Julie M Brose, Yong Hao Ng, Kirsten Auret, Bruce Rumbold, Samar Aoun
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引用次数: 0
Abstract
Background: Bereaved carers' perspectives on the quality of end-of-life care in residential aged care homes (RACHs) provide critical insights into person-centred care delivery and support provision. Understanding bereaved carers' experiences of formal and informal support, and their perceptions of staff responsiveness to residents' values and preferences, is essential for improving end-of-life care standards.
Objectives: To capture bereaved carers' perspectives on formal and informal support received and the delivery of person-centred care within RACHs.
Methods: A descriptive qualitative study used free-text responses from an online survey for bereaved carers whose loved ones died in a RACH between 2021 and 2024 in Western Australia. Questions were structured according to the six priorities of the Western Australian End-of-Life and Palliative Care Strategy 2018-2028. Open-ended items allowed participants to expand on their experiences of social support before and after death and to comment on the extent to which residents' and families' values were taken into consideration. Thematic analysis examined carers' perceptions of informal and formal support received and care provided.
Findings: Among 317 respondents representing 46 RACHs, five themes reflected carers' perspectives: (1) Stretched thin: carer concerns about unmet needs; (2) Navigating gaps: carer experiences with end-of-life care; (3) Seeking involvement: carers' role in care decisions; (4) Navigating decline: challenges in dementia care; and (5) Caring for the carer: the impact of RACHs and community support.
Conclusion: Bereaved carers perceived significant variability in person-centred support for themselves and the residents within RACHs, with quality often dependent on individual staff skills, confidence and communication style, and timely access to doctors or palliative care services. However, carers spoke positively about the support from the wider community. The expressed feeling to be cared "about" rather than just cared "for" could be explored by a collaborative compassionate communities approach to care integrated in RACHs. This may strengthen the capacity of the wider community to support carers before and after bereavement.
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