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

PubMed

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

2017-02-01

Caring for the family is included as one of the eight domains of quality palliative care, calling attention to the importance of the family system and family communications about cancer during care and treatment of the disease. Previously, a model of family caregiver communication defined four caregiver communication types-Manager, Carrier, Partner, Lone-each with a unique communication pattern. The purpose of the present study was to extend the model of family caregiver communication in cancer care to further understand the impact of family communication burden on caregiving outcomes. This mixed-method study employed fieldnotes from a family caregiver intervention focused on quality of life and self-reported caregiver communication items to identify a specific family caregiver type. Caregiver types were then analyzed using outcome measures on psychological distress, skills preparedness, family inventory of needs, and quality-of-life domains. Corroboration between fieldnotes and self-reported communication for caregivers (n = 21, 16 women, mean age of 53 years) revealed a definitive classification of the four caregiver types (Manager = 6, Carrier = 5, Partner = 6, Lone = 4). Mean scores on self-reported communication items documented different communication patterns congruent with the theoretical framework of the model. Variation in caregiver outcomes measures confirmed the model of family caregiver communication types. Partner and Lone caregivers reported the lowest psychological distress, with Carrier caregivers feeling least prepared and Manager caregivers reporting the lowest physical quality of life. This study illustrates the impact of family communication on caregiving and increases our knowledge and understanding about the role of communication in caregiver burden. The research provides the first evidence-based validation for a family caregiver communication typology and its relationship to caregiver outcomes. Future research is needed to develop and test

Health sciences library outreach to family caregivers: a call to service.

PubMed

Howrey, Mary M

2018-04-01

This commentary discusses the information needs of family caregivers and care recipients in the United States. Health sciences library services and outreach activities that support family caregivers include: (1) advocacy, (2) resource building, and (3) programming and education. Ethical issues related to the privacy and confidentiality of clients are outlined in the commentary for information service providers. Also, continuing professional education resources are identified to assist librarians in providing high-quality information services for this special family caregiver population, such as those designed by the National Library of Medicine (NLM) through the NLM 4 Caregivers program.

Health sciences library outreach to family caregivers: a call to service

PubMed Central

Howrey, Mary M.

2018-01-01

This commentary discusses the information needs of family caregivers and care recipients in the United States. Health sciences library services and outreach activities that support family caregivers include: (1) advocacy, (2) resource building, and (3) programming and education. Ethical issues related to the privacy and confidentiality of clients are outlined in the commentary for information service providers. Also, continuing professional education resources are identified to assist librarians in providing high-quality information services for this special family caregiver population, such as those designed by the National Library of Medicine (NLM) through the NLM 4 Caregivers program. PMID:29632449

Increasing family members' appreciation of family caregiving stress.

PubMed

Gopalan, Neena; Brannon, Laura A

2006-03-01

Participants read a message discussing the duties of a typical family caregiver (for example, a woman taking care of her elderly mother) and the associated psychological, physical, social, and financial stresses. The message was accompanied by an appeal that was either a control or was altruistic (other-oriented: focusing on the mother/caregiver's well-being) or egoistic (self-oriented: focusing on the child of the caregiver's needs and feelings). Participants who received an altruistic appeal were more appreciative of caregiving stresses than were those given an egoistic or a control appeal. Increasing family members' awareness of the stress involved in family caregiving is a first step in encouraging them to personally intervene on behalf of the caregiver.

Respite service use among caregivers of older people: comparative analysis of family dementia caregivers with musculoskeletal and circulatory system disorder caregivers.

PubMed

Vecchio, Nerina; Fitzgerald, Janna A; Radford, Katrina; Kurrle, Susan

2018-01-01

To identify the main drivers of the use of respite services and the need for respite services among caregivers of people experiencing dementia relative to family caregivers of people with other health conditions. Based on nationally representative secondary data regression analysis was used to test the association between selected health conditions and the utilisation of and need for respite services. For a person living with dementia the odds of using respite care are higher than for a person with either a musculoskeletal or circulatory condition. Family caregivers of people living with dementia report the odds of the need for more respite as 5.3 times higher than for family caregivers of people with musculoskeletal conditions and 7.7 times higher than for family caregivers of people with circulatory conditions. The main reason for never using respite services is largely driven by the type of health condition, age of care recipient, existence of a spouse, and level of disability. Respite services that cater to the specific needs of families experiencing dementia at home should become a higher priority within the aged care sector. Alternative models of respite care that focus on prevention and early intervention would be cost effective.

Nursing role implications for family caregiving.

PubMed

Grant, Marcia; Ferrell, Betty

2012-11-01

To describe the clinical, education, and research roles of professional nurses caring for family caregivers. DATA SCORES: Review of literature and Websites on the professional nursing role and family caregivers. The growing number of family caregivers of cancer patients will need education and support. The professional oncology nurse is best suited to assess, teach, and support these family caregivers, as well as contribute to the evidence base of these areas of practice. Professional nurses caring for oncology patients need to expand their role to include additional support and education of family caregivers. Copyright © 2012 Elsevier Inc. All rights reserved.

Teaching Wound Care to Family Caregivers.

PubMed

Kirkland-Kyhn, Holly; Generao, Stephanie Anne; Teleten, Oleg; Young, Heather M

2018-03-01

: This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home.The articles in this new installment of the series provide simple and useful instructions that nurses should reinforce with family caregivers who perform wound care tasks. Each article also includes an informational tear sheet-Information for Family Caregivers-that contains links to instructional videos. To use this series, nurses should read the article first, so they understand how best to help family caregivers, and then encourage caregivers to watch the videos and ask questions. For additional information, see Resources for Nurses.

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

PubMed

Lai, Daniel W L

2007-01-01

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

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

PubMed

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

2015-01-01

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

Caregiver burden and nonachievement of healthy lifestyle behaviors among family caregivers of cardiovascular disease patients.

PubMed

Mochari-Greenberger, Heidi; Mosca, Lori

2012-01-01

To determine whether caregiver burdens are associated with lifestyle behaviors 1 year following the hospitalization of a family member with cardiovascular disease (CVD). Prospective follow-up study of National Heart Lung and Blood Institute sponsored Family Intervention Trial for Heart Health participants. Hospital-based recruitment/baseline visit with 1-year follow-up. Family members of hospitalized CVD patients (N  =  423; 67% female; 36% racial/ethnic minority; mean age 49 years). Systematic evaluation at 1 year to determine heart-healthy diet (defined as <10% kcal from saturated fat; Block 98 Food Frequency Questionnaire) and physical activity (defined as ≥4 d/wk; Behavioral Risk Factor Surveillance System Survey) behaviors and caregiver burdens (five domains: employment, financial, physical, social, and time; Caregiver Strain Questionnaire). Logistic regression adjusted for covariates. Heart-healthy diet was less frequent among caregivers citing feeling overwhelmed (odds ratio [OR]  =  .50; 95% confidence interval [CI]  =  .26-.97), sleep disturbance (OR  =  .51; 95% CI  =  .27-.96), financial strain (OR  =  .41; 95% CI  =  .20-.86), upsetting behavior (OR  =  .48; 95% CI  =  .25-.92), and/or time demands (OR  =  .47; 95% CI  =  .26-.85) as burdens. Physical activity was less frequent among caregivers reporting financial strain (OR  =  .32; 95% CI  =  .13-.81) or upsetting patient behavior (OR  =  .33; 95% CI  =  .15-.76) as burdens. The most commonly cited caregiver burdens included changes in personal plans (39%), time demands (38%), and sleep disturbance (30%). Caregiver burdens were associated with nonachievement of heart-healthy diet and physical activity behaviors among family caregivers 1 year after patient discharge. When developing heart-health promotion interventions, caregiver burden should be considered as a possible barrier to prevention among family members of CVD patients.

Hospitalized elders and family caregivers: a typology of family worry.

PubMed

Li, Hong

2005-01-01

This qualitative study explored the kinds of worry that family caregivers experience when their older relatives are hospitalized. Little is known about what kinds of worries family caregivers may have in association with the hospitalizations of older relatives. An understanding of the different patterns of family worry may help health care teams intervene more effectively to meet family caregiver's needs by reducing their anxiety. A qualitative descriptive design with Loftland and Loftland (1984) approach for the study of a phenomenon occurring in a social setting was used. A purposeful sample of 10 participants was obtained that included six family caregivers and four nurses. Participants were recruited from two hospitals in the northwest US. Intensive interviews and participant observations were used for data collection, and Loftland and Loftland's (1984) qualitative approach was used for data analysis. Family worry was defined as family caregivers' felt difficulty in fulfilling their roles because of worry. Four categories of family worry were identified as a result of this study: (i) worry about the patient's condition; (ii) worry about the patient's care received from the health care team; (iii) worry about future care for the patient provided by the family caregiver; and (iv) worry about finances. The findings of this pilot study provide nurses with the initial knowledge of the typology of family worry associated with elderly relatives' hospitalizations. The findings of this study may sensitize the nurses to more precisely evaluate family caregivers' worry about their hospitalized elders and provide more effective nursing interventions to improve outcomes of both patients and their family caregivers.

Widening the Generational Circle: Family Caregivers.

ERIC Educational Resources Information Center

Smith, Bert Kruger

This document addresses the dilemma faced by families with an aging or disabled member and the stress associated with the role of family caregiver. Emotions experienced by family caregivers, especially when the caregiver is an adult child caring for an elderly or frail parent, are discussed and feelings of desertion, dependence, and sibling…

Creating A Nationwide Nonpartisan Initiative for Family Caregivers in Political Party Platforms.

PubMed

Scribner, Ben; Lynn, Joanne; Walker, Victoria; Morgan, Les; Montgomery, Anne; Blair, Elizabeth; Baird, Davis; Goldschmidt, Barbara; Kirschenbaum, Naomi

2017-06-01

Policymakers have been slow to support family caregivers, and political agendas mostly fail to address the cost burdens, impact on employment and productivity, and other challenges in taking on long-term care tasks. This project set out to raise policymakers' awareness of family caregivers through proposals to Republican and Democratic party platforms during the 2016 political season. The Family Caregiver Platform Project (FCPP) reviewed the state party platform submission process for Democratic and Republican parties in all 50 states and the District of Columbia. We built a website to make each process understandable by caregiver advocates. We designed model submissions to help volunteers tailor a proposal and recruited caregiver advocates participating in their state process. Finally, we mobilized a ground operation in many states and followed the progress of submissions in each state, as well as the formation of the national platforms. In 39 states, at least one party, Republican or Democrat, hosted a state party platform process. As of September 2016 FCPP volunteers submitted proposals to 29 state parties in 22 states. Family caregiver language was added to eight state party platforms, one state party resolution, two bipartisan legislative resolutions, and one national party platform. The FCPP generated a non-partisan grassroots effort to educate and motivate policymakers to address caregiving issues and solutions. Democratic party leaders provided more opportunities to connect with political leaders, with seven Democratic parties and one Republican party, addressing family caregiver issues in their party platforms. © 2017, Copyright the Authors Journal compilation © 2017, The American Geriatrics Society.

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

PubMed

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

2016-05-01

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

Conveying empathy to hospice family caregivers: Team responses to caregiver empathic communication

PubMed Central

Wittenberg-Lyles, Elaine; Oliver, Debra Parker; Demiris, George; Rankin, Anna; Shaunfield, Sara; Kruse, Robin L.

2012-01-01

Objective The goal of this study was to explore empathic communication opportunities presented by family caregivers and responses from interdisciplinary hospice team members. Methods Empathic opportunities and hospice team responses were analyzed from biweekly web-based videoconferences between family caregivers and hospice teams. The authors coded the data using the Empathic Communication Coding System (ECCS) and identified themes within and among the coded data. Results Data analysis identified 270 empathic opportunity-team response sequences. Caregivers expressed statements of emotion and decline most frequently. Two-thirds of the hospice team responses were implicit acknowledgments of caregiver statements and only one-third of the team responses were explicit recognitions of caregiver empathic opportunities. Conclusion Although hospice team members frequently express emotional concerns with family caregivers during one-on-one visits, there is a need for more empathic communication during team meetings that involve caregivers. Practice implications Hospice clinicians should devote more time to discussing emotional issues with patients and their families to enhance patient-centered hospice care. Further consideration should be given to training clinicians to empathize with patients and family caregivers. PMID:22554387

3 CFR 8748 - Proclamation 8748 of November 1, 2011. National Family Caregivers Month, 2011

Code of Federal Regulations, 2012 CFR

2012-01-01

... United States of America A Proclamation Across our country, millions of family members, neighbors, and... Caregivers Month, we pay tribute to the individuals throughout America who ensure the health and well-being of their relatives and loved ones. Many of our Nation’s family caregivers assist seniors and people...

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

PubMed

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

2017-07-01

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

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

PubMed

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

2010-03-01

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

Family-based therapy for dementia caregivers: clinical observations

PubMed Central

MITRANI, V. B.; CZAJA, S. J.

2008-01-01

Family caregiving for dementia patients is a major social and clinical problem. Family caregivers face major stressful emotional, social and economic burdens, and the negative consequences associated with caregiving are well documented. Given the projected increase in the number of people with dementia, there is a need to identify approaches that will help families manage the challenges of caregiving. Social support from friends and family members has consistently been found to mediate caregiver outcomes, yet many caregivers face problems with isolation and estrangement from family members. In this regard, family-based therapy is a promising intervention for increasing social support for caregivers, and enhancing their quality of life and ability to provide care.This paper will discuss how family-based therapy can be applied as an intervention for family caregivers of dementia patients.The clinical implications of specific interactional patterns will be presented via case examples from an ongoing clinical trial with white American and Cuban American caregivers of dementia patients.The intent is to demonstrate how identification of interactional patterns is a valuable tool for implementing family-based interventions. PMID:18548132

Quality of life in family caregivers of schizophrenia patients in Spain: caregiver characteristics, caregiving burden, family functioning, and social and professional support.

PubMed

Ribé, José M; Salamero, Manel; Pérez-Testor, Carles; Mercadal, Josep; Aguilera, Concepción; Cleris, Margarida

2018-03-01

Caregivers experience physical and mental stress that ends up lowering their quality of life (QoL). Our goal was to research (a) the level of caregivers QoL; (b) the relationships between the demographic characteristics of the caregivers, their caregiving burden, their family functioning, their social and professional support and their QoL and (c) the best predictors of caregivers QoL. 100 key caregivers (70% parents, 8% spouses, 17% siblings and 5% children) were studied using the world health organization quality of life-Bref (WHOQOL-BREF) to research their QoL, the Zarit Scale to assess their perception of their caregiving burden, the Social Network Questionnaire to examine their social support, the Family APGAR to assess the satisfaction with social support from the family and a professional support scale (Escala de Apoyo Profesional) to determine the professional support received by caregivers was performed. Scores on the WHOQOL-BREF in the Physical, Psychological, Social and Environment domains were 15.0 (SD = 3.7), 13.3 (SD = 4.2), 11.0 (SD = 4.7) and 13.5 (SD = 3.1), respectively. Through bivariate analysis, the dimensions that showed a positive significant association with QoL were being a young male caregiver who was a working father with a high educational level and help from other family members. Caregivers of patients who were older and had a later onset of the illness, a lower score on the Zarit Scale and a high score on the Social Network Questionnaire, Family APGAR and Escala de Apoyo Profesional showed higher QoL. Many of these variables made a unique contribution in the multivariate analysis. There is a significant association between the caregiver's burden and their QoL. Regression analysis showed that the best predictors of QoL were caregiving burden, social support and professional support.

Family medical leave as a resilience resource for family caregivers.

PubMed

Swanke, Jayme; Zeman, Laura Dreuth

2009-01-01

Case managers mobilize family networks to care for patients. Family medical leave can be a resource for case managers who seek to enhance resilience among family caregivers. The Family Medical Leave Act, passed in 1993, was the first U.S. policy to regulate employee leaves from work for family care purposes (29 CFR 825.102). This policy offers family caregivers increased flexibility and equality. Current and emerging policies also can reduce financial strain. The discussion examines how case managers can integrate family medical leave into best-practice models to support patients and family caregivers.

Urinary incontinence - the family caregivers' perspective.

PubMed

Hayder, Daniela; Schnepp, Wilfried

2008-08-01

Urinary incontinence can be expected to present an issue in domestic care with various conditions and ways of dealing with the situation. This pilot study investigates the kinds of coping strategies developed by family caregivers of urinary incontinent persons. Therefore, it seeks to explore how family caregivers experience and shape everyday life with an incontinent family member.Based on a qualitative design, problem-centered interviews were carried out with 10 family caregivers (4 men, 6 women) and analyzed according to Grounded Theory.The results show that family caregivers place major emphasis on maintaining continence, which is conceived as an expression of concern for the care-dependent person. The data facilitated the development of four major concepts: incontinence as a cause of dependency, feelings of shame, striving for continence and coping with incontinence. These concepts indicate that family caregivers look for strategies to provide the incontinent family member with the opportunity of (self-) controlled excretion. Yet this kind of support is linked to feelings of shame on both parts.

Conveying empathy to hospice family caregivers: team responses to caregiver empathic communication.

PubMed

Wittenberg-Lyles, Elaine; Debra, Parker Oliver; Demiris, George; Rankin, Anna; Shaunfield, Sara; Kruse, Robin L

2012-10-01

The goal of this study was to explore empathic communication opportunities presented by family caregivers and responses from interdisciplinary hospice team members. Empathic opportunities and hospice team responses were analyzed from bi-weekly web-based videoconferences between family caregivers and hospice teams. The authors coded the data using the Empathic Communication Coding System (ECCS) and identified themes within and among the coded data. Data analysis identified 270 empathic opportunity-team response sequences. Caregivers expressed statements of emotion and decline most frequently. Two-thirds of the hospice team responses were implicit acknowledgements of caregiver statements and only one-third of the team responses were explicit recognitions of caregiver empathic opportunities. Although hospice team members frequently express emotional concerns with family caregivers during one-on-one visits, there is a need for more empathic communication during team meetings that involve caregivers. Hospice clinicians should devote more time to discussing emotional issues with patients and their families to enhance patient-centered hospice care. Further consideration should be given to training clinicians to empathize with patients and family caregivers. Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.

Family caregivers' health in connection with providing care.

PubMed

Erlingsson, Christen L; Magnusson, Lennart; Hanson, Elizabeth

2012-05-01

Our aim was to investigate connections between Swedish family caregivers' health and providing care for an ill relative by conducting a systematic search and synthesis of previous research. We analyzed 31 articles using first qualitative content analysis then hermeneutic analysis. Analysis resulted in three derived themes-sliding sideways into caregiving, caregiving in reciprocity, and caregiving in disintegration-and a main interpretation and conceptual model of Swedish family caregivers' health-caregiving in a sphere of beliefs. Results indicated that Swedish family caregivers' beliefs, experiences of reciprocity, or nonsupport, together with quality of interpersonal relationships and feelings of responsibility and guilt, have a profound impact on their health. These results point to the value and importance of nurses gaining an understanding of family caregivers' beliefs and experiences of reciprocity or nonsupport to effectively promote family caregivers' health.

[Effects of Home Care Services Use by Older Adults on Family Caregiver Distress].

PubMed

Kim, Jiyeon; Kim, Hongsoo

2016-12-01

The purpose of this study was to examine the association between utilization of home care services under the national long-term care insurance system and family caregiver distress. A secondary data analysis was conducted in this study using data collected in 2011 and 2012 from the Korean version of International Resident Assessment Instrument (interRAI) Home Care assessment system. The study sample included 228 clients receiving community based home care and their family caregivers in Korea. Descriptive statistics, χ² test, t-test, and Heckman selection model analysis were conducted using SAS 9.3. Presence of family caregiver distress was significantly associated with days of nurse visits (β=-.89, p=<.001) and home helper visits (β=-.53, p=.014). Level of caregiver distress was also significantly associated with days of nurse visits (β=-.66, p=.028). Other factors which were significantly associated with caregiver distress were depression, cognitive function, inadequate pain control, social support for older adult, and caregiver relationship to the older adult. The results of this study show that visiting nurse service and appropriate support programs for Older Adults and family caregivers experiencing caregiver distress should be developed and provided to families based on the health care needs of older adults and their family caregivers for effective and sustainable home care.

Family caregivers of people with dementia

PubMed Central

Brodaty, Henry; Donkin, Marika

2009-01-01

Family caregivers of people with dementia, often called the invisible second patients, are critical to the quality of life of the care recipients. The effects of being a family caregiver, though sometimes positive, are generally negative, with high rates of burden and psychological morbidity as well as social isolation, physical ill-health, and financial hardship. Caregivers vulnerable to adverse effects can be identified, as can factors which ameliorate or exacerbate burden and strain. Psychosocial interventions have been demonstrated to reduce caregiver burden and depression and delay nursing home admission. Comprehensive management of the patient with dementia includes building a partnership between health professionals and family caregivers, referral to Alzheimer's Associations, and psychosocial interventions where indicated. PMID:19585957

Family caregiver communication in oncology: advancing a typology.

PubMed

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

2016-04-01

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

Purpose in Life Among Family Care Partners Managing Dementia: Links to Caregiving Gains.

PubMed

Polenick, Courtney A; Sherman, Carey Wexler; Birditt, Kira S; Zarit, Steven H; Kales, Helen C

2018-06-04

Purpose in life is associated with better health and has been found to minimize caregiving stress. Greater purpose may also promote caregiving gains (i.e., rewards or uplifts from providing care), yet the implications of purpose for positive aspects of the care role are largely unknown. The present study determined how perceptions of purpose in life among persons with dementia (PWDs) and their family caregivers are linked to caregiving gains. This cross-sectional study examined 153 co-resident family caregivers drawn from the 2011 National Health and Aging Trends Study and National Study of Caregiving. Linear regressions were estimated to evaluate associations between caregivers' and PWDs' reports of their own purpose in life and caregivers' perceived caregiving gains, along with whether these associations vary by caregiver gender. Models controlled for caregivers' sociodemographic characteristics, relationship to the PWD, care tasks, role overload, negative caregiving relationship quality, and both care partners' chronic health conditions. Caregivers' higher purpose in life was significantly linked to greater caregiving gains. Beyond this association, PWDs' higher purpose in life was significantly associated with greater caregiving gains for women but not for men. Purpose in life is a psychological resource that contributes to positive caregiving outcomes. Interventions to improve caregiver well-being could benefit from strategies that strengthen and maintain feelings of purpose among caregivers and PWDs.

A national profile of end-of-life caregiving in the United States

PubMed Central

Ornstein, Katherine A.; Kelley, Amy S.; Bollens-Lund, Evan; Wolff, Jennifer L.

2017-01-01

Family and friends are the predominant providers of end-of-life care (EOL). Yet knowledge of the caregiving experience at the EOL has been constrained by a narrow focus on specific diseases or the “primary” caregiver and methodological limitations due to reliance on convenience samples, or recall biases associated with mortality follow-back study design. Using prospective, linked nationally representative datasets of Medicare beneficiaries and their caregivers, we found that in 2011 900,000 older adults at the EOL received support from 2.3 million paid and unpaid caregivers. Nearly 9 in 10 of these caregivers were family members or unpaid. EOL caregivers provided more extensive care and reported more care-related challenges (e.g., physical difficulty) than non-EOL caregivers. EOL challenges were especially prevalent among caregiving spouses. To meet the needs of older adults at the EOL, families and unpaid caregivers must be better recognized and integrated in care delivery and supportive services must be expanded and made more widely available. PMID:28679804

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

PubMed

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

2014-10-01

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

Targeting communication interventions to decrease oncology family caregiver burden

PubMed Central

Wittenberg-Lyles, Elaine; Goldsmith, Joy; Oliver, Debra Parker; Demiris, George; Rankin, Anna

2012-01-01

Objectives The goal of this paper was to articulate and describe family communication patterns that give shape to four types of family caregivers: Manager, Carrier, Partner, and Loner. Data Sources Case studies of oncology family caregivers and hospice patients were selected from data collected as part of a larger, randomized controlled trial aimed at assessing family participation in interdisciplinary team meetings. Conclusion Each caregiver type demonstrates essential communication traits with nurses and team members; an ability to recognize these caregiver types will facilitate targeted interventions to decrease family oncology caregiver burden. Implications for Nursing Practice By becoming familiar with caregiver types, oncology nurses will be better able to address family oncology caregiver burden and the conflicts arising from family communication challenges. With an understanding of family communication patterns and its impact on caregiver burden, nurses can aid patient, family, and team to best optimize all quality of life domains for patient as well as the lead family caregiver. PMID:23107184

Reconciling work and family caregiving among adult-child family caregivers of older people with dementia: effects on role strain and depressive symptoms.

PubMed

Wang, Yu-Nu; Shyu, Yea-Ing Lotus; Chen, Min-Chi; Yang, Pei-Shan

2011-04-01

This paper is a report of a study that examined the effects of work demands, including employment status, work inflexibility and difficulty reconciling work and family caregiving, on role strain and depressive symptoms of adult-child family caregivers of older people with dementia. Family caregivers also employed for pay are known to be affected by work demands, i.e. excessive workload and time pressures. However, few studies have shown how these work demands and reconciliation between work and family caregiving influence caregivers' role strain and depressive symptoms. For this cross-sectional study, secondary data were analysed for 119 adult-child family caregivers of older people with dementia in Taiwan using hierarchical multiple regression. After adjusting for demographic characteristics, resources and role demands overload, family caregivers with full-time jobs (β=0.25, P<0.01) and more difficulty reconciling work and caregiving roles (β=0.36, P<0.01) reported significantly more role strain than family caregivers working part-time or unemployed. Family caregivers with more work inflexibility reported more depressive symptoms (β=0.29, P<0.05). Work demands affected family caregivers' role strain and depressive symptoms. Working full-time and having more difficulty reconciling work and caregiving roles predicted role strain; work inflexibility predicted depressive symptoms. These results can help clinicians identify high-risk groups for role strain and depression. Nurses need to assess family caregivers for work flexibility when screening for high-risk groups and encourage them to reconcile working with family-care responsibilities to reduce role strain. © 2010 Blackwell Publishing Ltd.

Keeping it in the family: caregiving in Australian-Greek families.

PubMed

Morse, C A; Messimeri-Kianidis, V

2001-01-01

Family-based caregiving refers to the daily provision of help to a co-resident family relative with the usual activities of daily living, custody and protection of a dependent relative at risk of self-injury, and support of a person with physical, developmental and/or mental disability or frailty due to ageing. Many reports from western studies refer to the caregiving burdens, stress and strains. A common view of migrant peoples is that they 'look after their own' to a greater extent than do English-speaking groups and that their closer connections with ethno-specific community organisations and with their extended family networks provides more opportunities for assistance and support so that caregiving is shared and the burdens are reduced. A study was carried out with 300 Australian-Greek families in Melbourne where 150 were providing family-based caregiving, and these were age and gender matched with friends or acquaintances who had no such duties. Most care was provided by women, although almost 20% of carers were men. A wide range of disabilities and illnesses were receiving help and care in the caregiving families among care recipients aged from childhood to advanced old age. Distinct evidence of caregiving burden was found to a significant degree. Gender differences were apparent in the type of disorders managed, in the perceived severity of caregiving duties provided and in the total range of activities engaged in. The ethno-specific community organisations and extended family networks played little part in providing assistance to caregivers which challenges the myths of a close-knit migrant community looking after its own. Qualitative reports of concerns for future caregiving were expressed and the implications for future service needs are discussed.

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

PubMed

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

2014-05-01

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

Family caregivers in rural Uganda: the hidden reality.

PubMed

Kipp, Walter; Tindyebwa, Denis; Rubaale, Tom; Karamagi, Ednah; Bajenja, Ellen

2007-01-01

We conducted 16 in-depth interviews with family caregivers of AIDS patients in three rural districts in western Uganda. They were selected from a client visitation list of the home-based care program for AIDS patients, based on volunteer participation. Family caregivers reported huge problems associated with providing the necessary psychological, social, and economic care. They also said that the physical and emotional demands of caregiving are overwhelming daily challenges. Most support to AIDS patients provided by family, friends, and the churches. The study highlights the great burden of caregivers, in sub-Saharan Africa who most often are elderly women and young girls. This study examine, the burden and related health issues of family caregivers, primarily women, for AIDS patients in Uganda. It was part of a broad research project using qualitative methods on family caregiving in the home environment in sub-Saharan Africa. As the requirements for family care giving are often overwhelming for women under the conditions as they exist in Uganda and in other developing countries, it constitutes a gender issue of great importance that has not been appreciated fully in the international literature. Family caregiving is also of international relevance, as HIV/AIDS is a global pandemic of previously unknown proportions. In many poor countries, family caregiving is the most common and often the only care that AIDS patients receive, because clinic-based care often is not available close to home or is not affordable. Therefore, family caregiver support programs to alleviate this burden are essential for all those countries where HIV/AIDS is prevalent. Family caregiver burden encompasses medical, social, and economic issues at the household level, which requires an interdisciplinary approach in order to fully understand and appreciate the different dimensions of the family caregiver burden and its negative impact on the lives of so many women in so many countries.

Family Relationships and Psychosocial Dysfunction Among Family Caregivers of Patients With Advanced Cancer.

PubMed

Nissen, Kathrine G; Trevino, Kelly; Lange, Theis; Prigerson, Holly G

2016-12-01

Caring for a family member with advanced cancer strains family caregivers. Classification of family types has been shown to identify patients at risk of poor psychosocial function. However, little is known about how family relationships affect caregiver psychosocial function. To investigate family types identified by a cluster analysis and to examine the reproducibility of cluster analyses. We also sought to examine the relationship between family types and caregivers' psychosocial function. Data from 622 caregivers of advanced cancer patients (part of the Coping with Cancer Study) were analyzed using Gaussian Mixture Modeling as the primary method to identify family types based on the Family Relationship Index questionnaire. We then examined the relationship between family type and caregiver quality of life (Medical Outcome Survey Short Form), social support (Interpersonal Support Evaluation List), and perceived caregiver burden (Caregiving Burden Scale). Three family types emerged: low-expressive, detached, and supportive. Analyses of variance with post hoc comparisons showed that caregivers of detached and low-expressive family types experienced lower levels of quality of life and perceived social support in comparison to supportive family types. The study identified supportive, low-expressive, and detached family types among caregivers of advanced cancer patients. The supportive family type was associated with the best outcomes and detached with the worst. These findings indicate that family function is related to psychosocial function of caregivers of advanced cancer patients. Therefore, paying attention to family support and family members' ability to share feelings and manage conflicts may serve as an important tool to improve psychosocial function in families affected by cancer. Copyright © 2016 American Academy of Hospice and Palliative Medicine. All rights reserved.

Family resources study: part 1: family resources, family function and caregiver strain in childhood cancer

PubMed Central

2011-01-01

Background Severe illness can disrupt family life, cause family dysfunction, strain resources, and cause caregiver burden. The family's ability to cope with crises depends on their resources. This study sought to assess families of children with cancer in terms of family function-dysfunction, family caregiver strain and the adequacy of family resources using a new family resources assessment instrument. Methods This is a cross-sectional study involving 90 Filipino family caregivers of children undergoing cancer treatment. This used a self-administered questionnaire composed of a new 12-item family resources questionnaire (SCREEM-RES) based on the SCREEM method of analysis, Family APGAR to assess family function-dysfunction; and Modified Caregiver Strain Index to assess strain in caring for the patient. Results More than half of families were either moderately or severely dysfunctional. Close to half of caregivers were either predisposed to strain or experienced severe strain, majority disclosed that their families have inadequate economic resources; many also report inaccessibility to medical help in the community and insufficient educational resources to understand and care for their patients. Resources most often reported as adequate were: family's faith and religion; help from within the family and from health providers. SCREEM-RES showed to be reliable with Cronbach's alpha of 0.80. There is good inter-item correlation between items in each domain: 0.24-0.70. Internal consistency reliability for each domain was also good: 0.40-0.92. Using 2-point scoring system, Cronbach's alpha were slightly lower: full scale (0.70) and for each domain 0.26-.82. Results showed evidence of association between family resources and family function based on the family APGAR but none between family resources and caregiver strain and between family function and caregiver strain. Conclusion Many Filipino families of children with cancer have inadequate resources, especially economic

Family resources study: part 1: family resources, family function and caregiver strain in childhood cancer.

PubMed

Panganiban-Corales, Avegeille T; Medina, Manuel F

2011-10-31

Severe illness can disrupt family life, cause family dysfunction, strain resources, and cause caregiver burden. The family's ability to cope with crises depends on their resources. This study sought to assess families of children with cancer in terms of family function-dysfunction, family caregiver strain and the adequacy of family resources using a new family resources assessment instrument. This is a cross-sectional study involving 90 Filipino family caregivers of children undergoing cancer treatment. This used a self-administered questionnaire composed of a new 12-item family resources questionnaire (SCREEM-RES) based on the SCREEM method of analysis, Family APGAR to assess family function-dysfunction; and Modified Caregiver Strain Index to assess strain in caring for the patient. More than half of families were either moderately or severely dysfunctional. Close to half of caregivers were either predisposed to strain or experienced severe strain, majority disclosed that their families have inadequate economic resources; many also report inaccessibility to medical help in the community and insufficient educational resources to understand and care for their patients. Resources most often reported as adequate were: family's faith and religion; help from within the family and from health providers. SCREEM-RES showed to be reliable with Cronbach's alpha of 0.80. There is good inter-item correlation between items in each domain: 0.24-0.70. Internal consistency reliability for each domain was also good: 0.40-0.92. Using 2-point scoring system, Cronbach's alpha were slightly lower: full scale (0.70) and for each domain 0.26-.82. Results showed evidence of association between family resources and family function based on the family APGAR but none between family resources and caregiver strain and between family function and caregiver strain. Many Filipino families of children with cancer have inadequate resources, especially economic; and are moderately or severely

3 CFR 8900 - Proclamation 8900 of November 1, 2012. National Family Caregivers Month, 2012

Code of Federal Regulations, 2013 CFR

2013-01-01

... caregivers to the ones they love even as they navigate their own health challenges. Mothers and fathers... stability to those they love. Family caregivers have an immeasurable impact on the lives of those they...

Family Caregivers and Consumer Health Information Technology.

PubMed

Wolff, Jennifer L; Darer, Jonathan D; Larsen, Kevin L

2016-01-01

Health information technology has been embraced as a strategy to facilitate patients' access to their health information and engagement in care. However, not all patients are able to access, or are capable of using, a computer or mobile device. Although family caregivers assist individuals with some of the most challenging and costly health needs, their role in health information technology is largely undefined and poorly understood. This perspective discusses challenges and opportunities of engaging family caregivers through the use of consumer-oriented health information technology. We compile existing evidence to make the case that involving family caregivers in health information technology as desired by patients is technically feasible and consistent with the principles of patient-centered and family-centered care. We discuss how more explicit and purposeful engagement of family caregivers in health information technology could advance clinical quality and patient safety by increasing the transparency, accuracy, and comprehensiveness of patient health information across settings of care. Finally, we describe how clarifying and executing patients' desires to involve family members or friends through health information technology would provide family caregivers greater legitimacy, convenience, and timeliness in health system interactions, and facilitate stronger partnerships between patients, family caregivers, and health care professionals.

Teaching Family Caregivers to Assist Safely with Mobility.

PubMed

Powell-Cope, Gail; Pippins, Karla M; Young, Heather M

2017-12-01

: This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home.The articles in this new installment of the series explain principles for promoting safe mobility that nurses should reinforce with family caregivers. Each article also includes an informational tear sheet-Information for Family Caregivers-that contains links to instructional videos. To use this series, nurses should read the article first, so they understand how best to help family caregivers, and then encourage the caregivers to watch the videos and ask questions. For additional information, see Resources for Nurses.

Family caregiver learning--how family caregivers learn to provide care at the end of life: a qualitative secondary analysis of four datasets.

PubMed

Stajduhar, Kelli I; Funk, Laura; Outcalt, Linda

2013-07-01

Family caregivers are assuming growing responsibilities in providing care to dying family members. Supporting them is fundamental to ensure quality end-of-life care and to buffer potentially negative outcomes, although family caregivers frequently acknowledge a deficiency of information, knowledge, and skills necessary to assume the tasks involved in this care. The aim of this inquiry was to explore how family caregivers describe learning to provide care to palliative patients. Secondary analysis of data from four qualitative studies (n = 156) with family caregivers of dying people. Data included qualitative interviews with 156 family caregivers of dying people. Family caregivers learn through the following processes: trial and error, actively seeking needed information and guidance, applying knowledge and skills from previous experience, and reflecting on their current experiences. Caregivers generally preferred and appreciated a supported or guided learning process that involved being shown or told by others, usually learning reactively after a crisis. Findings inform areas for future research to identify effective, individualized programs and interventions to support positive learning experiences for family caregivers of dying people.

Aging Family Caregivers: Policies and Practices

ERIC Educational Resources Information Center

Heller, Tamar; Caldwell, Joe; Factor, Alan

2007-01-01

This review examines later life family support for adults with developmental disabilities from a life course perspective that takes into account social trends and changes in service patterns and in attitudes of families. Key issues addressed include: (1) trends affecting family caregiving, (2) health and social outcomes of life-long caregiving,…

The psychological well-being of disability caregivers: examining the roles of family strain, family-to-work conflict, and perceived supervisor support.

PubMed

Li, Andrew; Shaffer, Jonathan; Bagger, Jessica

2015-01-01

We draw on the cross-domain model of work-family conflict and conservation of resources theory to examine the relationship between disability caregiving demands and the psychological well-being of employed caregivers. Using a sample of employed disability caregivers from a national survey, we found that the relationship between caregiving demands and family-to-work conflict was stronger when employees experienced high levels of strain from family. Additionally, we found high levels of family to-work conflict were subsequently associated with decreases in life satisfaction and increases in depression, but only when perceived supervisor support was low. Overall, our findings suggest an indirect relationship between caregiving demands and psychological well-being that is mediated by family-to-work conflict and is conditional on family strain and perceived supervisor support. The theoretical and practical implications of these findings are discussed. PsycINFO Database Record (c) 2014 APA, all rights reserved.

Family Caregiver Factors Associated with Unmet Needs for Care of Older Adults.

PubMed

Beach, Scott R; Schulz, Richard

2017-03-01

To examine caregiver factors associated with unmet needs for care of older adults. Population-based surveys of caregivers and older adult care recipients in the United States in 2011. 2011 National Health and Aging Trends Study and National Study of Caregiving. Family caregivers (n = 1,996) of community-dwelling older adults with disabilities (n = 1,366). Disabled care recipient reports of unmet needs for care in the past month with activities of daily living (ADLs; e.g., wet or soiled clothing), mobility (e.g., have to stay inside), or instrumental activities of daily living (IADLs; e.g., medication errors). Caregiver reported sociodemographic characteristics, caregiving intensity and tasks performed, health, and psychosocial effects. Of the care recipients, 44.3% reported at least one unmet need for care in the past month (38.2% ADL related, 14.6% IADL related). Younger caregivers, caregiving sons, caregivers not living with care recipients, and having supplemental paid caregivers were associated with more unmet needs. Caregivers with recipients reporting two or more unmet needs were more likely to spend more than 100 hours per month caregiving, help with skin care and wounds, report caregiving as emotionally and physically difficult, and report restricted participation in valued activities (all P < .001). Unmet ADL needs are prevalent among older adults with family caregivers. Caregivers experiencing high levels of burden, stress, and negative physical and psychosocial impacts may provide substandard or poor care to older adults, which may be a risk factor for neglect. Clinicians caring for disabled older adults should assess their unmet needs and the capacity of caregivers to address them. © 2016, Copyright the Authors Journal compilation © 2016, The American Geriatrics Society.

Family Caregiver Role and Burden Related to Gender and Family Relationships

PubMed Central

Friedemann, Marie-Luise; Buckwalter, Kathleen C.

2015-01-01

This study described and contrasted family caregivers and explored the effect of gender and family relationship on the caregiver’s role perception, workload, burden, and family help. Home care agencies and community organizations assisted with the recruitment of 533 multicultural, predominantly Latino caregivers who were interviewed at home. The Caregiver Identity Theory guided the study. Survey instruments were standardized tools or were constructed and pretested for this study. Descriptive statistics and t-test analyses assisted in describing the sample and multivariate analyses were used to contrast the caregiver groups. Findings suggested a gendered approach to self-appraisal and coping. Men in this predominantly Latino and Caribbean sample felt less burden and depression than women who believed caregiving is a female duty. Family nurses should pay attention to the most vulnerable groups: older spouses resistant to using family and community resources and hard-working female adult children, and assess each family situation individually. PMID:24777069

Family Caregivers: Psychosocial Impacts and Clinical Needs

ERIC Educational Resources Information Center

Daire, Andrew P.; Torres, Jennifer; Edwards, Nivischi N.

2009-01-01

The authors describe how 3 groups of family caregivers (spouses, daughters, and sons) are affected by the caregiving role. In addition, clinical considerations and interventions for mental health professionals working with these different groups of family caregivers are discussed. A clinical case example is also presented. (Contains 2 tables.)

Workplace characteristics and work-to-family conflict: does caregiving frequency matter?

PubMed

Brown, Melissa; Pitt-Catsouphes, Marcie

2013-01-01

Many workers can expect to provide care to an elder relative at some point during their tenure in the workforce. This study extends previous research by exploring whether caregiving frequency (providing care on a regular, weekly basis vs. intermittently) moderates the relationship between certain workplace characteristics and work-to-family conflict. Utilizing a sample of 465 respondents from the National Study of the Changing Workforce (Families and Work Institute, 2008), results indicate that access to workplace flexibility has a stronger effect on reducing work-to-family conflict among intermittent caregivers than among those who provide care regularly.

Perceptions of family caregivers of cancer patients about the challenges of caregiving: a qualitative study.

PubMed

Nemati, Shahnaz; Rassouli, Maryam; Ilkhani, Mahnaz; Baghestani, Ahmad Reza

2018-03-01

The experience of caring for a family member with cancer is associated with several care-related problems and challenges for the caregiver. The comprehensive and in-depth understanding of the trials and tribulations of caregiving can be a step towards resolving the problems faced by family caregivers of these patients. The present study aimed to explore challenges faced by Iranian family caregivers of cancer patients. The present qualitative study was conducted through in-depth semi-structured interviews held with 21 family caregivers of cancer patients selected through purposive sampling. Interviews continued until saturation of data. All interviews were recorded, transcribed and analysed through conventional content analysis. The codes extracted from interviews produced four main themes, including 'confusion', 'uncertainty', 'disintegration' and 'setback', which collectively caused suffering for family caregivers. Care provided in an atmosphere of suffering and discontent diminishes caregiver's quality of life and quality of patient care. Health planners should therefore consider the challenges and sufferings faced by family caregivers and should seek to obviate them through appropriate plans. © 2017 Nordic College of Caring Science.

Family Caregivers and Leisure: An Oxymoron?

ERIC Educational Resources Information Center

Bedini, Leandra A.

2002-01-01

Describes recent research findings which verify that the loss of leisure for caregivers relates to stress and health problems, discussing what parks and recreation professionals can do to help family caregivers lead balanced lives and examining psychological and physical effects of caregiving, caregivers' lack of leisure, the relationship between…

Assessing Impact on Family Caregivers to Alzheimer's Disease Patients.

ERIC Educational Resources Information Center

Talkington-Boyer, Shannon; Snyder, Douglas K.

1994-01-01

Examined impact of caregiving among 110 caregivers to aging family member with Alzheimer's disease. Family caregivers' appraisals along dimensions of subjective burden, negative impact, caregiving satisfaction, and caregiver mastery were correlated with extent of memory and behavior problems of patient and caregivers' coping style, locus of…

The Caregiving Experience in a Racially Diverse Sample of Cancer Family Caregivers

PubMed Central

Siefert, Mary Lou; Williams, Anna-leila; Dowd, Michael F.; Chappel-Aiken, Lolita; McCorkle, Ruth

2009-01-01

The literature supports a variety of predictor variables to account for the psychological and stress burden experienced by cancer family caregivers. Missing among the predictor variables are the differences by or influence of race/ethnicity. The purpose of this study was to describe the sample, explore differences in outcomes by patient and family caregiver characteristics, and determine if any of the patient and family characteristics, including race/ethnicity, predicted outcomes. Cross-sectional surveys were used to determine sociodemographics, psychological and physical health, and burdens of caregiving among 54 caregivers. The analysis consisted of descriptive methods, including frequencies and t tests, and regression modeling. The sample was 35% African American or Hispanic. African American and Hispanic caregivers were younger than white caregivers and more often women, were rarely the spouse of the patient, and frequently had other dependents, including children and older parents. African American and Hispanic caregivers reported lower incomes and more burden related to finances and employment than did white caregivers. When controlling for sociodemographic factors, there was no difference by race/ethnicity on the outcome measures. The experience of caregiving may supersede race/ethnicity and may be its own cultural entity. Areas of concern include the interrelationship between socioeconomic status and race/ethnicity, the absence of cultural frameworks to direct caregiver research, and the question of cultural relevance of measurement tools. PMID:18772665

Advancing Care for Family Caregivers of persons with dementia through caregiver and community partnerships.

PubMed

White, Carole L; Overbaugh, Kristen J; Pickering, Carolyn E Z; Piernik-Yoder, Bridgett; James, Debbie; Patel, Darpan I; Puga, Frank; Ford, Lark; Cleveland, James

2018-01-01

There are currently 15 million Americans who provide over 80% of the care required by their family members with Alzheimer's disease and other dementias. Yet care for caregivers continues to be fragmented and few evidence-based interventions have been translated into routine clinical care and therefore remain inaccessible to most family caregivers. To address this gap, the Caring for the Caregiver program is being developed at UT Health San Antonio, School of Nursing to improve support services and health outcomes for family caregivers. Our purpose is to describe the engagement process undertaken to assess caregiver and community needs and how findings are informing program development. We are using a model of public engagement that consists of communication of information, collection of information from stakeholders, and collaboration where stakeholders are partners in an exchange of information to guide program activities. An assessment of the community was undertaken to identify resources/services for family caregivers. Subsequently, stakeholders were invited to a community-academic forum to discuss strategies to build on existing strengths for family caregiving and to identify gaps in care. Detailed notes were taken and all discussions were recorded and transcribed for analysis. Data were analyzed using thematic content analysis. We conducted site visits with 15 community agencies, interviewed 13 family caregivers, and attended community events including support groups and health and senior fairs. Fifty-three diverse stakeholders attended the community-academic forum. Participants identified existing assets within our community to support family caregivers. Consistent among groups was the need to increase awareness in our community about family caregivers. Themes identified from the discussion were: making the invisible visible, you don't know what you don't know, learning too late, and anticipating and preparing for the future. Incorporating caregiver and

Seeking Medical Information Using Mobile Apps and the Internet: Are Family Caregivers Different from the General Public?

PubMed

Kim, Hyunmin; Paige Powell, M; Bhuyan, Soumitra S; Bhuyan, Soumitra Sudip

2017-03-01

Family caregivers play an important role to care cancer patients since they exchange medical information with health care providers. However, relatively little is known about how family caregivers seek medical information using mobile apps and the Internet. We examined factors associated with medical information seeking by using mobile apps and the Internet among family caregivers and the general public using data from the 2014 Health Information National Trends Survey 4 Cycle 1. The study sample consisted of 2425 family caregivers and 1252 non-family caregivers (the general public). Guided by Comprehensive Model of Information Seeking (CMIS), we examined related factors' impact on two outcome variables for medical information seeking: mobile apps use and Internet use with multivariate logistic regression analyses. We found that online medical information seeking is different between family caregivers and the general public. Overall, the use of the Internet for medical information seeking is more common among family caregivers, while the use of mobile apps is less common among family caregivers compared with the general public. Married family caregivers were less likely to use mobile apps, while family caregivers who would trust cancer information were more likely to use the Internet for medical information seeking as compared to the general public. Medical information seeking behavior among family caregivers can be an important predictor of both their health and the health of their cancer patients. Future research should explore the low usage of mobile health applications among family caregiver population.

Burden and associated pathologies in family caregivers of Alzheimer’s disease patients in Spain

PubMed Central

Cotelo, Natalia Vérez; Rodríguez, N. Floro Andrés; PÉREZ, José A. Fornos; Iglesias, J. Carlos Andrés; Lago, Marcos Ríos

2014-01-01

Objectives: To evaluate the profile of family caregivers of Alzheimer’s disease patients, identify any signs of psychopathology, quantify the level of perceived burden on the caregiver, and determine the caregiver’s relationship with their pharmacist. Methods: A cross-sectional study was conducted at a community pharmacy in Pontevedra, Spain. Demographic variables were collected, and the following questionnaires were administered: the Beck Depression Inventory-II, STAI-Anxiety Questionnaire, Zarit Burden Scale, family APGAR scale, and the Duke-UNC questionnaire. Results: The typical caregiver profile consists of a 55-year old first degree relative (mostly daughters) with a primary education who belongs to a functional or mildly dysfunctional family. Nearly one quarter (24%) of caregivers had a high perception of burden, with anxiety in 20% of caregivers and symptoms of depression in 20%. Family caregivers usually went to the same pharmacy as the patients (96%), were treated with psychotropic drugs (68%), and interacted with the pharmacist (92%). Conclusion: This study confirmed that psychological distress and burden is present among family caregivers. Care for caregivers should be integrated into patient care as part of a national plan, including grants and subsidies, which will result in better care of Alzheimer’s patients. Pharmacists are the most accessible health care professionals and can provide information about Alzheimer’s disease management to caregivers to ease the burden of care. PMID:26131040

Caregiving for Dementia in Family Members: Caregiving Burden and Prospects for Effective Intervention.

ERIC Educational Resources Information Center

Maiden, Robert J.; And Others

Caring for a family member with dementia is a major source of stress for the caregiver. To assess the impact of caring for an impaired family member and to evaluate the effectiveness of intervention programs, 34 caregivers of relatives with dementia completed an amended form of the Philadelphia Geriatric Center's Caregiver Survey and two…

Clinical Assessment of Family Caregivers in Dementia.

ERIC Educational Resources Information Center

Rankin, Eric D.; And Others

1992-01-01

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

Factors Associated With Higher Caregiver Burden Among Family Caregivers of Elderly Cancer Patients: A Systematic Review.

PubMed

Ge, Lixia; Mordiffi, Siti Zubaidah

Caring for elderly cancer patients may cause multidimensional burden on family caregivers. Recognition of factors associated with caregiver burden is important for providing proactive support to caregivers at risk. The aim of this study was to identify factors associated with high caregiver burden among family caregivers of elderly cancer patients. A systematic search of 7 electronic databases was conducted from database inception to October 2014. The identified studies were screened, and full text was further assessed. The quality of included studies was assessed using a checklist, and relevant data were extracted using a predeveloped data extraction form. Best-evidence synthesis model was used for data synthesis. The search yielded a total of 3339 studies, and 7 studies involving 1233 family caregivers were included after screening and full assessment of 116 studies. Moderate evidence supported that younger caregivers, solid tumors, and assistance with patient's activities of daily living were significantly associated with high caregiver burden. Eighteen factors were supported by limited evidence, and 1 was a conflicting factor. The scientific literature to date proved that caregiver burden was commonly experienced by family caregivers of elderly cancer patients. The evidence indicated that family caregivers who were at younger age, caring for solid tumor patients, and providing assistance with patient's activities of daily living reported high caregiver burden. The data provide evidence in identifying family caregivers at high risk of high caregiver burden. More high-quality studies are needed to clarify and determine the estimates of the effects of individual factors.

Family caregivers of patients with frontotemporal dementia: An integrative review.

PubMed

Caceres, Billy A; Frank, Mayu O; Jun, Jin; Martelly, Melissa T; Sadarangani, Tina; de Sales, Paloma Cesar

2016-03-01

The purpose of this integrative review is to: (1) identify the characteristics of family caregivers of patients with frontotemporal dementia, (2) explore the impact of providing care on family caregivers' health and well-being, and (3) identify coping strategies used by family caregivers. Frontotemporal dementia is thought to be the second most common form of dementia after Alzheimer's disease. Family caregivers of patients with frontotemporal dementia face unique challenges due to its early onset, behavioral symptoms, and slow progression of decline. However, there is a dearth of research evaluating the health and wellbeing of family caregivers of patients with frontotemporal dementia. An integrative review was conducted using the Whittemore and Knafl methodology. An electronic search of the literature was conducted using four electronic databases: PubMed, Embase, CINAHL, and Web of Science. The Crowe Critical Appraisal tool was used to evaluate the quality of the selected articles. Findings of 11 articles informed this integrative review. Family caregivers of patients with frontotemporal dementia identify behavioral disturbances as most troubling. Spouses and female caregivers experience greater caregiver burden, distress, increased rates of depression, as well as decreased sleep related to behavior disturbances. Though less explored, providing care to those with behavioral disturbances may also impact caregiver physical health. Additionally, female caregivers are most likely to employ coping strategies, most commonly, adaptation and reframing. Effective interventions to reduce family caregiver burden are poorly understood but family caregivers suggest education and internet-based support groups are most helpful. Family caregivers of patients with frontotemporal dementia experience significant distress, which impacts their health and wellbeing. It is important for healthcare providers who care for patients with frontotemporal dementia to recognize the unique

Influence of family dynamics on burden among family caregivers in aging Japan

PubMed Central

Kusaba, Tesshu; Sato, Kotaro; Fukuma, Shingo; Yamada, Yukari; Matsui, Yoshinori; Matsuda, Satoshi; Ando, Takashi; Sakushima, Ken; Fukuhara, Shunichi

2016-01-01

Background. Long-term care for the elderly is largely shouldered by their family, representing a serious burden in a hyper-aging society. However, although family dynamics are known to play an important role in such care, the influence of caring for the elderly on burden among caregiving family members is poorly understood. Objective. To examine the influence of family dynamics on burden experienced by family caregivers. Methods. We conducted a cross-sectional study at six primary care clinics, involving 199 caregivers of adult care receivers who need long-term care. Participants were divided into three groups based on tertile of Index of Family Dynamics for Long-term Care (IF-Long score), where higher scores imply poorer relationships between care receivers and caregiving family: best, <2; intermediate, 2 to <5; worst, ≥5. The mean differences in burden index of caregivers (BIC-11) between the three groups were estimated by linear regression model with adjustment for care receiver’s activity of daily living and cognitive function. Results. Mean age of caregivers was 63.2 years (with 40.7% aged ≥ 65 years). BIC-11 scores were higher in the worst IF-Long group (adjusted mean difference: 4.4, 95% confidence interval: 1.2 to 7.5) than in the best IF-Long group. We also detected a positive trend between IF-Long score and BIC-11 score (P-value for trend <0.01). Conclusion. Our findings indicate that family dynamics strongly influences burden experienced by caregiving family members, regardless of the care receiver’s degree of cognitive impairment. These results underscore the importance of evaluating relationships between care receivers and their caregivers when discussing a care regimen for care receivers. PMID:27450988

Family, community and government: the value and the limits of local caregiving.

PubMed

Pilisuk, M

1986-01-01

More frail elderly, more seriously disabled infants, and more chronically ill persons are part of the contemporary health delivery scene than in times past. Their prime caregivers are family members, most frequently women, whose contribution is limited by the facts of geographic distance, competing pressures, and smaller families to share the burden. Added to the caregiving task are the special needs of individuals at stressful points, which, if unmet, increase the incidence of breakdowns. The support of families is often augmented by local services and by mutual help groups, but the need has far surpassed the resources now, and this has resulted in some unhealthy local competition. The caregiving issue is a matter of national priorities that cannot be solved without a shift from military to domestic spending.

The relationship between family obligation and religiosity on caregiving.

PubMed

Epps, Fayron

2014-01-01

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

Family Caregiver Identity: A Literature Review

ERIC Educational Resources Information Center

Eifert, Elise K.; Adams, Rebecca; Dudley, William; Perko, Michael

2015-01-01

Background: Despite the multitude of available resources, family caregivers of those with chronic disease continually underutilize support services to cope with the demands of caregiving. Several studies have linked self-identification as a caregiver to the increased likelihood of support service use. Purpose: The present study reviewed the…

Impact of Family Conflict on Adult Child Caregivers.

ERIC Educational Resources Information Center

Strawbridge, William J.; Wallhagen, Margaret I.

1991-01-01

In study of 100 adult child caregivers, 40 percent were experiencing conflict with another family member, usually sibling. Most conflict arose because relative failed to provide sufficient help. Caregivers experiencing family conflict had significantly higher perceived burden and poorer mental health than did caregivers without conflict.…

Certified Nursing Assistants Balancing Family Caregiving Roles: Health Care Utilization Among Double- and Triple-Duty Caregivers

PubMed Central

DePasquale, Nicole; Bangerter, Lauren R.; Williams, Jessica; Almeida, David M.

2016-01-01

Purpose of the Study: This study examines how certified nursing assistants (CNAs) balancing family caregiving roles—child care (double-duty child caregivers), elder care (double-duty elder caregivers), and both child and elder care (triple-duty caregivers)—utilize health care services relative to nonfamily caregiving counterparts (formal-only caregivers). Design and Methods: A sample of 884 CNAs from the Work, Family and Health Study was drawn on to assess the number of acute care (i.e., emergency room or urgent care facility) and other health care (i.e., outpatient treatment or counseling) visits made during the past 6 months. Results: Double-duty elder and triple-duty caregivers had higher acute care utilization rates than formal-only caregivers. CNAs with and without family caregiving roles had similar rates of other health care visits. Implications: CNAs providing informal care for older adults have higher acute care visit rates. Given the increasing need for family caregivers and the vital importance of the health of the nursing workforce for the health of others, future research on how double- and triple-duty caregivers maintain their health amidst constant caregiving should be a priority. PMID:26224763

Family caregiving or caregiving alone: who helps the helper?

PubMed

Sims-Gould, Joanie; Martin-Matthews, Anne

2007-01-01

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

Family caregivers, patients and physicians: ethical guidance to optimize relationships.

PubMed

Mitnick, Sheryl; Leffler, Cathy; Hood, Virginia L

2010-03-01

Family caregivers play a major role in maximizing the health and quality of life of more than 30 million individuals with acute and chronic illness. Patients depend on family caregivers for assistance with daily activities, managing complex care, navigating the health care system, and communicating with health care professionals. Physical, emotional and financial stress may increase caregiver vulnerability to injury and illness. Geographically distant family caregivers and health professionals in the role of family caregivers may suffer additional burdens. Physician recognition of the value of the caregiver role may contribute to a positive caregiving experience and decrease rates of patient hospitalization and institutionalization. However, physicians may face ethical challenges in partnering with patients and family caregivers while preserving the primacy of the patient-physician relationship. The American College of Physicians in conjunction with ten other professional societies offers ethical guidance to physicians in developing mutually supportive patient-physician-caregiver relationships.

Influence of caregiver personality on the burden of family caregivers of terminally ill cancer patients.

PubMed

Kim, Ha-Hyun; Kim, Seon-Young; Kim, Jae-Min; Kim, Sung-Wan; Shin, Il-Seon; Shim, Hyun-Jeong; Hwang, Jun-Eul; Chung, Ik-Joo; Yoon, Jin-Sang

2016-02-01

To determine the influence of caregiver personality and other factors on the burden of family caregivers of terminally ill cancer patients. We investigated a wide range of factors related to the patient-family caregiver dyad in a palliative care setting using a cross-sectional design. Caregiver burden was assessed using the seven-item short version of the Zarit Burden Interview (ZBI-7). Caregiver personality was assessed using the 10-item short version of the Big Five Inventory (BFI-10), which measures the following five personality dimensions: extroversion, agreeableness, conscientiousness, neuroticism, and openness. Patient- and caregiver-related sociodemographic and psychological factors were included in the analysis because of their potential association with caregiver burden. Clinical patient data were obtained from medical charts or by using other measures. Multivariate linear regression analysis was performed to identify the independent factors associated with caregiver burden. We analyzed 227 patient-family caregiver dyads. The multivariate analysis revealed that caregiver extroversion was protective against caregiver burden, whereas depressive symptoms in caregivers were related to increased burden. Neuroticism was positively correlated with caregiver burden, but this relationship was nonsignificant following adjustment for depressive symptoms. Patient-related factors were not significantly associated with caregiver burden. Evaluating caregiver personality traits could facilitate identification of individuals at greater risk of high burden. Furthermore, depression screening and treatment programs for caregivers in palliative care settings are required to decrease caregiver burden.

Family Dynamics and Personal Strengths among Dementia Caregivers in Argentina

PubMed Central

Elnasseh, Aaliah G.; Trujillo, Michael A.; Peralta, Silvina Victoria; Stolfi, Miriam E.; Morelli, Eliana; Perrin, Paul B.

2016-01-01

This study examined whether healthier family dynamics were associated with higher personal strengths of resilience, sense of coherence, and optimism among dementia caregivers in Argentina. Caregivers are usually required to assist individuals with dementia, and family members have typically fulfilled that role. Personal strengths such as resilience, sense of coherence, and optimism have been shown to protect caregivers from some of the negative experiences of providing care, though the family-related variables associated with these personal strengths are largely unknown. Hierarchical multiple regressions investigated the extent to which family dynamics variables are associated with each of the caregiver personal strengths after controlling for demographic and caregiver characteristics. A sample of 105 caregivers from Argentina completed a set of questionnaires during a neurologist visit. Family dynamics explained 32% of the variance in resilience and 39% of the variance in sense of coherence. Greater family empathy and decreased family problems were uniquely associated with higher resilience. Greater communication and decreased family problems were uniquely associated with higher sense of coherence. Optimism was not found to be significantly associated with family dynamics. These results suggest that caregiver intervention research focused on the family may help improve caregiver personal strengths in Argentina and other Latin American countries. PMID:27413574

Using Narrative Approach for Anticipatory Grief Among Family Caregivers at Home

PubMed Central

Toyama, Hiroko; Honda, Akiko

2016-01-01

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

American Indian family caregivers' experiences with helping elders.

PubMed

Jervis, Lori L; Boland, Mathew E; Fickenscher, Alexandra

2010-12-01

In recent years, a vast literature has accumulated on the negative effects on family caregivers of providing care to elders, while relatively little research has explored caregiving as a positive experience. Only a handful of studies have examined any aspect of informal caregiving among American Indians. This mixed methods study explores the negative and positive aspects of providing elder care among 19 northern plains American Indian family members. These caregivers described low levels of burden and high levels of reward, attributable to cultural attitudes toward elders and caregiving, collective care provision, strong reciprocal relationships with elders, enjoyment of elders, and relatively low levels of care provision. Caregiving manifested as part of a complex exchange of assistance rather than a unidirectional provision of assistance from the family member to the elder. That caregiving emerged as such an overwhelmingly positive experience in a community faced with poverty, alcohol disorders, trauma, and cultural traumatization is testimony to the important roles that elders often continue to play in these communities.

Certified Nursing Assistants Balancing Family Caregiving Roles: Health Care Utilization Among Double- and Triple-Duty Caregivers.

PubMed

DePasquale, Nicole; Bangerter, Lauren R; Williams, Jessica; Almeida, David M

2016-12-01

This study examines how certified nursing assistants (CNAs) balancing family caregiving roles-child care (double-duty child caregivers), elder care (double-duty elder caregivers), and both child and elder care (triple-duty caregivers)-utilize health care services relative to nonfamily caregiving counterparts (formal-only caregivers). A sample of 884 CNAs from the Work, Family and Health Study was drawn on to assess the number of acute care (i.e., emergency room or urgent care facility) and other health care (i.e., outpatient treatment or counseling) visits made during the past 6 months. Double-duty elder and triple-duty caregivers had higher acute care utilization rates than formal-only caregivers. CNAs with and without family caregiving roles had similar rates of other health care visits. CNAs providing informal care for older adults have higher acute care visit rates. Given the increasing need for family caregivers and the vital importance of the health of the nursing workforce for the health of others, future research on how double- and triple-duty caregivers maintain their health amidst constant caregiving should be a priority. © The Author 2015. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Communication Coaching: A Case Study of Family Caregiver Burden.

PubMed

Wittenberg, Elaine; Ferrell, Betty; Koczywas, Marianna; Ferraro, Catherine

2017-04-01

Problematic communication among providers, patients, and their family members can affect the quality of patient care, causing stress to all parties involved and decreased opportunities for collaborative decision making.
. The purpose of this article is to present one case from a pilot study of a family caregiver intervention focused on communication. 
. The nurse-delivered communication intervention includes a written communication guide for family caregivers, as well as a one-time nurse communication coaching call. The call is aimed at identifying caregiver communication concerns, providing communication education, and role playing problematic communication.
. Psychological distress and caregiver confidence in communication were improved for the caregiver. Data presented from the case study demonstrate the need for family caregiver communication support and training and the potential benefits of such training.

[Predictors of competence in family caregivers of dementia patients].

PubMed

Chang, Tzu-Chung; Shyu, Yea-Ing Lotus; Chen, Min-Chi; Chiu, Yi-Chen; Huang, Huei-Ling

2012-12-01

Differences in dementia symptoms at different dementia stages increase the burden of caregiving. The inability of family caregivers to meet patient needs not only influences the health of the patient, but also impacts negatively on their personal physical and mental health. This study explores predictors of competence in family caregivers of dementia patients. We designed a cross-sectional study to examine 123 participant groups. Each group included one individual diagnosed with dementia and one family caregiver. Predictors of caregiver competence included few / no caregiver chronic diseases, relatively high level of caregiver education, and lack of comorbidities in the care recipient. These predictors explained 26.7% of total variance. We recommend that nurses evaluate caregivers' care competency in order to provide appropriate health information and assistance. Guidance provided should take into consideration the caregivers' educational background. Apart from providing information related to dementia behavior, nurses should also provide caregiver guidance information related to the effects of comorbidities on dementia, as appropriate.

Perceived Stress in Family Caregivers of Individuals With Mental Illness.

PubMed

Masa'Deh, Rami

2017-06-01

The current study aimed to measure the stress levels of family caregivers of individuals with mental illness and compare their stress levels according to the diagnosis and other sociodemographic characteristics. The sample comprised 310 family caregivers of individuals with mental illness in Jordan. Family caregivers completed a demographic checklist and the Arabic version of the Perceived Stress Scale 10-Item (PSS-10) questionnaire. A significant difference was found in PSS-10 levels among family caregivers according to gender, diagnosis of their family member, and time since diagnosis. Female caregivers reported significantly higher stress levels than male caregivers. Family members of individuals with schizophrenia reported the highest stress levels (p < 0.001). Results also indicated that there was a significant negative correlation between PSS-10 levels of family caregivers and time since diagnosis. Investigating stress levels in family members of individuals with mental illness may be helpful when designing interventions to reduce such stress. [Journal of Psychosocial Nursing and Mental Health Services, 55(6), 30-35.]. Copyright 2017, SLACK Incorporated.

The experiences of family caregiving in a chronic care unit.

PubMed

Cho, Myung Ok

2005-12-01

The main purpose of this critical ethnography was to examines the process and discourses through which family caregivers experience while caring for their sick family member in a hospital. This was achieved by conducting in-depth interviews with 12 family caregivers, and by observing their caring activities and daily lives in natural settings. The study field was a unit for neurologic patients. Data was analyzed using taxonomy, discourse analysis, and proxemics. All research work was iteratively processed from March 2003 to December 2004. Constant comparative analysis of the data yielded the process of becoming a successful family caregiver: encountering the differences and chaos as novice; constructing their world of skilled caregivers; and becoming a hospital family as experienced caregivers. During the process of becoming an experienced hospital family, the discourse of family centered idea guided their caring behaviors and daily lives. The paternalistic family caregivers struggled, cooperated, and harmonized with the patriarchal world of professional health care system. During this process of becoming hospital family, professional nurses must act as cultural brokers between the lay family caring system and the professional caring system.

The Relationship between Mastery and Depression among Japanese Family Caregivers

ERIC Educational Resources Information Center

Schreiner, Andrea S.; Morimoto, Tomoko

2003-01-01

The present study examined the relationship between caregiver mastery and depressive symptoms among family stroke caregivers in western Japan (N = 100). Family caregivers were identified from a sample of rehabilitation hospitals; participation rate was 100 percent for all eligible caregivers. Care-givers with high mastery were found to have…

Potentially preventable hospitalizations in dementia: family caregiver experiences.

PubMed

Sadak, Tatiana; Foster Zdon, Susan; Ishado, Emily; Zaslavsky, Oleg; Borson, Soo

2017-07-01

Health crises in persons living with dementia challenge their caregivers to make pivotal decisions, often under pressure, and to act in new ways on behalf of their care recipient. Disruption of everyday routines and heightened stress are familiar consequences of these events. Hospitalization for acute illness or injury is a familiar health crisis in dementia. The focus of this study is to describe the lived experience of dementia family caregivers whose care recipients had a recent unplanned admission, and to identify potential opportunities for developing preventive interventions. Family caregivers (n = 20) of people with dementia who experienced a recent hospitalization due to an ambulatory care sensitive condition or fall-related injury completed phone interviews. Interviews used semi-structured protocols to elicit caregivers' reactions to the hospitalization and recollections of the events leading up to it. Analysis of interview data identified four major themes: (1) caregiver is uncertain how to interpret and act on the change; (2) caregiver is unable to provide necessary care; (3) caregiver experiences a personal crisis in response to the patient's health event; (4) mitigating factors may prevent caregiver crises. This study identifies a need for clinicians and family caregivers to work together to avoid health crises of both caregivers and people with dementia and to enable caregivers to manage the health of their care recipients without sacrificing their own health and wellness.

Exploring factors and caregiver outcomes associated with feelings of preparedness for caregiving in family caregivers in palliative care: a correlational, cross-sectional study.

PubMed

Henriksson, Anette; Årestedt, Kristofer

2013-07-01

Family caregivers in palliative care often report feeling insufficiently prepared to handle the caregiver role. Preparedness has been confirmed as a variable that may actually protect family caregiver well-being. Preparedness refers to how ready family caregivers perceive they are for the tasks and demands in the caregiving role. The aim of this study was to explore factors associated with preparedness and to further investigate whether preparedness is associated with caregiver outcomes. This was a correlational study using a cross-sectional design. The study took place in three specialist palliative care units and one haematology unit. A total of 125 family caregivers of patients with life-threatening illness participated. Preparedness was significantly associated with higher levels of hope and reward and with a lower level of anxiety. In contrast, preparedness was not associated with depression or health. Being female and cohabiting with the patient were significantly associated with a higher level of preparedness. The relationship to the patient was significantly associated with preparedness, while social support, place of care, time since diagnosis and age of the patients showed no association. Feelings of preparedness seem to be important for how family caregivers experience the unique situation when caring for a patient who is severely ill and close to death. Our findings support the inclusion of preparedness in support models for family caregivers in palliative care. Psycho-educational interventions could preferably be designed aiming to increase family caregiver's preparedness to care, including practical care, communication and emotional support.

Exploring the connections between traumatic brain injury caregiver mental health and family dynamics in Mexico City, Mexico.

PubMed

Perrin, Paul B; Stevens, Lillian F; Sutter, Megan; Hubbard, Rebecca; Díaz Sosa, Dulce María; Espinosa Jove, Irma Guadalupe; Arango-Lasprilla, Juan Carlos

2013-10-01

To examine the patterns of family dynamics that are most associated with the mental health of traumatic brain injury (TBI) caregivers from Mexico. It was hypothesized that healthier family dynamics would be associated with better caregiver mental health. A cross-sectional study of self-reported data collected from TBI caregivers through the Mexican National Institute of Rehabilitation in Mexico City, Mexico, the premier public medical facility in Mexico that provides rehabilitation services to patients with various disabilities. One public outpatient medical and rehabilitation facility. Sixty-eight caregivers of individuals with moderate-to-severe TBI from Mexico City, Mexico, were related to an individual with TBI who was ≥3 months after injury, a primary caregiver for ≥3 months, familiar with the patient's history, and without neurologic or psychiatric conditions. The average (standard deviation) age of caregivers was 50.94 ± 12.85 years), and 82% were women. The caregivers completed Spanish versions of instruments that assessed their own mental health and family dynamics. Outcomes assessed included family dynamics (Family Adaptability and Cohesion Evaluation Scale-Fourth Edition; Family Communication Scale; Family Satisfaction Scale; Family Assessment Device-General Functioning; and Relationship-Focused Coping Scale), and caregiver mental health (Patient Health Questionnaire-9, Zarit Burden Interview, and Satisfaction with Life Scale). Results of canonical correlation analyses suggested that caregiver mental health and family dynamics were positively related, with a large effect size. Caregivers with high family satisfaction and cohesion tended to have a low burden and high satisfaction with life. In addition, caregiver depression and burden were positively related to each other and were both inversely related to caregiver satisfaction with life. TBI caregiver interventions in Latino populations would likely benefit from including programming or

Caregiving styles: a cognitive and behavioral typology associated with dementia family caregiving.

PubMed

Corcoran, Mary A

2011-08-01

An increasing number of elderly individuals are diagnosed with Alzheimer's disease and related disorders (ADRD), many of whom receive daily caregiving from spouse or adult child. Caregiving is a "cultural activity," and as such it is strongly influenced by sociocultural beliefs about caregiving and how it should be enacted. Understanding this thinking-action process has important implications for future research and service. Reasoned action theory provides empirical evidence that attitudes and beliefs, as they are influenced by the social environment, predict intentions to act. In turn, behavioral intentions can reliably predict behaviors. This grounded theory study describes a typology of caregiving styles relevant to family members of an individual with ADRD, where caregiving style is defined as a culturally based pattern in thinking and action. The goal of this study was to characterize the relationship between caregiver intentions and care strategies. Study participants included 97 individuals residing in the Washington, DC, area, who provide daily care for a family member with ADRD. Narrative data were collected from each caregiver during three 1-hr interview sessions. A subset of 30 caregiver-care recipient (CR) dyads was videotaped during typical interactions. Four caregiving styles were identified (facilitating, balancing, advocating, and directing), which differ primarily in the intended focus of care and preferred interactions with the CR. The results provide a foundation for future studies of the relationships between sociocultural context, caregiving styles and strategies, and ensuing outcomes for caregiver-CR dyads.

[Family caregivers' adjustment to nursing home placement of older relatives].

PubMed

Wang, Szu-Yao; Davies, Elizabeth

2007-06-01

The literature on the impact of nursing home placement of older parents on family caregivers is still incomplete. Family caregivers experience stress, shock, anxiety, fear, resistance, and guilt in the process of decision making. The literature has demonstrated that family caregivers continue to experience stress and problems after placing older relatives into a long term care facility. Cultural values impact on people's attitudes, values and expectations. Culture will therefore affect the care-giving experience. Relatively little information is available from Asian and multicultural societies. Identifying family caregiver experiences after nursing home placement can alert professionals to the need for family guidance prior to nursing home placement and assist in early identification of potential problems. This article reviews the literature and discusses the impact on family caregivers of making a decision for nursing home placement and dealing with the stress and challenges that persist after nursing home admission.

The Cancer Family Caregiving Experience: An Updated and Expanded Conceptual Model

PubMed Central

Fletcher, Barbara Swore; Miaskowski, Christine; Given, Barbara; Schumacher, Karen

2011-01-01

Objective The decade from 2000–2010 was an era of tremendous growth in family caregiving research specific to the cancer population. This research has implications for how cancer family caregiving is conceptualized, yet the most recent comprehensive model of cancer family caregiving was published ten years ago. Our objective was to develop an updated and expanded comprehensive model of the cancer family caregiving experience, derived from concepts and variables used in research during past ten years. Methods A conceptual model was developed based on cancer family caregiving research published from 2000–2010. Results Our updated and expanded model has three main elements: 1) the stress process, 2) contextual factors, and 3) the cancer trajectory. Emerging ways of conceptualizing the relationships between and within model elements are addressed, as well as an emerging focus on caregiver-patient dyads as the unit of analysis. Conclusions Cancer family caregiving research has grown dramatically since 2000 resulting in a greatly expanded conceptual landscape. This updated and expanded model of the cancer family caregiving experience synthesizes the conceptual implications of an international body of work and demonstrates tremendous progress in how cancer family caregiving research is conceptualized. PMID:22000812

Role adaptation of family caregivers for ventilator-dependent patients: transition from respiratory care ward to home.

PubMed

Huang, Tzu-Ting; Peng, Ji-Ming

2010-06-01

To explore the underlying theoretical framework for the role adaptation of family caregivers for ventilator-dependent patients after transferring from respiratory care ward to home. The number of ventilator-dependent patients has been increasing worldwide. Under Taiwan's National Health Insurance policy, if ventilator-dependent patients are stable, they should be transferred from an acute care hospital to a subacute unit or home. A qualitative design based on grounded theory was adopted for this study. One-on-one, in-depth interviews were conducted with a purposive sample of 15 family caregivers who were caretaking ventilator-dependent patients at their home two months after hospital discharge. Theoretical sampling was used until concepts emerging in data analysis were saturated. Analysis of audio-taped interview transcripts generated a process of role adaptation for family caregivers of a ventilator-dependent patient. The caregiver's transition to the care-giving role is a dynamic process with consequences that are impacted by level of support from the family, affective rewards from the patient, patient's health condition and a balanced life schedule for the caregiver. The results of this study can provide respiratory care professionals with skills to assess the needs of caregivers for ventilator-dependent patients and individualise interventions to caregivers' specific needs. The findings of this study contribute to nurses' understanding and promotion of role adaptation for family caregivers among ventilator-dependent patients.

Gender differences in caregiving among family - caregivers of people with mental illnesses

PubMed Central

Sharma, Nidhi; Chakrabarti, Subho; Grover, Sandeep

2016-01-01

All over the world women are the predominant providers of informal care for family members with chronic medical conditions or disabilities, including the elderly and adults with mental illnesses. It has been suggested that there are several societal and cultural demands on women to adopt the role of a family-caregiver. Stress-coping theories propose that women are more likely to be exposed to caregiving stressors, and are likely to perceive, report and cope with these stressors differently from men. Many studies, which have examined gender differences among family-caregivers of people with mental illnesses, have concluded that women spend more time in providing care and carry out personal-care tasks more often than men. These studies have also found that women experience greater mental and physical strain, greater caregiver-burden, and higher levels of psychological distress while providing care. However, almost an equal number of studies have not found any differences between men and women on these aspects. This has led to the view that though there may be certain differences between male and female caregivers, most of these are small in magnitude and of doubtful clinical significance. Accordingly, caregiver-gender is thought to explain only a minor proportion of the variance in negative caregiving outcomes. A similar inconsistency characterizes the explanations provided for gender differences in caregiving such as role expectations, differences in stress, coping and social support, and response biases in reporting distress. Apart from the equivocal and inconsistent evidence, there are other problems in the literature on gender differences in caregiving. Most of the evidence has been derived from studies on caregivers of elderly people who either suffer from dementia or other physical conditions. Similar research on other mental illnesses such as schizophrenia or mood disorders is relatively scarce. With changing demographics and social norms men are increasingly

The effectiveness of telehealth care on caregiver burden, mastery of stress, and family function among family caregivers of heart failure patients: a quasi-experimental study.

PubMed

Chiang, Li-Chi; Chen, Wan-Chou; Dai, Yu-Tzu; Ho, Yi-Lwun

2012-10-01

Telehealth care was developed to provide home-based monitoring and support for patients with chronic disease. The positive effects on physical outcome have been reported; however, more evidence is required concerning the effects on family caregivers and family function for heart failure patients transitioning from the hospital to home. To evaluate the effectiveness of nursing-led transitional care combining discharge plans and telehealth care on family caregiver burden, stress mastery and family function in family caregivers of heart failure patients compared to those receiving traditional discharge planning only. This is a quasi-experimental study design. Sixty-three patients with heart failure were assessed for eligibility and invited to participate in either telehealth care or standard care in a medical centre from May to October 2010. Three families refused to participate in data collection. Thirty families who chose telehealth care after discharge from the hospital to home comprised the experimental group; the others families receiving discharge planning only comprised the comparison group. Telenursing specialist provided the necessary family nursing interventions by 24-h remote monitoring of patients' health condition and counselling by telephone, helping the family caregivers successfully transition from hospital to home. Data on caregiver burden, stress mastery and family function were collected before discharge from the hospital and one month later at home. Effects of group, time, and group×time interaction were analysed using Mixed Model in SPSS (17.0). Family caregivers in both groups had significantly lower burden, higher stress mastery, and better family function at one-month follow-up compared to before discharge. The total score of caregiver burden, stress mastery and family function was significantly improved for the family caregivers in the experimental group compared to the comparison group at posttest. Two subscales of family function

Family Caregiver Training Program (FCTP): A Randomized Controlled Trial.

PubMed

DiZazzo-Miller, Rosanne; Winston, Kristin; Winkler, Sandra L; Donovan, Mary L

The purpose of this study was to examine the effectiveness of the Family Caregiver Training Program (FCTP) for caregivers of people with dementia. A random assignment control group research design with a 3-mo follow-up was implemented. Thirty-six family caregivers of people with dementia demonstrated an increase in activity of daily living (ADL) knowledge (p < .001) and maintenance of that knowledge 3 mo posttest. Caregiver confidence, regardless of group assignment, improved; however, it was not maintained. Burden, depression, and occupational performance and satisfaction remained unchanged for the intervention group; however, physical health as it pertained to quality of life improved 3 mo posttest (p < .001). Findings demonstrate that the FCTP can effectively provide knowledge to family caregivers on how to assist people with dementia with ADLs. Even when standard care was provided, there was limited information on ADLs that family caregivers faced daily. Copyright © 2017 by the American Occupational Therapy Association, Inc.

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

PubMed

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

2011-09-01

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

Innovative Program Aims to Improve Support for Cancer Family Caregivers

Cancer.gov

Family caregivers provide the vast majority of care for people with cancer. The Family Caregiver Project at the City of Hope Cancer Center is an educational program intended to provide health professionals with the tools and information needed to help family caregivers care for themselves and their loved ones with cancer.

The contributions of family care-givers at end of life: A national post-bereavement census survey of cancer carers' hours of care and expenditures.

PubMed

Rowland, Christine; Hanratty, Barbara; Pilling, Mark; van den Berg, Bernard; Grande, Gunn

2017-04-01

Family members provide vital care at end of life, enabling patients to remain at home. Such informal care contributes significantly to the economy while supporting patients' preferences and government policy. However, the value of care-givers' contributions is often underestimated or overlooked in evaluations. Without information on the activities and expenditures involved in informal care-giving, it is impossible to provide an accurate assessment of carers' contribution to end-of-life care. The aim of this study was to investigate the contributions and expenditure of informal, family care-giving in end-of-life cancer care. A national census survey of English cancer carers was conducted. Survey packs were mailed to 5271 people who registered the death of a relative to cancer during 1-16 May 2015. Data were collected on decedents' health and situation, care support given, financial expenditure resulting from care, carer well-being and general background information. In all, 1504 completed surveys were returned (28.5%). Over 90% of respondents reported spending time on care-giving in the last 3 months of the decedent's life, contributing a median 69 h 30 min of care-giving each week. Those who reported details of expenditure (72.5%) spent a median £370 in the last 3 months of the decedent's life. Carers contribute a great deal of time and money for day-to-day support and care of patients. This study has yielded a unique, population-level data set of end-of-life care-giving and future analyses will provide estimates of the economic value of family care-givers' contributions.

The predictive factors for perceived social support among cancer patients and caregiver burden of their family caregivers in Turkish population.

PubMed

Oven Ustaalioglu, Basak; Acar, Ezgi; Caliskan, Mecit

2018-03-01

We aimed to identify the predictive factors for the perceived family social support among cancer patients and caregiver burden of their family caregivers. Participants were 302 cancer patients and their family caregivers. Family social support scale was used for cancer patients, burden interview was used for family caregivers.All subjects also completed Beck depression invantery. The related socio-demographical factors with perceived social support (PSS) and caregiver burden were evaluated by correlation analysis. To find independent factors predicting caregiver burden and PSS, logistic regression analysis were conducted. Depression scores was higher among patients than their family caregivers (12.5 vs. 8). PSS was lower in depressed patients (p < .001). Family caregiver burden were also higher in depressive groups (p < .001). Among patients only the depression was negatively correlated with PSS (p < .001, r = -2.97). Presence of depression (p < .001, r = 0.381) was positively correlated and family caregiver role was negatively correlated (p < .001, r = -0.208) with caregiver burden. Presence of depression was the independent predictor for both, lower PSS for patients and higher burden for caregivers. The results of this study is noteworthy because it may help for planning any supportive care program not only for patients but together with their caregiver at the same time during chemotherapy period in Turkish population.

Collective Care: Multiple Caregivers and Multiple Care Recipients in Mexican American Families.

PubMed

Evans, Bronwynne C; Coon, David W; Belyea, Michael J; Ume, Ebere

2017-07-01

Specific stressors associated with caregiving in Mexican American (MA) families are not well documented, yet caregiving issues are paramount because informal care for parents is central to their culture. Although MA families who band together to provide care for one member are not unique, the literature does not describe the phenomenon of collective caregiving, which may be widespread but unrecognized. This article describes these understudied families who are poorly served by contemporary health systems because their characteristics are unknown. Descriptive, multisite, longitudinal mixed-methods study of MA caregiving families. We identified three types of collective caregivers: those providing care for multiple family members simultaneously, those providing care successively to several family members, and/or those needing care themselves during their caregiving of others. Collective caregiving of MA elders warrants further investigation. Exploration of collective caregiving may provide a foundation for tailored family interventions.

When the private sphere goes public: exploring the issues facing family caregiver organizations in the development of long-term care policies.

PubMed

Rozario, Philip A; Palley, Elizabeth

2008-01-01

Though family caregiving forms the backbone of the long-term care system in the United States, long-term care policies have traditionally focused on paid services that frail older people and people with disabilities utilize for their day-to-day functioning. Part of the exclusion of family caregiving from the long-term care discourse stems from the traditional separation of the private sphere, where family caregiving occurs, from the public sphere of policy making. However, the passage of the Family and Medical Leave Act (FMLA), the National Family Caregiver Support Program (NFCSP) and Medicaid waiver legislation may reflect recent changes in the government's position on their role in addressing issues related to the "private spheres." In this article, we explore the nature of family caregiving in the United States, the divide between the public and private spheres and provide an overview of family caregiving-related policies and programs in the U.S. In our review, we examine the provisions in the FMLA, NFCSP, and Medicaid waiver legislation that support family caregiving efforts. We also examine the roles of family caregiver organizations in making family caregiving an important element of long-term care policy and influencing policy-making.

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

PubMed Central

Tsutsui, Takako; Muramatsu, Naoko; Higashino, Sadanori

2014-01-01

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

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

PubMed

Tsutsui, Takako; Muramatsu, Naoko; Higashino, Sadanori

2014-10-01

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

75 FR 67903 - National Family Caregivers Month, 2010

Federal Register 2010, 2011, 2012, 2013, 2014

2010-11-04

... assistance with their caregiving responsibilities. This program provides information, assistance, counseling, training, support groups, and respite care for caregivers across our country. My Administration's Middle...

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

PubMed

Coke, Sallie P; Moore, Leslie C

2015-01-01

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

Linking family dynamics and the mental health of Colombian dementia caregivers.

PubMed

Sutter, Megan; Perrin, Paul B; Chang, Yu-Ping; Hoyos, Guillermo Ramirez; Buraye, Jaqueline Arabia; Arango-Lasprilla, Juan Carlos

2014-02-01

This cross-sectional, quantitative, self-report study examined the relationship between family dynamics (cohesion, flexibility, pathology/ functioning, communication, family satisfaction, and empathy) and mental health (depression, burden, stress, and satisfaction with life [SWL]) in 90 dementia caregivers from Colombia. Hierarchical multiple regressions controlling for caregiver demographics found that family dynamics were significantly associated with caregiver depression, stress, and SWL and marginally associated with burden. Within these regressions, empathy was uniquely associated with stress; flexibility with depression and marginally with SWL; and family communication marginally with burden and stress. Nearly all family dynamic variables were bivariately associated with caregiver mental health variables, such that caregivers had stronger mental health when their family dynamics were healthy. Family-systems interventions in global regions with high levels of familism like that in the current study may improve family empathy, flexibility, and communication, thereby producing better caregiver mental health and better informal care for people with dementia.

Influence of personality on depression, burden, and health-related quality of life in family caregivers of persons with dementia.

PubMed

Kim, Sun Kyung; Park, Myonghwa; Lee, Yunhwan; Choi, Seong Hye; Moon, So Young; Seo, Sang Won; Park, Kyung Won; Ku, Bon D; Han, Hyun Jeong; Park, Kee Hyung; Han, Seol-Heui; Kim, Eun-Joo; Lee, Jae-Hong; Park, Sun A; Shim, Yong S; Kim, Jong Hun; Hong, Chang Hyung; Na, Duk L; Ye, Byoung Seok; Kim, Hee Jin; Moon, Yeonsil

2017-02-01

Personality may predispose family caregivers to experience caregiving differently in similar situations and influence the outcomes of caregiving. A limited body of research has examined the role of some personality traits for health-related quality of life (HRQoL) among family caregivers of persons with dementia (PWD) in relation to burden and depression. Data from a large clinic-based national study in South Korea, the Caregivers of Alzheimer's Disease Research (CARE), were analyzed (N = 476). Path analysis was performed to explore the association between family caregivers' personality traits and HRQoL. With depression and burden as mediating factors, direct and indirect associations between five personality traits and HRQoL of family caregivers were examined. Results demonstrated the mediating role of caregiver burden and depression in linking two personality traits (neuroticism and extraversion) and HRQoL. Neuroticism and extraversion directly and indirectly influenced the mental HRQoL of caregivers. Neuroticism and extraversion only indirectly influenced their physical HRQoL. Neuroticism increased the caregiver's depression, whereas extraversion decreased it. Neuroticism only was mediated by burden to influence depression and mental and physical HRQoL. Personality traits can influence caregiving outcomes and be viewed as an individual resource of the caregiver. A family caregiver's personality characteristics need to be assessed for tailoring support programs to get the optimal benefits from caregiver interventions.

38 CFR 52.71 - Participant and family caregiver responsibilities.

Code of Federal Regulations, 2011 CFR

2011-07-01

... 38 Pensions, Bonuses, and Veterans' Relief 2 2011-07-01 2011-07-01 false Participant and family....71 Participant and family caregiver responsibilities. The program management has a written statement of participant and family caregiver responsibilities that are posted in the facility and provided to...

38 CFR 52.71 - Participant and family caregiver responsibilities.

Code of Federal Regulations, 2010 CFR

2010-07-01

....71 Participant and family caregiver responsibilities. The program management has a written statement of participant and family caregiver responsibilities that are posted in the facility and provided to... 38 Pensions, Bonuses, and Veterans' Relief 2 2010-07-01 2010-07-01 false Participant and family...

Religious Involvement and Adaptation in Female Family Caregivers.

PubMed

Koenig, Harold G; Nelson, Bruce; Shaw, Sally F; Saxena, Salil; Cohen, Harvey Jay

2016-03-01

To examine the relationship between religious involvement (RI) and adaptation of women caring for family members with severe physical or neurological disability. Two-site cross-sectional study. Community. A convenience sample of 251 caregivers was recruited. RI and caregiver adaptation (assessed by perceived stress, caregiver burden, and depressive symptoms) were measured using standard scales, along with caregiver characteristics, social support, and health behaviors. Bivariate and multivariate analyses were conducted to identify relationships and mediating and moderating factors. Religious involvement (RI) was associated with better caregiver adaptation independent of age, race, education, caregiver health, care recipient's health, social support, and health behaviors (B = -0.09, standard error = 0.04, t = -2.08, P = .04). This association was strongest in caregivers aged 58-75 and spouses and for perceived stress in blacks. Religious involvement (RI) in female caregivers is associated with better caregiver adaptation, especially for those who are older, spouses of the care recipients, and blacks. These results are relevant to the development of future interventions that provide support to family caregivers. © 2016, Copyright the Authors Journal compilation © 2016, The American Geriatrics Society.

Spirituality and psychological well-being: testing a theory of family interdependence among family caregivers and their elders.

PubMed

Kim, Suk-Sun; Reed, Pamela G; Hayward, R David; Kang, Youngmi; Koenig, Harold G

2011-04-01

The family spirituality-psychological well-being model was developed and tested to explore how spirituality influences psychological well-being among elders and caregivers in the context of Korean family caregiving. The sample consisted of 157 Korean elder-family caregiver dyads in Seoul, Korea. The intraclass correlation coefficient and the actor-partner interdependence statistical model were used to analyze the data. There were significant correlations between elders' and caregivers' spirituality and between elders' and caregivers' psychological well-being. Elders' and caregivers' spirituality significantly influenced their own psychological well-being. The caregiver's spirituality significantly influenced the elder's psychological well-being, but the elder's spirituality did not significantly influence the caregiver's psychological well-being. Findings suggest that elders' and caregivers' spirituality should be assessed within the family to provide holistic nursing interventions. Copyright © 2011 Wiley Periodicals, Inc.

Collective Care: Multiple Caregivers and Multiple Care Recipients in Mexican American Families

PubMed Central

Evans, Bronwynne C.; Coon, David W.; Belyea, Michael J.; Ume, Ebere

2016-01-01

Purpose Specific stressors associated with caregiving in Mexican-American (MA) families are not well documented, yet caregiving issues are paramount because informal care for parents is central to their culture. Although MA families who band together to provide care for one member are not unique, the literature does not describe the phenomenon of collective caregiving, which may be widespread but unrecognized. Such families are both understudied and poorly served by contemporary health systems because their characteristics are unknown. Design Descriptive, multi-site, longitudinal mixed-methods study of MA caregiving families. Findings We identified three types of collective caregivers: those providing care for multiple family members simultaneously; those providing care successively to several family members, and/or those finding themselves obliged to accept care during their caregiving of others. Discussion and Conclusions Collective caregiving of MA elders warrants further investigation. Implications for Practice Exploration of collective caregiving may provide a foundation for tailored family interventions. PMID:27389911

Emotions, Ideas and Experiences of Caregivers of Patients With Schizophrenia About "Family to Family Support Program".

PubMed

Bademli, Kerime; Duman, Zekiye Çetinkaya

2016-06-01

"Family to Family Support Program" is a significant intervention program to assist families by informing them about treatment procedures and coping strategies, increasing their functionality, helping them to overcome the challenges of the disease. This study was particularly designed to investigate the emotions, thoughts, and experiences of caregivers of schizophrenia patients who participated in "Family to Family Support Program." The study was conducted with one of the qualitative research methods, phenomenological method. The study sample included caregivers who care for schizophrenia patients and participated in the "Family to Family Support Program". Twenty caregivers were included in the sample. The study was carried out in İzmir Schizophrenia Support Association. The study data were collected with four open ended questions. The average age of the participants was 56,77 ± 72,89, 10 male caregivers and 10 female caregivers, 9 caregivers were fathers, 6 caregivers were mothers, and 5 of them were siblings. The thematic analysis indicated that the emotions, thoughts and experiences of caregivers can be categorized in four groups: "I learned to deal with my problems", "I am conscious in my interaction with the patient and I know and I am not alone", "I feel much better", and "Schizophrenia is not the end of the road, knowledge sorts things out." Caregivers who participated in "Family to Family Support Program" expressed their satisfaction that they were benefited from the program, their coping skills were improved, they experienced less challenges when providing care, they understood the disease better, and it felt comfortable. Copyright © 2015 Elsevier Inc. All rights reserved.

Caregiving Styles: A Cognitive and Behavioral Typology Associated With Dementia Family Caregiving

PubMed Central

Corcoran, Mary A.

2011-01-01

Purpose: An increasing number of elderly individuals are diagnosed with Alzheimer’s disease and related disorders (ADRD), many of whom receive daily caregiving from spouse or adult child. Caregiving is a “cultural activity,” and as such it is strongly influenced by sociocultural beliefs about caregiving and how it should be enacted. Understanding this thinking–action process has important implications for future research and service. Reasoned action theory provides empirical evidence that attitudes and beliefs, as they are influenced by the social environment, predict intentions to act. In turn, behavioral intentions can reliably predict behaviors. This grounded theory study describes a typology of caregiving styles relevant to family members of an individual with ADRD, where caregiving style is defined as a culturally based pattern in thinking and action. The goal of this study was to characterize the relationship between caregiver intentions and care strategies. Methods: Study participants included 97 individuals residing in the Washington, DC, area, who provide daily care for a family member with ADRD. Narrative data were collected from each caregiver during three 1-hr interview sessions. A subset of 30 caregiver–care recipient (CR) dyads was videotaped during typical interactions. Results: Four caregiving styles were identified (facilitating, balancing, advocating, and directing), which differ primarily in the intended focus of care and preferred interactions with the CR. Implications: The results provide a foundation for future studies of the relationships between sociocultural context, caregiving styles and strategies, and ensuing outcomes for caregiver–CR dyads. PMID:21335422

The Impact of Family Functioning on Caregiver Burden among Caregivers of Veterans with Congestive Heart Failure

ERIC Educational Resources Information Center

Moore, Crystal Dea

2010-01-01

A cross-sectional study of 76 family caregivers of older veterans with congestive heart failure utilized the McMaster model of family functioning to examine the impact of family functioning variables (problem solving, communication, roles, affective responsiveness, and affective involvement) on caregiver burden dimensions (relationship burden,…

Factors associated with the caregiver burden among family caregivers of patients with heart failure in southwest China.

PubMed

Hu, Xiaolin; Dolansky, Mary A; Hu, Xiuying; Zhang, Fengying; Qu, Moying

2016-03-01

We investigated the status of caregiver burden and identified the factors related to caregiver burden among family caregivers of patients with heart failure in southwest China. A cross-sectional descriptive design with a convenience sample was adopted. Patient and family caregiver dyads (n = 226) in four hospitals in Chengdu, China were recruited from June 2013 to July 2014. The instruments used in this study included the Social Support Rating Scale, the Zarit Burden Interview, and the General Self-Efficacy Scale. Multivariate analysis was used to identify the factors associated with caregiver burden. Forty-four percent of the variance of the caregiver burden was explained by the payment type for treatment, monthly family income, relationship to the patient, caregivers' self-efficacy, and social support. The caregiver burden in southwest China was higher than studies conducted in developed areas. Specific to southwest China, the financial burden and insufficient resources are the main factors associated with caregiver burden. The results suggest that self-efficacy and social support in underdeveloped areas are potential areas for future intervention. © 2016 John Wiley & Sons Australia, Ltd.

Gendering Guilt among Dependent Family Members' Caregivers.

PubMed

Brea, Maria-Teresa; Albar, María-Jesús; Casado-Mejia, Rosa

2016-11-17

This study analyzes guilt among family caregivers of dependent patients, from a gender perspective. A qualitative design was used, conducting in-depth interviews and focus groups. Using purposive sampling, we selected 73 family caregivers and 23 health professionals (family medicine, community nursing, and social work) from the Primary Care District of Seville. The content of the information collected was analyzed in terms of the following categories: a) guilt for abandoning family and friends; b) guilt for the relationship with the dependent person; and c) guilt for placing the relative in a nursing home. To validate the findings, data sources, methodological techniques, and researchers' disciplines were all triangulated. Results indicated that women report more guilt than men for abandoning family and friends, and because of their relationship with the dependent person. However, with respect to nursing home placement, no difference was observed as a function of gender. The high incidence of caregiver guilt needs to be addressed by health professionals to avoid the emergence of other mental health issues.

Types of Family Caregiving and Daily Experiences in Midlife and Late Adulthood: The Moderating Influences of Marital Status and Age.

PubMed

Wong, Jen D; Shobo, Yetunde

2017-07-01

Guided by the life-course perspective, this study contributes to the family caregiving, aging, and disability literature by examining the daily experiences of three types of family caregivers in midlife and late adulthood. A sample of 162 caregivers from the National Survey of Midlife in the United States study completed interviews, questionnaires, and a Daily Diary Study. Multilevel models showed the patterns of daily time use did not differ by caregiver types. Caregivers of sons/daughters with developmental disabilities (DD) experienced more daily stressors than caregivers of parents with health conditions (HC) and caregivers of spouses with HC. Unmarried caregivers of sons/daughters with DD reported spending more time on daily leisure activities and exhibited greater daily stressor exposure than other family caregivers. Age did not moderate the associations between caregiver types and daily experiences. Findings highlight the important consideration of the caregivers' characteristics to better determine the quality of their daily experiences in midlife and late adulthood.

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

PubMed

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

2009-06-01

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

Family Caregivers' Patterns of Positive and Negative Affect

ERIC Educational Resources Information Center

Robertson, Suzanne M.; Zarit, Steven H.; Duncan, Larissa G.; Rovine, Michael J.; Femia, Elia E.

2007-01-01

Stressful and positive family caregiving experiences were examined as predictors of caregivers' patterns of positive and negative affect in a sample of families providing care for a relative with dementia (N = 234). Four affect pattern groups were identified: (a) Well Adjusted (i.e., high positive affect, low negative affect); (b) Ambiguous (i.e.,…

Educating Family Caregivers for Older Adults About Delirium: A Systematic Review.

PubMed

Bull, Margaret J; Boaz, Lesley; Jermé, Martha

2016-06-01

Delirium in older adults is considered a medical emergency; it contributes to a cascade of functional decline and to increased mortality. Early recognition of delirium symptoms is critical to prevent these negative consequences. Family caregivers who are educated about delirium could partner with nurses and other healthcare professionals in early recognition of delirium symptoms. Before implementing such partnership models, it is important to examine the effectiveness of educating family caregivers about delirium. To examine whether providing education on delirium to family caregivers improved their knowledge, emotional state, or response in reducing the incidence of delirium in older adults. For this systematic review, we conducted literature searches in CINAHL, Cochrane Library, Medline, PsycINFO, Web of Science, Social Sciences in ProQuest, Dissertations and Theses, and the Virginia Henderson Global Nursing eRepository for studies published in the English language between January 2000 and June 2015. Criteria for inclusion were: (a) primary focus on educating family caregivers for older adults about delirium; (b) use of experimental, quasi-experimental, or comparative design; (c) measured family caregiver outcomes of delirium knowledge, emotional state, or response in reducing delirium incidence in older adults; and (d) published in the English language. Articles were appraised using Melnyk's rapid critical appraisal guides. Seven studies met the review criteria. Four studies found that family caregivers' delirium knowledge increased; two noted that delirium incidence in older adults declined; and one study reported less distress following receipt of education. Providing family caregivers with information about delirium can be beneficial for both family caregivers and older adults. However, rigorous evaluation of education programs for family caregivers about delirium is needed. © 2016 Sigma Theta Tau International.

[Family caregiver issues: gender, privacy, and public policy perspectives].

PubMed

Lee, I; Chou, Fan-Hao; Chen, Chung-Hey

2011-04-01

Due to the phenomenon of Taiwan'saging population has made, long-term care has become an issue of increasingly emphasized importance. According to the statistics, the family takes responsibility for most long-term care duties and more than 70% of primary family caregivers are female. In the past, because of gender-based divisions of labor and gender role expectations made, it was taken for granted that females would be the socially preferred family caregivers. Those men who devoting in themselves to such work were regarded as a rare precious. As such, family care signified entailed different life experiences for males and females. Over the years, amendments to the civil code have recognized family care contributions, and the allowance for caregivers underlines that care responsibilities have shifted away from the family to society. Traditional gender divisions of labor today are significantly more blurred; family structures have become smaller in size; female labor in the workplace has increased; and ten-year long-term care plans and long-term care insurance have been successively implemented. These transformations will make labor outsourcing more and more popular and transform family care from a private problem to a pubic policy issue. In the future, family caregivers require consideration and support on a sustained basis. It is also important to improve and monitor the quality of care services. Nurses, the major professional members of long-term care teams, should be concerned over the issue of family care while providing nursing care. They should include family caregivers in the care plan so that they can make sure that patients receive comprehensive and constant care in order to enhance the overall quality of nursing care.

Adapting the Structural Family Systems Rating to Assess the Patterns of Interaction in Families of Dementia Caregivers

ERIC Educational Resources Information Center

Mitrani, Victoria B.; Feaster, Daniel J.; McCabe, Brian E.; Czaja, Sara J.; Szapocznik, Jose

2005-01-01

Purpose: This study adapted the Structural Family Systems Ratings (SFSR), an observational measure of family interactions, for dementia caregivers. This article presents the development of the SFSR-Dementia Caregiver adaptation (SFSR-DC) and examines relationships between specific family-interaction patterns and caregiver distress. Design and…

Cancer family caregiver depression: are religion-related variables important?

PubMed

Williams, Anna-Leila; Dixon, Jane; Feinn, Richard; McCorkle, Ruth

2015-07-01

Prevalence estimates for clinical depression among cancer family caregivers (CFC) range upwards to 39%. Research inconsistently reports risk for CFC depressive symptoms when evaluating age, gender, ethnicity, or length of time as caregiver. The discrepant findings, coupled with emerging literature indicating religiosity may mitigate depression in some populations, led us to investigate religion-related variables to help predict CFC depressive symptoms. We conducted a cross-sectional study of 150 CFC. Explanatory variables included age, gender, spousal status, length of time as caregiver, attendance at religious services, and prayer. The outcome variable was the Center for Epidemiological Studies Depression Scale score. Compared with large national and state datasets, our sample has lower representation of individuals with no religious affiliation (10.7% vs. 16.1% national, p = 0.07 and 23.0% state, p = 0.001), higher rate of attendance at religious services (81.3% vs. 67.2% national, p < 0.001 and 30.0% state, p < 0.001), and higher rate of prayer (65.3% vs. 42.9% national, p < 0.001; no state data available). In unadjusted and adjusted models, prayer is not significantly associated with caregiver depressive symptoms or clinically significant depressive symptomology. Attendance at religious services is associated with depressive symptoms (p = 0.004) with an inversely linear trend (p = 0.002). The significant inverse association between attendance at religious services and depressive symptoms, despite no association between prayer and depressive symptoms, indicates that social or other factors may accompany attendance at religious services and contribute to the association. Clinicians can consider supporting a CFC's attendance at religious services as a potential preventive measure for depressive symptoms. Copyright © 2014 John Wiley & Sons, Ltd.

How family caregivers of cancer patients manage symptoms at home: A systematic review.

PubMed

Ullgren, Helena; Tsitsi, Theologia; Papastavrou, Evridiki; Charalambous, Andreas

2018-05-29

Cancer affects not only the patient, but also the whole family, especially when a member of the family assumes the role of the family caregiver. This puts an additional emotional, social and financial strain on the family caregivers. Family caregivers of cancer patients are actively involved in the care provided at the home setting through various ways including practical tasks, symptom management and care coordination. The focus of preceding studies on family caregivers and symptom management was either on pain or the patients' and family caregivers' experience of symptom management and coping. The aim of this review was to provide evidence on how family caregivers manage symptoms and side effects at home, in adult cancer patients throughout the disease trajectory. A systematic literature review was performed in PubMed, CINAHL, Web of Science and the Cochrane Central Register of Controlled Trials with a combination of keywords and MeSH terms for family caregivers, cancer, symptoms, side effects and management. Based on predetermined inclusion and exclusion criteria, a total of 1270 articles were screened and 20 studies were included in the analysis. A descriptive analysis was performed due to the heterogeneity of the findings. The results showed that only a limited number of studies (3/20) explored how and what family caregivers do in symptom management as a primary outcome. Family caregivers provided psychosocial support, such as supporting and motivating the patient and maintaining social engagement. Caregivers provided physical support such as with the administration of medicine and tube feeding. As an integral part of managing the symptoms, family caregivers actively monitored and assessed symptoms to timely recognize any treatment related side effects, assess the response to therapeutic interventions and recognize possible deterioration in physical status. Furthermore, family caregivers were often the decision maker - being alert, watching and waiting and

The Stress Process of Family Caregiving in Institutional Settings.

ERIC Educational Resources Information Center

Whitlatch, Carol J.; Schur, Dorothy; Noelker, Linda S.; Ejaz, Farida K.; Looman, Wendy J.

2001-01-01

Adapts Stress Process Model (SPM) of family caregiving to examine predictors of depression in a sample of caregivers (N=133) with demented relatives residing in suburban skilled nursing facilities. Results suggest that caregiver depression is closely linked to how well resident and caregiver adjust to the nursing home environment. (BF)

Distance caregiving a family member with cancer: A review of the literature on distance caregiving and recommendations for future research

PubMed Central

Douglas, Sara L; Mazanec, Polly; Lipson, Amy; Leuchtag, Mary

2016-01-01

Distance caregivers (DCGs) are a growing phenomenon in the United States Family members are struggling to provide care to loved ones with chronic illnesses such as cancer, from a distance. Unlike local caregiving research, distance caregiving research is limited and inconsistent definitions of distance make it difficult to compare studies. To date, DCGs have not been afforded the opportunities for educational and emotional support that local caregivers have received from the health care teams. Because they are not usually present at medical appointments, DCGs do not receive first-hand information from the health care team about the patient’s condition, disease progression, and/or treatment options. These caregivers report feeling left out of important family discussions. They experience anxiety related to the uncertainty of the family members’ well-being and guilt related to not being available to help local caregivers more. The challenges of distance caregiving are especially evident when the distance caregiver has a parent with advanced cancer. Family-centered care, attending to the needs of the whole family regardless of their geographic location is critical for quality cancer care. In this manuscript, the sparse literature on distance caregiving is reviewed. Recommendations for future research and for the development of creative technologically advanced interventions for this underserved caregiving population are suggested. PMID:27081643

Distance caregiving a family member with cancer: A review of the literature on distance caregiving and recommendations for future research.

PubMed

Douglas, Sara L; Mazanec, Polly; Lipson, Amy; Leuchtag, Mary

2016-04-10

Distance caregivers (DCGs) are a growing phenomenon in the United States Family members are struggling to provide care to loved ones with chronic illnesses such as cancer, from a distance. Unlike local caregiving research, distance caregiving research is limited and inconsistent definitions of distance make it difficult to compare studies. To date, DCGs have not been afforded the opportunities for educational and emotional support that local caregivers have received from the health care teams. Because they are not usually present at medical appointments, DCGs do not receive first-hand information from the health care team about the patient's condition, disease progression, and/or treatment options. These caregivers report feeling left out of important family discussions. They experience anxiety related to the uncertainty of the family members' well-being and guilt related to not being available to help local caregivers more. The challenges of distance caregiving are especially evident when the distance caregiver has a parent with advanced cancer. Family-centered care, attending to the needs of the whole family regardless of their geographic location is critical for quality cancer care. In this manuscript, the sparse literature on distance caregiving is reviewed. Recommendations for future research and for the development of creative technologically advanced interventions for this underserved caregiving population are suggested.

A Pilot Evaluation of the Family Caregiver Support Program

ERIC Educational Resources Information Center

Chen, Ya-Mei; Hedrick, Susan C.; Young, Heather M.

2010-01-01

The purposes of this study were to evaluate a federal and state-funded Family Caregiver Support Program (FCSP) and explore what types of caregiver support service are associated with what caregiver outcomes. Information was obtained on a sample of 164 caregivers' use of eleven different types of support service. Descriptive and comparative…

The role of attitudes and culture in family caregiving for older adults.

PubMed

Anngela-Cole, Linda; Hilton, Jeanne M

2009-01-01

This study evaluated cultural differences in attitudes toward caregiving and the stress levels of family caregivers. Participants included 98 Japanese American and 86 Caucasian American family caregivers caring for frail elders. Analyses using MANOVA and multiple regression analyses revealed that the Caucasian caregivers had more positive attitudes and provided more hours of care than the Japanese caregivers but that both groups had elevated levels of caregiver stress. The stress that family caregivers currently experience could lead to a future generation of care recipients who enter old age in worse condition than their predecessors. Professionals need to work together to develop culturally appropriate, evidence-based interventions to address this issue.

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

PubMed

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

2015-01-01

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

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

PubMed

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

2014-03-01

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

The Impact of Respite Programming on Caregiver Resilience in Dementia Care: A Qualitative Examination of Family Caregiver Perspectives

PubMed Central

Roberts, Emily; Struckmeyer, Kristopher M.

2018-01-01

Family members with a relative with dementia often experience what has been called the “unexpected career of caregiver” and face multifaceted, complex, and stressful life situations that can have important consequences. This exploratory study was designed to address this major public health challenge through the lens of caregiver resilience and caregiver respite programming. While many caregivers report that they derive significant emotional and spiritual rewards from their caregiving role, many also experience physical and emotional problems directly related to the stress and demands of daily care. One way to alleviate these demands is the growing respite care field, providing services in a variety of settings for caregiver. Through qualitative analysis from face-to-face interviews with 33 family caregivers of individuals with dementia, several themes emerged describing the path to caregiver resilience which include family dynamics, isolation, financial struggles, seeking respite, and acceptance. While much research focuses on a caregiving burden perspective, the innovation of the present study is applying the resilience framework to outcomes from respite programming. PMID:29424252

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

PubMed

Wong, Cindy C; Wallhagen, Margaret I

2014-01-01

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

Cross-national differences in the prevalence and correlates of burden among older family caregivers in the WHO World Mental Health (WMH) Surveys

PubMed Central

Shahly, V.; Chatterji, S.; Gruber, M. J.; Al-Hamzawi, A.; Alonso, J.; Andrade, L. H.; Angermeyer, M. C.; Bruffaerts, R.; Bunting, B.; Caldas-de-Almeida, J. M.; de Girolamo, G.; de Jonge, P.; Florescu, S.; Gureje, O.; Haro, J. M.; Hinkov, H. R.; Hu, C.; Karam, E. G.; Lépine, J.-P.; Levinson, D.; Medina-Mora, M. E.; Posada-Villa, J.; Sampson, N. A.; Trivedi, J.K.; Viana, M. C.; Kessler, R. C.

2014-01-01

Background Current trends in population aging affect both recipients and providers of informal family caregiving, as the pool of family caregivers is shrinking while demand is increasing. Epidemiologic research has not yet examined the implications of these trends for burdens experienced by aging family caregivers. Methods Cross-sectional community surveys in 20 countries asked 13,892 respondents ages 50+ about the objective (time, financial) and subjective (distress, embarrassment) burdens they experience in providing care to first-degree relatives with 12 broadly-defined serious physical and mental conditions. Differential burden was examined by country income category, kinship status, and type of condition. Results Among the 26.9-42.5% respondents in high, upper-middle, and low/lower-middle income countries reporting serious relative health conditions, 35.7-42.5% reported burden. Of those, 25.2-29.0% spent time and 13.5-19.4% money, while 24.4-30.6% felt distress and 6.4-21.7% embarrassment. Mean caregiving hours/week given any was 16.6-23.6 (169.9-205.8 hours/week/100 people ages 50+). Burden in low/lower-middle income countries was 2-3-fold higher than in higher income countries, with financial burden given any averaging 14.3% of median family income in high, 17.7% in upper-middle, and 39.8% in low/lower-middle income countries. Higher burden was reported by women than men and for conditions of spouses and children than parents or siblings. Conclusions Uncompensated family caregiving is an important societal asset that offsets rising formal healthcare costs. However, the substantial burdens experienced by aging caregivers across multiple family health conditions and geographic regions threaten the continued integrity of their caregiving capacity. Initiatives supporting older family caregivers are consequently needed, especially in low/lower-middle income countries. PMID:22877824

Family caregiver recruitment via social media: challenges, opportunities and lessons.

PubMed

Hansen, Dana; Sheehan, Denice K; Stephenson, Pam

2017-02-02

Illness blogs are a way seriously ill people communicate publicly about their illness journey. As communication about serious illness increases on social media, it is important to evaluate how this affects the family caregiver. However, identifying and accessing family caregivers remains challenging, especially via social media. The aim of this article is to report the opportunities, challenges and lessons learned from using social media to recruit family caregivers. Recruitment methods included posting study invitations on illness blogs, advertising through Facebook and placing study fliers in the community. Using social media to recruit was inexpensive and provided a wide geographical reach. One important finding was discovering the importance of using language in the recruitment materials that family caregivers could identify with to help deem themselves as eligible to participate in the study.

Extended family caring for children orphaned by AIDS: balancing essential work and caregiving in a high HIV prevalence nations.

PubMed

Heymann, J; Earle, A; Rajaraman, D; Miller, C; Bogen, K

2007-03-01

While over 90 per cent of the 15 million children who have been orphaned by HIV/AIDS are cared for by family members, there is little information about whether adults can meet orphans' essential caregiving needs while working to economically survive. Using a survey we conducted in Botswana of 1033 working adults, we analyse the experience of adults who are caring for orphans. Over one-third of working adults were caring for orphans and many with few financial resources: 82% were living on household incomes below US$10 purchasing power parity adjusted per person per day. Because of their caregiving responsibilities, they were less able to supplement income with overtime, weekend, evening, or night work. At the same time caregiving responsibilities meant orphan caregivers spent fewer hours caring for their own children and other family members. Nearly half of orphan caregivers had difficulties meeting their children's needs, and nearly 75% weren't able to meet with children's teachers. Pay loss at work compounded the problems: One-quarter of orphan caregivers reported having to take unpaid leave to meet sick childcare needs and nearly half reported being absent from work for children's routine health care. This paper makes clear that if families are to provide adequate care for orphans while economically surviving there needs to be increases in social supports and improvements in working conditions.

Quality of life discordance between terminal cancer patients and family caregivers: a multicenter study.

PubMed

Lee, Yong Joo; Kim, Jung Eun; Choi, Youn Seon; Hwang, In Cheol; Hwang, Sun Wook; Kim, Young Sung; Kim, Hyo Min; Ahn, Hong Yup; Kim, So Jin

2016-07-01

Research studies on quality of life (QOL) discordance between cancer patients and family caregivers are limited, and the results are inconsistent. The objective of this study was to examine QOL discordance between patients and family caregivers in a hospice setting and to identify factors associated with the discordance. We enrolled 178 patient-family caregiver pairs from six tertiary hospital hospice palliative care units in South Korea in this cross-sectional study. To establish groupings based on patient and family caregiver QOL levels, we measured the QOL of patient and family caregiver pairs using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 for Palliative Care and the Caregiver QOL Index-Cancer, respectively. Pairs were categorized into the following three groups: both good QOL pairs, only poor patient QOL, and only poor family caregiver QOL. Factors associated with only poor patient or only poor family caregiver QOL were compared to both good QOL pairs. A stepwise multivariate regression model was used to identify relevant factors. The QOL of family caregivers did not correlate significantly (P = 0.227) with QOL in terminally ill cancer patients. As well, poor emotional function in patients was the only significant factor associated with the only poor patient QOL group [adjusted odds ratio (aOR), 4.1; 95 % confidence interval (CI), 1.5-11.5]. However, emotionally distressed family caregivers (aOR, 10.2; 95 % CI, 2.8-37.5), family caregivers who professed a religion (aOR, 4.1; 95 % CI, 1.5-11.3), and family caregivers with low social support (aOR, 3.9; 95 % CI, 1.5-10.6) were independent predictors for the only poor family caregiver QOL group. Assessing the respective emotional status of both the patient and family caregiver is needed in hospice care to reduce the gap in QOL between the two groups. Further, more attention should be paid to the lack of social support for family caregivers.

Attitudes Toward Family Involvement in Cancer Treatment Decision Making: The Perspectives of Patients, Family Caregivers, and Their Oncologists.

PubMed

Shin, Dong Wook; Cho, Juhee; Roter, Debra L; Kim, So Young; Yang, Hyung Kook; Park, Keeho; Kim, Hyung Jin; Shin, Hee-Young; Kwon, Tae Gyun; Park, Jong Hyock

2017-06-01

To investigate how cancer patients, family caregiver, and their treating oncologist view the risks and benefits of family involvement in cancer treatment decision making (TDM) or the degree to which these perceptions may differ. A nationwide, multicenter survey was conducted with 134 oncologists and 725 of their patients and accompanying caregivers. Participant answered to modified Control Preferences Scale and investigator-developed questionnaire regarding family involvement in cancer TDM. Most participants (>90%) thought that family should be involved in cancer TDM. When asked if the oncologist should allow family involvement if the patient did not want them involved, most patients and caregivers (>85%) thought they should. However, under this circumstance, only 56.0% of oncologists supported family involvement. Patients were significantly more likely to skew their responses toward patient rather than family decisional control than were their caregivers (P < .003); oncologists were more likely to skew their responses toward patient rather than family decisional control than caregivers (P < .001). Most respondents thought that family involvement is helpful and neither hamper patient autonomy nor complicate cancer TDM process. Oncologists were largely positive, but less so in these ratings than either patients or caregivers (P < .002). Patients, family caregivers, and, to a lesser degree, oncologists expect and valued family involvement in cancer TDM. These findings support a reconsideration of traditional models focused on protection of patient autonomy to a more contextualized form of relational autonomy, whereby the patient and family caregivers can be seen as a unit for autonomous decision. Copyright © 2016 John Wiley & Sons, Ltd.

Caregiving experiences of family members of persons with dementia in south India.

PubMed

Narayan, Suzanne M; Varghese, Mathew; Hepburn, Kenneth; Lewis, Marsha; Paul, Isabel; Bhimani, Rozina

2015-08-01

This study reports on the first phase of an investigation aimed at adapting The Savvy Caregiver program, a successful family caregiving curriculum developed in the United States, for application in South India. Thirty family members caring for a person with dementia were interviewed regarding their experiences as caregivers (CGs). Qualitative interviews were conducted with the family member at a geriatric clinic, while other diagnostic procedures were being carried out with the person with dementia. Findings from the study revealed that although family members understood the term CG, none could identify a word for CG in his or her language. There was little understanding of dementia as an illness. Family CGs reported feeling distressed, overwhelmed, and frustrated with caregiving. Caregivers were interested in an educational program, but many had unrealistic expectations for what they wanted to learn. The findings provide directions for adapting The Savvy Caregiver curriculum for Indian family CGs. © The Author(s) 2015.

"I'm just trying to cope for both of us": Challenges and supports of family caregivers in participant-directed programs.

PubMed

Milliken, Aimee; Mahoney, Ellen K; Mahoney, Kevin J; Mignosa, Kate; Rodriguez, Isabella; Cuchetti, Catherine; Inoue, Megumi

2018-05-17

Recently, national attention has focused on the needs of family caregivers providing complex chronic care, noting the necessity to better understand the scope of challenges they encounter. Although a robust body of literature exists about the scope of family caregiving, little is known specifically about the experiences and perspectives of family caregivers who support participant directed (PD) participants, particularly across the caregiving trajectory. Therefore, the aim of this qualitative descriptive study was to describe what family caregivers of individuals with developmental disabilities, physical disabilities, aging, or chronic health conditions identify as the challenges they experience as complex, and their perceptions of the effectiveness and gaps in family support resources in PD. Semi-structured interviews were audio-recorded with a purposive sample of caregivers. Transcribed interviews were analyzed using conventional content analysis. Fifty-four caregivers of individuals with a range of disabilities participated (age 34-78, M 59.9 ± 8.8; male 19%; spouse 17%, parent 61%). Six categories emerged from the analysis: contextualizing complexity, complexity in transitions, coping with complexity: advocacy & isolation, supportive support, unsupportive support, and systems challenges. Caregivers emphasized the interplay between unpredictability, transitions, and complexity and the interaction between the person receiving support, the caregiver's own situation, and the environment. Findings highlight the need, and provide a guide, for family assessment and for tailoring interventions matched to the profiles and self-identified challenges of families living with disability. Social workers can learn what families see as complex and what support broker behaviors families find helpful, and which not.

Pediatric SCI/D caregiver mental health and family dynamics in Colombia, South America.

PubMed

Doyle, Sarah T; Perrin, Paul B; Nicholls, Elizabeth; Olivera, Silvia Leonor; Quintero, Lorena Medina; Otálvaro, Nadezda Yulieth Méndez; Arango-Lasprilla, Juan Carlos

2016-01-01

This study examined the connections between family dynamics and the mental health of caregivers of youth with spinal cord injuries/disorders (SCI/D) caregivers from Colombia, South America. It was hypothesized that lower family functioning would be associated with poorer caregiver mental health. A cross-sectional study of self-report data collected from caregivers through the Hospital Universatario Hernando Moncaleano Perdomo in Neiva, Colombia. Thirty caregivers of children with SCI/D from Nevia, Colombia who were a primary caregiver for ≥3 months, providing care for an individual who was ≥6 months post-injury/diagnosis, familiar with the patient's history, and without neurological or psychiatric conditions. Caregivers' average age was 41.30 years (SD = 10.98), and 90% were female. Caregivers completed Spanish versions of instruments assessing their own mental health and family dynamics. Family dynamics explained 43.2% of the variance in caregiver burden and 50.1% of the variance in satisfaction with life, although family dynamics were not significantly associated with caregiver depression in the overall analysis. Family satisfaction was the only family dynamics variable to yield a significant unique association with any index of caregiver mental health (satisfaction with life). If similar findings emerge in future intervention research, interventions for pediatric SCI/D caregivers in Colombia and other similar global regions could benefit from including techniques to improve family dynamics, especially family satisfaction, given the strong potentially reciprocal connection between these dynamics and caregiver mental health. The degree of disability resulting from SCI/D can vary greatly depending on the severity and level of the lesion, though permanent impairment is often present that profoundly impacts both physical and psychological functioning. Very little is known about the impact of pediatric SCI/D in developing countries, despite the high rates of

Caregiving burden and the quality of life of family caregivers of cancer patients: the relationship and correlates.

PubMed

Rha, Sun Young; Park, Yeonhee; Song, Su Kyung; Lee, Chung Eun; Lee, Jiyeon

2015-08-01

Family caregivers of cancer patients become responsible for many elements of cancer care, usually without preparation or training in provision of care. Their efforts of care generate caregiving burden, which could deteriorate caregivers' quality of life (QOL). A secondary data analysis of a cross-sectional descriptive study was conducted to describe the influence of caregiving burden on the QOL of family caregivers of cancer patients with consideration of correlates (N = 212). The Korean versions of Zarit Burden Interview and the World Health Organization QOL BREF were used. Multiple regression analyses were applied to analyze the relationship between the caregiving burden and QOL. Caregiving burden explained 30.3% of variance of the QOL (β = -0.534, p < 0.001). Caregivers caring for patients with functional deterioration experienced higher burden. Caregivers providing care for hospitalized patients demonstrated lower QOL. The caregiver's educational level was a positively contributing factor for the QOL. Caregiving burden was the influential, negatively affecting factor for the QOL. Assessment of caregiving burden with special attention being paid to caregivers caring for patients with functional decline would help to identify caregivers in need of support. Supportive care needs to be sought to alleviate caregiving burden and improve the QOL of caregivers, especially for the caregivers of hospitalized patients. Copyright © 2015 Elsevier Ltd. All rights reserved.

The Effects of Caregiving Resources on Perceived Health among Caregivers.

PubMed

Hong, Michin; Harrington, Donna

2016-08-01

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

Communication between nurses and family caregivers of hospitalised older persons: a literature review.

PubMed

Bélanger, Louise; Bourbonnais, Anne; Bernier, Roxanne; Benoit, Monique

2017-03-01

To review the literature concerning the feelings, thoughts and behaviours of nurses and family caregivers of hospitalised older persons when they communicate with one another. Communication between nurses and family caregivers of hospitalised older persons is not always optimal. Improving the frequency and quality of this communication might be a way to make the most of available human capital in order to better care for hospitalised older people. A literature review was carried out of qualitative, quantitative and mixed-design studies relating to communication between nurses and family caregivers. Findings were analysed thematically. Family caregiver thoughts, feelings and behaviours relative to nurse control and authority, nurse recognition of their contribution, information received from and shared with nurses and care satisfaction could influence communication with nurses. Nurse thoughts regarding usefulness of family caregivers as care partners and their lack of availability to meet family caregiver demands could influence communication with family caregivers. The thoughts, feelings and behaviours of family caregivers and nurses that might create positive or negative circular patterns of communication are evidenced. Further research is required to gain a more comprehensive understanding of the phenomenon. Nurses must be trained in how to communicate with family caregivers in order to form a partnership geared to preventing complications in hospitalised older persons. Results could be used to inform policy regarding the care of hospitalised older persons. © 2016 John Wiley & Sons Ltd.

Filming the family: a documentary film to educate clinicians about family caregivers of patients with brain tumors.

PubMed

Rabow, Michael W; Goodman, Steffanie; Chang, Susan; Berger, Mitchel; Folkman, Susan

2010-06-01

The objective of this paper is to evaluate the educational value of a documentary film about family caregiving for patients with brain tumors. The method used in this study is a pre-post survey among neurosurgeons, neuro-oncologist, and other clinician viewers. Viewers evaluated the film highly and reported an intention to change their practice as a result of watching the film. Following viewing, participants felt more strongly that "all families of patients with brain cancers should meet with a social worker" (P = 0.01) and that "family caregivers greatly impact the health of patients" (P = 0.002), and they were less likely to believe that "supporting family caregivers is primarily someone else's job" (P = 0.009). A documentary film about family caregiving is an effective educational tool to increase awareness among neurosurgery/neuro-oncology clinicians about the importance and needs of family caregivers of patients with brain tumors.

Empowerment of family caregivers of adults and elderly persons: A concept analysis.

PubMed

Sakanashi, Sayori; Fujita, Kimie

2017-10-01

This concept analysis defined and described the components of empowerment of family caregivers who care for adults and the elderly. Rodgers evolutionary method of concept analysis was used. Data sources included Pub Med, CINAHL, Scopus, and Igaku Chuo Zasshi. Thirty articles published between 1995 and 2015 focusing on the empowerment of family caregivers providing care to adults and the elderly were selected. The analysis reveals 6 attributes, 5 antecedents, and 5 consequences. In addition, the results reveal structured aspects of family caregivers, care receivers, and other people surrounding them, and their relationships. Empowerment of adults' and elders' family caregivers may be defined as "positive control of one's mind and body, cultivating a positive attitude, proactively attempting to understand one's role as a caregiver to improve caregiving capabilities, focusing on others as well as oneself, supporting the independence of the care receiver, and creating constructive relationships with other people surrounding them." The components of empowerment clarified in this research can be used for the measurement of and interventions aimed at improving empowerment among family caregivers. Furthermore, clarifying the definition of empowerment among family caregivers enables researchers to better distinguish empowerment from similar concepts in the future. © 2017 John Wiley & Sons Australia, Ltd.

Living With Hepatocellular Carcinoma Near the End of Life: Family Caregivers' Perspectives.

PubMed

Hansen, Lissi; Rosenkranz, Susan J; Wherity, Kathleen; Sasaki, Anna

2017-09-01

To explore family caregivers' perspectives of caring for patients with terminal hepatocellular carcinoma (HCC) as patients approached the end of life.
. Longitudinal, qualitative descriptive design.
. Oregon Health and Science University in Portland and Veterans Affairs Portland Health Care System in Oregon.
. 13 family caregivers with a mean age of 56 years (range = 22-68 years). The majority of family caregivers were female (n = 10) and identified as White (n = 11).
. Interview data were collected from family caregivers once a month for as many as six months, for a total of 39 interviews. Data were analyzed using conventional content analysis.
. Five core categories and nine subcategories were identified. From the time of the terminal diagnosis to the end of life, family caregivers felt unprepared, uncertain, and in need of information. They struggled with whether symptoms were HCC- or cirrhosis-related.
. Nurses can support family caregivers by eliciting their knowledge and concerns, and attending to symptom presentation and interpretation and to treatment challenges. Understanding challenges caregivers experience is crucial for developing interventions that address their desire for information, support, and help along the HCC disease trajectory.
. Nurses play a critical role in preparing caregivers to understand the importance of pain assessment and management and early referral to palliative care.

Characteristics and Correlates of Caregivers' Perceptions of Their Family Members' Memory Loss.

PubMed

Yu, Hairong; Lingler, Jennifer H; Sereika, Susan M; Erlen, Judith A

Understanding caregiver's perceptions of their family member's memory loss is a necessary step in planning nursing interventions to detect and address caregiver burden. The purpose of this study was to characterize caregivers' perceptions of their family members' memory loss and identify potential correlates within Leventhal's common sense model (CSM). This secondary analysis used baseline data from a larger randomized controlled trial. Patients with memory loss and their caregivers (N = 83 dyads) from the community were included. The adapted Brief Illness Perception Questionnaire (BIPQ) assessed caregivers' illness perceptions. Eight additional instruments measured correlates within the CSM. Responses were described; multiple linear regression was used to predict BIPQ dimension scores, and logistic regression was used to predict dichotomized BIPQ scores. Most caregivers were female, White, and spouses of the patients; they reported a range of perceptions on the nine BIPQ dimensions. Patients' cognitive function consistently emerged as a significant correlate of caregivers' illness perceptions, explaining the most variance in caregivers' perceived consequences, identity, and treatment control (p < .01). Caregivers' reactions to patients' behavioral symptoms and caregivers' trait anxiety were associated with perceived illness coherence (p < .01). Caregivers with higher severity of daily hassles and White caregivers perceived that their family members' memory loss would last longer (p < .001). Caregivers' perceptions of family members' memory loss varied; distinct dimensions of caregivers' illness perception were associated with a range of clinical and psychosocial factors. This exploratory study demonstrates the complexity of applying the CSM to caregivers of persons with memory loss.

Family caregivers' narratives of mental health treatment usage processes by their Latino adult relatives with serious and persistent mental illness.

PubMed

Marquez, Jorge A; Ramírez García, Jorge I

2013-06-01

Family caregivers' views and experiences related to treatment usage processes by their adult relatives with serious and persistent mental illness (SPMI) were empirically examined in a sample of Latino caregivers (n = 17) who were users of services at the National Alliance on Mental Illness (NAMI) in a predominantly Latino- (80%) and Mexican-descent large city in the Southwest United States. We conducted a stability check of qualitative findings with a second sample of Latino caregivers with no exposure to NAMI (n = 15). Overall, the combined sample (N = 32) compared similarly with larger samples of Latino adults and caregivers in quantitative measures of acculturation, familism, caregiver stigma, and depression symptoms. Together, caregivers' stigma and cultural beliefs, such as vergüenza (shame), use of folk healers, and lack of insurance, were major reported barriers to service usage. Family support (and lack of) for treatment also weighed heavily as a facilitator (and a barrier) of service usage, thus highlighting the complexity of family relationship contexts. Substantial portions of caregivers reported that treatment initiation was prompted by psychiatric hospitalization (50%), and that positive experiences with service providers were influential in treatment retention (72%). Given the high levels of family involvement reported among Latino caregivers, the findings underscore the potential role of family caregivers in treatment engagement and retention. Future research is needed that examines family caregivers' role in treatment with models that consider the interplay between cultural background, family level relationships, and service system contexts. PsycINFO Database Record (c) 2013 APA, all rights reserved.

Dialysis modality preference of patients with CKD and family caregivers: a discrete-choice study.

PubMed

Morton, Rachael L; Snelling, Paul; Webster, Angela C; Rose, John; Masterson, Rosemary; Johnson, David W; Howard, Kirsten

2012-07-01

Dialysis modality preferences of patients with chronic kidney disease (CKD) and family caregivers are important, yet rarely quantified. Prospective, unlabeled, discrete-choice experiment with random-parameter logit analysis. Adults with stages 3-5 CKD and caregivers educated about dialysis treatment options from 8 Australian renal clinics. Preferences for and trade-offs between the dialysis treatment attributes of life expectancy, number of hospital visits per week, ability to travel, hours per treatment, treatment time of day, subsidized transport service, and flexibility of treatment schedule. Results presented as ORs for preferring home-based or in-center dialysis to conservative care. 105 predialysis patients and 73 family caregivers completed the study. Median patient age was 63 years, and mean estimated glomerular filtration rate was 18.1 (range, 6-34) mL/min/1.73 m(2). Median caregiver age was 61 years. Home-based dialysis (either peritoneal or home hemodialysis) was chosen by patients in 65% of choice sets; in-center dialysis, in 35%; and conservative care, in 10%. For caregivers, this was 72%, 25%, and 3%, respectively. Both patients and caregivers preferred longer rather than shorter hours of dialysis (ORs of 2.02 [95% CI, 1.51-2.70] and 2.67 [95% CI, 1.85-3.85] for patients and caregivers, respectively), but were less likely to choose nocturnal than daytime dialysis (ORs of 0.07 [95% CI, 0.01-0.75] and 0.03 [95% CI, 0.01-0.20]). Patients were willing to forgo 23 (95% CI, 19-27) months of life expectancy with home-based dialysis to decrease their travel restrictions. For caregivers, this was 17 (95% CI, 16-18) patient-months. Data were limited to stated preferences rather than actual choice of dialysis modality. Our study suggests that it is rare for caregivers to prefer conservative nondialytic care for family members with CKD. Home-based dialysis modalities that enable patients and their family members to travel with minimal restriction would be

Quality of life in Chinese family caregivers for elderly people with chronic diseases.

PubMed

Xie, Hui; Cheng, Cheng; Tao, Yisheng; Zhang, Jie; Robert, Delprino; Jia, Jihui; Su, Yonggang

2016-07-06

Inadequate studies have been conducted in China to examine quality of life in family caregivers. Quality of life in family caregivers for elderly people with chronic diseases was evaluated, and the demographic and characteristic factors of both elderly people and their caregivers were explored. The 36-Item Short Form Health Survey (SF-36) was used to assess health-related quality of life in 407 family caregivers caring for elderly people with chronic diseases in six communities on the Mainland China. The explanatory variables included family caregivers' demographic and other caregiving variables related to eldercare. Descriptive statistics and multiple linear regression analysis were used in the data analysis, performed via SPSS 17.0. Mean SF-36 and physical and mental component scores were 66.14 ± 17.50, 70.06 ± 16.49, and 62.22 ± 18.51, respectively. The scores of caregivers' physical function and bodily pain were significantly higher, while the scores of caregivers' role limitations due to physical problems, general health, vitality, social function, mental health and role limitations due to emotional problems were significantly lower. Caregivers' ages, comorbidity, the perceived effects of caregiving on caregivers' social lives and elderly individuals' ages, marital status and Activities of Daily Living scores were significantly associated with the physical component score. In addition, caregivers' age, the affordability of the elderly person's healthcare expenses, the perceived effects of caregiving on caregivers' social lives, and elderly people's marital status and ADL scores were significantly associated with the mental component score. Family caregivers for elderly people with chronic diseases showed poorer mental and better physical well-being. Factors of both elderly people and their caregivers impact the caregivers' quality of life. These findings highlight the importance of addressing mental health of family caregivers, and of providing

The vulnerability of family caregivers in relation to vulnerability as understood by nurses.

PubMed

Sarvimäki, Anneli; Stenbock-Hult, Bettina; Sundell, Eija; Oesch-Börman, Christine

2017-03-01

In Finland, the care of older persons is shifting from institutional care to family care. Research shows that family caregivers experience their situation much in the same way as professional nurses. The nurses' experiences have been studied in terms of vulnerability, and the same perspective could deepen our understanding of family caregivers' experiences. The aim of this study was to gain knowledge of the vulnerability of older caregivers taking care of an ageing family member. The research questions were as follows: How do family caregivers experience vulnerability? How do their experiences relate to vulnerability as understood by nurses? The study was done as a secondary analysis of focus group interviews on the experiences and daily life of older family caregivers. Four caregivers had taken part in monthly interviews during a period of 10 months. The interviews were analysed by deductive and inductive content analysis. The results showed that the caregivers saw caregiving as part of being human. They experienced a variety of feelings and moral agony and were harmed physically, mentally and socially. They showed courage, protected themselves and recognised that being a caregiver also was a source of maturing and developing. These results corresponded with the nurses' understanding of vulnerability. Shame, the experience of duty as a burden, worry and loneliness were themes that were found only among the family caregivers. The use of a matrix may have restricted the analysis, but using it in an unconstrained way allowed for new themes to be created. The results indicate a common humanness and vulnerability in professional and family caregiving. They also show that family caregivers need more support both from society and professionals. © 2016 Nordic College of Caring Science.

Culture, role conflict and caregiver stress: The lived experiences of family cancer caregivers in Nairobi.

PubMed

Githaiga, Jennifer Nyawira

2017-10-01

This article explores the experiences of a small group of Nairobi women caring for a family cancer patient at home. On the basis of literature on women as caregivers in Africa, and on other literature more broadly, it was anticipated that issues around generational roles, gender and women's cultural role would be relevant. Seven women participated in semi-structured in-depth interviews, while thirteen women participated in four mini focus groups. Data were analysed using interpretative phenomenological analysis. Findings underscore the socio-cultural complexities of caregiving as a basis for evidence-based culturally appropriate structures to support family caregivers.

Strategies for sustaining self used by family caregivers for older adults with dementia.

PubMed

Bull, Margaret J

2014-06-01

The negative health consequences of caring for an older adult family member with dementia are well documented. However, not all family caregivers experience these negative health consequences. The purposes of this study were to describe strategies family caregivers use to help them continue to provide care for an older family member with dementia despite challenges and describe these family caregivers' resilience and psychological distress. A mixed methods design was used with a narrative approach dominant and standardized scales for resilience and psychological distress used to enhance the description of the sample. Data were collected through telephone interviews with 18 family caregivers residing in an urban area. The findings indicate that family caregivers used four strategies to sustain the self: drawing on past life experiences, nourishing the self, relying on spirituality, and seeking information about dementia. Understanding strategies used by family caregivers to sustain themselves is essential for providing holistic nursing care and developing effective interventions.

Discussion and Recommendations: Nurses and Social Workers Supporting Family Caregivers

ERIC Educational Resources Information Center

Lewis, Laurie

2008-01-01

Family members--whether people related by birth and marriage or friends and neighbors (sometimes called a "family of choice")--are the main caregivers for millions of older Americans. These family caregivers assist those they care for with activities of daily living such as bathing and dressing, with instrumental activities of daily living such as…

Determinants of patient-family caregiver congruence on preferred place of death in taiwan.

PubMed

Tang, Siew Tzuh; Chen, Cheryl Chia-Hui; Tang, Woung-Ru; Liu, Tsang-Wu

2010-08-01

Patient-family caregiver congruence on preferred place of death not only increases the likelihood of dying at home but also contributes significantly to terminally ill cancer patients' quality of life. To examine the determinants of patient-family caregiver congruence on the preferred place of death in Taiwan. Patient-family caregiver dyads (n=1,108) were surveyed on preferences and needs for end-of-life (EOL) care. Determinants of congruence on preferences were identified by multivariate logistic regression. Patient-caregiver dyads achieved 78.1% agreement on the preferred place of death. The kappa coefficient of congruence was 0.55 (95% confidence interval [CI]=0.50, 0.60). The extent of patient-family caregiver congruence on preferred place of death increased with the patient's higher functional dependence (adjusted odds ratio [AOR] and 95% CI=1.04 [1.02, 1.05]), higher patient-rated importance for dying at preferred place of death (AOR [95% CI]=1.60 [1.43, 1.79]), and having a spousal caregiver (AOR [95% CI]=1.62 [1.14, 2.31]). Other determinants of patient-family caregiver congruence included patient age (AOR [95% CI]=1.01 [1.00, 1.03]), patient-family concordance on preferred EOL care options (AOR=1.68-1.73), patient knowledge of prognosis (AOR [95% CI]=0.68 [0.48, 0.97]), and impact of caregiving on the family caregiver's life (AOR [95% CI]=0.98 [0.96, 0.99]). Increasing patient-family congruence on preferred place of death not only requires knowledge of the patient's prognosis and advance planning by both parties but also depends on family caregivers endorsing patient preferences for EOL care options and ensuring that supporting patients dying at home does not create an intolerable burden for family caregivers. Copyright (c) 2010 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Filming the Family: A Documentary Film to Educate Clinicians about Family Caregivers of Patients with Brain Tumors

PubMed Central

Goodman, Steffanie; Chang, Susan; Berger, Mitchel; Folkman, Susan

2010-01-01

The objective of this paper is to evaluate the educational value of a documentary film about family caregiving for patients with brain tumors. The method used in this study is a pre–post survey among neurosurgeons, neuro-oncologist, and other clinician viewers. Viewers evaluated the film highly and reported an intention to change their practice as a result of watching the film. Following viewing, participants felt more strongly that “all families of patients with brain cancers should meet with a social worker” (P = 0.01) and that “family caregivers greatly impact the health of patients” (P = 0.002), and they were less likely to believe that “supporting family caregivers is primarily someone else's job” (P = 0.009). A documentary film about family caregiving is an effective educational tool to increase awareness among neurosurgery/neuro-oncology clinicians about the importance and needs of family caregivers of patients with brain tumors. PMID:20352399

Mental health literacy in family caregivers: A comparative analysis.

PubMed

Mehrotra, Kanika; Nautiyal, Snigdha; Raguram, Ahalya

2018-01-01

The present study was undertaken to examine the current level of mental health literacy in family caregivers and to compare the changes over a 23-year period between 1993 and 2016. The current sample consisted of 60 family caregivers of patients with major mental illness from the in-patient and out-patient departments of NIMHANS, assessed on the Orientation towards Mental Illness Scale (OMI). This was compared with data of 80 family caregivers from previous study done in 1993. Family caregivers in the current study showed a significant positive trend on comparison with the previous study. However, area of abnormal behaviour shows a worsening of negative attitudes. Hopelessness and hypo-functioning, relating to the factor of after-effects of mental illness show no significant difference. While knowledge about mental illnesses can be improved by providing information, this does not automatically translate to integration of the mentally ill in society. Current initiatives need to be matched with specific and sustained efforts to reduce stigma associated with mental illness which have persisted unchanged. Copyright © 2018 Elsevier B.V. All rights reserved.

Family Caregivers in Cancer (PDQ®)—Patient Version

Cancer.gov

Family caregivers help many cancer patients receive part of their care at home and have an important role in the patient's health and quality of life. Learn more about caregiver roles, concerns, and challenges in this expert-reviewed summary.

Caregiver Action Network

MedlinePlus

... for November’s National Family Caregivers Month each year. This year’s theme is “Caregiving Around the Clock”. Caregiving for ... wife’s stroke, I handle everything.” “It’s been 10 years and I don’t know how much longer I can do this.” We CAN help you manage the many challenges ...

Understanding How to Support Family Caregivers of Seniors with Complex Needs.

PubMed

Charles, Lesley; Brémault-Phillips, Suzette; Parmar, Jasneet; Johnson, Melissa; Sacrey, Lori-Ann

2017-06-01

The purpose of this study was to describe the experiences and challenges of supporting family caregivers of seniors with complex needs and to outline support strategies and research priorities aimed at supporting them. A CIHR-funded, two-day conference entitled "Supporting Family Caregivers of Seniors: Improving Care and Caregiver Outcomes" was held. An integrated knowledge translation approach guided this planning conference. Day 1 included presentations of research evidence, followed by participant engagement Qualitative data was collected regarding facilitators, barriers/gaps, and recommendations for the provision of caregiver supports. Day 2 focused on determination of research priorities. Identified facilitators to the provision of caregiver support included accessibility of health-care and community-based resources, availability of well-intended health-care providers, and recognition of caregivers by the system. Barriers/gaps related to challenges with communication, access to information, knowledge of what is needed, system navigation, access to financial resources, and current policies. Recommendations regarding caregiver services and research revolved around assisting caregivers to self-identify and seek support, formalizing caregiver supports, centralizing resources, making system navigation available, and preparing the next generation for caregiving. A better understanding of the needs of family caregivers and ways to support them is critical to seniors' health services redesign.

Caregiver Substance Abuse and Children’s Exposure to Violence in a Nationally Representative Child Welfare Sample

PubMed Central

Seay, Kristen D.; Kohl, Patricia

2012-01-01

Using data from the National Survey of Child and Adolescent Well-Being II (NSCAW II), this article examines the impact of caregiver substance abuse on children’s exposure to violence in the home in a nationally representative sample of families involved with child protective services (CPS). Logistic regression analyses indicate an increased risk of witnessing mild and severe violence in the home for children whose primary caregiver was abusing alcohol or drugs. However, analyses did not find statistically significant relationships between child report of direct victimization in the home by mild or severe violence and caregiver alcohol or drug abuse. PMID:23440502

Living with schizophrenia: Health-related quality of life among primary family caregivers.

PubMed

Hsiao, Chiu-Yueh; Lee, Chun-Te; Lu, Huei-Lan; Tsai, Yun-Fang

2017-12-01

To examine influencing factors of health-related quality of life in primary family caregivers of people with schizophrenia receiving inpatient psychiatric rehabilitation services. Families, particularly primary family caregivers, have become more important than ever in mental health care. Yet, research on health-related quality of life among primarily family caregivers is limited. A correlational study design was used. A convenience sample of 122 primary family caregivers participated in the study. Data were analysed with descriptive statistics, Pearson's product-moment correlation, t test, one-way analysis of variance and a hierarchical multiple regression analysis. Primary family caregivers who were parents, older, less educated, and had a lower monthly household income, increased affiliate stigma and decreased quality of family-centred care experienced poor health-related quality of life. Particularly, monthly household income, affiliate stigma and quality of family-centred care appeared to be the most critical determinants of health-related quality of life. Efforts to enhance satisfaction of life should focus on reducing affiliate stigma as well as increasing monthly household income and strengthening the quality of family-centred care. Findings may assist in the development of culturally integrated rehabilitation programmes to decrease affiliate stigma and increase family engagement as a means of promoting quality of life for primary family caregivers living with people who have schizophrenia. © 2017 John Wiley & Sons Ltd.

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

PubMed

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

2016-10-28

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

The Melbourne Family Support Program: evidence-based strategies that prepare family caregivers for supporting palliative care patients.

PubMed

Hudson, Peter; Aranda, Sanchia

2014-09-01

A key component of palliative care is support for family caregivers. Although some family caregivers identify positive aspects, the impact is typically burdensome; they are prone to physical and psychological morbidity, financial disadvantage and social isolation. Outcomes of systematic reviews have highlighted the importance of investment in family caregiver intervention research. To provide an overview of the development, evaluation and outcomes arising from of a programme of research (The Melbourne Family Support Program (FSP)), which focused on reducing the psychosocial burden of family caregivers. Developmental work involved a systematic literature review; focus groups with family caregivers and health professionals; and identification of a conceptual framework. Following a pilot randomised controlled trial (RCT), a programme of psychoeducational intervention studies was developed and tested; one via RCT, the others via prepost test. Four psychoeducational interventions, incorporating one-to-one and group format delivery, conducted in both the home and inpatient hospital/hospice were evaluated. Statistically significant outcomes included improvements in family caregivers' preparedness, competence, positive emotions, more favourable levels of psychological wellbeing and a reduction in unmet needs. Internationally endorsed guidelines for the psychosocial support of family caregivers were produced and several resources were constructed. Fifteen publications in international peer-reviewed journals have arisen from this programme. The interventions and resources from the Melbourne FSP provide several evidenced-based and clinically relevant approaches that focus on reducing the psychosocial burden of the caregiving role. In several instances, however, more rigorous methodological testing is advocated. 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.

South Korean Family Caregiver Involvement in Delirium Care: A Qualitative Descriptive Study.

PubMed

Kang, Yun; Moyle, Wendy; Cooke, Marie; O'Dwyer, Siobhan

2017-12-01

The current study aimed to describe the effect of an educational program on RN-initiated efforts to involve family caregivers in delirium care. A descriptive qualitative study was performed. A purposive sample of 12 RNs who participated in a one group, pre-post evaluation of a delirium educational program, and a nominated sample of six family caregivers of patients who had been cared for by RNs in the program participated in individual, in-depth interviews. The qualitative findings indicated that the inclusion of a delirium brochure in ward orientation on admission, with reinforcement during shift changes, and RN-initiated engagement with family caregivers promoted family caregiver involvement in delirium prevention. Further studies in South Korea are needed to determine which family-centered nursing care interventions are culturally appropriate and most effective for RNs and family caregivers in delirium care. [Journal of Gerontological Nursing, 43(12), 44-51.]. Copyright 2017, SLACK Incorporated.

Patients' and family caregivers' understanding of the cancer stage, treatment goal, and chance of cure: A study with patient-caregiver-physician triad.

PubMed

Shin, Dong Wook; Cho, Juhee; Kim, So Young; Yang, Hyung Kook; Park, Keeho; Kweon, Sun-Seog; Koh, Dai Ha; Nam, Hae-Sung; Park, Jong-Hyock

2018-01-01

Accurate understanding of the extent of disease, treatment goal, and prognosis is a prerequisite for patients with cancer and their caregivers to make informed decision. We sought to evaluate patients' and family caregivers' understanding of the cancer stage, treatment goal, and chance of cure taking their own physician's evaluation as reference. A national survey was performed with 750 patient-caregiver dyads (75.5% participation rate) recruited by 134 oncologists in 13 cancer centers (93% participation rate) in South Korea. Both patients and caregivers were asked to report their knowledge of patient's cancer stage, treatment goal, and chance of cure. Concordance was evaluated with percentage agreement and weighted κ, and predictors of discordance of patient and caregiver's response with that of physician's were explored by multivariate regression analyses with mixed effect model. The agreement rates between patient-physician and caregiver-physician were 63.0% and 65.9% for disease stage, 69.0% and 70.0% for treatment goal, and 41.4% and 45.1% for chance of cure. When discordance occurs, patients and caregivers often had an optimistic view. Distant stage, older age, female sex, and absence of depression were associated with optimistic view of patients, and there was significant between-physician variance for all 3 outcomes. The discordance revealed that our study suggests the need for better communication between physician and patients, as well as the caregivers. Research is needed to develop a comprehensive strategy to improve the understanding of the patients and family so that treatment decisions are made based on realistic estimation. Copyright © 2017 John Wiley & Sons, Ltd.

Role of the Lebanese family caregivers in cardiac self-care: a collective approach.

PubMed

Dumit, Nuhad Y; Abboud, Sarah; Massouh, Angela; Magilvy, Joan K

2015-11-01

The purpose of this study was to explore perceptions of cardiac self-care among Lebanese family caregivers of cardiac patients. The specific aims were to describe the cultural context of cardiac care-giving in Lebanon and to explore the roles of family caregivers in enhancing self-care practices in patients with cardiac diseases. The role of family caregivers in Lebanon, a country in the Middle East, is assumed to extend beyond care-giving to making decisions on behalf of the patient and assuming responsibility for patient care. To date, there has been no study done to empirically validate this impression. The design of the study is qualitative descriptive that used semi-structured individual interviews with family caregivers of Lebanese cardiac patients. Thirteen family caregivers of cardiac patients were recruited from a referral medical centre in Lebanon. The participants were designated by their patients and interviewed in a place of their choice. One overarching and three themes emerged from data analysis describing roles of family care givers in cardiac self-care. The overarching theme was: Family caregivers of Lebanese cardiac patients were unfamiliar with the term, concept and meaning of Self-Care. The moral and emotional duty to care for the family member stemmed from obligation and responsibility towards patients (theme I). Interdependent care (theme II) between cardiac patients and their families emerged as a significant cultural role. Family members play multiple supportive roles in care-giving namely emotional, informational and instrumental role (theme III). In this study, family caregiver role is shown to be based in the sense of obligation and duty towards the sick family member who collectively provide different types of supportive care. Nurses have to give significant importance to the family caregiver role as an integral part of any culturally sensitive patient/family intervention. © 2015 John Wiley & Sons Ltd.

Typical and Atypical Dementia Family Caregivers: Systematic and Objective Comparisons

ERIC Educational Resources Information Center

Nichols, Linda O.; Martindale-Adams, Jennifer; Burns, Robert; Graney, Marshall J.; Zuber, Jeffrey

2011-01-01

This systematic, objective comparison of typical (spouse, children) and atypical (in-law, sibling, nephew/niece, grandchild) dementia family caregivers examined demographic, caregiving and clinical variables. Analysis was of 1,476 caregivers, of whom 125 were atypical, from the Resources for Enhancing Alzheimer's Caregivers Health (REACH I and II)…

Caregiving Practice Patterns of Asian, Hispanic, and Non-Hispanic White American Family Caregivers of Older Adults Across Generations.

PubMed

Miyawaki, Christina E

2016-03-01

This study is a cross-sectional investigation of caregiving practice patterns among Asian, Hispanic and non-Hispanic White American family caregivers of older adults across three immigrant generations. The 2009 California Health Interview Survey (CHIS) dataset was used, and 591 Asian, 989 Hispanic and 6537 non-Hispanic White American caregivers of older adults were selected. First, descriptive analyses of caregivers' characteristics, caregiving situations and practice patterns were examined by racial/ethnic groups and immigrant generations. Practice patterns measured were respite care use, hours and length of caregiving. Three hypotheses on caregiving patterns based on assimilation theory were tested and analyzed using logistic regression and generalized linear models by racial/ethnic groups and generations. Caregiving patterns of non-Hispanic White caregivers supported all three hypotheses regarding respite care use, caregiving hours and caregiving duration, showing less caregiving involvement in later generations. However, Asian and Hispanic counterparts showed mixed results. Third generation Asian and Hispanic caregivers used respite care the least and spent the most caregiving hours per week and had the longest caregiving duration compared to earlier generations. These caregiving patterns revealed underlying cultural values related to filial responsibility, even among later generations of caregivers of color. Findings suggest the importance of considering the cultural values of each racial/ethnic group regardless of generation when working with racially and ethnically diverse populations of family caregivers of older adults.

Relationships between Caregiving Stress, Depression, and Self-Esteem in Family Caregivers of Adults with a Disability

PubMed Central

2017-01-01

This study aimed to examine the relationships between caregiving stress, depression, and self-esteem of family caregivers of an adult person with a disability and to identify their effects on their caregiving burden. The study was performed with 108 care providers of adult people with a disability who visited hospital rehabilitation centers. Caregiving stress showed a significant positive correlation with depression and with economic and psychological stress, and it showed a significant negative correlation with self-esteem. When the care provider was aged, female, and without a job and the caregiving cost and time were higher, the caregiving stress was high. When the care provider was female and had a lower income, the depression index was high. When the person with a disability was male and in the forties and the level of disability was higher, the caregiving stress was high. When the disability was related to spinal cord damage, the care provider's depression index was the highest. To reduce caregiving stress and depression in the family caregivers and to improve their self-esteem, continuous support and help from specialists are necessary. Additionally, a variety of intervention programs need to be designed to motivate them to participate regularly at the community level. PMID:29114184

[The internet as an information source for family caregivers of dementia patients].

PubMed

Grässel, Elmar; Bleich, Stefan; Meyer-Wegener, Klaus; Schmid, Ute; Kornhuber, Johannes; Prokosch, Hans-Ulrich

2009-04-01

What significance has the Internet as a source of information for family caregivers of dementia patients? In Middle Franconia (Germany), 391 family caregivers were requested to participate in a questionnaire-based postal survey about the significance of the Internet and other sources of information on dementia. The family caregivers in question were the relatives of patients of the Memory Clinic at Erlangen University Psychiatric Hospital, members of the Alzheimer's Society of Middle Franconia or the Nuremberg Family Counselling Society. Younger and better-educated family caregivers more often own a computer with Internet access than older ones. The Internet is in 4th place on their list of sources of information. Although doctors are by far the most important source, counselling centres and literature are rated only just before the Internet. The Internet is particularly significant for the younger better-educated family caregivers, independent of gender, as a source of information on the diagnosis and treatment of dementia.

Caregiving to persons living with HIV/AIDS: experiences of Vietnamese family members.

PubMed

Lundberg, Pranee C; Doan, Thoa Thi Kim; Dinh, Thu Thi Xuan; Oach, Nhung Kim; Le, Phong Hoang

2016-03-01

To examine the experiences of caregiving among Vietnamese family members of persons living with HIV/AIDS. As the number of persons living with HIV/AIDS increases, the need of family caregivers who can take responsibility for the home care of these persons increases. Vietnam has one of the fastest growing HIV epidemics in Asia. A descriptive cross-sectional study with quantitative and qualitative methods was used. A purposive sample of 104 family caregivers, both male and female, participated voluntarily by answering a questionnaire of caregiver burden, and 20 of them participated in in-depth interview. Female caregivers were mainly mothers and wives while male caregivers were mainly husbands, fathers and siblings. The largest group of family caregivers reported moderate to severe burden. There was no difference between genders in total caregiver burden, but there were several differences between older and younger caregivers in some items of caregiver burden. Five categories of experiences emerged: Different types of caregiving to persons living with HIV/AIDS, cultural and religious issues associated with caregiving, keeping secret to avoid stigma and discrimination, lack of knowledge about disease and provision of care, and fear, anxiety and frustration. Stigma and discrimination should be decreased by providing knowledge to the general public about HIV/AIDS, in particular about ways of transmission and protection. Special knowledge should be given to family caregivers to enable them to give care to persons living with HIV/AIDS at home. This could be done through culturally appropriate training/intervention programmes in which coping methods should be included. Support group interventions should also be carried through. The results obtained can be used as baseline information. Health care providers should consider gender, age and culture of family members of persons living with HIV/AIDS. Knowledge about HIV/AIDS, provision of care at home and in hospital, and

Understanding How to Support Family Caregivers of Seniors with Complex Needs

PubMed Central

Charles, Lesley; Brémault-Phillips, Suzette; Parmar, Jasneet; Johnson, Melissa; Sacrey, Lori-Ann

2017-01-01

Purpose of the Study The purpose of this study was to describe the experiences and challenges of supporting family caregivers of seniors with complex needs and to outline support strategies and research priorities aimed at supporting them. Design and Methods A CIHR-funded, two-day conference entitled “Supporting Family Caregivers of Seniors: Improving Care and Caregiver Outcomes” was held. An integrated knowledge translation approach guided this planning conference. Day 1 included presentations of research evidence, followed by participant engagement Qualitative data was collected regarding facilitators, barriers/gaps, and recommendations for the provision of caregiver supports. Day 2 focused on determination of research priorities. Results Identified facilitators to the provision of caregiver support included accessibility of health-care and community-based resources, availability of well-intended health-care providers, and recognition of caregivers by the system. Barriers/gaps related to challenges with communication, access to information, knowledge of what is needed, system navigation, access to financial resources, and current policies. Recommendations regarding caregiver services and research revolved around assisting caregivers to self-identify and seek support, formalizing caregiver supports, centralizing resources, making system navigation available, and preparing the next generation for caregiving. Implication A better understanding of the needs of family caregivers and ways to support them is critical to seniors’ health services redesign. PMID:28690707

Violence Towards Family Caregivers by Their Relative with Schizophrenia in Japan.

PubMed

Kageyama, Masako; Solomon, Phyllis; Yokoyama, Keiko; Nakamura, Yukako; Kobayashi, Sayaka; Fujii, Chiyo

2018-06-01

There have been several violence-related deaths in Japan due to family violence by persons with severe mental illness against their caregivers. However, it is not often acknowledged that these violent acts are mainly directed at family members. This study aimed to clarify what acts of violence family caregivers experienced from their relative with schizophrenia, and how frequently these violent incidents occurred in their lifetime. We also examined caregivers' thoughts of death about themselves and their relatives, as well as their consultation efforts and escape from the violence perpetrated by their relative. Of the 277 caregivers, 87.7% had experienced psychological violence and 75.8% had experienced physical violence perpetrated by their relative. Of 210 caregivers who had experienced physical violence, 26.7% had thought of murder-suicide and 31.0% had wished for their relative's death. Family violence by persons with schizophrenia is not rare but a common occurrence in Japan and may have fatal consequences.

Feelings of burden among family caregivers of people with spinal cord injury in Turkey.

PubMed

Secinti, E; Yavuz, H M; Selcuk, B

2017-08-01

The study was designed as a cross-sectional survey. The purpose of the study was to examine the level of feelings of burden in family caregivers of people with spinal cord injury (SCI) in Turkey, and to explore its predictors. Turkey. One hundred family caregivers of people with SCI completed measures of burden of caregiving, depression, social support and physical health. The SCI participants completed a measure of functional independence. Multivariate statistics and structural equation modeling (SEM) were conducted to identify significant predictors of caregiver burden. Caregiver burden was significantly related to caregivers' feelings of depression. SEM analysis showed that social support from family and from friends predicted caregiver burden via depression. Caregivers' age, sex, educational level, physical health and household income did not significantly predict their feelings of depression or burden. Our findings revealed that support received from both families and friends is an important source for alleviating the depressive feelings of caregivers and, in return, their burden in the caregiving. In Turkey, high support from family members is expected and is important for psychological well-being, yet the current study showed that the support received from friends also has unique contribution to the well-being of the caregivers of persons with SCI. Overall, our findings highlight the importance of supportive relationships between family as well as friends for the caregivers who may have to provide lifetime care for their family member with special needs.

Anxiety, stress and depression in family caregivers of the mentally ill.

PubMed

Cabral, Lídia; Duarte, João; Ferreira, Manuela; dos Santos, Carlos

2014-11-01

The current policy guidelines on mental health aim to keep the mentally ill within the community, with the development of social support, including families, hence the emergence of the role of the family caregiver. To identify socio-demographic variables influencing anxiety, depression and stress for the informal caregivers of the mentally ill; to determine the influence of family background variables on caregiver anxiety, depression and stress; to analyse the relationship between social support and caregiver overload with caregiver anxiety, depression and stress. Cross-sectional, descriptive and correlational study with 104 caregivers, mostly female (62.5%), aged between 22 and 77 years with a mean age of 52.03 years. The following were used as instruments: the Family Apgar Scale; the Satisfaction with Social Support Scale (ESSS); the Caregiver Overload Scale (ESC); the Anxiety, Depression and Stress Scales (EADS-21). We found that females have higher rates (P<.05) of anxiety, depression and stress; participants with less education have more anxiety than those with higher and secondary education (P=.001); caregivers living in rural areas have higher levels of depression (P=.044) and stress (P=.041); those who perceive belonging to families with marked dysfunctions have higher levels of depression (P=.0.001) and stress (P=.000); the higher the overload, the higher the levels of anxiety (P=.002), depression and stress (P=.000). I tis necessary to develop strategies for local and community intervention to promote mental health and prevent mental illness. Copyright © 2014 Elsevier España, S.L.U. All rights reserved.

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

PubMed

Cil Akinci, Ayse; Pinar, Rukiye

2014-02-01

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

Typologies of Caregiving Families: Family Congruence and Individual Well-Being.

ERIC Educational Resources Information Center

Pruchno, Rachel A.; And Others

1997-01-01

Used data from 252 female primary caregivers, their husbands, and children to create family typologies based on the extent of similarities among reports of elder behaviors. Results indicate that families characterized by high agreement and those characterized by low agreement significantly differed from one another. Other findings are reported.…

The Role of Family Functioning in the Stress Process of Dementia Caregivers: A Structural Family Framework

ERIC Educational Resources Information Center

Mitrani, Victoria B.; Lewis, John E.; Feaster, Daniel J.; Czaja, Sara J.; Eisdorfer, Carl; Schulz, Richard; Szapocznik, Jose

2006-01-01

Purpose: The purpose of the study was to evaluate the role of family functioning in the stress process in a sample of caregivers of dementia patients by using a structural family framework. The stress-process model of caregiver distress included family functioning as an intervening variable in the relationship between objective burden and…

Hispanic Caregivers of Adults with Mental Retardation: Importance of Family Functioning

ERIC Educational Resources Information Center

Magana, Sandra; Schwartz, Seth J.; Rubert, Mark P.; Szapocznik, Jose

2006-01-01

Our aim in this study was to validate a stress-process model for Hispanic caregivers of adults with mental retardation that incorporates family functioning. The model postulates that maladaptive adult behaviors are related to poorer family relationships and higher levels of family burden, which in turn is related to caregiver psychological…

Delirium and the Family Caregiver: The Need for Evidence-based Education Interventions.

PubMed

Carbone, Meredith K; Gugliucci, Marilyn R

2015-06-01

Delirium, an acute confusional state, is experienced by many older adults. Although there is substantial research on risk factors and etiology, we hypothesized that there is a dearth of information on educating the family caregivers of delirious older patients. A date-specific (2000-2013) literature review of articles, written in English, was conducted in several major databases using keyword searches. This systematic review focused on 2 objectives: (1) investigate published studies on the impact of delirium on the family regarding caring for a loved one; and (2) determine if there are interventions that have provided family caregivers with education and/or coping skills to recognize and/or manage delirium. A systematic elimination provided outcomes that met both objectives. Thirty articles addressed impact on family caregivers (objective 1); only 7 addressed caregiver education regarding the delirious state of a loved one (objective 2). Few studies consider the impact of delirium on family caregivers and even fewer studies focus on how to manage delirium in loved ones. With increased risks to older adult patients, high cost of care, and the preventable nature of delirium, family caregiver education may be an important tactic to improve outcomes for both patient and caregiver. © The Author 2014. 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.

Putting theory to the test: Examining family context, caregiver motivation, and conflict in the Family Check-Up model

PubMed Central

Fosco, Gregory M.; Van Ryzin, Mark; Stormshak, Elizabeth A.; Dishion, Thomas J.

2014-01-01

This study examined contextual factors (caregiver depression, family resources, ethnicity, and initial levels of youth problem behavior) related to the effectiveness of the Family Check-Up (FCU) and evaluated family processes as a mediator of FCU intervention response and adolescent antisocial behavior. We followed a sample of 180 ethnically diverse youths of families who engaged in the FCU intervention. Family data were collected as part of the FCU assessment, and youth data were collected over 4 years, from sixth through ninth grade. Findings indicated that caregiver depression and minority status predicted greater caregiver motivation to change. In turn, caregiver motivation was the only direct predictor of FCU intervention response during a 1-year period. Growth in family conflict from sixth through eighth grade mediated the link between FCU response and ninth-grade antisocial behavior. This study explicitly tested core aspects of the FCU intervention model and demonstrated that caregiver motivation is a central factor that underlies family response to the FCU. The study also provided support for continued examination of family process mechanisms that account for enduring effects of the FCU and other family-centered interventions. PMID:24438894

Putting theory to the test: examining family context, caregiver motivation, and conflict in the Family Check-Up model.

PubMed

Fosco, Gregory M; Van Ryzin, Mark; Stormshak, Elizabeth A; Dishion, Thomas J

2014-05-01

This study examined contextual factors (caregiver depression, family resources, ethnicity, and initial levels of youth problem behavior) related to the effectiveness of the Family Check-Up (FCU) and evaluated family processes as a mediator of FCU intervention response and adolescent antisocial behavior. We followed a sample of 180 ethnically diverse youths of families who engaged in the FCU intervention. Family data were collected as part of the FCU assessment, and youth data were collected over 4 years, from sixth through ninth grade. Findings indicated that caregiver depression and minority status predicted greater caregiver motivation to change. In turn, caregiver motivation was the only direct predictor of FCU intervention response during a 1-year period. Growth in family conflict from sixth through eighth grade mediated the link between FCU response and ninth-grade antisocial behavior. This study explicitly tested core aspects of the FCU intervention model and demonstrated that caregiver motivation is a central factor that underlies family response to the FCU. The study also provided support for continued examination of family process mechanisms that account for enduring effects of the FCU and other family-centered interventions.

Caregiving by Teens for Family Members With Huntington Disease

PubMed Central

Williams, Janet K.; Ayres, Lioness; Specht, Janet; Sparbel, Kathleen; Klimek, Mary Lou

2016-01-01

The purpose of this report is to describe caregiving by teens for family members with Huntington disease (HD). Thirty-two teens in HD families in the United States and Canada participated in focus groups from 2002 to 2005 in a study to identify concerns and strategies to manage concerns. An unexpected finding was 24 (77%) described caregiving activities. Descriptive analysis of caregiving statements identified themes of Tasks and Responsibilities, Subjective Burden, Caregiving in Context of Personal Risk for HD, and Decisional Responsibility. Teens took an active part in nearly all aspects of care with the exception of contacting health care providers and attending doctors’ appointments. Some described emotional distress, and many provided care knowing they had the potential to develop HD. Teens recognized the need for decisions but lacked the authority to make these decisions. Findings may be relevant for other teens who strive to meet caregiver and student roles and developmental tasks. PMID:19465560

Linking family cohesion and flexibility with expressed emotion, family burden and psychological distress in caregivers of patients with psychosis: A path analytic model.

PubMed

Koutra, Katerina; Simos, Panagiotis; Triliva, Sofia; Lionis, Christos; Vgontzas, Alexandros N

2016-06-30

The present study aimed to evaluate a path analytic model accounting for caregivers' psychological distress that takes into account perceived family cohesion and flexibility, expressed emotion and caregiver's burden associated with the presence of mental illness in the family. 50 first-episode and 50 chronic patients diagnosed with schizophrenia or bipolar disorder (most recent episode manic severe with psychotic features) recruited from the Inpatient Psychiatric Unit of the University Hospital of Heraklion, Crete, Greece, and their family caregivers participated in the study. Family functioning was assessed in terms of cohesion and flexibility (FACES-IV), expressed emotion (FQ), family burden (FBS) and caregivers' psychological distress (GHQ-28). Structural equation modelling was used to evaluate the direct and indirect effects of family dynamics on caregivers' psychological distress. The results showed that neither family cohesion nor family flexibility exerted significant direct effects on caregivers' psychological distress. Instead, the effect of flexibility was mediated by caregivers' criticism and family burden indicating an indirect effect on caregivers' psychological distress. These results apply equally to caregivers of first episode and chronic patients. Family interventions aiming to improve dysfunctional family interactions by promoting awareness of family dynamics could reduce the burden and improve the emotional well-being of family caregivers. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

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

PubMed

Lee, Yeonjung; Tang, Fengyan

2015-06-01

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

Relationships between family resilience and posttraumatic growth in breast cancer survivors and caregiver burden.

PubMed

Liu, Ye; Li, Yuli; Chen, Lijun; Li, Yurong; Qi, Weiye; Yu, Li

2018-04-01

To examine the relationships between family resilience and posttraumatic growth (PTG) of breast cancer survivors and caregiver burden among principal caregivers in China. Participants in this cross-sectional study comprised 108 women aged 26 to 74 years (M = 49, SD = 9) with early-stage breast cancer and 108 principal caregivers. Participants were recruited from a comprehensive cancer center of a public hospital in Shandong Province, China. The principal caregivers completed the Shortened Chinese Version of the Family Resilience Assessment Scale and the Chinese Version of the Zarit Caregiver Burden Interview; patients completed the Short Form of the Posttraumatic Growth Inventory and questions designed to obtain sociodemographic information. Hierarchical regression analysis was conducted to assess the adjusted association between family resilience and PTG and caregiver burden, while controlling for sociodemographics. Families showed a slightly elevated level of family resilience since the cancer experience, and patients showed a moderate degree of PTG. Principal caregivers reported moderate burden. The Shortened Chinese Version of the Family Resilience Assessment Scale total score was positively related to the Short Form of the Posttraumatic Growth Inventory total score (β = .28, P < .01) and was negatively related to Zarit Caregiver Burden Interview total score (β = -.28, P < .01). Family resilience impacts PTG of breast cancer survivors and caregiver burden. Our findings indicated the necessity of interventions to facilitate family resilience, promote PTG among breast cancer survivors, and decrease family members' caregiver burden. Copyright © 2018 John Wiley & Sons, Ltd.

Intra-family stressors among adult siblings sharing caregiving for parents.

PubMed

Ngangana, Pamela C; Davis, Bertha L; Burns, Dorothy P; McGee, Zina T; Montgomery, Arlene J

2016-12-01

The aim of this study was to describe a Neuman Systems Model-guided study of perceptions of family stressors experienced by adult siblings who share caregiving for their parents and the influence of these stressors on adult siblings' relationships. The task of providing informal care for disabled parents is often shared by adult siblings. Family stressors experienced as part of caregiving may affect the sibling relationship. A mixed-method study design was used. Data were collected during 2013-2014 from 84 adult sibling caregivers. Seventy-two caregivers provided quantitative data for the Lifespan Sibling Relationship Scale and the Zarit Burden Scale and 79 provided qualitative data for the open-ended question. Adult siblings experienced mild-to-moderate levels of burden from family stressors when they share parental caregiving. The amount of burden from intra-family stressors was negatively related to the adult sibling relationship. Beneficial and noxious stressors were evident in the participants' responses to an open-ended question. The health of the parents affected the lives of adult siblings in both negative and positive ways. Although the majority of the adult siblings expressed a willingness to care for their parent(s) in an attempt to reciprocate the care, they had received from them, challenges emerged from dealing with family stressors. © 2016 John Wiley & Sons Ltd.

Quality of life of family caregivers of cancer patients in Singapore and globally.

PubMed

Lim, Haikel A; Tan, Joyce Ys; Chua, Joanne; Yoong, Russell Kl; Lim, Siew Eng; Kua, Ee Heok; Mahendran, Rathi

2017-05-01

Family caregivers of cancer patients often suffer from impaired quality of life (QOL) due to stress arising from the responsibility of caregiving. Most research on such QOL impairments was conducted in Western populations. Thus, this exploratory study sought to (a) examine the QOL levels of family caregivers of cancer patients in an Asian population in Singapore, in relation to caregivers from other countries within and outside of Asia; and (b) investigate the association between sociodemographic factors and QOL impairments in family caregivers in Singapore. A total of 258 family caregivers of cancer patients who were receiving outpatient treatment completed the Caregiver Quality of Life Index-Cancer (CQOLC) and a sociodemographic survey. We compared the published CQOLC total scores from Turkey, Iran, Taiwan, South Korea, the United Kingdom, the United States and Canada with the Singapore dataset and examined the demographic relationships. Caregivers in Singapore and Asia had lower CQOLC total scores than their Western counterparts. Caregivers who were male, of Chinese ethnicity, had parental relationships with their care recipient, or cared for advanced-stage cancer patients were found to have impaired QOL. The findings of this study highlight possible areas in which support can be provided for family caregivers of cancer patients, and underscore the need to reconcile cultural diversity, values, societal expectations and demographic characteristics in Singapore. Copyright: © Singapore Medical Association

Physical and Mental Health Effects of Family Caregiving

ERIC Educational Resources Information Center

Schulz, Richard; Sherwood, Paula R.

2008-01-01

The associations between physical and psychological health and being an informal caregiver are well established. In this article, "caregiving" denotes care that is provided by a family member or friend rather than by a professional who is reimbursed for services. Clinical observation and early empirical research showed that assuming a caregiving…

Living With Dementia: An Exploratory Study of Caregiving in a Chinese Family Context.

PubMed

Wong, Oi Ling; Kwong, Ping Sum; Ho, Candis Ka Yan; Chow, Susanna Miu Yee; Kwok, Timothy; Wong, Bel; Ho, Vennus; Lau, Andrew; Ho, Florence

2015-01-01

This qualitative study explored themes that described families taking care of elderly relatives with dementia in Chinese society. Ten families were invited for two in-depth family interviews involving spousal caregivers, child caregivers, and care recipients. Five themes resulted: positive affection as coping strategies, power and control in the caregiving relationship, adult children's involvement in caregiving, sibling rivalry, and intergenerational conflicts. The ways these themes functioned and helped in dementia care, the research implications, and limitations are discussed.

Health-Related Quality of Life in the Family Caregivers of Stroke Survivors

ERIC Educational Resources Information Center

Chen, Yangkun

2010-01-01

The objective of this cross-sectional study was to identify the factors associated with health-related quality of life (HRQOL) of family caregivers of Chinese stroke patients. One hundred and twenty-three stroke patients consecutively admitted to a stroke clinic and their 123 family caregivers were recruited. The caregivers' HRQOLs were assessed…

Telecommunications technology as an aid to family caregivers of persons with dementia.

PubMed

Czaja, Sara J; Rubert, Mark P

2002-01-01

The aging of the population implies that an increased number of people are going to need some form of care or assistance. Caregiving poses a range of physical, emotional, and financial demands and often causes burden and stress for family members. This article describes how technology can be used to provide support to caregivers and increase the quality of life for both caregivers and care recipients. Preliminary data from an ongoing study of dementia caregivers is provided to demonstrate the feasibility of using technological interventions for this population. The intervention involves a telecommunications system designed to augment a family therapy intervention by enhancing access to formal and informal support services. Specifically the system is intended to facilitate linkages between caregivers and other family members, friends, and other caregivers as well as to facilitate access to information on available resources. A total of 76 caregivers of dementia patients, including Cuban American and white American caregivers, received the telecommunications intervention. Data include real-time usage data and measures of usability at 6 months, 12 months, and 18 months after the initiation of the intervention. The data reported in this article are based on responses to the usability questionnaire at 6 months from a sample of 44 caregivers. Overall the results indicate that the system is easy to use and the caregivers find it valuable. The most common reason that the caregivers use the system is to communicate with other caregivers, especially those who are not nearby. The caregivers, especially the Cuban Americans, reported that the system facilitated their ability to communicate with family members and their therapist. The caregivers also indicated that they found participation in the "online discussion" groups to be very valuable and also found the "online resource guide"useful. The results demonstrate how current information and communication technologies can be

Critically examining diversity in end-of-life family caregiving: implications for equitable caregiver support and Canada's Compassionate Care Benefit.

PubMed

Giesbrecht, Melissa; Crooks, Valorie A; Williams, Allison; Hankivsky, Olena

2012-11-01

Family (i.e., unpaid) caregiving has long been thought of as a 'woman's issue', which ultimately results not only in gendered, but also financial and health inequities. Because of this, gender-based analyses have been prioritized in caregiving research. However, trends in current feminist scholarship demonstrate that gender intersects with other axes of difference, such as culture, socio-economic status, and geography to create diverse experiences. In this analysis we examine how formal front-line palliative care providers understand the role of such diversities in shaping Canadian family caregivers' experiences of end-of-life care. In doing so we consider the implications of these findings for a social benefit program aimed at supporting family caregivers, namely the Compassionate Care Benefit (CCB). This analysis contributes to a utilization-focused evaluation of Canada's CCB, a social program that provides job security and limited income assistance to Canadian family caregivers who take a temporary leave from employment to provide care for a dying family member at end-of-life. Fifty semi-structured phone interviews with front-line palliative care providers from across Canada were conducted and thematic diversity analysis of the transcripts ensued. Findings reveal that experiences of caregiving are not homogenous and access to services and supports are not universal across Canada. Five axes of difference were commonly raised by front-line palliative care providers when discussing important differences in family caregivers' experiences: culture, gender, geography, lifecourse stage, and material resources. Our findings reveal inequities with regard to accessing needed caregiver services and resources, including the CCB, based on these axes of difference. We contend that without considering diversity, patterns in vulnerability and inequity are overlooked, and thus continually reinforced in health policy. Based on our findings, we demonstrate that re

Family Stigma and Caregiver Burden in Alzheimer's Disease

ERIC Educational Resources Information Center

Werner, Perla; Mittelman, Mary S.; Goldstein, Dovrat; Heinik, Jeremia

2012-01-01

Purpose: The stigma experienced by the family members of an individual with a stigmatized illness is defined by 3 dimensions: caregiver stigma, lay public stigma, and structural stigma. Research in the area of mental illness suggests that caregivers' perception of stigma is associated with increased burden. However, the effect of stigma on…

Clinical Efficacy of Psychoeducational Interventions with Family Caregivers

ERIC Educational Resources Information Center

Limiñana-Gras, Rosa M.; Colodro-Conde, Lucía; Cuéllar-Flores, Isabel; Sánchez-López, M. Pilar

2016-01-01

The goal of this study is to investigate the efficacy of psychoeducational interventions geared to reducing psychological distress for caregivers in a sample of 90 family caregivers of elderly dependent (78 women and 12 men). We conducted an analysis of the statistical and clinical significance of the changes observed in psychological health…

Family Conflict as a Mediator of Caregiver Strain

ERIC Educational Resources Information Center

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

2006-01-01

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

Gratitude and coping among familial caregivers of persons with dementia.

PubMed

Lau, Bobo Hi-Po; Cheng, Cecilia

2017-04-01

Gratitude is widely perceived as a key factor to psychological well-being by different cultures and religions. The relationship between gratitude and coping in the context of familial dementia caregiving has yet to be investigated. This study is the first to examine the associations among gratitude, coping strategies, psychological resources and psychological distress using a structural equation modelling approach. Findings with 101 Chinese familial caregivers of persons with dementia (mean age = 57.6, range = 40-76; 82% women) showed that gratitude was related to the greater use of emotion-focused coping (positive reframing, acceptance, humour, emotional social support seeking, religious coping) and psychological resources (caregiving competence and social support). Psychological resources and emotion-focused coping in turn explained the association between gratitude and lower levels of psychological distress (caregiving burden and depressive symptoms). The present results indicate the beneficial role of gratitude on coping with caregiving distress and provide empirical foundation for incorporating gratitude in future psychological interventions for caregivers.

Vigilance. Evolution and definition for caregivers of family members with Alzheimer's disease.

PubMed

Mahoney, Diane Feeney

2003-08-01

The language of caregiving relies heavily on terms that are frequently negative such as caregiver stress and burden, but these are not universally accepted phenomenon. The purpose of this article is to report on the development of caregiver vigilance and to suggest it offers both neutral terminology and a means to include caregivers' perceptions of their supervisory role. The concept of vigilance emerged from a qualitative study of caregivers of family members with Alzheimer's disease. Vigilance is defined as the caregivers' continual oversight of their care recipients' activities. The five key components of vigilance were watchful supervision, protective intervening, anticipating, always on duty, and being there. Vigilant caregivers saw themselves as "on duty" even when they were not "doing things." The findings of this study support caregivers' perceptions of 24-hour-a-day responsibility. Nurses need to realize that caregiver vigilance is not necessarily diminished when professional caregivers intervene or institutionalization occurs. Debriefing caregivers about their unique family caregiving knowledge and incorporating it into caregiving is a key strategy for nurses to use to build caregiver trust and reduce their vigilance time.

OA8 Caring for the family caregiver: working with volunteers to implement and improve a service to enable family caregivers to maintain their own wellbeing.

PubMed

Cohen, S Robin; Keats, Susan; Cherba, Maria; Allen, Dawn; MacKinnon, Christopher J; Bitzas, Vasiliki; Kogan, Naomi; Penner, Jamie L; Calislar, Monica Parmar; Feindel, Anna; Lapointe, Bernard; Baxter, Sharon; O'Brien, Suzanne; Stajduhar, Kelli

2015-04-01

Family caregivers suffer physically, mentally, and spiritually. Community volunteers play an important role in supporting patients at the end of life or former caregivers in bereavement. However, there are no research reports of volunteer services focused on maintaining the wellbeing of end-of-life caregivers. To have volunteers, a hired volunteer coordinator, health care providers, and researchers implement and formatively evaluate a volunteer service to enable family caregivers to maintain their well being while providing care and subsequent bereavement. This presentation will focus on the volunteers' roles with the project as both agents of change to the service and as support for the caregivers. A qualitative formative evaluation informed by Guba and Lincoln's Fourth Generation Evaluation (1989) participatory design was conducted. Data was collected through individual interviews, focus groups, participant observation during volunteer support meetings, and through volunteers' written reflections. Amongst the volunteers, volunteer coordinator, and principal investigator, there was mutual respect for and interest in learning about everyone's roles and experiences in the project. The experience was rewarding because they felt they helped the family caregiver and enjoyed developing and improving the service and working in a supportive team. Volunteers' challenges included being nervous for their first meeting with a caregiver, and frustration with some rules put in place to protect them (e.g. not helping the caregiver with direct care for the patient). Volunteers can be an effective part of the research team, while providing valuable support and encouragement for family caregivers to maintain their own wellbeing. © 2015, 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.

How Do Family Caregivers Describe Their Needs for Professional Help?

ERIC Educational Resources Information Center

Yedidia, Michael J.; Tiedemann, Amy

2008-01-01

How aligned are the needs of family caregivers with the professional supports available to them? This article presents the results of the first phase of a study, in which four focus group interviews were conducted with a total of 40 family caregivers to elicit their views of the kinds of assistance they expect from nurses and social workers. The…

The Effect of Cancer Patients' and Their Family Caregivers' Physical and Emotional Symptoms on Caregiver Burden.

PubMed

Johansen, Safora; Cvancarova, Milada; Ruland, Cornelia

Although there is significant evidence that the family caregivers (FCs) of cancer patients can experience significant caregiver burden and symptoms, less is known about the relationships between FCs and patient characteristics that influence caregiver burden. The purpose of this study was to examine the effect of cancer patients' and FCs' symptoms and demographic characteristics on caregiver burden at initiation of the patients' radiation treatment. Two hundred eighty-one dyads of FCs and cancer patients who received a diagnosis of breast, prostate, melanoma, lymphoma, and head and neck cancers were recruited at the beginning of the patients' radiation treatment. Measures of depression, sleep disturbance, fatigue, social support, and self-efficacy were obtained from both FCs and cancer patients. The family caregivers were also assessed for caregiver burden. Associations between patients' and caregivers' symptoms and demographic characteristics and caregiver burden were investigated using multivariate analyses. There were significant associations between caregiver burden and the patient-related variables such as self-efficacy (P = .02), sleep disturbance (P = .03), and social support (P = .04). Among FC-related variables, higher scores of depression (P < .01), fatigue (P < .01), and symptoms (P < .01) were significantly associated with higher caregiver burden. Being a female, either as a patient or FC, increased the likelihood of experiencing fatigue and sleep disturbance. Caregiver burden in FCs is influenced by interplay of patients' and their own symptoms and problems. These interdependencies exist from the beginning of treatment. Nurses should systematically assess the problems and symptoms of the patients and FCs and support them from the time of diagnosis to help prevent symptom development and deterioration.

Pain in cancer patients: pain assessment by patients and family caregivers and problems experienced by caregivers.

PubMed

Ovayolu, Özlem; Ovayolu, Nimet; Aytaç, Sema; Serçe, Sibel; Sevinc, Alper

2015-07-01

Pain is among the most important symptoms in terms of prevalence and a major cause of distress for cancer patients and their family caregivers. Thus, we conducted this study with the aim to compare assessment of pain among cancer patients and their caregivers and to determine the problems experienced by caregivers. A cross-sectional and descriptive design was used. This study was conducted in a chemotherapy unit and an adult oncology clinic with 220 patients diagnosed with cancer who admitted to an oncology hospital and 220 caregivers. The study data was collected using a questionnaire and visual analogue scale (VAS, where "0: no pain," "10: severe pain"). Statistically significant levels were set at p < 0.05. Pain severity as assessed by patients and their caregivers was 7.1 ± 2.8 and 7.3 ± 2.4, respectively, and the most common pain-related problems in cancer patients were fatigue (p < 0.05), loss of appetite and insomnia (p > 0.05) as reported by both patients and caregivers. Compared to their caregivers, patients more frequently reported financial burden associated with pain management and negative effects of cancer pain on their work life and domestic life and family relationships, all of which were statistically significant (p < 0.05). The caregivers most commonly reported fatigue (56.8%) in their role as a caregiver. Pain assessments of both patients and caregivers and seeking their input on how to manage potential pain-related problems are crucial to achieve adequate pain control. In addition, psychological distress experienced by caregivers should not be overlooked.

The family caregiver experience - examining the positive and negative aspects of compassion satisfaction and compassion fatigue as caregiving outcomes.

PubMed

Lynch, Susan H; Shuster, Geoff; Lobo, Marie L

2017-08-16

Caregiving results in both positive and negative outcomes for caregivers. The purpose of this study was to examine compassion fatigue and compassion satisfaction in family caregivers. Using a cross sectional descriptive survey design with a convenience sample, 168 family caregivers of individuals with chronic illness completed a web-based survey. Measures included a demographic questionnaire, Caregiver Burden Interview, Brief COPE inventory and Professional Quality of Life (ProQOL). The majority of participants (71%) reported high levels of caregiver burden, moderate to low levels of the compassion fatigue concepts of burnout (59.5%) and secondary traumatic stress (STS) (50%), and moderate levels of compassion satisfaction (82.7%). Regression analyses showed that caregiver burden, time caregiving, coping, social support, and caregiving demands explained a total variance of 57.1%, F(11,119) = 14.398, p < .00 in burnout and a total variance of 56%, F(11, 119) = 13.64, p < .00 in STS. Specifically, behavioral disengagement is a predicator that may indicate early compassion fatigue. Findings suggest that despite high caregiver burden and moderate compassion fatigue, family caregivers are able to provide care and find satisfaction in the role. This study supports the use of compassion fatigue and compassion satisfaction as alternative or additional outcomes to consider in future research.

Caring for the Caregiver: Supporting Families of Youth With Special Health Care Needs.

PubMed

Pilapil, Mariecel; Coletti, Daniel J; Rabey, Cindy; DeLaet, David

2017-08-01

Caregivers of youth with special health care needs (YSHCN) are a critical part of the health care team. It is important for pediatric providers to be cognizant of the burden and strain caregiving can create. This article will discuss the health, psychological, social, and financial effects of caregiving, as well as strategies to screen for caregiver strain among families of YSHCN. Caregivers of YSHCN, for example, are more likely to report poor health status and demonstrate higher rates of depression and anxiety. Numerous validated screens for caregiver strain have been developed to address the multi-faceted effects of caregiving. Finally, we will discuss strategies to alleviate caregiver strain among this vulnerable population. We will describe services pediatric providers can encourage caregivers to utilize, including financial support through Supplemental Security Income (SSI), benefits available through the Family Medical Leave Act (FMLA), and options for respite care. Addressing caregiver strain is an important aspect of maintaining a family centered approach to the care of YSHCN. Copyright © 2017. Published by Elsevier Inc.

Caregiver Café: Providing Education and Support to Family Caregivers of Patients With Cancer
.

PubMed

Finley, Joanne P

2018-02-01

The many burdens faced by caregivers of patients with cancer are well documented. Caregivers are asked to perform procedures, make assessments, coordinate care, and communicate with healthcare providers at an increasingly complex level. A caregiver quality improvement project, in the form of a Caregiver Café, was instituted at a National Cancer Institute-designated comprehensive cancer center.
. The objectives of the café are to (a) provide respite and a place for caregivers to relax and be nurtured, (b) provide a place for caregivers to meet and support each other, (c) provide answers to caregiver questions, and (d) recommend appropriate caregiver resources.
. The weekly Caregiver Café is led by an advanced practice nurse, and the format varies depending on the needs of the caregivers who attend.
. Caregivers have verbalized the importance of the café in helping them cope with their loved ones' cancers and treatments, and many attend on a regular basis. The Caregiver Café provides support and information and a place to get away from it all.

Delirium in older adults attending adult day care and family caregiver distress.

PubMed

Bull, Margaret J

2011-06-01

BACKGROUND; Delirium is a critical, costly, frequently reversible problem in older adults. Findings of previous studies indicate that delirium occurs in up to 65% of hospitalised older adults and up to 80% of terminally ill patients. Few studies address the frequency of delirium in community dwelling older adults and the extent to which delirium symptoms create distress for their family caregivers. To determine the frequency of delirium in older people attending two adult day centers (ADC) in the United States and identify the extent to which delirium symptoms were associated with family caregivers' mental health symptoms, and ways of coping with the older adults' care. A descriptive, cross-sectional design was used. Thirty older adults and their family caregivers were randomly selected from the rosters of the ADC. Only 6.7% of the older adults had a positive screen for delirium. The majority of family caregivers (96.6%) stated that they had no knowledge of delirium prior to participating in this study. Both older adults and their family caregivers need education about delirium symptoms and risks. © 2010 Blackwell Publishing Ltd.

Mental and physical health correlates among family caregivers of patients with newly-diagnosed incurable cancer: a hierarchical linear regression analysis.

PubMed

Shaffer, Kelly M; Jacobs, Jamie M; Nipp, Ryan D; Carr, Alaina; Jackson, Vicki A; Park, Elyse R; Pirl, William F; El-Jawahri, Areej; Gallagher, Emily R; Greer, Joseph A; Temel, Jennifer S

2017-03-01

Caregiver, relational, and patient factors have been associated with the health of family members and friends providing care to patients with early-stage cancer. Little research has examined whether findings extend to family caregivers of patients with incurable cancer, who experience unique and substantial caregiving burdens. We examined correlates of mental and physical health among caregivers of patients with newly-diagnosed incurable lung or non-colorectal gastrointestinal cancer. At baseline for a trial of early palliative care, caregivers of participating patients (N = 275) reported their mental and physical health (Medical Outcome Survey-Short Form-36); patients reported their quality of life (Functional Assessment of Cancer Therapy-General). Analyses used hierarchical linear regression with two-tailed significance tests. Caregivers' mental health was worse than the U.S. national population (M = 44.31, p < .001), yet their physical health was better (M = 56.20, p < .001). Hierarchical regression analyses testing caregiver, relational, and patient factors simultaneously revealed that younger (B = 0.31, p = .001), spousal caregivers (B = -8.70, p = .003), who cared for patients reporting low emotional well-being (B = 0.51, p = .01) reported worse mental health; older (B = -0.17, p = .01) caregivers with low educational attainment (B = 4.36, p < .001) who cared for patients reporting low social well-being (B = 0.35, p = .05) reported worse physical health. In this large sample of family caregivers of patients with incurable cancer, caregiver demographics, relational factors, and patient-specific factors were all related to caregiver mental health, while caregiver demographics were primarily associated with caregiver physical health. These findings help identify characteristics of family caregivers at highest risk of poor mental and physical health who may benefit from greater supportive care.

Family functioning mediates adaptation in caregivers of individuals with Rett syndrome.

PubMed

Lamb, Amanda E; Biesecker, Barbara B; Umstead, Kendall L; Muratori, Michelle; Biesecker, Leslie G; Erby, Lori H

2016-11-01

The objective of this study was to investigate factors related to family functioning and adaptation in caregivers of individuals with Rett syndrome (RS). A cross-sectional quantitative survey explored the relationships between demographics, parental self-efficacy, coping methods, family functioning and adaptation. A forward-backward, step-wise model selection procedure was used to evaluate variables associated with both family functioning and adaptation. Analyses also explored family functioning as a mediator of the relationship between other variables and adaptation. Bivariate analyses (N=400) revealed that greater parental self-efficacy, a greater proportion of problem-focused coping, and a lesser proportion of emotion-focused coping were associated with more effective family functioning. In addition, these key variables were significantly associated with greater adaptation, as was family functioning, while controlling for confounders. Finally, regression analyses suggest family functioning as a mediator of the relationships between three variables (parental self-efficacy, problem-focused coping, and emotion-focused coping) with adaptation. This study demonstrates the potentially predictive roles of expectations and coping methods and the mediator role of family functioning in adaptation among caregivers of individuals with RS, a chronic developmental disorder. A potential target for intervention is strengthening of caregiver competence in the parenting role to enhance caregiver adaptation. Published by Elsevier Ireland Ltd.

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

PubMed

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

2015-08-07

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

Family caregivers' views on coordination of care in Huntington's disease: a qualitative study.

PubMed

Røthing, Merete; Malterud, Kirsti; Frich, Jan C

2015-12-01

Collaboration between family caregivers and health professionals in specialised hospitals or community-based primary healthcare systems can be challenging. During the course of severe chronic disease, several health professionals might be involved at a given time, and the patient's illness may be unpredictable or not well understood by some of those involved in the treatment and care. The aim of this study was to explore the experiences and expectations of family caregivers for persons with Huntington's disease concerning collaboration with healthcare professionals. To shed light on collaboration from the perspectives of family caregivers, we conducted an explorative, qualitative interview study with 15 adult participants experienced from caring for family members in all stages of Huntington's disease. Data were analysed with systematic text condensation, a cross-case method for thematic analysis of qualitative data. We found that family caregivers approached health services hoping to understand the illness course and to share their concerns and stories with skilled and trustworthy professionals. Family caregivers felt their involvement in consultations and access to ongoing exchanges of knowledge were important factors in improved health services. They also felt that the clarity of roles and responsibilities was crucial to collaboration. Family caregivers should be acknowledged for their competences and should be involved as contributors in partnerships with healthcare professionals. Our study suggests that building respectful partnerships with family caregivers and facilitating the mutual sharing of knowledge may improve the coordination of care. It is important to establish clarity of roles adjusted to caregivers' individual resources for managing responsibilities in the care process. © 2015 The Authors. Scandinavian Journal of Caring Sciences published by John Wiley & Sons Ltd on behalf of Nordic College of Caring Science.

Family caregivers in public tertiary care hospitals in Bangladesh: risks and opportunities for infection control.

PubMed

Islam, M Saiful; Luby, Stephen P; Sultana, Rebeca; Rimi, Nadia Ali; Zaman, Rashid Uz; Uddin, Main; Nahar, Nazmun; Rahman, Mahmudur; Hossain, M Jahangir; Gurley, Emily S

2014-03-01

Family caregivers are integral to patient care in Bangladeshi public hospitals. This study explored family caregivers' activities and their perceptions and practices related to disease transmission and prevention in public hospitals. Trained qualitative researchers conducted a total of 48 hours of observation in 3 public tertiary care hospitals and 12 in-depth interviews with family caregivers. Family caregivers provided care 24 hours a day, including bedside nursing, cleaning care, and psychologic support. During observations, family members provided 2,065 episodes of care giving, 75% (1,544) of which involved close contact with patients. We observed family caregivers washing their hands with soap on only 4 occasions. The majority of respondents said diseases are transmitted through physical contact with surfaces and objects that have been contaminated with patient secretions and excretions, and avoiding contact with these contaminated objects would help prevent disease. Family caregivers are at risk for hospital-acquired infection from their repeated exposure to infectious agents combined with their inadequate hand hygiene and knowledge about disease transmission. Future research should explore potential strategies to improve family caregivers' knowledge about disease transmission and reduce family caregiver exposures, which may be accomplished by improving care provided by health care workers. Copyright © 2014 Association for Professionals in Infection Control and Epidemiology, Inc. All rights reserved.

Self-transcendence and family caregivers of adults with dementia.

PubMed

Acton, G J; Wright, K B

2000-06-01

Research has documented that caring for a family member with dementia is stressful and burdensome. However, difficult life experiences such as fear, loss, and grief may help persons move beyond a concern for self toward a larger perspective and concern for others. Both positive and negative experiences can promote positive movement toward growth and development. This movement has been described as self-transcendence, or the ability to look beyond the self and present difficulties, to extend concern to others, and to find personal meaning and wholeness in the context of life-changing events. The family caregiving experience with its inherent difficulties might provide the impetus for such a movement toward self-transcendence. The purpose of this article is to examine the concept of self-transcendence, explore its linkages to the caregiving experience, and suggest potential strategies to assist family caregivers to achieve self-transcendence.

The Thoughts Questionnaire (TQ) for family caregivers of people with dementia.

PubMed

Sullivan, Karen A; Beattie, Elizabeth; Khawaja, Nigar G; Wilz, Gabriele; Cunningham, Lauren

2016-11-01

To develop a new measure of dysfunctional thoughts for family caregivers of people living with dementia. These thoughts can contribute to negative outcomes, but they may be modifiable. A stepwise process was used to develop the Thoughts Questionnaire, commencing with item generation, concept mapping, and pilot testing in a sample of professional and nonprofessional caregivers of people with dementia (n = 18). Next, an independent sample of 35 family caregivers of people with dementia (30 female; M age  = 64.30, standard deviation = 10.65) completed: (a) the Thoughts Questionnaire; (b) an existing measure of dysfunctional thoughts, the Dementia Thoughts Caregivers Questionnaire; and (c) separate validated measures of depressive symptoms, caregiver stress, and coping, respectively. The level of agreement with dysfunctional thought statements from the Dementia Thoughts Caregivers Questionnaire and Thoughts Questionnaire was low. However, a small number of Thoughts Questionnaire statements were strongly endorsed by over 85% of the sample. Both dysfunctional thought measures had adequate reliability, but total scores were not significantly intercorrelated (r = .287, p = .095). Only the Thoughts Questionnaire was significantly, positively correlated with most caregiver stress measures. Thoughts Questionnaire items required a much lower reading level than the Dementia Thoughts Caregivers Questionnaire items. This study provides preliminary data on a tool for assessing the negative role-related thoughts that family caregivers of people with dementia may experience. Given that these thoughts are implicated in depression but they may be modified, the capacity to identify dysfunctional thoughts may prove useful in caregiver support programs. © The Author(s) 2014.

Mental and Physical Health Correlates among Family Caregivers of Patients with Newly-Diagnosed Incurable Cancer: A Hierarchical Linear Regression Analysis

PubMed Central

Shaffer, Kelly M.; Jacobs, Jamie M.; Nipp, Ryan D.; Carr, Alaina; Jackson, Vicki A.; Park, Elyse R.; Pirl, William F.; El-Jawahri, Areej; Gallagher, Emily R.; Greer, Joseph A.; Temel, Jennifer S.

2016-01-01

Purpose Caregiver, relational, and patient factors have been associated with the health of family members and friends providing care to patients with early-stage cancer. Little research has examined whether findings extend to family caregivers of patients with incurable cancer, who experience unique and substantial caregiving burdens. We examined correlates of mental and physical health among caregivers of patients with newly-diagnosed incurable lung or non-colorectal gastrointestinal cancer. Methods At baseline for a trial of early palliative care, caregivers of participating patients (N=275) reported their mental and physical health (Medical Outcome Survey-Short Form-36); patients reported their quality of life (Functional Assessment of Cancer Therapy-General). Analyses used hierarchical linear regression with two-tailed significance tests. Results Caregivers’ mental health was worse than the U.S. national population (M=44.31, p<.001), yet their physical health was better (M=56.20, p<.001). Hierarchical regression analyses testing caregiver, relational, and patient factors simultaneously revealed that younger (B=0.31, p=.001), spousal caregivers (B=−8.70, p=.003), who cared for patients reporting low emotional well-being (B=0.51, p=.01) reported worse mental health; older (B=−0.17, p=.01) caregivers with low educational attainment (B=4.36, p<.001) who cared for patients reporting low social well-being (B=0.35, p=.05) reported worse physical health. Conclusions In this large sample of family caregivers of patients with incurable cancer, caregiver demographics, relational factors, and patient-specific factors were all related to caregiver mental health, while caregiver demographics were primarily associated with caregiver physical health. These findings help identify characteristics of family caregivers at highest risk of poor mental and physical health who may benefit from greater supportive care. PMID:27866337

Worksite-based internet multimedia program for family caregivers of persons with dementia.

PubMed

Beauchamp, Natasha; Irvine, A Blair; Seeley, John; Johnson, Brian

2005-12-01

Our goal was to evaluate the efficacy of a multimedia support program delivered over the Internet to employed family caregivers of persons with dementia. The evaluation of this program involved 299 employed family caregivers participating in a pretest-posttest randomized clinical trial with a 30-day follow-up and a waitlist control condition. Validated instruments include the Center for Epidemiologic Studies-Depression scale, the State-Trait Anxiety Inventory, the Caregiver Strain scale from Benjamin Rose, and Positive Aspects of Caregiving used in the nationwide REACH study. Those who viewed Caregiver's Friend: Dealing with Dementia 30 days postexposure demonstrated significant improvements in depression, anxiety, level and frequency of stress, caregiver strain, self-efficacy, and intention to seek help, as well as perceptions of positive aspects of caregiving. Interactive multimedia interventions delivered over the Internet appear to be uniquely suited to provide low-cost, effective, convenient, individually tailored programs that present educational information, cognitive and behavioral skills, and affective learning opportunities. This makes Web-based multimedia a promising avenue for work-life balance programs, employee-assistance providers, and organizations interested in improving family caregiver health and well-being.

Accessible Support for Family Caregivers of Seniors with Chronic Conditions: From Isolation to Inclusion

ERIC Educational Resources Information Center

Stewart, Miriam; Barnfather, Alison; Neufeld, Anne; Warren, Sharon; Letourneau, Nicole; Liu, Lili

2006-01-01

Accessible support programs can improve health outcomes for family caregivers of older relatives with a chronic condition. Over the course of 6 months, 27 experienced family caregivers provided weekly support via the telephone to 66 individuals, either new family caregivers of seniors recently diagnosed with stroke or newly vulnerable family…

From burden to depressive symptoms: the case of Chinese-Canadian family caregivers for the elderly.

PubMed

Lai, Daniel W L

2009-01-01

This study aims to understand the effect of caregiving burden on depressive symptoms in Chinese-Canadian family caregivers, an area on which little research has been conducted. A random sample of 339 Chinese-Canadian caregivers for elderly family members completed a structured telephone survey. The results showed that depressive symptoms were predicted positively by caregiving burden, while caregiving burden was predicted negatively by financial adequacy and positively by the level of activities of daily living (ADL) and instrumental activities of daily living (IADL) caregiving assistance provided. Culturally appropriate strategies are needed to support Chinese family caregivers in order to properly manage caregiving responsibilities, financial needs, and psychological burden.

Respite Utilization and Responses to Loss among Family Caregivers: Relationship Matters

ERIC Educational Resources Information Center

DeCaporale, Lauren; Mensie, Lauren; Steffen, Ann

2013-01-01

Family caregivers of physically and cognitively impaired older adults face multiple challenges when providing care, including responses to tangible and anticipated losses. However, little is known about the grief experiences of family caregivers and how these might differentially influence the care-related behaviors of spouses and adult children.…

Caring stress, suicidal attitude and suicide care ability among family caregivers of suicidal individuals: a path analysis.

PubMed

Chiang, C-Y; Lu, C-Y; Lin, Y-H; Lin, H-Y; Sun, F-K

2015-12-01

What is known on the subject? Suicide is a global mental health issue. Taking care of suicidal individuals is a substantial challenge. Most studies emphasize the suicidal individual. Few studies have emphasized the family caregivers of suicidal individuals. No study has explored the relationship between family caregivers' caring stress with suicidal attitudes and suicide care ability. What this paper adds to existing knowledge? The main results indicated that the older family caregivers tended to have a more negative attitude towards suicidal individuals. Female family caregivers' stress was higher than that of male family caregivers. A mild level of caring stress would help family caregivers have a more positive attitude towards suicidal individuals. Furthermore, a positive attitude would help family caregivers improve their caring ability. What are the implications for practice? Mental health nurses could help family caregivers, especially female family caregivers, reduce their holistic caring burden by looking for support resources and enhancing their coping strategies. Mental health nurses could help family caregivers promote positive attitudes towards suicidal relatives by understanding suicidal individuals' suffering. Suicide is a global mental health issue. Family caregivers play a key role in preventing suicide attempts. The aim of this study was to examine the relationship among stress due to the family caregiver's role, suicidal attitude of the family caregiver and suicide care ability among family caregivers. Additionally, instruments of caring stress, attitudes towards suicidal relatives and caring abilities used in the study were tested to measure construct validity. A cross-sectional correlational study was conducted with 164 family caregivers of people who are suicidal. The following three questionnaires were used: the Caring Stress Scale, the Suicidal Attitudes Scale and the Suicidal Caring Ability Scale. Structural equation modelling was performed

Caring for the brain tumor patient: family caregiver burden and unmet needs.

PubMed

Schubart, Jane R; Kinzie, Mable B; Farace, Elana

2008-02-01

The rapid onset and progression of a brain tumor, cognitive and behavioral changes, and uncertainty surrounding prognosis are issues well known to health practitioners in neuro-oncology. We studied the specific challenges that family caregivers face when caring for patients experiencing the significant neurocognitive and neurobehavioral disorders associated with brain tumors. We selected 25 family caregivers of adult brain tumor patients to represent the brain tumor illness trajectory (crisis, chronic, and terminal phases). Interviews documented caregiving tasks and decision-making and information and support needs. Themes were permitted to emerge from the data in qualitative analysis. We found that the family caregivers in this study provided extraordinary uncompensated care involving significant amounts of time and energy for months or years and requiring the performance of tasks that were often physically, emotionally, socially, or financially demanding. They were constantly challenged to solve problems and make decisions as care needs changed, yet they felt untrained and unprepared as they struggled to adjust to new roles and responsibilities. Because the focus was on the patient, their own needs were neglected. Because caregiver information needs are emergent, they are not always known at the time of a clinic visit. Physicians are frequently unable to address caregiver questions, a situation compounded by time constraints and cultural barriers. We provide specific recommendations for (1) improving the delivery of information; (2) enhancing communication among patients, families, and health care providers; and (3) providing psychosocial support for family caregivers.

Caring for the brain tumor patient: Family caregiver burden and unmet needs

PubMed Central

Schubart, Jane R.; Kinzie, Mable B.; Farace, Elana

2008-01-01

The rapid onset and progression of a brain tumor, cognitive and behavioral changes, and uncertainty surrounding prognosis are issues well known to health practitioners in neuro-oncology. We studied the specific challenges that family caregivers face when caring for patients experiencing the significant neurocognitive and neurobehavioral disorders associated with brain tumors. We selected 25 family caregivers of adult brain tumor patients to represent the brain tumor illness trajectory (crisis, chronic, and terminal phases). Interviews documented caregiving tasks and decision-making and information and support needs. Themes were permitted to emerge from the data in qualitative analysis. We found that the family caregivers in this study provided extraordinary uncompensated care involving significant amounts of time and energy for months or years and requiring the performance of tasks that were often physically, emotionally, socially, or financially demanding. They were constantly challenged to solve problems and make decisions as care needs changed, yet they felt untrained and unprepared as they struggled to adjust to new roles and responsibilities. Because the focus was on the patient, their own needs were neglected. Because caregiver information needs are emergent, they are not always known at the time of a clinic visit. Physicians are frequently unable to address caregiver questions, a situation compounded by time constraints and cultural barriers. We provide specific recommendations for (1) improving the delivery of information; (2) enhancing communication among patients, families, and health care providers; and (3) providing psychosocial support for family caregivers. PMID:17993635

Family Caregivers in Cancer: Roles and Challenges (PDQ®)—Health Professional Version

Cancer.gov

Family caregivers, also called informal caregivers, play an important role in treatment planning, decision making, and managing cancer care. Get comprehensive information on the importance of caregiver roles and concerns and helpful interventions for caregivers in this summary for clinicians.

Family Caregivers in Cancer: Roles and Challenges (PDQ®)—Health Professional Version

Cancer.gov

Expert-reviewed information summary about the challenges faced by family caregivers of cancer patients. This summary focuses on typical caregiver roles and concerns, and helpful interventions for caregivers.

Coping with patients suffering from overactive bladder: experiences of family caregivers in Hong Kong.

PubMed

Siu, Judy Yuen-Man

2017-01-01

This article examines the experiences of family caregivers working with patients affected by overactive bladder (OAB) in Hong Kong. Chronic diseases create physical and emotional burdens not only for patients but also for family caregivers, who often experience physical and emotional burnout and social impairment. Extensive literature has pertained to caregiver experiences in western and non-western settings; however, few studies have addressed the livelihoods and experiences of family caregivers of patients with OAB in ethnic Chinese communities. Because of the increasing prevalence of OAB worldwide, this study investigated the experiences of such caregivers in Hong Kong, examining their emotional and social needs. A qualitative research design with individual semistructured interviews was adopted, and snowball sampling was used to recruit 35 family caregivers who were referred by patients with OAB. The participants were interviewed individually from May to August 2013. A phenomenological approach was adopted in the data analysis. The data revealed that all participants had unpleasant experiences in caring for family members with OAB. A sense of powerlessness, helplessness, confusion and guilt, as well as grievances and social withdrawal, was prevalent, causing great physical and emotional suffering and subsequent physical and emotional burnout. These negative experiences were often caused by confusion regarding caretaking duties. The negative emotions of the participants and their family members also caused a lack of communication and mutual understanding about the disease, causing care-giving to be even more confusing and difficult. Furthermore, because of traditional Chinese cultural values and gender expectations, male participants experienced the triple burden of employment, domestic duties and care-giving. More holistic social and healthcare support services should be provided for care-giving family members of patients with OAB patients, empowering such

Seeking harmony in the provision of care to the stroke-impaired: views of Chinese family caregivers.

PubMed

Lee, Regina L T; Mok, Esther S B

2011-05-01

To explore the coping strategies of Chinese family caregivers of stroke-impaired older relatives. Many stroke-impaired patients rely heavily on support from their families, and the daily lives of such family caregivers are severely impacted. However, services and support for family caregivers of stroke-impaired relatives in the home setting have received little attention. Appropriate and relevant information and support to family caregivers are important in facilitating the care-giving task. It is, therefore, necessary to understand the nature and demands of care-giving before planning specific educational and support programmes. Grounded theory. Fifteen Chinese family caregivers of stroke-impaired older relatives were recruited and interviewed in 2003 and 2004. Theoretical sampling and constant comparative analysis were used to recruit the sample and perform data analysis. Seeking harmony to provide care for the stroke-impaired was the core category for describing and guiding the family care-giving process, with five main stages: (1) living with ambiguity, (2) monitoring the recovery progress, (3) accepting the downfalls, (4) meeting family obligations and (5) reconciling with harmony. These issues were seldom discussed openly with health professionals. The findings indicated that Chinese family caregivers determine their own needs by seeking harmony to continue to provide care without thinking about getting help from others or their own health problems. These findings help to define some of the complex dynamics that have an impact on the development of partnership care and might challenge nurses practising in the community. Community nurses should assess and understand the coping strategies of family caregivers and assist them to engage in stress-reducing practices. This is an important partnership to be formed in stroke care for family caregivers in the community. The study findings will guide further development of family care-giving aspects in nursing practice

Reintegration of Women Post Obstetric Fistula Repair: Experience of Family Caregivers.

PubMed

Jarvis, Kimberly; Richter, Solina; Vallianatos, Helen; Thornton, Lois

2017-01-01

In northern Ghana, families traditionally function as the main provider of care. The role of family, however, is becoming increasingly challenged with the social shifts in Ghanaian culture moving from extended kinship to nuclear households. This has implications for the care of women post obstetric fistula (OF) repair and their family members who assist them to integrate back into their lives prior to developing the condition. This research is part of a larger critical ethnographic study which explores a culture of reintegration. For this article, we draw attention to the findings related to the experience of family caregivers who care for women post OF repair in northern Ghana. It is suggested that although family caregivers are pleased to have their family member return home, there are many unanticipated physical, emotional, and economic challenges. Findings lead to recommendations for enhancing the reintegration process and the need for adequate caregiving support.

Reintegration of Women Post Obstetric Fistula Repair: Experience of Family Caregivers

PubMed Central

Jarvis, Kimberly; Richter, Solina; Vallianatos, Helen; Thornton, Lois

2017-01-01

In northern Ghana, families traditionally function as the main provider of care. The role of family, however, is becoming increasingly challenged with the social shifts in Ghanaian culture moving from extended kinship to nuclear households. This has implications for the care of women post obstetric fistula (OF) repair and their family members who assist them to integrate back into their lives prior to developing the condition. This research is part of a larger critical ethnographic study which explores a culture of reintegration. For this article, we draw attention to the findings related to the experience of family caregivers who care for women post OF repair in northern Ghana. It is suggested that although family caregivers are pleased to have their family member return home, there are many unanticipated physical, emotional, and economic challenges. Findings lead to recommendations for enhancing the reintegration process and the need for adequate caregiving support. PMID:28835910

Comparison of quality of life of Turkish cancer patients and their family caregivers.

PubMed

Yesilbalkan, Oznur Usta; Ozkutuk, Nilay; Ardahan, Melek

2010-01-01

The purpose of this study was to compare the quality of life (QoL) of cancer patients and their family caregivers and determine associations. A total of 93 paired patients and caregivers from an outpatient chemotherapy unit of the oncology units were recruited at a large university hospital in İzmir, all completing the Quality of Life Scale (QoLS). The mean age of patients was 45.2 years, and of their family caregivers was 40.5. The results indicated that the patients perceived a poorer quality of life than their family caregivers. There was a middle and positive correlation between the social participation and work performance dimensions of patients' QoL and social participation and work performance dimension of family caregivers' QoL (r =0.273, p< 0.01). The study revealed that the gender, education level, employment and marital status were not statistically significant factors affecting the patients' quality of life (p> 0.05). Caregivers' employment status was found to have an affect on their quality of life (p < 0.05). Cancer affects not only the patients but also their family caregivers. Both should be taught communication skills, financial planning and distress management skills and be given spiritual support to decrease effects of cancer on their quality of life.

A dyadic analysis of stress processes in Latinas with breast cancer and their family caregivers.

PubMed

Segrin, Chris; Badger, Terry A; Sikorskii, Alla; Crane, Tracy E; Pace, Thaddeus W W

2018-03-01

Breast cancer diagnosis and treatment negatively affect quality of life for survivors and their family caregivers. The stress process model has been useful for describing the cascade of social and psychological experiences that culminate in degraded quality of life for both survivors and their family caregivers. This study is designed to test theoretically specified predictors of negative psychosocial outcomes in a dyadic context. Participants were 230 dyads composed of Latinas recently diagnosed with breast cancer and their primary family caregiver, who completed measures of socioeconomic status, stress, family conflict, depression, and anxiety. Data were analyzed following the Actor-Partner Interdependence Mediation Model in structural equation modeling. For both survivors and caregivers, there were significant direct and indirect actor effects (through family conflict) of perceived stress on depression and anxiety. Several indirect partner effects were also evident in this sample. Specifically, caregivers' stress was predictive of survivors' depression and anxiety through survivors' increased perceptions of family conflict. As predicted by the stress process model, stress and family conflict were predictive of psychological distress in breast cancer survivors and their family caregivers. Significant partner effects in the Actor-Partner Interdependence Mediation Model suggest that there are some dyadic influences, particularly from caregivers' stress to survivors' perceptions of exacerbated family conflict. These findings show how strained family relationships can aggravate the well-being of cancer survivors and their family caregivers through this challenging experience. Copyright © 2017 John Wiley & Sons, Ltd.

Examining trust in health professionals among family caregivers of nursing home residents with advanced dementia.

PubMed

Boogaard, Jannie A; Werner, Perla; Zisberg, Anna; van der Steen, Jenny T

2017-12-01

In a context of increasing emphasis on shared decision-making and palliative care in dementia, research on family caregivers' trust in health professionals in advanced dementia is surprisingly scant. The aim of the present study was to assess trust in nursing home health professionals of family caregivers of nursing home residents with advanced dementia, and possible correlates, such as family caregivers' satisfaction, involvement in care, care burden and patients' symptom burden. A cross-sectional study was carried out using structured questionnaires administered through the telephone. Generalized estimating equation analyses with adjustment for nursing home clustering were applied to assess the most important associations with family caregivers' trust. A total of 214 family caregivers of persons with dementia residing in 25 nursing homes participated in the study. The majority of the participants (67%) were women and adult children (75%). The majority of the family caregivers trusted physicians, nurses and nurses' aides at a moderate-to-high level. Approximately half to one-third reported moderate-to-low levels of trust. Higher levels of trust were associated with more positive care outcomes, such as higher family satisfaction with care and more positive evaluations of physician-family communication. The present study showed the importance of family caregivers trusting nursing home health professionals for their experiences as caregivers. Although causation cannot be established, increased family caregivers' trust in nursing home health professionals by improving communication and exchange of information might provide a good basis for providing optimal palliative care in advanced dementia. Geriatr Gerontol Int 2017; 17: 2466-2471. © 2017 Japan Geriatrics Society.

Professional discipline and support recommendations for family caregivers of persons with dementia.

PubMed

Gaugler, Joseph E; Westra, Bonnie L; Kane, Robert L

2016-06-01

Family caregivers of persons with dementia often require support services to help ease the challenges of providing care. Although the efficacy of some dementia caregiver interventions seems apparent, evidence indicating which types of protocols can best meet the diverse needs of individual families is not yet available. Because of this gap, families must often turn to professionals for such guidance, but it remains unknown whether professionals from different disciplines are more inclined to recommend particular types of services than others. This study assessed whether recommendations of supportive interventions to hypothetical dementia family caregivers differed by professional discipline. In a cross-sectional survey design, a convenience sample of 422 dementia care professionals across the USA viewed up to 24 randomly selected, hypothetical scenarios that systematically varied characteristics of persons with dementia and their caregivers. For each scenario, 7 possible intervention recommendations were rated. A total of 6,890 scenarios were rated and served as the unit of analysis. General linear models revealed that discipline was often a stronger predictor of how likely professionals were to recommend dementia caregiver interventions than caregiver, care recipient, or other professional characteristics. Psychotherapists tended to recommend psychoeducation more than other professionals, while those in medicine were more likely to recommend training of the person with dementia and psychotherapy. The heterogeneity in recommendations suggests that the professional source of information influences the types of support families are directed toward. Empirical evidence should inform these professional judgments to better achieve person-centered care for families.

Burden on Family Caregivers Caring for Patients with Schizophrenia

PubMed Central

Shamsaei, Farshid; Cheraghi, Fatemeh; Bashirian, Saied

2015-01-01

Objective: The aim of this study ‎was to determine the prevalence ‎of the burden reported by family ‎caregivers of Patients with ‎schizophrenia.‎ Methods: This cross sectional ‎study involved face-to-face ‎interviews with family caregivers ‎of patients with schizophrenia. ‎Using convenience sampling, ‎‎225 caregivers were selected ‎from Farshchian psychiatry ‎Hospital in Hamadan, Iran from ‎July to September 2012. ‎Measures included patients and ‎caregivers’ demographic ‎variables and caregivers’ burden ‎using the Zarit Burden Interview ‎‎(ZBI). Data were analyzed by ‎SPSS-18 with Pearson ‎correlation and t-test.‎ Results: Using the ZBI, we found ‎that 7.6% of the caregivers ‎experienced “no to low” burden, ‎‎23.5% “mild to moderate”, 41.8% ‎‎“moderate to severe” and 27.1% ‎‎“severe” burden. The mean ‎average score of the responses ‎to ZBI was 51.73 (SD: ± 18.23). ‎The level of burden experienced ‎was significantly associated with ‎age, gender, and educational ‎level, relation to care recipient, ‎caregiving duration and duration ‎of schizophrenia illness.‎ Conclusion: ‎ ‏ ‏Mental health ‎professionals need to develop ‎more innovative programs for ‎families of schizophrenic ‎patients. Furthermore, as a ‎replacement for supporting the ‎families and easing their ‎burdens, it may be more ‎effective to include them in the ‎health care team by assigning ‎specific tasks and providing the ‎required resources to them to ‎perform such tasks. ‎ PMID:27006669

The consequence of "doing nothing": Family caregiving for Alzheimer's disease as non-action in the US.

PubMed

Seaman, Aaron T

2018-01-01

This article adopts a discursive approach in order to examine how dominant US discourses shape both public and personal understandings of the caregiving work that families do, specifically in the context of Alzheimer's disease (AD). Family caregivers are an essential, increasingly recognized piece of the US health care system. Dominant discourses of AD and caregiving articulate family caregiving in contrast to biomedical intervention. The dichotomy privileges the ability to affect a biomedical outcome and, using that metric, minimizes caregiving's potential value as meaningful action. Family caregiving comes to be seen as what I term non-action, action that, while voluminous, is not perceived as meaningful in terms of its outcome. Drawing on over 26 months of ethnographic fieldwork in the Midwestern US with families living with early-onset AD (2011-2013), I focus on spousal caregivers to trace how these discourses shape the possibilities for family caregiving. I show how advocacy rhetoric is taken up and reproduced by family members, who learn to see their own caregiving labor through a biomedical lens. However, I also demonstrate that, obscured by dominant discourses, caregivers engage in relational labor, the continual work of making and unmaking social relations. Recognition of caregiving as part of longer-term relational endeavors, I argue, offers the potential to reframe caregiving discourses and reimagine the value the labor of caregiving as meaningful in its own right. Copyright © 2017 Elsevier Ltd. All rights reserved.

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

PubMed

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

2015-11-01

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

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

PubMed

Tornatore, Jane B; Grant, Leslie A

2004-03-01

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

HIPAA and talking with family caregivers: what does the law really say?

PubMed

Levine, Carol

2006-08-01

The Health Insurance Portability and Accountability Act of 1996 (PL 104-191), known as HIPAA, has confused and unnecessarily alarmed many conscientious health care providers. Nurses in particular are likely to be on the front line of family caregivers' inquiries, because physicians are often difficult to reach and because family caregivers look to nurses as sources of reliable information. A major retraining of health care providers at all levels is needed to dampen the "HIPAA scare" and clarify what HIPAA does and does not say about communication with family caregivers.

Family caregivers' opinions about interaction with the environment in consciousness disorders.

PubMed

Moretta, Pasquale; Trojano, Luigi; Masotta, Orsola; Cardinale, Viviana; Loreto, Vincenzo; Estraneo, Anna

2017-05-01

To assess family caregivers' opinions about level of interaction with the environment in their relatives with disorders of consciousness (DOCs) and to explore psychological features of caregivers whose opinions diverge from clinicians' diagnosis. Forty-five family caregivers of 38 DOC inpatients without communication abilities answered 2 questions assessing their opinion about level of interaction with the environment in their relatives. Self-report questionnaires were used to evaluate caregivers' depression, anxiety, psychophysiological disturbances, prolonged grief disorder, coping strategies, quality of perceived needs and social support. Fifteen caregivers (5 relatives of patients in vegetative state and 10 of patients in minimally conscious state) considered their relatives able to communicate, in contrast with clinical diagnosis. These caregivers had significantly higher depressive symptoms, and higher worries about possible death of their relatives with respect to the remaining caregivers. Caregivers of DOC patients detected some interaction with the environment in their relatives more often than care professionals. This is likely related to caregivers' beliefs and expectations, but is also based on observations closer and longer than those possible for physicians. These considerations are important to build a therapeutic alliance with caregivers and to involve them in the diagnostic process and rehabilitative program. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

Race differences in emotional adaptation of family caregivers

PubMed Central

Skarupski, Kimberly A.; McCann, Judy J.; Bienias, Julia L.; Evans, Denis A.

2010-01-01

Objectives This study compares black and white caregivers of persons with Alzheimer’s disease (AD) on two general measures of negative and positive emotion (depressive symptoms, positive mood) and two caregiving specific measures of negative and positive emotion (caregiver burden, caregiver satisfaction). We hypothesized that black caregivers would exhibit lower levels of negative emotion and higher levels of positive emotion over time than whites. Method 396 caregivers were recruited from the Rush Alzheimer’s Disease Center in Chicago, Illinois, as part of a longitudinal study of persons with AD. The analyses for this report are based on data from 307 caregivers who were interviewed quarterly over approximately four years from 1999–2002; an average of nine observations per person. Results The results showed that black caregivers reported fewer depressive symptoms over time than whites (β̂ = −0.14, p < 0.01) but this finding was only for those caregivers living with the care recipient with Alzheimer’s disease. No race differences were found for measures of positive emotion. Conclusion Our data add to the growing body of evidence that blacks have better emotional outcomes when exposed to the stress of providing informal care to a disabled family member. PMID:19882410

Family physicians’ perspectives on care of dementia patients and family caregivers

PubMed Central

Yaffe, Mark J.; Orzeck, Pam; Barylak, Lucy

2008-01-01

ABSTRACT OBJECTIVE To identify factors that facilitate or impede family physicians in ambulatory care of patients with dementia and the family caregivers of such patients. DESIGN Explanatory qualitative analyses of focus group discussions. SETTING Large, medium, and small urban; suburban; and rural family practices from various regions of the province of Quebec. PARTICIPANTS Twenty-five family doctors whose practices had at least 75% ambulatory patients; of these patients, an estimated minimum of 20% were 65 years old or older and at least 2% suffered from dementia. METHOD Physicians were recruited by telephone to be paid participants in their regions in focus groups studying aspects of dementia care in ambulatory settings. Grounded theory and constant comparative methods were used to explore data from 3 French-speaking focus groups and 1 English-speaking focus group. MAIN FINDINGS Physicians were 72% male, had a mean of 21.3 years in practice, and spent about 87% of their professional time in office practice. An estimated 38.7% of their patients were 65 years old or older, and 5.6% of these patients had Alzheimer disease or related dementias. Physicians were comfortable caring for these patients and their family caregivers but thought much of this care should come from support services offered elsewhere. Physicians admitted they had little knowledge of these services and had little interest in acquiring information about them. Government-run, community-based health and social service centres were the “black boxes” to which they referred patients and their caregivers for any form of help. Inconsistencies in the services offered by these centres were noted. CONCLUSION While family doctors are seeking a more seamless form of interdisciplinary dementia care, a large amount of that care comes from support services about which physicians are not well informed and are not interested in learning. PMID:18625826

Elder care and the impact of caregiver strain on the health of employed caregivers.

PubMed

Duxbury, Linda; Higgins, Christopher; Smart, Rob

2011-01-01

As the baby-boom generation moves towards middle age, and their parents toward old age, the number of employees who combine care for an elderly dependant and work will increase in number. These employees are "at risk" of experiencing caregiver strain. This paper advances our understanding of these trends by examining the relationship between caregiver strain and the health of employed caregivers. Our study involved the analysis of data from the 2001 Canadian National Work, Family and Lifestyle Study (N= 31,517). MANOVA was used to determine the relationship between caregiver strain and three situational factors: (1) gender; (2) where the care recipient lives compared to the caregiver; and, (3) family type. Regression was used to determine the relationship between caregiver strain and mental health. We found that caregiver strain depends on gender, family type and location of care. Emotional strain was a significant predictor of mental health. These findings support the need for organizations to expand their thinking around work-life balance to include employees who have eldercare responsibilities.

78 FR 66617 - National Family Caregivers Month, 2013

Federal Register 2010, 2011, 2012, 2013, 2014

2013-11-05

... caregiver support groups--all shaped with the understanding that the generous women and men who take the... with training, counseling, supportive services, and living stipends. Under this law, injured veterans...

Worry about not having a caregiver and depressive symptoms among widowed older adults in China: the role of family support.

PubMed

Xu, Ling; Li, Yawen; Min, Joohong; Chi, Iris

2017-08-01

Using the stress-coping framework, this study examined whether worry about not having a caregiver in old age was associated with depressive symptoms among widowed Chinese older adults, including the moderating effects of self-perceived family support. Using a sample of 5331 widowed adults aged 60 years old or older from the 2006 National Sample Survey of the Aged Population in Urban/Rural China, we regressed measures of depressive symptoms on worry about not having a caregiver. We also tested moderation effects of family support. Individuals who were worried about not having a caregiver reported significantly higher levels of depressive symptoms. Feeling that their children are filial, having instrumental support from children, and having only daughters moderated the effects of worry about not having a caregiver on depressive symptoms. Our findings indicate the detrimental effects of worry about not having a caregiver on the psychological well-being of widowed older adults. This study also highlights some forms of family support that may help reduce such negative effects of widowhood.

Understanding Social Support Burden Among Family Caregivers

PubMed Central

Washington, Karla; Demiris, George; Parker Oliver, Debra; Shaunfield, Sara

2014-01-01

Despite the abundance of research on social support, both as a variable in larger studies and as a central focus of examination, there is little consensus about the relationship between social support and health outcomes. Current social support measures typically account only for frequency and size of network and a paucity of research exists that has explained social support burden, defined as the burden associated with accessing and receiving support from others. We analyzed audio-recorded discussions by hospice family caregivers about their caregiving problems and potential solutions to examine social relationships within networks and identify the processes that influence social support seeking and receiving. Using qualitative thematic analysis, we found that caregivers providing hospice care experience social support burden resulting from perceived relational barriers between friends and family, the inclination to remain in control, recognition of the loss of the patient as a source of social support and guidance in decision-making, family dynamics and decreased availability of emotional support. Social support researchers should consider how the quality of communication and relationships within social networks impacts the provision and subsequent outcomes of social support in varying contexts. Findings from this study suggest that hospice social support resources should be tailored to the caregiver’s support needs and include assessment on the type of support to be offered. PMID:24345081

Work and family conflicts in employees with spinal cord injury and their caregiving partners.

PubMed

Fekete, C; Siegrist, J; Tough, H; Brinkhof, M W G

2018-01-01

Cross-sectional, observational. To investigate the association of conflicts between work and family life with indicators of health and to examine the antecedents of those conflicts in employees with spinal cord injury (SCI) and their caregiving partners. Community, Switzerland. Data from employed persons with SCI (n=79) and caregiving partners (n=93) who participated in the pro-WELL study were used. Logistic and tobit regressions were performed to assess the association of work-family and family-work conflicts with health indicators, namely mental health (36-item Short Form Health Survey (SF-36)), vitality (SF-36), well-being (WHOQoL BREF) and positive and negative affect (Positive and Negative Affect Scale short form (PANAS-S)). Own and partners' engagement in productive activities and socioeconomic circumstances were evaluated as potential antecedents of work-family and family-work conflicts using logistic regression. Work-family conflicts were related to reduced mental health (caregiving partners only), vitality and well-being. Family-work conflicts were linked to reduced mental health, vitality, well-being and positive affect in SCI and to reduced vitality in caregiving partners. Persons with lower income (SCI only) and lower subjective social position reported more conflicts than persons with higher income and higher subjective position. Higher workload increased work-family conflicts in caregiving partners and decreased family-work conflicts in SCI. Education, amount of caregiving, care-receiving and partners' employment status were not associated with the occurrence of conflicts. The optimal balance between work and family life is important to promote mental health, vitality and well-being in employees with SCI and their caregiving partners. This is especially true in employees perceiving their social position as low and in caregivers with a high workload.

Family caregivers of older adults on home enteral nutrition have multiple unmet task-related training needs and low overall preparedness for caregiving.

PubMed

Silver, Heidi J; Wellman, Nancy S; Galindo-Ciocon, Daisy; Johnson, Paulette

2004-01-01

We used stress process theory to identify family caregiving variables that are salient to the experience of managing older adults' home enteral nutrition. In this article, we describe the specific tasks family caregivers performed and their unique training needs in the context of caregiver preparedness, competence, effectiveness, and health care use. Hospital billing lists from two university-affiliated institutions in Miami, FL, were used to identify older adults who had enteral tubes placed over a 6-month period. Consent was obtained from those older adults discharged for the first time on home enteral nutrition and their family caregivers at the first scheduled outpatient visit. In-home interviews were conducted with a diverse sample of 30 family caregivers (14 white, 8 Hispanic, 7 African-American, 1 Asian) during their first 3 months (mean=1.83+/-0.69 months) of home enteral nutrition caregiving. Descriptive statistics were used to summarize data for all variables; chi(2) analysis was conducted to analyze differences in categorical variables. One-way analysis of variance was used to analyze mean differences among caregivers grouped by ethnicity for total number of hours and tasks performed. Post hoc comparisons were conducted using the Tukey HSD test. The Spearman rho correlations were calculated to assess bivariate associations between quantitative variables. Caregivers reported providing from 6 to 168 hours of care weekly (mean=61.87+/-49.67 hours), in which they performed an average of 19.73+/-8.09 caregiving tasks daily. Training needs identified were greatest for technical and nutrition-related tasks. Preparedness for caregiving scores were low (mean=1.72, maximum=4.0) and positively correlated with caregiver competence (P<.001) and self-rated caregiver effectiveness (P=.004). Preparedness negatively correlated with health care use (P=.03). Caregivers of older adults on home enteral nutrition need training for multiple nutrition-related and caregiving

Traumatic Brain Injury: Unmet Support Needs of Caregivers and Families in Florida

PubMed Central

Dillahunt-Aspillaga, Christina; Jorgensen-Smith, Tammy; Ehlke, Sarah; Sosinski, Melanie; Monroe, Douglas; Thor, Jennifer

2013-01-01

Sustaining a Traumatic Brain Injury results in familial strain due to the significant impact the injury has upon the role and function of individuals and their families at home and in the community. Using the Stress Process Model of Caregiving, a caregiver needs assessment survey was developed and conducted to better understand the needs of individuals with a Traumatic Brain Injury and their caregivers. Survey results indicate that caregivers experience many challenges including unmet needs in areas of relational supports such as maintaining relationships, long-term emotional and financial support for themselves and the survivor, and the need for a patient or caregiver advocate. Implications for future practice are presented. PMID:24358236

The Effects of Caregiving Resources on Perceived Health among Caregivers

PubMed Central

Hong, Michin; Harrington, Donna

2016-01-01

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

Family Caregivers for Veterans with Spinal Cord Injury: Exploring the Stresses and Benefits

DTIC Science & Technology

2015-10-01

information provided by those living the experience of caregiving and SCI, enabling us to learn what matters most to these caregivers and can help inform...do the things I want to because of caregiving responsibilities 34. I feel I have to be constantly aware of what my family member with SCI wants and...Award Number: W81XWH-11-2-0213 TITLE: “Family Caregivers for Veterans with Spinal Cord Injury: Exploring the Stresses and Benefits” PRINCIPAL

Use of the measurement of medication administration hassles with Mexican American family caregivers.

PubMed

Kao, Hsueh-Fen S; Lynn, Mary R

2009-09-01

This study builds on earlier work on medication administration hassles, minor daily irritants experienced by family caregivers of older relatives, by investigating the feasibility of using the Family Caregiver Medication Administration Hassles Scale (FCMAHS) for use with Mexican American caregivers. Appropriate medication administration is a critical factor in the effective management of chronic illness. When medication regimens are managed on behalf of an older care recipient, especially those with numerous medications for a variety of conditions, the caregiving task is even more complex. Relying on family support is common for older Mexican Americans. Despite this, there is little known about how Mexican Americans are handling their caregiving duties at home. A non-experimental methodological design was used to assess the psychometric properties of the FCMAHS with Mexican Americans, chosen because they are a rapidly growing population in the US. A purposive sample of 239 Mexican American adult caregivers, recruited in Dallas and San Diego, completed a brief biographical survey and the version of the FCMAHS created for Mexican Americans, i.e., the FCMAHS-MA. Principal axis factoring with orthogonal rotation was used to extract six factors which accounted for 53% of the variance in total scores - initial information seeking, safety issues, advanced information acquisition, scheduling, daily routine and prescription filling. Reliability estimates for the factors (alpha) ranged from 0.70-0.90. Test-retest reliability across a three-week interval was r = 0.64. The FCMAHC-MA shows promise as a guide for future caregiving intervention studies on family medication management for older relatives; however, it would benefit from refinement in future studies. Understanding family caregivers' hassles with medication administration is important because these hassles can accumulate and lead to caregiver strain. Culturally relevant intervention depends on accurate measurement of

Family caregivers' experiences of caring for patients with heart failure: a descriptive, exploratory qualitative study.

PubMed

Etemadifar, Shahram; Bahrami, Masoud; Shahriari, Mohsen; Farsani, Alireza Khosravi

2015-06-01

Living with heart failure is a complex situation for family caregivers. Many studies addressing the challenges faced by heart failure family caregivers have already been conducted in Western societal settings. Sociocultural factors and perspectives influence the family caring experience and roles. The ethnic/culturally based differences in family caring behavior make this a subject worth further exploration and clarification. This study explores the experiences of family caregivers in Iran of caring for patients with heart failure. A descriptive, exploratory, and qualitative approach was applied to gain authentic insight into the experiences of participants. Purposive sampling was used to recruit 21 family caregivers from three educational hospitals in Isfahan, Iran. Data were collected using semistructured interviews and field notes. Interviews and field notes were transcribed verbatim and concurrently analyzed. Three major themes emerged from the analysis of the transcripts: caregiver uncertainty, lack of familial and organizational support, and Allah-centered caring. Participants believed that they did not have the basic knowledge related to their disease and drugs. In addition, they received little guidance from the healthcare team. Lack of support and insurance as well as financial issues were major problems faced by the caregivers. They accepted the providence of Allah and noted that Allah always helps them accomplish their caregiving responsibilities. The care performed by the caregivers of patients with heart failure exceeds their individual capabilities. Nurses, other healthcare providers, and health policy makers may use the findings of this study to develop more effective programs to address these challenges and to provide more effective support.Sociocultural factors and perspectives were the primary factors affecting the caregiving experiences of participants in this study. Improved understanding of these factors and perspectives will help healthcare

Validation of the Italian Version of the Caregiver Abuse Screen among Family Caregivers of Older People with Alzheimer's Disease.

PubMed

Melchiorre, Maria Gabriella; Di Rosa, Mirko; Barbabella, Francesco; Barbini, Norma; Lattanzio, Fabrizia; Chiatti, Carlos

2017-01-01

Introduction . Elder abuse is often a hidden phenomenon and, in many cases, screening practices are difficult to implement among older people with dementia. The Caregiver Abuse Screen (CASE) is a useful tool which is administered to family caregivers for detecting their potential abusive behavior. Objectives . To validate the Italian version of the CASE tool in the context of family caregiving of older people with Alzheimer's disease (AD) and to identify risk factors for elder abuse in Italy. Methods . The CASE test was administered to 438 caregivers, recruited in the Up-Tech study. Validity and reliability were evaluated using Spearman's correlation coefficients, principal-component analysis, and Cronbach's alphas. The association between the CASE and other variables potentially associated with elder abuse was also analyzed. Results . The factor analysis suggested the presence of a single factor, with a strong internal consistency (Cronbach's alpha = 0.86). CASE score was strongly correlated with well-known risk factors of abuse. At multivariate level, main factors associated with CASE total score were caregiver burden and AD-related behavioral disturbances. Conclusions . The Italian version of the CASE is a reliable and consistent screening tool for tackling the risk of being or becoming perpetrators of abuse by family caregivers of people with AD.

Validation of the Italian Version of the Caregiver Abuse Screen among Family Caregivers of Older People with Alzheimer's Disease

PubMed Central

Di Rosa, Mirko; Barbabella, Francesco; Barbini, Norma; Chiatti, Carlos

2017-01-01

Introduction. Elder abuse is often a hidden phenomenon and, in many cases, screening practices are difficult to implement among older people with dementia. The Caregiver Abuse Screen (CASE) is a useful tool which is administered to family caregivers for detecting their potential abusive behavior. Objectives. To validate the Italian version of the CASE tool in the context of family caregiving of older people with Alzheimer's disease (AD) and to identify risk factors for elder abuse in Italy. Methods. The CASE test was administered to 438 caregivers, recruited in the Up-Tech study. Validity and reliability were evaluated using Spearman's correlation coefficients, principal-component analysis, and Cronbach's alphas. The association between the CASE and other variables potentially associated with elder abuse was also analyzed. Results. The factor analysis suggested the presence of a single factor, with a strong internal consistency (Cronbach's alpha = 0.86). CASE score was strongly correlated with well-known risk factors of abuse. At multivariate level, main factors associated with CASE total score were caregiver burden and AD-related behavioral disturbances. Conclusions. The Italian version of the CASE is a reliable and consistent screening tool for tackling the risk of being or becoming perpetrators of abuse by family caregivers of people with AD. PMID:28265571

Strengthening Incarcerated Families: Evaluating a Pilot Program for Children of Incarcerated Parents and Their Caregivers.

PubMed

Miller, Alison L; Perryman, Jamie; Markovitz, Lara; Franzen, Susan; Cochran, Shirley; Brown, Shavonnea

2013-10-01

Parental incarceration can be devastating for families. Children may experience difficulties, and the stress on caregivers who take on unexpected childrearing is high. We implemented and evaluated a family-level intervention with caregivers and children experiencing parental (typically maternal) incarceration, in a community setting. We partnered with a community-based organization serving families with an incarcerated parent to conduct a pilot trial of the Strengthening Families Program (SFP). Process evaluation indicated high implementation fidelity, satisfaction, engagement, and attendance. Outcome evaluation results indicated positive changes in family-level functioning, caregivers' positive parenting, and caregiver depression symptoms from pre- to post-intervention, with some changes retained at follow-up 4 months later. Implications for preventive interventions with children of incarcerated parents, and their caregivers, are discussed.

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

PubMed

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

1999-10-01

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

Perceived mood, health, and burden in female Mexican American family cancer caregivers.

PubMed

Wells, Jo Nell; Cagle, Carolyn Spence; Marshall, David; Hollen, Mary Luna

2009-07-01

Female family caregivers of various global cultures provide basic care in health, social, emotional, and financial domains for family members with cancer and may sacrifice their own health to do so. To learn about role-related mood, health status self-perceptions, and burden of one cultural group, we used qualitative and quantitative approaches to study 34 Mexican American (MA) women who provided care for an ill family member with cancer. We report quantitative data on study variables and make comparisons with caregiver qualitative reports. Implications for health planning, service delivery, and future research with underserved, minority female caregivers are presented.

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

PubMed

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

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

Nurses negotiating professional-familial care boundaries: striving for balance within double duty caregiving.

PubMed

Ward-Griffin, Catherine; Brown, Judith Belle; St-Amant, Oona; Sutherland, Nisha; Martin-Matthews, Anne; Keefe, Janice; Kerr, Mickey

2015-02-01

The purpose of this sequential, two-phase mixed-methods study was to examine the health of male and female nurses who provided care to older relatives (i.e., double duty caregivers). We explored the experiences of 32 double duty caregivers, which led to the development of an emergent grounded theory, Negotiating Professional-Familial Care Boundaries with two broad dialectical processes: professionalizing familial care and striving for balance. This article examines striving for balance, which is the process that responds to familial care expectations in the midst of available resources and reflects the health experiences of double duty caregivers. Two subprocesses of striving for balance, reaping the benefits and taking a toll, are presented in three composite vignettes, each representing specific double duty caregiving (DDC) prototypes (making it work, working to manage, living on the edge). This emergent theory extends current thinking of family caregiving that will inform the development and refinement of practices and policies relevant to DDC. © The Author(s) 2014.

Barriers to Family Caregivers' Coping With Patients With Severe Mental Illness in Iran.

PubMed

Ebrahimi, Hossein; Seyedfatemi, Naeimeh; Namdar Areshtanab, Hossein; Ranjbar, Fatemeh; Thornicroft, Graham; Whitehead, Bill; Rahmani, Farnaz

2018-05-01

The broad spectrum of problems caused by caring for a patient with mental illness imposes a high burden on family caregivers. This can affect how they cope with their mentally ill family members. Identifying caregivers' experiences of barriers to coping is necessary to develop a program to help them overcome these challenges. This qualitative content analysis study explored barriers impeding family caregivers' ability to cope with their relatives diagnosed with severe mental illness (defined here as schizophrenia, schizoaffective disorders, and bipolar affective disorders). Sixteen family caregivers were recruited using purposive sampling and interviewed using a semi-structured in-depth interview method. Data were analyzed by a conventional content analytic approach. Findings consisted of four major categories: the patient's isolation from everyday life, incomplete recovery, lack of support by the mental health care system, and stigmatization. Findings highlight the necessity of providing support for caregivers by the mental health care delivery service system.

Family caregiver adjustment and stroke survivor impairment: A path analytic model.

PubMed

Pendergrass, Anna; Hautzinger, Martin; Elliott, Timothy R; Schilling, Oliver; Becker, Clemens; Pfeiffer, Klaus

2017-05-01

Depressive symptoms are a common problem among family caregivers of stroke survivors. The purpose of this study was to examine the association between care recipient's impairment and caregiver depression, and determine the possible mediating effects of caregiver negative problem-orientation, mastery, and leisure time satisfaction. The evaluated model was derived from Pearlin's stress process model of caregiver adjustment. We analyzed baseline data from 122 strained family members who were assisting stroke survivors in Germany for a minimum of 6 months and who consented to participate in a randomized clinical trial. Depressive symptoms were measured with the Center for Epidemiological Studies Depression Scale. The cross-sectional data were analyzed using path analysis. The results show an adequate fit of the model to the data, χ2(1, N = 122) = 0.17, p = .68; comparative fit index = 1.00; root mean square error of approximation: p < .01; standardized root mean square residual = 0.01. The model explained 49% of the variance in the caregiver depressive symptoms. Results indicate that caregivers at risk for depression reported a negative problem orientation, low caregiving mastery, and low leisure time satisfaction. The situation is particularly affected by the frequency of stroke survivor problematic behavior, and by the degree of their impairments in activities of daily living. The findings provide empirical support for the Pearlin's stress model and emphasize how important it is to target these mediators in health promotion interventions for family caregivers of stroke survivors. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

The influence of Chinese culture on family caregivers of stroke survivors: A qualitative study.

PubMed

Qiu, Xichenhui; Sit, Janet W H; Koo, Fung Kuen

2018-01-01

To explore and describe the caregiving experiences of Chinese stroke caregivers. Previous research has indicated that culture can have a significant impact on the stroke caregiving experience. Moreover, scant research exists on stroke caregivers' experience within the Chinese culture. A qualitative descriptive design was used. In-depth, semistructured interviews were conducted with 25 family caregivers of stroke survivors. The interviews were audiotaped, transcribed and analysed. Content analysis was also performed. Twenty-five family caregivers of stroke survivors were recruited for the study. On average, respondents were 66 years old (range 45-82 years). Of 25 interviewees, 76% were female, 64% were spouse-caregivers and 36% were children-caregivers. Three themes reflecting the influence of Chinese culture on stroke caregiving emerged from the interviews. (i) Caregiving role perception. Informants accepted caregiving for the sick family member as an expected part of life, a culturally prescribed obligation and an expression of reciprocal love. (ii) Coping strategies. Connecting with family resources and connecting with inner strength were frequently reported coping strategies. (iii) Self-sacrifice. Informants identified self-reliance and feeling of restraint in their utilisation or access of formal caregiving service. Chinese caregivers sacrifice themselves for the care recipients regardless of the hardships and the neglect of their own health. Our findings provide a comprehensive and culturally sensitive perspective in understanding the experience of stroke caregivers in Chinese communities. Cultural and religious backgrounds were found to influence Chinese stroke caregivers' experience, coping strategies and self-sacrifice behaviour in idiosyncratic ways. Research on the practice of culture can serve as a basis for the formulation of specific policies and effective interventions for supporting stroke caregivers of different cultural backgrounds. © 2017 John

Family medical leave. An employee benefit for working caregivers of elderly family members.

PubMed

Carruth, A K; Booth, D

1991-09-01

Future trends include a decrease in the number of adult children, an increase in the number of individuals over age 65, single parent families, working women, and individuals with no health care insurance. As more women with multiple roles and responsibilities enter and continue as part of the work force, employers recognize the need for support of family issues. Currently many employers lack initiative to make these needed changes. The occupational health nurses' role in relation to future policy for working caregivers includes assessment of how employment and caregiving impact work performance, job satisfaction, and health; and participation in defining public policy issues.

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.

Relationships between Caregiver Violence Exposure, Caregiver Depression, and Youth Behavioral Health among Homeless Families

ERIC Educational Resources Information Center

McGuire-Schwartz, Mandy; Small, Latoya A.; Parker, Gary; Kim, Patricia; McKay, Mary

2015-01-01

Homelessness affects a large and increasing number of families in the United States, and exposure to violence and other potentially traumatic events is common among homeless families. It is important to understand more about this population and, more specifically, about the relationship between youth mental health and caregiver mental health and…

Effect of acculturation and mutuality on family loyalty among Mexican American caregivers of elders.

PubMed

Kao, Hsueh-Fen S; An, Kyungeh

2012-06-01

Informal family care for elders is conventional in Mexican American communities despite increasing intergenerational gaps in filial values. In our study, we explored whether acculturation and dyadic mutuality, as perceived by Mexican American family caregivers, explain the caregivers' expectations of family loyalty toward elderly relatives. A nonexperimental, correlational design with convenience sampling was used in El Paso, Texas, from October 2007 to January 2008. Three bilingual promotoras collected data from 193 Mexican American adult caregivers of community-dwelling elders using three scales designed for Mexican Americans: the Acculturation Rating Scale for Mexican Americans II-Short Form, the Mutuality Scale, and the Expectations of Family Loyalty of Children Toward Elderly Relatives Scale. Confirmatory factor analysis was used to analyze the data. Acculturation had a marginal effect (r = .21, p < .05), but mutuality presented a strong correlation (r = .45, p < .001) with the expectations of family loyalty toward elderly relatives. There was no significant correlation between acculturation and mutuality (r = .05). Although Mexican American caregivers with strong Mexican orientation may have high expectations of family loyalty toward elderly relatives, mutuality exhibits more significant effects on expectations. Among Mexican Americans, mutuality between the caregiving dyad, as perceived by caregivers, may be a better predictor of filial values than caregivers' acculturation alone. It may be useful to incorporate the dual paradigm of acculturation and mutuality into immigrant family care for elderly relatives. © 2012 Sigma Theta Tau International.

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

PubMed

Ray, Robin A; Street, Annette F

2006-10-01

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

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

PubMed

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

2017-07-01

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

Socialization of coping with community violence: influences of caregiver coaching, modeling, and family context.

PubMed

Kliewer, Wendy; Parrish, Katie Adams; Taylor, Kelli W; Jackson, Kate; Walker, Jean M; Shivy, Victoria A

2006-01-01

A socialization model of coping with community violence was tested in 101 African American adolescents (55% male, ages 9-13) and their maternal caregivers living in high-violence areas of a mid-sized, southeastern city. Participants completed interviews assessing caregiver coping, family context, and child adjustment. Caregiver-child dyads also discussed a film clip depicting community violence. Parental coaching (caregivers' strategies suggesting how to cope) and child-reported coping were coded from the discussion. Coaching, modeling (caregivers' own coping), and family context each contributed to children's coping with violence. Children's problem-focused coping in response to violence had the strongest associations with changes in their adjustment 6 months later. Implications for interventions with youth and families are discussed.

Death with dignity from the perspective of the surviving family: a survey study among family caregivers of deceased older adults.

PubMed

van Gennip, Isis E; Pasman, H Roeline W; Kaspers, Pam J; Oosterveld-Vlug, Mariska G; Willems, Dick L; Deeg, Dorly J H; Onwuteaka-Philipsen, Bregje D

2013-07-01

Death with dignity has been identified as important both to patients and their surviving family. While research results have been published on what patients themselves believe may affect the dignity of their deaths, little is known about what family caregivers consider to be a dignified death. (1) To assess the prevalence of death with dignity in older adults from the perspective of family caregivers, (2) to determine factors that diminish dignity during the dying phase according to family caregivers, and (3) to identify physical, psychosocial, and care factors associated with death with dignity. A survey study with a self-administered questionnaire. Family caregivers of 163 deceased older (>55 years of age) adults ("patients") who had participated in the Longitudinal Aging Study Amsterdam. Of the family caregivers, 69% reported that their relative had died with dignity. Factors associated with a dignified death in a multivariate regression model were patients feeling peaceful and ready to die, absence of anxiety and depressive mood, presence of fatigue, and a clear explanation by the physician of treatment options during the final months of life. The physical and psychosocial condition of the patient in combination with care factors contributed to death with dignity from the perspective of the family caregiver. The patient's state of mind during the last phase of life and clear communication on the part of the physician both seem to be of particular importance.

Family caregiver preferences for patient decisional control among Hispanics in the United States and Latin America

PubMed Central

Yennurajalingam, Sriram; Noguera, Antonio; Parsons, Henrique Afonseca; Torres-Vigil, Isabel; Duarte, Eva Rosina; Palma, Alejandra; Bunge, Sofia; Palmer, J. Lynn; Delgado-Guay, Marvin Omar; Bruera, Eduardo

2013-01-01

Background Understanding family caregivers’ decisional role preferences is important for communication, quality of care, and patient and family satisfaction. The family caregiver has an important role in a patient’s decisional role preferences. There are limited studies on family caregivers’ preferences of the patient’s decisional control at the end of life among Hispanics. Aims To identify Hispanic caregivers’ preferences of the decision control of patients with advanced cancer and to compare the preferences of caregivers in Latin America (HLA) and Hispanic American (HUSA) caregivers. Design We surveyed patients and their family caregivers referred to outpatient palliative care clinics in the United States, Chile, Argentina, and Guatemala. Caregiver preferences of patient’s decisional control were evaluated using the Control Preference Scale. Caregivers’ and patients’ socio-demographic variables, patient performance status, and HUSA patient acculturation level was also collected. Participants A total of 387 caregivers were surveyed: 100 (26%) in Chile, 99 (26%) in Argentina, 97 (25%) in Guatemala, and 91 (24%) in the United States. The median age was 56 years, and 59% were female. Results Caregiver preference of patients decisions control was passive, shared, and active by 10 (11%), 45 (52%) and 32 (37%) HUSA caregivers and 54 (19%), 178 (62%) and 55 (19%) HLA caregivers (p=0.0023). Caregiver acculturation level did not affect the preferences of the HUSA sample (p=0.60). Conclusions Most Hispanic family caregivers preferred the patient to make shared decisions. HLA caregivers preferred more frequently patients to assume a passive decisional role. Acculturation did not influence the preferences of HUSA caregivers. PMID:23670718

Mexican American Adolescents' Family Caregiving: Selection Effects and Longitudinal Associations with Adjustment

ERIC Educational Resources Information Center

East, Patricia L.; Weisner, Thomas S.

2009-01-01

One hundred ten Mexican American adolescents (12-17 years) who provide infant care for their older sisters were studied to determine the effects of family caregiving responsibilities on adolescents' adjustment. Controlling for prior adjustment and family context factors, providing many hours of caregiving predicted an increase in youths' school…

Factors associated with medication hassles experienced by family caregivers of older adults.

PubMed

Travis, Shirley S; McAuley, William J; Dmochowski, Jacek; Bernard, Marie A; Kao, Hsueh-Fen S; Greene, Ruth

2007-04-01

We wished to identify potential factors associated with medication administration hassles, daily irritants, among informal caregivers who provide long-term medication assistance to persons aged 55 or older. A sample of 156 informal caregivers were recruited from seven states and several types of settings. The dependent variable was scores on the Family Caregiver Medication Administration Hassles Scale (FCMAHS). Independent variables included in the analyses were medication complexity; caregiver's gender, ethnicity, relationship to recipient, length of time in caregiving, education, and employment outside the home; care recipient's physical capacity and mental capacity; and whether the caregiver and care recipient live together. After preliminary analysis to reduce the number of independent variables, the remaining variables were included in a linear model (GLM procedure). Possible interactions and residuals were considered. Whites and Hispanics experience greater medication administration hassles than other groups, and perceived hassle intensity increases with medication complexity. Medication administration hassle scores increase with increasing education levels up to a high school degree, after which they remain consistently high. Caregivers whose care recipients have moderate levels of cognitive functioning have higher medication administration hassles scores than those whose care recipients have very high or very low cognitive functioning. The preliminary set of significant variables can be used to identify caregivers who may be at risk of experiencing medication administration hassles, increased stress, and potentially harmful events for their care recipients. Family caregivers are accepting complex caregiving responsibility for family members while receiving little or no support or assistance with caregiving hassles associated with this duty. The FCMAHS offers the means to monitor how caregivers are handling the daily irritants involved with medication

Family caregivers in public tertiary care hospitals in Bangladesh: Risks and opportunities for infection control

PubMed Central

Islam, M. Saiful; Luby, Stephen P.; Sultana, Rebeca; Rimi, Nadia Ali; Zaman, Rashid Uz; Uddin, Main; Nahar, Nazmun; Rahman, Mahmudur; Hossain, M. Jahangir; Gurley, Emily S.

2015-01-01

Background Family caregivers are integral to patient care in Bangladeshi public hospitals. This study explored family caregivers’ activities and their perceptions and practices related to disease transmission and prevention in public hospitals. Methods Trained qualitative researchers conducted a total of 48 hours of observation in 3 public tertiary care hospitals and 12 in-depth interviews with family caregivers. Results Family caregivers provided care 24 hours a day, including bedside nursing, cleaning care, and psychologic support. During observations, family members provided 2,065 episodes of care giving, 75% (1,544) of which involved close contact with patients. We observed family caregivers washing their hands with soap on only 4 occasions. The majority of respondents said diseases are transmitted through physical contact with surfaces and objects that have been contaminated with patient secretions and excretions, and avoiding contact with these contaminated objects would help prevent disease. Conclusion Family caregivers are at risk for hospital-acquired infection from their repeated exposure to infectious agents combined with their inadequate hand hygiene and knowledge about disease transmission. Future research should explore potential strategies to improve family caregivers’ knowledge about disease transmission and reduce family caregiver exposures, which may be accomplished by improving care provided by health care workers. PMID:24406254

Family caregivers' conceptualisation of quality end-of-life care for people with dementia: A qualitative study.

PubMed

Davies, Nathan; Rait, Greta; Maio, Laura; Iliffe, Steve

2017-09-01

People with dementia have been described as the 'disadvantaged dying' with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers' perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia. This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia. Qualitative study using in-depth interviews and analysed using thematic analysis. Purposive sampling from a third sector organisation's caregiver network was used to recruit 47 caregivers in England (2012-2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers. Three over-arching themes were derived from the interviewees' discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness. End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.

Critically examining diversity in end-of-life family caregiving: implications for equitable caregiver support and Canada’s Compassionate Care Benefit

PubMed Central

2012-01-01

Introduction Family (i.e., unpaid) caregiving has long been thought of as a ‘woman’s issue’, which ultimately results not only in gendered, but also financial and health inequities. Because of this, gender-based analyses have been prioritized in caregiving research. However, trends in current feminist scholarship demonstrate that gender intersects with other axes of difference, such as culture, socio-economic status, and geography to create diverse experiences. In this analysis we examine how formal front-line palliative care providers understand the role of such diversities in shaping Canadian family caregivers’ experiences of end-of-life care. In doing so we consider the implications of these findings for a social benefit program aimed at supporting family caregivers, namely the Compassionate Care Benefit (CCB). Methods This analysis contributes to a utilization-focused evaluation of Canada’s CCB, a social program that provides job security and limited income assistance to Canadian family caregivers who take a temporary leave from employment to provide care for a dying family member at end-of-life. Fifty semi-structured phone interviews with front-line palliative care providers from across Canada were conducted and thematic diversity analysis of the transcripts ensued. Results Findings reveal that experiences of caregiving are not homogenous and access to services and supports are not universal across Canada. Five axes of difference were commonly raised by front-line palliative care providers when discussing important differences in family caregivers’ experiences: culture, gender, geography, lifecourse stage, and material resources. Our findings reveal inequities with regard to accessing needed caregiver services and resources, including the CCB, based on these axes of difference. Conclusions We contend that without considering diversity, patterns in vulnerability and inequity are overlooked, and thus continually reinforced in health policy. Based on

Implications of the Schiavo Case for Understanding Family Caregiving Issues at the End of Life

ERIC Educational Resources Information Center

Roscoe, Lori A.; Osman, Hana; Haley, William E.

2006-01-01

The case of Mrs. Terri Schiavo illustrates common themes in family caregiving at the end of life but is distinctive from most family caregiving situations in other ways. As occurred in Mrs. Schiavo's case, family members do act as both caregivers and decisionmakers for their loved ones at the end of life, often without the benefit of written…

Anticipatory grief in new family caregivers of persons with mild cognitive impairment and dementia.

PubMed

Garand, Linda; Lingler, Jennifer H; Deardorf, Kaitlyn E; DeKosky, Steven T; Schulz, Richard; Reynolds, Charles F; Dew, Mary Amanda

2012-01-01

Anticipatory grief is the process of experiencing normal phases of bereavement in advance of the loss of a significant person. To date, anticipatory grief has been examined in family caregivers to individuals who have had Alzheimer disease (AD) an average of 3 to 6 years. Whether such grief is manifested early in the disease trajectory (at diagnosis) is unknown. Using a cross-sectional design, we examined differences in the nature and extent of anticipatory grief between family caregivers of persons with a new diagnosis of mild cognitive impairment (MCI, n=43) or AD (n=30). We also determined whether anticipatory grief levels were associated with caregiver demographics, caregiving burden, depressive symptoms, and marital quality. The mean anticipatory grief levels were high in the total sample, with AD caregivers endorsing significantly more anticipatory grief than MCI caregivers. In general, AD caregivers endorsed difficulty in functioning, whereas MCI caregivers focused on themes of "missing the person" they once knew. Being a female caregiver, reporting higher levels of objective caregiving burden, and higher depression levels each had independent, statistically significant relationships with anticipatory grief. Given these findings, family caregivers of individuals with mild cognitive deficits or a new AD diagnosis may benefit from interventions specifically addressing anticipatory grief.

Anticipatory Grief in New Family Caregivers of Persons with Mild Cognitive Impairment and Dementia

PubMed Central

Garand, Linda; Lingler, Jennifer H.; Deardorf, Kaitlyn E.; DeKosky, Steven T.; Schulz, Richard; Reynolds, Charles F.; Dew, Mary Amanda

2011-01-01

Anticipatory grief is the process of experiencing normal phases of bereavement in advance of the loss of a significant person. To date, anticipatory grief has been examined in family caregivers to individuals who have had Alzheimer’s Disease (AD) an average of 3 to 6 years. Whether such grief is manifested early in the disease trajectory (at diagnosis) is unknown. Using a cross-sectional design, we examined differences in the nature and extent of anticipatory grief between family caregivers of persons with a new diagnosis of mild cognitive impairment (MCI, n=43) or AD (n=30). We also determined whether anticipatory grief levels were associated with caregiver demographics, caregiving burden, depressive symptoms and marital quality. Mean anticipatory grief levels were high in the total sample, with AD caregivers endorsing significantly more anticipatory grief than MCI caregivers. In general, AD caregivers endorsed difficulty functioning whereas MCI caregivers focused on themes of “missing the person” they once knew. Being a female caregiver, reporting higher levels of objective caregiving burden and higher depression levels each bore independent, statistically significant relationships with anticipatory grief. Given these findings, family caregivers of individuals with mild cognitive deficits or a new AD diagnosis may benefit from interventions specifically addressing anticipatory grief. PMID:21946013

The Caregiver Vigilance Scale: application and validation in the Resources for Enhancing Alzheimer's Caregiver Health (REACH) project.

PubMed

Mahoney, Diane Feeney; Jones, Richard N; Coon, David W; Mendelsohn, Aaron B; Gitlin, Laura N; Ory, Marcia

2003-01-01

This article reports on the measurement properties of Caregiver Vigilance, a four-item caregiver self-report of perceived oversight demand for Alzheimer's disease and related disorders family caregiving. The self-report uses data from the Resources for Enhancing Alzheimer's Caregiver Health (REACH) project, a multisite National Institutes of Health (NIH) sponsored study of over 1,200 family caregivers. Results indicate that the items were clearly understood by the racially/ethnically diverse respondents; and, when responses were transformed into a summary scale and analyzed, unidimensionality was evident and internal consistency reliability favorably demonstrated. We suggest using the Caregiver Vigilance Scale in conjunction with traditional burden measures to systematically include the caregiving time associated with protectively watching over care recipients and the daily duration of this responsibility. We also highlight the practical utility of selected items for potential use in the caregiver assessment process.

Association between family satisfaction and caregiver burden in cancer patients receiving outreach palliative care at home.

PubMed

Naoki, Yoko; Matsuda, Yoshinobu; Maeda, Isseki; Kamino, Hideka; Kozaki, Yoko; Tokoro, Akihiro; Maki, Norimasa; Takada, Minoru

2018-06-01

ABSTRACTObjective:Little is known about the associations between family satisfaction with end-of-life care and caregiver burden. We conducted a researcher-assisted questionnaire survey to clarify the impact of caregiver burden on family satisfaction and to determine the types of burden that decrease family satisfaction. Bereaved family caregivers of patients with advanced cancer who received our outreach palliative care service were retrospectively identified. Family satisfaction with the end-of-life care provided by the palliative care service and caregiver burden were quantified using the Japanese versions of the FAMCARE Scale and the Zarit Burden Interview (ZBI), respectively. Our study subjects included 23 family caregivers. The mean scores on the FAMCARE Scale and the ZBI for the total population were 72.8 ± 11.2 and 22.8 ± 17.3, respectively, indicating moderate-to-high satisfaction and low-to-moderate burden. Caregiver burden had a strong negative correlation to family satisfaction with end-of-life care (Spearman's rho [ρ] = -0.560, p = 0.005), which remained after adjustment for potential confounders (standardized beta [β] = -0.563, p = 0.01). Several burden items-including loss of control, personal time, social engagement with others, feeling angry with the patient, feeling that the patient wants more help than he/she needs, and a wish to leave the care to someone else-were associated with decreased satisfaction. The major cause of dissatisfaction for family members included the information provided regarding prognosis, family conferences with medical professionals, and the method of involvement of family members in care decisions. Caregiver burden can be a barrier to family satisfaction with end-of-life care at home. A home care model focused on caregiver burden could improve end-of-life experiences for patients and family caregivers.

Randomized Trial of the Family Intervention: Telephone Tracking-Caregiver for Dementia Caregivers: Use of Community and Healthcare Resources.

PubMed

Tremont, Geoffrey; Davis, Jennifer D; Ott, Brian R; Galioto, Rachel; Crook, Cara; Papandonatos, George D; Fortinsky, Richard H; Gozalo, Pedro; Bishop, Duane S

2017-05-01

To examine the effects of a telephone-delivered intervention, Family Intervention: Telephone Tracking-Caregiver (FITT-C), on community support and healthcare use by dementia caregivers. Randomized, controlled trial. Academic medical center. Dyads (n = 250) of distressed informal dementia caregivers and care recipients. Caregivers were randomly assigned to receive the FITT-C (n = 133) or telephone support (TS; n = 117). Both groups received 16 telephone contacts from a master's-level therapist over 6 months. The FITT-C intervention provided psychoeducation, problem solving, and other directive approaches based on assessment of critical areas (e.g., mood, behavior, family functioning, social support). TS provided supportive therapeutic strategies. Outcome variables were caregiver report of community support service use, number of visits to the emergency department (ED) for caregivers and care recipients, and hospital stays for caregivers during the interventions. Intervention groups did not differ in demographic characteristics, use of support services, or use of healthcare resources at baseline. Caregivers who received the FITT-C used community support services at end of treatment significantly more than those receiving TS (P = .02). FITT-C caregivers had a significantly lower rate of ED visits (rate difference 9.5%, P = .048) and hospital stays (rate difference 11.4%, P = .01) over the 6-month course of the intervention than TS caregivers. Care recipient use of community or medical resources did not differ according to group. An entirely telephone-delivered intervention was effective in increasing caregiver engagement in community resources and reducing caregiver use of hospital-based healthcare resources. Results highlight the potential effect of FITT-C on healthcare use. © 2016, Copyright the Authors Journal compilation © 2016, The American Geriatrics Society.

Family Caregiver Uplift and Burden: Associations with Aggressive Behavior in Adults with Intellectual Disability

ERIC Educational Resources Information Center

Unwin, Gemma; Deb, Shoumitro

2011-01-01

The purpose of this study was to investigate the experience of family caregivers caring for adults with intellectual disabilities (ID) who display aggressive behavior in terms of associations with caregiver burden and uplift. The family caregivers of 44 people with ID and aggressive behavior were interviewed using a suite of questionnaires and…

Use of Zarit Burden Interview in analysis of family caregivers' perception among Taiwanese caring with hospitalized relatives.

PubMed

Yeh, Pi-Ming; Chang, Yuanmay

2015-10-01

This study was conducted to examine the relationships between family caregivers' perception of caregiving and its influencing factors among Taiwanese with hospitalized relatives. The study used a cross-sectional and descriptive correlational design. A convenience sample of 200 primary caregivers of hospitalized patients diagnosed with cancer, stroke and chronic illness was recruited in a Taiwanese Medical Center; this focus was chosen because cancer, stroke and chronic illness generally require long term care. Data were collected by structured questionnaires. Pearson product-moment correlation and stepwise multiple regression analyses were used to analyse the results of this study. Family caregivers who lacked family support and whose patients' ADL (activities of daily living) dependency was increasing experienced a greater caregiving burden. Family caregivers who had better psychological well-being, better quality of relationship and more caregiving knowledge experienced a lower caregiving burden. Quality of relationship, lack of family support and patients' ADL dependency accounted for 43% of the Zarit Burden Interview variance. The results indicated that family caregivers' perception of caregiving included sacrifice, strain, embarrassment, anger and loss of control. It is vital for nurses to understand these caregiving perceptions and their related factors to provide a holistic care plan. © 2014 Wiley Publishing Asia Pty Ltd.

[Factors affecting subjective satisfaction with verbal communication among the disabled elderly and their family caregivers].

PubMed

Miura, Hiroko; Arai, Yumiko; Yamasaki, Kiyoko

2005-05-01

The aims of the present study were to investigate satisfaction with verbal communication among the disabled elderly and their family caregivers; and to find the significantly influential factors of satisfaction with verbal communication. The subjects were 85 disabled elderly and 85 family caregivers. For the disabled elderly, satisfaction with verbal communication, demographic, and physical factors were examined using an interview survey. For the caregivers, satisfaction with verbal communication, demographic factors, and some factors related caregiving were examined using a self-administered questionnaire. In the disabled elderly, 82.4% were satisfied with their verbal communication while 55.3% of family caregivers were satisfied. Satisfaction with verbal communication between the disabled elderly and their caregivers showed low agreement (kappa = 0.17). Bivariate analysis revealed that satisfaction with verbal communication of the disabled elderly was significantly related to ADL (p < 0.01), dysphagia risk (p < 0.05), and ability of comprehension (p < 0.05) while satisfaction with verbal communication of caregivers was significantly related to the gender of the disabled elderly and caregivers' burden. Furthermore, multiple regression analysis showed that the factor most related to satisfaction with verbal communication for the disabled elderly was ability of comprehension (p value = 0.032, odds ratio = 2.960), and the most related factor for their caregivers was the burden evaluated by J-ZBI_8 (p value = 0.004, odds ratio = 0.842). These results suggest that satisfaction with verbal communication of the disabled elderly disagrees with that of the family caregivers, and that some related factors for the disabled elderly are different from those in their family caregivers.

Family Caregivers' Experiences of Caring for a Relative With Younger Onset Dementia: A Qualitative Systematic Review.

PubMed

Cabote, Christy Joy; Bramble, Marguerite; McCann, Damhnat

2015-08-01

Family caregiving for people with younger onset dementia affects everyone in the family unit. This article presents findings of a qualitative systematic review exploring the experiences of family caregivers of persons with younger onset dementia. A systematic search resulted in the inclusion of five relevant articles, and two groups within the family unit were identified-child caregivers and adult and spousal caregivers. Using the thematic synthesis approach, five themes emerged: dementia damage, grief for loss of relationship, changes in family roles, positive and negative impacts of family caregiving, and transition to formal care. The review findings support increasing evidence that despite the stress of caring for a person with dementia damage, family members have the capacity to cope, adapt, and grow through their experiences. Nurses can assist families to identify their unique strengths and enhance family resiliency so they can navigate the "lonely road" of younger onset dementia. © The Author(s) 2015.

The meaning and experience of bereavement support: A qualitative interview study of bereaved family caregivers.

PubMed

Kirby, Emma; Kenny, Katherine; Broom, Alex; MacArtney, John; Good, Phillip

2017-06-21

Experiences of bereavement can be stressful and are frequently complicated by emotional, familial, and financial issues. Some-though not all-caregivers may benefit from bereavement support. While considered standard within palliative care services in Australia, bereavement support is not widely utilized by family caregivers. There is little research focused on the forms of bereavement support desired or required by family caregivers, how such care is viewed, and/or how bereavement support is experienced. This study examined the experiences of bereaved family caregivers and their impressions of and interactions with bereavement support. This paper reports on one aspect of a broader study designed to explore a range of experiences of patients and caregivers to and through palliative care. Focusing on experiences of bereavement, it draws on qualitative semistructured interviews with 15 family caregivers of palliative care patients within a specialist palliative care unit of an Australian metropolitan hospital. The interviews for this stage of the study were initiated 3-9 months after an initial interview with a family caregiver, during which time the palliative patient had died, and they covered family caregivers' experiences of bereavement and bereavement support. Interviews were digitally audiotaped and transcribed in full. A thematic analysis was conducted utilizing the framework approach wherein interview transcripts were reviewed, key themes identified, and explanations developed. The research identified four prevalent themes: (1) sociocultural constructions of bereavement support as for the incapable or socially isolated; (2) perceptions of bereavement support services as narrow in scope; (3) the "personal" character of bereavement and subsequent incompatibility with formalized support, and (4) issues around the timing and style of approaches to being offered support. Systematic pre-bereavement planning and careful communication about the services offered by

Child and family characteristics moderate agreement between caregiver and clinician report of autism symptoms.

PubMed