A phenomenological study of the care challenges of family living with frail older persons in the last months of life

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A phenomenological study of the care challenges of family living with frail older persons in the last months of life


Author: Lau, Tak Yin
Title: A phenomenological study of the care challenges of family living with frail older persons in the last months of life
Degree: DHSc
Year: 2013
Subject: Frail elderly -- Care.
Frail elderly -- Home care.
Older people -- Care.
Older people -- Home care.
Hong Kong Polytechnic University -- Dissertations
Department: Faculty of Health and Social Sciences
Pages: xii, 278 leaves ; 30 cm
Language: English
InnoPac Record: http://library.polyu.edu.hk/record=b2760493
URI: http://theses.lib.polyu.edu.hk/handle/200/7626
Abstract: Background: Care in place is not only an expressed preference for the majority of older family members, it is also regarded as a filial responsibility in Chinese families. According to the 2008 Census statistics, 77.7% of older persons with chronic illnesses live with their families in Hong Kong. Yet many frail older persons have to relocate to institutional care along their deteriorating health trajectory. Sustaining home care in accordance to their original intention poses much challenge to families particularly in the last months of life. Aim and objectives: The study aims to uncover the experience of family caregivers living with frail older persons at the end of life. The objectives are: 1. To explicate the care concerns and preferences of family caregivers living with frail older persons in their last months of life 2. To discover the care challenges in sustaining home care for frail older persons 3. To expound how family caregivers meet with care challenges along the end-of-life care trajectory Method: An interpretive phenomenological approach using semi-structured interviews was conducted with 14 family caregivers who planned to continue home care for frail older relatives after discharge from hospital. The initial caregiver interviews were followed up by telephone or home visits at one-month and three-month intervals. Changes in health status and care planning were thoroughly reviewed by examining patient records six months later. Verbatim transcriptions and field notes were used for interpretation and thematic analysis. Findings: Nine of the 14 older persons died in hospital during the study period, seven required institutional care and four died without moving into an old age home. Family caregiving challenges emerged as the core theme, with four themes: 1) home as a preferred caregiving place, 2) sustaining home care, 3) decision-making in changing caregiving place, and 4) facing death and dying. The themes and 12 subthemes represented a temporal sequence of the caregivers' responses to the care challenges, illuminating a descriptive model of facing caregiving at the end of life. Personal factors including intimate and symbiotic relationships, filial responsibility and personal resilience modified the tangible elements in sustaining home care. Differences in personal characteristics interwove two patterns of family caregiving, namely enduring family caregiving and situational family caregiving. All family caregivers faced accelerating care challenges along the frailty trajectory. They encountered the critical decision of changing the places of care when they were unable to align family caregiving potentials with care needs. The final decision was mediated by moral deliberations of right or wrong options for the best possible care outcome, for both the older person and their family. When travelling to the end-of-life care trajectory, family caregivers grieved along with acknowledging their loved one's impending death. The unique response was praying for a good death for the older family members. It means promoting comfort, less suffering, and being present, especially in terms of paying one's last respects to the older person. Conclusion: Families encountered enormous care challenges in sustaining home care for frail older persons, who need to be comforted and supported by an orchestrated effort in terms of health care services. The voices of family caregivers call for a paradigm shift in the current curative medical model of care, to a palliative focus and care planning in advance.

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