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Care burden and quality of life in family caregivers of palliative care patients
- Authors:
- CENGIZ Zeliha, et al
- Journal article citation:
- Journal of Social Work in End-of-Life and Palliative Care, 17(1), 2021, pp.50-63.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia
This research was conducted for the purpose of examining the care burden and quality of life in family caregivers of palliative care patients. The research design was a descriptive correlational study conducted with the caregivers of 163 patients residing in palliative care units. Data were collected via a demographic survey, The Zarit Burden Interview (ZBI) and the World Health Organization Quality of Life Assessment (WHOQOL). The results showed that there was a negative correlation between ZBI and WHOQOL scores. Further, there was a significant negative correlation between many subdimensions of the ZBI (general quality of life, general perception of health, being satisfied with daily life skills, home conditions, energy and self-satisfaction) and the WHOQOL. Quality of life thus appeared to be reduced in family members with a high level of care burden and that the quality of life of caregivers depends on the individual characteristics of the caregiver. Social workers, nurses and physicians should regularly assess the burden and quality of life of caregivers. (Edited publisher abstract)
The magnitude, share and determinants of unpaid care costs for home-based palliative care service provision in Toronto, Canada
- Authors:
- CHAI Huamin, et al
- Journal article citation:
- Health and Social Care in the Community, 22(1), 2014, pp.30-39.
- Publisher:
- Wiley
Little is known about the economic outcomes associated with home-based unpaid care-giving at the end of life. This Canadian study examines the magnitude and share of unpaid care costs (ie by family caregivers) in total healthcare costs for home-based palliative care patients, from a societal perspective and also considers the sociodemographic and clinical factors that account for variations in this share. One hundred and sixty-nine caregivers of patients with a malignant neoplasm were interviewed from time of referral to a home-based palliative care programme provided by palliative care services in Toronto, Canada, until death. Information regarding palliative care resource utilisation and costs, time devoted to caregiving and sociodemographic and clinical characteristics was collected between July 2005 and September 2007. Over the last 12 months of life, the average monthly cost was $14 924 (2011 CDN$) per patient. Unpaid care-giving costs were the largest component – $11 334, accounting for 77% of total palliative care expenses, followed by public costs ($3211; 21%) and out-of-pocket expenditures ($379; 2%). In all cost categories, monthly costs increased exponentially with proximity to death. The share of unpaid care costs of total costs was driven by patients' and caregivers' sociodemographic characteristics. Results suggest that overwhelming the proportion of palliative care costs is unpaid care-giving. This share of costs requires urgent attention to identify interventions aimed at alleviating the heavy financial burden and to ultimately ensure the viability of home-based palliative care in future. (Edited publisher abstract)
Characterizing hospice services in the United States
- Authors:
- SMITH Maureen A., SEPLAKI Christopher, DuPREEZ Amanda
- Journal article citation:
- Gerontologist, 48(1), February 2008, pp.25-31.
- Publisher:
- Oxford University Press
Although caregivers desire specific information about hospice programs, there is little descriptive information available. This study characterized agencies that provide formal or informal hospice care in the United States according to four types of services considered important by caregivers: medications and treatments; rehabilitative care; emotional, social, and spiritual support; and practical support (e.g., continuous home care). Data were from the nationally representative 2000 National Home and Hospice Care Survey. Agencies were then categorised into service mixes reflecting combinations of the four service types by using a grade-of-membership model to score each agency. Of the 11,419 agencies represented, slightly more than half (52%) reflected some mix of services from all four service types. The remaining agencies provided service mixes that reflected relatively few or no services from at least one of the four service types. Specifically, approximately 7% lacked (i.e., had relatively few or no) medications and treatment services, 6% lacked rehabilitative care, 26% lacked emotional/social/spiritual support, and about 10% lacked multiple services. When compared to agencies that reflected a mix of all four services, agencies that lacked multiple services could be distinguished by their lack of formal certification as either a hospice or home health agency. Few U.S. agencies that provide formal or informal hospice care incorporate a balanced mix of all types of services, but most agencies lack only one type of service. Categorization of agencies based on services that are relevant to caregivers may assist providers in describing hospice care.
Couples affected by dementia and their experiences of advance care planning: a grounded theory study
- Authors:
- RYAN Tony, MCKEOWN Jane
- Journal article citation:
- Ageing and Society, 40(2), 2020, pp.439-460.
- Publisher:
- Cambridge University Press
Global policy places emphasis on the implementation and usage of advance care planning (ACP) to inform decision making at the end of life. For people with dementia, where its use is encouraged at the point of diagnosis, utilisation of ACP is relatively poor, particularly in parts of Europe. Using a constructivist grounded theory methodology, this study explores the ways in which co-residing couples considered ACP. Specifically, it seeks to understand the ways in which people with dementia and their long-term co-residing partners consider and plan, or do not plan, for future medical and social care. Sixteen participants were interviewed. They identified the importance of relationships in the process of planning alongside an absence of formal service support and as a result few engaged in ACP. The study recognises the fundamental challenges for couples in being obliged to consider end-of-life issues whilst making efforts to ‘live well’. Importantly, the paper identifies features of the ACP experience of a relational and biographical nature. The paper challenges the relevance of current global policy and practice, concluding that what is evident is a process of ‘emergent planning’ through which couples build upon their knowledge of dementia, their networks and relationships, and a number of ‘tipping points’ leading them to ACP. The relational and collective nature of future planning is also emphasised. (Edited publisher abstract)
Living in liminality: being simultaneously visible and invisible: caregivers' narratives of palliative care
- Authors:
- LYCKHAGE Elisabeth Dahlborg, LINDAHL Berit
- Journal article citation:
- Journal of Social Work in End-of-Life and Palliative Care, 9(4), 2013, pp.272-288.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia
Palliative care is an integral part of care and takes place in many settings, including the home, special accommodations, and hospitals. However, research shows that palliative care often ends with a death in the hospital due to the heavy burden on the primary caregiver. This study explores the meaning of being the primary caregiver of a close one who is terminally ill and is based on qualitative interviews with six primary caregivers of a terminally ill individual at home. The findings are discussed in the light of the theoretical concepts of liminality, lived body, and power. A potential impending risk exists of being abandoned when one is the primary caregiver to a close one who is terminally ill. This situation calls for professional caregivers to take responsibility and to respond to these, often unspoken, needs. This is particularly important concerning bodily care and the medical treatment regimen. In addition, when friends and relatives are absent, there is an ethical demand on professional caregivers to compensate for this lack and to compensate for this need. Palliative home care demands care that is person-centered, including the individual's history, family and loved ones, and individual strengths and weaknesses. (Publisher abstract)
Commitment to care: a grounded theory of informal hospice caregivers’ development as symptom managers
- Author:
- WASHINGTON Karla
- Journal article citation:
- Qualitative Social Work, 12(3), 2013, pp.358-371.
- Publisher:
- Sage
Individuals receiving home-based hospice services often rely upon family members and friends to serve as informal caregivers responsible for managing the full range of emotional, psychological, spiritual, and physical symptoms. The purpose of this in-depth, grounded theory study was to develop a theoretical model of the processes by which informal hospice caregivers, who often lack formal training, acquire knowledge and skills related to symptom management. Findings were derived from data collected from 15 hospice caregivers who participated in at least one interview. Seven of the 15 participants also participated in a follow-up interview. Findings indicate that, motivated by a commitment to care, caregivers seek competence in symptom management by learning/doing, consulting with professionals, and personalizing their caregiving approach. The ongoing nature of the development of symptom management knowledge and skills provides multiple opportunities for intervention by hospice social workers and other members of the interdisciplinary team. (Edited publisher abstract)
Stress processes in caring for an end-of-life family member: application of a theoretical model
- Authors:
- BAINBRIDGE Daryl, et al
- Journal article citation:
- Aging and Mental Health, 13(4), July 2009, pp.537-545.
- Publisher:
- Taylor and Francis
This study examined a wide range of theory-driven variables contributing to family caregiver stress. Data variables from interviews with primary family caregivers were mapped onto the factors within the Stress Process Model theoretical framework. A hierarchical multiple linear regression analysis was used to determine the strongest predictors of caregiver strain as measured by a validated composite index, the Caregiver Strain Index. The study included 132 family caregivers across south-central/western Ontario, Canada. About half of these caregivers experienced high strain, the extent of which was predicted by lower perceived program accessibility, lower functional social support, greater weekly amount of time caregivers committed to the care recipient, younger caregiver age and poorer caregiver self-perceived health. This study examined the influence of a multitude of factors in the Stress Process Model on family caregiver strain, finding stress to be a multidimensional construct. Perceived program accessibility was the strongest predictor of caregiver strain, more so than intensity of care, highlighting the importance of the availability of community resources to support the family caregiving role.
Bereaved informal cancer carers making sense of their palliative care experiences at home
- Authors:
- WONG W. K. T., USSHER J.
- Journal article citation:
- Health and Social Care in the Community, 17(3), May 2009, pp.274-282.
- Publisher:
- Wiley
This qualitative study explored the positive meanings constructed and ascribed to the experience of providing palliative care at home by bereaved informal cancer carers. Twenty-two bereaved cancer carers, living in New South Wales (NSW), Australia, were interviewed as part of a larger mixed-method study examining the experience of informal cancer care. Participants were recruited through cancer support groups and cancer clinics, and through the Cancer Council NSW. The findings indicated that these bereaved carers gave accounts that accentuated the benefit and satisfaction derived from providing direct palliative care at home, which enabled them to construct positive meanings associated with their participation in the dying process, and as a result to ascribe subjectively meaningful the process of saying goodbye, fostered inclusion of others, provided closure and was a spiritual experience. These findings suggest that there are positive and rewarding aspects associated with providing informal cancer care in a palliative context, and these aspects were pertinent and meaningful for carers in their endeavours to reconcile the difficulties and loss they experienced.
Moving toward Medicare home health coverage for people with Alzheimer’s disease
- Author:
- CABIN William D.
- Journal article citation:
- Journal of Gerontological Social Work, 51(1/2), 2008, pp.77-86.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
... is dominated by the curative, drug-focused medical model. As a result, there are significant unmet client and carer needs, and high costs to all parties including Medicare when, for example, premature admission to institutional care follows the failure to provide any support for carers. There is a strong case for the federal government to fund a demonstration project to test the efficacy of palliative home care for improving quality of life and reducing costs for Medicare clients with Alzheimer’s disease, and for their carers. (Copies of this article are available from: Haworth Document Delivery Centre, Haworth Press Inc., 10 Alice Street, Binghamton, NY 13904-1580).
The quality and adequacy of care received at home in the last 3 months of life by people who died following a stroke: a retrospective survey of surviving family and friends using the Views of Informal carers Evaluation of Services questionnaire
- Authors:
- YOUNG Amanda J., ROGERS Angie, ADDINGTON-HALL Julia M.
- Journal article citation:
- Health and Social Care in the Community, 16(4), July 2008, pp.419-428.
- Publisher:
- Wiley
... lived at home during their last three months and had been ill for more than one month. The data were analysed to explore the role of informal carers and the provision of community-based care in the last three months of life. Family and friends helped 82% of deceased with household tasks, 68% with personal care, 66% with taking medication and 54% with night-time care. By contrast, health and social services. Results from the Regional Study of Care for the Dying indicated that people who died from a stroke in 1990 and their informal carers would have benefited from increased levels of community-based care and enhanced communication with care professionals. The data suggest that informal carers continue to provide the majority of care for those who die from stroke, despite government initiatives