparative analysis.

PubMed

Swe, Khin Thet; Rahman, Md Mizanur; Rahman, Md Shafiur; Saito, Eiko; Abe, Sarah K; Gilmour, Stuart; Shibuya, Kenji

2018-01-01

With an increasing burden of non-communicable disease in Nepal and limited progress towards universal health coverage, country- and disease-specific estimates of financial hardship related to healthcare costs need to be evaluated to protect the population effectively from healthcare-related financial burden. To estimate the cost and economic burden of illness and to assess the inequality in the financial burden due to catastrophic health expenditure from 1995 to 2010 in Nepal. This study used nationally representative Nepal Living Standards Surveys conducted in 1995 and 2010. A Bayesian two-stage hurdle model was used to estimate average cost of illness and Bayesian logistic regression models were used to estimate the disease-specific incidence of catastrophic health payment and impoverishment. The concentration curve and index were estimated by disease category to examine inequality in healthcare-related financial hardship. Inflation-adjusted mean out-of-pocket (OOP) payments for chronic illness and injury increased by 4.6% and 7.3%, respectively, while the cost of recent acute illness declined by 1.5% between 1995 and 2010. Injury showed the highest incidence of catastrophic expenditure (30.7% in 1995 and 22.4% in 2010) followed by chronic illness (12.0% in 1995 and 9.6% in 2010) and recent acute illness (21.1% in 1995 and 7.8% in 2010). Asthma, diabetes, heart conditions, malaria, jaundice and parasitic illnesses showed increased catastrophic health expenditure over time. Impoverishment due to injury declined most (by 12% change in average annual rate) followed by recent acute illness (9.7%) and chronic illness (9.6%) in 15 years. Inequality analysis indicated that poorer populations with recent acute illness suffered more catastrophic health expenditure in both sample years, while wealthier households with injury and chronic illnesses suffered more catastrophic health expenditure in 2010. To minimize the economic burden of illness, several approaches need to be adopted, including social health insurance complemented with an upgraded community-based health insurance system, subsidy program expansion for diseases with high economic burden and third party liability motor insurance to reduce the economic burden of injury.

Cost and economic burden of illness over 15 years in Nepal: A comparative analysis

PubMed Central

Rahman, Md. Mizanur; Rahman, Md. Shafiur; Saito, Eiko; Abe, Sarah K.; Gilmour, Stuart; Shibuya, Kenji

2018-01-01

Background With an increasing burden of non-communicable disease in Nepal and limited progress towards universal health coverage, country- and disease-specific estimates of financial hardship related to healthcare costs need to be evaluated to protect the population effectively from healthcare-related financial burden. Objectives To estimate the cost and economic burden of illness and to assess the inequality in the financial burden due to catastrophic health expenditure from 1995 to 2010 in Nepal. Methods This study used nationally representative Nepal Living Standards Surveys conducted in 1995 and 2010. A Bayesian two-stage hurdle model was used to estimate average cost of illness and Bayesian logistic regression models were used to estimate the disease-specific incidence of catastrophic health payment and impoverishment. The concentration curve and index were estimated by disease category to examine inequality in healthcare-related financial hardship. Findings Inflation-adjusted mean out-of-pocket (OOP) payments for chronic illness and injury increased by 4.6% and 7.3%, respectively, while the cost of recent acute illness declined by 1.5% between 1995 and 2010. Injury showed the highest incidence of catastrophic expenditure (30.7% in 1995 and 22.4% in 2010) followed by chronic illness (12.0% in 1995 and 9.6% in 2010) and recent acute illness (21.1% in 1995 and 7.8% in 2010). Asthma, diabetes, heart conditions, malaria, jaundice and parasitic illnesses showed increased catastrophic health expenditure over time. Impoverishment due to injury declined most (by 12% change in average annual rate) followed by recent acute illness (9.7%) and chronic illness (9.6%) in 15 years. Inequality analysis indicated that poorer populations with recent acute illness suffered more catastrophic health expenditure in both sample years, while wealthier households with injury and chronic illnesses suffered more catastrophic health expenditure in 2010. Conclusion To minimize the economic burden of illness, several approaches need to be adopted, including social health insurance complemented with an upgraded community-based health insurance system, subsidy program expansion for diseases with high economic burden and third party liability motor insurance to reduce the economic burden of injury. PMID:29617393

26 CFR 25.7520-3T - Limitation on the application of section 7520 (temporary).

Code of Federal Regulations, 2011 CFR

2011-04-01

... section are illustrated by the following example: Example. Terminal illness. The donor transfers property... age 75 but has been diagnosed with an incurable illness and has at least a 50 percent probability of...

26 CFR 25.7520-3T - Limitation on the application of section 7520 (temporary).

Code of Federal Regulations, 2010 CFR

2010-04-01

... section are illustrated by the following example: Example. Terminal illness. The donor transfers property... age 75 but has been diagnosed with an incurable illness and has at least a 50 percent probability of...

[Illness behavior in chronic pain].

PubMed

Lavielle, Pilar; Clark, Patricia; Martínez, Homero; Mercado, Francisco; Ryan, Gery

2008-01-01

To describe the illness behaviour in patients with chronic pain. We conducted semi-structured interviews to 53 patients during 2000, in a tertiary care center. We explored their initial interpretations, responses and subsequent practices to chronic pain, until they received a diagnosis that satisfied them. Illness behaviour was determined by pain intensity and disability; beliefs regarding pain causes, trust in social networks, and quality and satisfaction with the health care systems. In terms of the decision to seek care, the first option was to go to the popular sector, followed by consulting a general physician, and as last resort, to go to a tertiary care center ("with a specialist"). Illness behaviour should be conceptualized as a process, which combines the use of different health care sectors by the same subjects, as a result of care provided sequentially by each previous sector.

Work right to right work: An automythology of chronic illness and work.

PubMed

Vijayasingham, Lavanya

2018-03-01

Objectives Chronic illness is known to disrupt and redirect the usual course of work trajectories. This article aims to portray the longitudinal course of negotiating work after multiple sclerosis. Methods Using therapy and personal journals to reconstruct memories and experience, an autoethnography is produced and narrated within Campbell's "Hero's Journey" automythology framework. Results The narrative highlights the intrasubjectivity of illness meaning-the changing internal meaning-making and external behavior and decision-making dynamics. The journey of being inhibited to "Work Right", to "Looking for the Right" and ultimately, finding "Right Work" is charted; portrayed as a bittersweet maneuver to achieve work-illness equilibrium. Discussion This journey traverses a spectrum of negative coping-the exhibition of deviant work behaviors, disengagement and depression; to recalibration and renewal; culminating in living the "new normal", and finding moral and meaningful work engagements. Life trajectories with chronic illness are often skewed and redirected; but longitudinal narratives of normalization and coping also highlight the pursuits to secure and maintain a life of meaning and value.

'To call it work somehow demeans it': the social construction of talk in the care of terminally ill patients.

PubMed

May, C

1995-09-01

The nurse has an important role in helping the terminally ill patient come to terms with the imminence of death. Such work is highly demanding and often stressful, but is work which is accorded a high moral priority by respondents in the study reported in this paper. The paper explores the ways in which nurses work to respond to patients' expressed psychosocial problems and the emphasis that they placed on providing opportunities for patients to speak about their impending death.

Health benefits for the terminally ill: reality and perception.

PubMed

Gabel, J R; Hurst, K M; Hunt, K A

1998-01-01

This paper examines the availability and scope of hospice benefits as well as employers' attitudes and knowledge about care for the terminally ill. Data are drawn from a national random sample of 1,502 employers with 200 or more workers and from focus groups with employee benefits managers and their insurance advisers, brokers, and consultants. Major findings are that 83 percent of employers offer explicit hospice benefits, with most other firms covering hospice through high-cost case management. Most employers support the concept of hospice care because they believe that it reduces medical expenses.

Disease management and the Medicare Modernization Act: "It's the insurance, stupid".

PubMed

Sidorov, Jaan; Schlosberg, Claudia

2005-12-01

While definitions of "disease management" (DM) emphasize quality of care for populations with chronic illness, proponents argue it reduces healthcare costs. Buyers may find disease management organizations' (DMOs') use of clinical guidelines, physician collaboration, and promotion of patient self-management intuitively sound, but it is performance guarantees, combined with retrospective effectiveness cost studies, that have driven DMOs' penetration of the commercial insurance market with revenues that exceed $500 million per year. The success of DMOs contributed to the creation of the Chronic Care Improvement Program (CCIP), which is designed to prospectively test the impact of DM on both the quality and cost of care for fee-for-service Medicare beneficiaries with chronic illness. This may lead to an expansion of DM in Medicare, and even greater opportunities for DMOs beyond the $10 billion in 10- year projected growth. For community-based physicians caring for patients with chronic illness, the sharpened focus on chronic care and the growth of DMOs creates some potential advantages. These include more time to treat more patients with acute illness, lower practice costs, opportunities to collaborate over quality, and a greater ability to achieve quality targets set by pay-for-performance arrangements.

Decreased number and increased volume with mitochondrial enlargement of cerebellar synaptic terminals in a mouse model of chronic demyelination.

PubMed

Nguyen, Huy Bang; Sui, Yang; Thai, Truc Quynh; Ikenaka, Kazuhiro; Oda, Toshiyuki; Ohno, Nobuhiko

2018-05-23

Impaired nerve conduction, axonal degeneration, and synaptic alterations contribute to neurological disabilities in inflammatory demyelinating diseases. Cerebellar dysfunction is associated with demyelinating disorders, but the alterations of axon terminals in cerebellar gray matter during chronic demyelination are still unclear. We analyzed the morphological and ultrastructural changes of climbing fiber terminals in a mouse model of hereditary chronic demyelination. Three-dimensional ultrastructural analyses using serial block-face scanning electron microscopy and immunostaining for synaptic markers were performed in a demyelination mouse model caused by extra copies of myelin gene (PLP4e). At 1 month old, many myelinated axons were observed in PLP4e and wild-type mice, but demyelinated axons and axons with abnormally thin myelin were prominent in PLP4e mice at 5 months old. The density of climbing fiber terminals was significantly reduced in PLP4e mice at 5 months old. Reconstruction of climbing fiber terminals revealed that PLP4e climbing fibers had increased varicosity volume and enlarged mitochondria in the varicosities at 5-month-old mice. These results suggest that chronic demyelination is associated with alterations and loss of climbing fiber terminals in the cerebellar cortex, and that synaptic changes may contribute to cerebellar phenotypes observed in hereditary demyelinating disorders.

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

ERIC Educational Resources Information Center

Childers, Glenna J.; Carroll, James L.

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

Guidelines and Procedures for Meeting the Specialized Physical Health Care Needs of Pupils.

ERIC Educational Resources Information Center

Lunden, Janet, Ed.

This monograph presents the California State guidelines for providing physical health care services within the public school setting. Part I addresses administrative concerns. Included are sections on: education and chronic illness; professional roles; referral and evaluation; guidelines and procedures for transporting chronically ill pupils;…

Chronically Ill Children: A Psychologically and Emotionally Deviant Population?

ERIC Educational Resources Information Center

Tavormina, J. B.; And Others

To investigate vulnerability to psychological and emotional stress among chronically ill children, a battery of personality tests was selectively administered to 144 children (5- to 19-years-old) afflicted with one of the following conditions: diabetes, asthma, cystic fibrosis, or hearing impairment. Analyses centered on comparisons of norms…

Psychological and Spiritual Factors in Chronic Illness.

ERIC Educational Resources Information Center

Leifer, Ron

1996-01-01

Asserts the importance of psychological and spiritual factors in the treatment of chronic illness. Discusses the inevitably of sickness, old age, and death, as well as the presence of the physician, patience, pain, and hope. Maintains that reflection on these qualities can benefit both the physician and patient. (MJP)

Adolescents with Chronic Illnesses: Issues for School Personnel. CYDLINE Reviews.

ERIC Educational Resources Information Center

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

The annotated bibliography is intended to give classroom teachers and educational planners background information and resource materials on the psychosocial and health concerns of adolescents with chronic illnesses. The 26 bibliographic citations date from 1980 to 1988 and are grouped into the following categories: general medical and social…

Recreation and Leisure: Issues for Adolescents with Chronic Illnesses and Disabilities. CYDLINE Reviews.

ERIC Educational Resources Information Center

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

This bibliography presents 162 annotated references (including bibliographic materials, training and educational materials, and programs) about issues of recreation and leisure for adolescents and young adults with chronic illnesses and disabilities. Each reference usually contains a full bibliographic citation, a brief descriptive abstract, and…

A School Reentry Program for Chronically Ill Children.

ERIC Educational Resources Information Center

Worchel-Prevatt, Frances F.; Heffer, Robert W.; Prevatt, Bruce C.; Miner, Jennifer; Young-Saleme, Tammi; Horgan, Daniel; Lopez, Molly A.; Frankel, Lawrence; Rae, William A.

1998-01-01

Describes a school reintegration program aimed at overcoming the numerous psychological, physical, environmental, and family-based deterrents to school reentry for chronically ill children. The program uses a systems approach to children's mental health with an emphasis on multiple aspects of the child's environment (i.e., family, medical…

Introduction to Health Promotion for People with Chronic Illness and Disability

ERIC Educational Resources Information Center

Chan, Fong; Chiu, Chung-Yi; Bezyak, Jill L.; Keegan, John

2012-01-01

Health promotion has received increasing attention in rehabilitation counseling research. Health promotion research contributes to theory building and provides the foundation for empirically supported interventions that can improve the health-related quality of life and employment outcomes of people with chronic illness and disability. In this…

Peer Relationships Among Chronically Ill Children.

ERIC Educational Resources Information Center

Johnson, Suzanne Bennett

As new treatments allow chronically ill children to live longer, the relationship between the child's psychological state and his physical condition becomes paramount. Diabetics (N=42) between the ages of 10 and 21 answered questions about their disease. While most respondents did not feel that diabetes had affected relationships with peers,…

Psychological Adjustment and Neuropsychological Performance in Diabetic Patients.

ERIC Educational Resources Information Center

Skenazy, Judy A.; Bigler, Erin D.

1985-01-01

Compared diabetic (N=39) with nondiabetic chronic illness patients (N=20) and healthy controls (N=24). The chronic illness and the diabetic groups had significant elevations on the Hypochondriasis, Depression, and Hysteria scales of the Feschingbauer Abbreviated MMPI. For diabetics, results demonstrated a negligible effect of poor adjustment on…

Quality of Life and School Absenteeism in Children with Chronic Illness

ERIC Educational Resources Information Center

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

2016-01-01

Objective: Children and adolescents with a chronic illness (CI) tend to demonstrate diminished physical and social functioning, which contribute to school attendance issues. We investigated the role of social and physical functioning in reducing school absenteeism in children participating in Mastering Each New Direction (MEND), a family-based…

A Comparison of Somatic Compliants among Depressed and Non-Depressed Older Persons.

ERIC Educational Resources Information Center

Waxman, Howard; And Others

1985-01-01

Examined the relationship among somatic complaints, chronic medical illness, and depression in 127 community elderly. Depression and chronic medical illness were significant contributors to somatic complaining both alone and in interaction. Demographic variables and social supports were largely unrelated to depression, somatic complaints, or…

Managing Chronic Illness in the Classroom.

ERIC Educational Resources Information Center

Wishnietsky, Dorothy Botsch; Wishnietsky, Dan H.

An important but often overlooked member of a student's health care team is the teacher. This text covers ways to help teachers and administrators understand the special needs of students suffering from a chronic illness, how to recognize health events that may interfere with learning, and suggestions for appropriate interventions. The book opens…

MAPP: A Multimedia Instructional Program for Youths with Chronic Illness.

ERIC Educational Resources Information Center

Murdock, Peggy O'Hara; McClure, Christopher; Lage, Onelia G.; Sarkar, Dilip; Shaw, Kimberly

The Multimedia Approach to Pregnancy Prevention (MAPP) is an expert intelligence multimedia program administered in outpatient and inpatient clinics in the University of Miami/Jackson Children's Hospital (Florida). The target population for the MAPP program is youths aged 9-14 years, diagnosed with chronic illnesses (asthma, diabetes, and sickle…

A comparison of adherence to hypoglycemic medications between Type 2 diabetes patients with and without serious mental illness

PubMed Central

Kreyenbuhl, Julie; Leith, Jaclyn; Medoff, Deborah R.; Fang, LiJuan; Dickerson, Faith B.; Brown, Clayton H.; Goldberg, Richard W.; Potts, Wendy; Dixon, Lisa B.

2011-01-01

Inadequate self-management of chronic medical conditions like Type 2 diabetes may play a role in the poor health status of individuals with serious mental illnesses. We compared adherence to hypoglycemic medications and blood glucose control between 44 diabetes patients with a serious mental illness and 30 patients without a psychiatric illness. The two groups did not differ in their ability to manage a complex medication regimen as assessed by a performance-based measure of medication management capacity. However, significantly fewer patients with a mental illness self-reported nonadherence to their hypoglycemic regimens compared to those without a mental illness. Although individuals with mental illnesses also had better control of blood glucose, this metabolic parameter was not correlated with adherence to hypoglycemic medications in either patient group. The experience of managing a chronic mental illness may confer advantages to individuals with serious mental illnesses in the self-care of co-occurring medical conditions like Type 2 diabetes. PMID:21459458

Association between component costs, study methodologies, and foodborne illness-related factors with the cost of nontyphoidal Salmonella illness.

PubMed

McLinden, Taylor; Sargeant, Jan M; Thomas, M Kate; Papadopoulos, Andrew; Fazil, Aamir

2014-09-01

Nontyphoidal Salmonella spp. are one of the most common causes of bacterial foodborne illness. Variability in cost inventories and study methodologies limits the possibility of meaningfully interpreting and comparing cost-of-illness (COI) estimates, reducing their usefulness. However, little is known about the relative effect these factors have on a cost-of-illness estimate. This is important for comparing existing estimates and when designing new cost-of-illness studies. Cost-of-illness estimates, identified through a scoping review, were used to investigate the association between descriptive, component cost, methodological, and foodborne illness-related factors such as chronic sequelae and under-reporting with the cost of nontyphoidal Salmonella spp. illness. The standardized cost of nontyphoidal Salmonella spp. illness from 30 estimates reported in 29 studies ranged from $0.01568 to $41.22 United States dollars (USD)/person/year (2012). The mean cost of nontyphoidal Salmonella spp. illness was $10.37 USD/person/year (2012). The following factors were found to be significant in multiple linear regression (p≤0.05): the number of direct component cost categories included in an estimate (0-4, particularly long-term care costs) and chronic sequelae costs (inclusion/exclusion), which had positive associations with the cost of nontyphoidal Salmonella spp. illness. Factors related to study methodology were not significant. Our findings indicated that study methodology may not be as influential as other factors, such as the number of direct component cost categories included in an estimate and costs incurred due to chronic sequelae. Therefore, these may be the most important factors to consider when designing, interpreting, and comparing cost of foodborne illness studies.

A regressional analysis of maladaptive rumination, illness perception and negative emotional outcomes in Asian patients suffering from depressive disorder.

PubMed

Lu, Yanxia; Tang, Catherine; Liow, Chiew Shan; Ng, Winnie Wei Ni; Ho, Cyrus Su Hui; Ho, Roger Chun Mun

2014-12-01

Although illness perception has been shown to be associated with illness outcomes in various chronic physical diseases, the association of illness perception and rumination are not well elucidated in mental disorders. This study aims to investigate the mediational effects of adaptive and maladaptive rumination in the relationship between illness perception and negative emotions (depression, anxiety and stress) in male and female patients (N=110) suffering from depressive disorders. The results showed that maladaptive rumination mediated the relationship between illness perception and negative emotions in both male and female depressive patients. However, no mediating effects of adaptive rumination were found in the relationship between illness perception and negative emotion. Maladaptive rumination mediated the relationship between perceived identity, chronicity of illness, consequences of illness and emotional representation of illness and negative emotions in males. It also mediated the relationship between perceived identity and emotional representation of illness and negative emotions in females. The results, possible clinical implications and limitations of this study are also discussed. Copyright © 2014 Elsevier B.V. All rights reserved.

Factors associated with self-esteem in persons with morbid obesity and in persons with chronic obstructive pulmonary disease: a cross-sectional study.

PubMed

Bonsaksen, Tore; Fagermoen, May Solveig; Lerdal, Anners

2015-01-01

Living with chronic illnesses can be stressful and may negatively impact persons' self-esteem. Personal factors, like self-efficacy and illness perceptions, and also factors related to the environment, activity, and participation may be associated with self-esteem in chronic illness populations. This cross-sectional comparative study explored sociodemographic variables, work, physical activity, illness perceptions, and general self-efficacy in relation to self-esteem in persons with morbid obesity and in persons with chronic obstructive pulmonary disease (COPD). The study had a cross-sectional design. A total of 223 eligible participants were recruited from patient education courses, and data were collected at baseline. Self-esteem was measured with The Rosenberg self-esteem scale; the general self-efficacy scale was used to measure self-efficacy, and brief illness perception questionnaire was also used. This is an instrument assessing cognitions about the illness and emotional responses towards it. Multivariate linear regression was used in the statistical analyses. In obese participants (n = 134), higher self-esteem was associated with lower emotional response, a shorter timeline, and higher general self-efficacy. In COPD participants (n = 89), higher self-esteem was associated with higher general self-efficacy. The independent variables accounted for 42.9% (morbid obesity) and 49.4% (COPD) of the self-esteem variance. In participants in both illness groups, higher self-efficacy was associated with increased self-esteem. A shorter timeline and lower emotional response to illness was related to higher self-esteem only for the obese participants. The results indicate that believing in one's capacity to cope with everyday challenges is important for self-esteem in persons with morbid obesity and in persons with COPD, whereas illness perceptions related to the duration of illness and the coping with emotions also is important for self-esteem in persons with morbid obesity.

The Relationship Between Health Management and Information Behavior Over Time: A Study of the Illness Journeys of People Living With Fibromyalgia.

PubMed

Chen, Annie T

2016-10-25

Over the course of a chronic illness, patients face many challenges, including understanding what is happening to them and developing an effective strategy for managing illness. While there is existing literature concerning how people seek health-related information and cope with chronic illnesses, there is a need for additional research on how information affects patients' understandings of their illness, and how changes in this understanding affect their health management strategies over time. This study examined how health management, information seeking, and information consumption and use processes are related throughout an illness. A diversified recruitment strategy involving multiple media channels was used to recruit participants for an interview study. During the interviews, participants were asked to draw an "illness journey" timeline. The data were analyzed using a qualitative approach drawn from Interpretative Phenomenological Analysis and Grounded Theory. The study identified four main health management features of illness journeys: onset, progression toward diagnosis, acceptance, and development of an effective management strategy. The study then focused on how information seeking changes over illness journeys, particularly in terms of a transition from active information seeking to monitoring with intermittent focused searching. Last, the paper describes the information consumption and use processes that patients engaged in throughout their journey. This study makes three important contributions to the field. First, it presents an integrated conceptualization of how health management and information behaviors are related on illness journeys. Second, it adds to our existing knowledge on health literacy and self-management of chronic illness. Third, the study has implications for health interface design.

20 CFR 30.911 - Does maximum medical improvement always have to be reached for an impairment to be included in...

Code of Federal Regulations, 2012 CFR

2012-04-01

... paragraph (a) of this section, if OWCP finds that an employee's covered illness is in the terminal stages... OCCUPATIONAL ILLNESS COMPENSATION PROGRAM ACT OF 2000 CLAIMS FOR COMPENSATION UNDER THE ENERGY EMPLOYEES OCCUPATIONAL ILLNESS COMPENSATION PROGRAM ACT OF 2000, AS AMENDED Impairment Benefits Under Part E of EEOICPA...

20 CFR 30.911 - Does maximum medical improvement always have to be reached for an impairment to be included in...

Code of Federal Regulations, 2011 CFR

2011-04-01

... paragraph (a) of this section, if OWCP finds that an employee's covered illness is in the terminal stages... OCCUPATIONAL ILLNESS COMPENSATION PROGRAM ACT OF 2000 CLAIMS FOR COMPENSATION UNDER THE ENERGY EMPLOYEES OCCUPATIONAL ILLNESS COMPENSATION PROGRAM ACT OF 2000, AS AMENDED Impairment Benefits Under Part E of EEOICPA...

20 CFR 30.911 - Does maximum medical improvement always have to be reached for an impairment to be included in...

Code of Federal Regulations, 2010 CFR

2010-04-01

... paragraph (a) of this section, if OWCP finds that an employee's covered illness is in the terminal stages... OCCUPATIONAL ILLNESS COMPENSATION PROGRAM ACT OF 2000 CLAIMS FOR COMPENSATION UNDER THE ENERGY EMPLOYEES OCCUPATIONAL ILLNESS COMPENSATION PROGRAM ACT OF 2000, AS AMENDED Impairment Benefits Under Part E of EEOICPA...

20 CFR 30.911 - Does maximum medical improvement always have to be reached for an impairment to be included in...

Code of Federal Regulations, 2013 CFR

2013-04-01

... paragraph (a) of this section, if OWCP finds that an employee's covered illness is in the terminal stages... OCCUPATIONAL ILLNESS COMPENSATION PROGRAM ACT OF 2000 CLAIMS FOR COMPENSATION UNDER THE ENERGY EMPLOYEES OCCUPATIONAL ILLNESS COMPENSATION PROGRAM ACT OF 2000, AS AMENDED Impairment Benefits Under Part E of EEOICPA...

20 CFR 30.911 - Does maximum medical improvement always have to be reached for an impairment to be included in...

Code of Federal Regulations, 2014 CFR

2014-04-01

... paragraph (a) of this section, if OWCP finds that an employee's covered illness is in the terminal stages... OCCUPATIONAL ILLNESS COMPENSATION PROGRAM ACT OF 2000 CLAIMS FOR COMPENSATION UNDER THE ENERGY EMPLOYEES OCCUPATIONAL ILLNESS COMPENSATION PROGRAM ACT OF 2000, AS AMENDED Impairment Benefits Under Part E of EEOICPA...

Special not different: general practitioners' accounts of their care of dying people.

PubMed

Field, D

1998-05-01

In modern Britain the majority of terminal care occurs in people's own homes and many dying people and their carers would prefer the death itself to occur in the home. The quality of terminal care in the home and the possibility of a home death depend to a great extent upon the care provided by GPs and community nurses. This paper reports on GPs' experiences of caring for dying people and their attitudes towards such work. It is based on unstructured interviews with 25 GPs who graduated from the 1979 entry cohort to the University of Leicester medical school. The respondents were recruited via a questionnaire following up previous research with this cohort on 'fear of death'. Although self-selecting, interviewees were not significantly different from those who did not volunteer for interview in any of the statistical analyses of the questionnaire data. There were a number of similarities in their accounts of their care of dying people. Common themes were that the care of dying people was important, rewarding and satisfying; that the GPs saw themselves as part of a team of carers, frequently as team co-ordinators; good working relationships with district nurses but less satisfactory relationships with hospitals and social workers; that patient and family were both recipients of care; and honesty in communication with dying people, albeit tempered. Three issues of contemporary relevance were: tensions over the role of hospice and specialist terminal care services; care of people with chronic terminal illnesses other than cancer; and the role of GPs in the social construction of bereavement.

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

PubMed

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

2016-05-01

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

Outcomes that matter in chronic illness: a taxonomy informed by self-determination and adult-learning theory.

PubMed

Zubialde, John P; Mold, James; Eubank, Daniel

2009-09-01

The inability to cure disease or reverse dysfunction results in chronic illness. With it, patients, their families, and society face a unique set of needs and challenges. In the United States, its care consumes 75% of total health care resources. Two thirds of Medicare resources are spent on the 25% of beneficiaries having multiple chronic diseases. Surprisingly, health outcomes of greatest importance to this population remain poorly described and researched. A new taxonomy is presented that uses insights from Self Determination Theory and Adult Learning Theory to expand the scope of recognized health outcomes by including what the authors call "outcomes that matter." Targeting this broader set of outcomes may lead to more effective and meaningful care and open new areas for outcomes research in chronic illness management.

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.

Are life-extending treatments for terminal illnesses a special case? Exploring choices and societal viewpoints.

PubMed

McHugh, Neil; van Exel, Job; Mason, Helen; Godwin, Jon; Collins, Marissa; Donaldson, Cam; Baker, Rachel

2018-02-01

Criteria used by the National Institute for Health and Care Excellence (NICE) to assess life-extending, end-of-life (EoL) treatments imply that health gains from such treatments are valued more than other health gains. Despite claims that the policy is supported by societal values, evidence from preference elicitation studies is mixed and in-depth research has shown there are different societal viewpoints. Few studies elicit preferences for policies directly or combine different approaches to understand preferences. Survey questions were designed to investigate support for NICE EoL guidance at national and regional levels. These 'Decision Rule' and 'Treatment Choice' questions were administered to an online sample of 1496 UK respondents in May 2014. The same respondents answered questions designed to elicit their agreement with three viewpoints (previously identified and described) in relation to provision of EoL treatments for terminally ill patients. We report the findings of these choice questions and examine how they relate to each other and respondents' viewpoints. The Decision Rule questions described three policies: DA - a standard 'value for money' test, applied to all health technologies; DB - giving special consideration to all treatments for terminal illnesses; and DC - giving special consideration to specific categories of treatments for terminal illnesses e.g. life extension (as in NICE EoL guidance) or those that improve quality-of-life (QoL). Three Treatment Choices were presented: TA - improving QoL for patients with a non-terminal illness; TB - extending life for EoL patients; and TC - improving QoL at the EoL. DC received most support (45%) with most respondents giving special consideration to EoL only when treatments improved QoL. The most commonly preferred treatment choices were TA (51%) and TC (43%). Overall, this study challenges claims about public support for NICE's EoL guidance and the focus on life extension at EoL and substantiates existing evidence of plurality in societal values. Copyright © 2017 The Authors. Published by Elsevier Ltd.. All rights reserved.

Role of inhibitory κB kinase and c-Jun NH2-terminal kinase in the development of hepatic insulin resistance in critical illness diabetes.

PubMed

Jiang, Shaoning; Messina, Joseph L

2011-09-01

Hyperglycemia and insulin resistance induced by acute injuries or critical illness are associated with increased mortality and morbidity, as well as later development of type 2 diabetes. The molecular mechanisms underlying the acute onset of insulin resistance following critical illness remain poorly understood. In the present studies, the roles of serine kinases, inhibitory κB kinase (IKK) and c-Jun NH(2)-terminal kinase (JNK), in the acute development of hepatic insulin resistance were investigated. In our animal model of critical illness diabetes, activation of hepatic IKK and JNK was observed as early as 15 min, concomitant with the rapid impairment of hepatic insulin signaling and increased serine phosphorylation of insulin receptor substrate 1. Inhibition of IKKα or IKKβ, or both, by adenovirus vector-mediated expression of dominant-negative IKKα or IKKβ in liver partially restored insulin signaling. Similarly, inhibition of JNK1 kinase by expression of dominant-negative JNK1 also resulted in improved hepatic insulin signaling, indicating that IKK and JNK1 kinases contribute to critical illness-induced insulin resistance in liver.

Common and unique associated factors for medically unexplained chronic widespread pain and chronic fatigue☆

PubMed Central

McBeth, J.; Tomenson, B.; Chew-Graham, C.A.; Macfarlane, G.J.; Jackson, J.; Littlewood, A.; Creed, F.H.

2015-01-01

Objective Chronic widespread pain and chronic fatigue share common associated factors but these associations may be explained by the presence of concurrent depression and anxiety. Methods We mailed questionnaires to a randomly selected sample of people in the UK to identify participants with chronic widespread pain (ACR 1990 definition) and those with chronic fatigue. The questionnaire assessed sociodemographic factors, health status, healthcare use, childhood factors, adult attachment, and psychological stress including anxiety and depression. To identify persons with unexplained chronic widespread pain or unexplained chronic fatigue; we examined participant's medical records to exclude medical illness that might cause these symptoms. Results Of 1443 participants (58.0% response rate) medical records of 990 were examined. 9.4% (N = 93) had unexplained chronic widespread pain and 12.6% (N = 125) had unexplained chronic fatigue. Marital status, childhood psychological abuse, recent threatening experiences and other somatic symptoms were commonly associated with both widespread pain and fatigue. No common effect was found for few years of education and current medical illnesses (more strongly associated with chronic widespread pain) or recent illness in a close relative, neuroticism, depression and anxiety scores (more strongly associated with chronic fatigue). Putative associated factors with a common effect were associated with unexplained chronic widespread pain or unexplained chronic fatigue only when there was concurrent anxiety and/or depression. Discussion This study suggests that the associated factors for chronic widespread pain and chronic fatigue need to be studied in conjunction with concurrent depression/anxiety. Clinicians should be aware of the importance of concurrent anxiety or depression. PMID:26652592

Psychometric testing of the Spiritual Well-Being Scale-Mandarin version in Taiwanese cancer patients.

PubMed

Tang, Woung-Ru; Kao, Chen-Yi

2017-06-01

The spiritual well-being of terminally ill cancer patients is an important indicator of the quality of their lives and of the quality of hospice care, but no validated tools are available for assessing this indicator in Taiwan. The present cross-sectional study validated the Spiritual Well-Being Scale-Mandarin version (SWBS-M) by testing its psychometric properties in 243 cancer patients from five teaching hospitals throughout Taiwan. Construct validity was tested by factor analysis and hypothesis testing. Patients' spiritual well-being and quality of life were assessed using the SWBS-M and the McGill Quality of Life Questionnaire (MQoL), respectively. Overall, the SWBS-M had an internal consistency/reliability of 0.89. Exploratory factor analysis showed that the SWBS-M had an underlying two-factor structure, explaining 46.94% of the variance. SWBS-M scores correlated moderately with MQoL scores (r = 0.48, p < 0.01). Terminally ill cancer patients' spiritual well-being was inversely related to their average pain level during the previous 24 hours (r = -0.183, p = 0.006). Cancer patients' spiritual well-being also differed significantly with their experience of pain (t = -3.67, p < 0.001); terminally ill cancer patients with pain during the previous 24 hours had a lower sense of spiritual well-being than those without pain. Our findings support a two-factor model for the SWBS-M in terminally ill Taiwanese cancer patients. We recommend testing the psychometric properties of the SWBS-M in different patient populations to verify its factorial structure in other Asian countries.

Associations of prognostic awareness/acceptance with psychological distress, existential suffering, and quality of life in terminally ill cancer patients' last year of life.

PubMed

Tang, Siew Tzuh; Chang, Wen-Cheng; Chen, Jen-Shi; Chou, Wen-Chi; Hsieh, Chia-Hsun; Chen, Chen H

2016-04-01

Whether prognostic awareness benefits terminally ill cancer patients' psychological-existential well-being and quality of life (QOL) is unclear because of lack of well-controlled longitudinal studies. This study longitudinally evaluated the associations of accurate prognostic awareness and prognostic acceptance with psychological distress, existential suffering, and QOL while comprehensively controlling for confounders in Taiwanese terminally ill cancer patients' last year of life. A convenience sample of 325 cancer patients was followed until death. Psychological distress and existential suffering were assessed by severe anxiety and depressive symptoms and high self-perceived sense of burden to others, respectively. Dichotomized and continuous (QOL) outcome variables were evaluated by multivariate logistic and linear regression modeling with the generalized estimating equation, respectively. Accurate prognostic awareness was not associated with the likelihood of severe anxiety or depressive symptoms but significantly increased the likelihood of high self-perceived sense of burden to others and was associated with poorer QOL in participants' last year of life. Participants who knew and highly accepted their prognosis were significantly less likely to experience severe anxiety symptoms than those who were unaware of or knew their prognosis but had difficulty accepting it. Knowing one's poor prognosis and confronting one's impending death without full acceptance and adequate professional psycho-spiritual support may harm more than benefit terminally ill cancer patients' psychological state, existential well-being, and QOL. These findings highlight the importance of tailoring psycho-spiritual support to cancer patients' psychological and existential needs when prognostic information is disclosed. Copyright © 2015 John Wiley & Sons, Ltd.