The Motivations and Consequences of Dying at Home: Family Caregiver Perspectives

Benson, Jacquelyn J.; Schwarz, Benyamin; Tofle, Ruth Brent; Oliver, Debra Parker

doi:10.1080/02763893.2018.1505460

Cited by 11 publications

(22 citation statements)

References 45 publications

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“…Yet, in this study very few received formal support to family and relatives or respite service for informal care givers at home. This can be viewed in light of the commonness of unfinanced informal care givers, not seldom a preference and strive to provide palliative care at home in a private, comfortable and safe environment, instead of in an institution [26,27]. However, in this study hospitalizations due to psychiatric and neurological disorders, demanded a higher number of hospital days compared to other reasons for hospitalization.…”

Section: Discussionmentioning

confidence: 80%

Health- and social care in the last year of life among older adults in Sweden

et al. 2020

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Background In the last years of life, burden of disease and disability and need of health- and social care often increase. Social, functional and psychological factors may be important in regard to social- and health care utilization. This study aims to describe use of health- and social care during the last year of life among persons living in ordinary housing or in assisted living facilities. Methods A retrospective study examining health- and social care utilization during their last year of life, using a subsample from the Swedish twin registries individually linked to several Swedish national quality registries (NQR). Persons that died during 2008–2009 and 2011–2012 (n = 1518) were selected. Results Mean age at death was 85.9 ± 7.3 (range 65.1–109.0). Among the 1518 participants (women n = 888, 58.5%), of which 741 (49%) were living in assisted living facilities and 1061 (69.9%) had at least one hospitalization during last year of life. The most common causes of death were cardiovascular disease (43.8%) and tumors (15.3%). A multivariable logistic regression revealed that living in ordinary housing, younger age and higher numbers of NQR’s increased the likelihood of hospitalization. Conclusions Persons in their last year of life consumed high amount of health- and social care although 12% did not receive any home care. Married persons received less home care than never married. Persons living in ordinary housing had higher numbers of hospitalizations compared to participants in assisted living facilities. Older persons and persons registered in fewer NQR’s were less hospitalized.

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Section: Discussionmentioning

confidence: 80%

Health- and social care in the last year of life among older adults in Sweden

et al. 2020

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“…Eight of the studies focused primarily on cancer patients, 27–34 nine studies focused on older adults who were enrolled in hospice care, 25,26,28,34–39 and 10 on bereaved caregivers. 23,28,29,32,34,40–43 One study gathered data from current and former caregivers. 44 Further information on the studies is provided in Table 3.…”

Section: Resultsmentioning

confidence: 99%

“…23,27,30,31,38,40,44 Family caregivers provided assistance with domestic tasks, 23,27,29,32,37,40,45 personal care, 29,36,40,42–44 tran-sportation 23,30,40 nursing, medical, and end-of-life-care. 23,27,29,31,35,37,40,44 They engaged in decisions with care recipients, family members, and healthcare professionals 38,41,46 about the provision of care, 27,29,32,37,38,41,45 treatment options, 28,40 integration of support services, 27,28 and place of death. 40 Their “support and advocacy roles grew and evolved as the need arose” 24 (p. 1129).…”

Section: Resultsmentioning

confidence: 99%

“…23,27,29,31,35,37,40,44 They engaged in decisions with care recipients, family members, and healthcare professionals 38,41,46 about the provision of care, 27,29,32,37,38,41,45 treatment options, 28,40 integration of support services, 27,28 and place of death. 40 Their “support and advocacy roles grew and evolved as the need arose” 24 (p. 1129). Several studies spoke about how they bridged the abyss and managed the multiple caregiving roles and responsibilities by reprioritizing or putting on hold personal and work roles, 23,27,29–31,38,40,45 learning to live “day by day,” 27,31 and “living as usual.” 29…”

Section: Resultsmentioning

confidence: 99%

“…40 Their “support and advocacy roles grew and evolved as the need arose” 24 (p. 1129). Several studies spoke about how they bridged the abyss and managed the multiple caregiving roles and responsibilities by reprioritizing or putting on hold personal and work roles, 23,27,29–31,38,40,45 learning to live “day by day,” 27,31 and “living as usual.” 29…”

Section: Resultsmentioning

confidence: 99%

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Navigating the caregiving abyss: A metasynthesis of how family caregivers manage end-of-life care for older adults at home

2021

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Background: Demographic changes (global aging, decreased fertility, increased home deaths) will present a critical need for end-of-life family caregivers of older adults at home. In order to support these family caregivers, we need to better understand their experiences, struggles, and needs. Aim: To describe and explain the process of end-of-life caregiving as experienced by family caregivers of older adults residing in the home setting. Design: The Preferred Reporting Items for Systematic Reviews and Metaanalysis (PRISMA) guidelines and Sandelowski and Barroso’s procedural steps for a metasynthesis review guided this study. Data sources: Qualitative and mixed methods literature from CINAHL, Medline, PsycINFO, and EMBASE databases and information from professional organizations were reviewed for studies that focused on family caregivers providing end-of-life care to older adults residing in the home setting. Results: A total of 24 studies were identified. Family caregivers engaged in the process of “navigating a caregiving abyss” when providing and managing end-of-life-care for older adults at home. The “caregiving abyss” consisted of four phases: (1) managing multiple roles, (2) encountering challenges, (3) mobilizing resources, and (4) acknowledging death is near. During the process family caregivers strived to “live day by day” and “maintain normalcy” to achieve the goals of honoring life’s final wishes and provide home death. Conclusion: Family caregivers of older adults at the end of life navigate a variety of challenges. The findings provide a conceptual framework to help guide the development of education, interventions, and health policy to meet family caregivers’ needs in providing quality end-of-life care.

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