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Comparison of the experience of caregiving at end of life or in hastened death: a narrative synthesis review.

ABSTRACT: BACKGROUND:End-of-life caregiving frequently is managed by friends and family. Studies on hastened death, including aid in dying or assisted suicide, indicate friends and family also play essential roles before, during, and after death. No studies have compared the experiences of caregivers in hastened and non-hastened death. The study aim is to compare end-of-life and hastened death caregiving experience using Hudson's modified stress-coping model for palliative caregiving. METHOD:Narrative synthesis of qualitative studies for caregivers at end of life and in hastened death, with 9946 end-of life and 1414 hastened death qualitative, peer-reviewed research articles extracted from MEDLINE, CINAHL, Web of Science, and PsycINFO, published between January 1998 and April 2020. RESULTS:Forty-two end-of-life caregiving and 12 hastened death caregiving articles met inclusion criteria. In both end-of-life and hastened death contexts, caregivers are motivated to ease patient suffering and may put their own needs or feelings aside to focus on that priority. Hastened death caregivers' expectation of impending death and the short duration of caregiving may result in less caregiver burden. Acceptance of the patient's condition, social support, and support from healthcare professionals all appear to improve caregiver experience. However, data on hastened death are limited. CONCLUSION:Caregivers in both groups sought closeness with the patient and reported satisfaction at having done their best to care for the patient in a critical time. Awareness of anticipated death and support from healthcare professionals appear to reduce caregiver stress. The modified stress-coping framework is an effective lens for interpreting caregivers' experiences at end of life and in the context of hastened death.

SUBMITTER: Lowers J

PROVIDER: S-EPMC7545566 | biostudies-literature | 2020 Oct

REPOSITORIES: biostudies-literature

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Comparison of the experience of caregiving at end of life or in hastened death: a narrative synthesis review.

Lowers Jane J Scardaville Melissa M Hughes Sean S Preston Nancy J NJ

BMC palliative care 20201008 1

<h4>Background</h4>End-of-life caregiving frequently is managed by friends and family. Studies on hastened death, including aid in dying or assisted suicide, indicate friends and family also play essential roles before, during, and after death. No studies have compared the experiences of caregivers in hastened and non-hastened death. The study aim is to compare end-of-life and hastened death caregiving experience using Hudson's modified stress-coping model for palliative caregiving.<h4>Method</h ...[more]

PMID: 33032574

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Project description:Population ageing has rapidly increased the number of people requiring end-of-life care across the globe. Governments have responded by promoting end-of-life in the community. Partly as a consequence, older spouses are frequently providing for their partner's end-of-life care at home, despite potentially facing their own health issues. While there is an emerging literature on young-old caregivers, less is known about spouse carers over 75 who are likely to face specific challenges associated with their advanced age and relationship status. The aim of this review, therefore, is to identify and synthesise the literature concerning the experiences of caregiver's aged 75 and over whose partner is approaching end-of-life. We conducted a mixed-method systematic review and narrative synthesis of the empirical literature published between 1985 and May 2019, identified from six databases: Medline, PsychINFO, Cumulative Index to Nursing and Allied Health Literature, Embase, Sociological Abstracts and Social Service Abstracts. Hand searching and reference checking were also conducted. Gough's Weight of Evidence and Morgan's Feminist Quality Appraisal tool used to determine the quality of papers. From the initial 7819 titles, 10 qualitative studies and 9 quantitative studies were included. We identified three themes: 1) "Embodied impact of care" whereby caring was found to negatively impact carers physical and psychological health, with adverse effects continuing into bereavement; 2) "Caregiving spouse's conceptualisation of their role" in which caregiver's navigated their self and marriage identities in relation to their partner's condition and expectations about gender and place; 3) "Learning to care" which involved learning new skills and ways of coping to remain able to provide care. We identified a recent up-surge in published papers about very old spousal caregivers, which now comprise a small, medium-quality evidence base. This review outlines a range of potential lines of inquiry for future research including further clarification of the impact of caregiving on the likelihood of mortality, the incidence of men and women providing end-of-life care amongst this age group, and the role of anticipatory grief in shaping their perceptions of their relationship and their own longevity.

Dataset Information

Comparison of the experience of caregiving at end of life or in hastened death: a narrative synthesis review.

Publications

Comparison of the experience of caregiving at end of life or in hastened death: a narrative synthesis review.

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