At home until the end? A qualitative study of experiences of in-home aged care programs in the context of caring for older adults with a life-limiting illness

Background: A growing proportion of older adults are living longer and dying with life-limiting illnesses. While the majority express a preference for end-of-life care at home, there is often a disparity between this preference and settings in which care and death continue to occur. Alongside other determinants, the nature of available care at home at the end of life shapes the realisation of preferences. Yet there is limited understanding of the experience and effectiveness of programs of in-home aged care in supporting end-of-life care at home. Objectives: The study aimed to explore the experiences of informal carers of older adults with a life-limiting illness in the last year of life who received forms of in-home aged care. Design and methods: A qualitative design utilised semi-structured interviews to elicit experiences of current or former (bereaved) carers of an older adult ( n = 14), who currently or previously received support through programs of Australian government-funded in-home aged care. Analysis of interview data employed reflexive thematic analysis. Results: Findings highlight features of in-home care that shape and constrain effective and equitable end-of-life care provision over the arc of experience, from the point of accessing this care. Themes pertained to the centrality of navigational support, the need for responsivity and flexibility to meet needs and preferences, the function of specific knowledge and skills and the importance of a relational orientation in facilitating continuity. Carer positionality, associated with individual capacity and resources, influenced the potential to mitigate gaps in care. Conclusion: Approaches that support system navigation and the tailoring of features of in-home aged care to meet complex end-of-life needs are indicated, alongside further attention to education and support of the in-home aged care workforce. Implications are timely and possess relevance across sectors of aged and health care seeking to enable end-of-life care for older adults at home.