Making space for palliative care: Built environments and social practices in a novel, non-clinical respite setting

A key barrier for people with a life-limiting illness being able to remain in their home is carer burnout. Carer fatigue also puts more pressure on health services and leads to worse outcomes for carers and their loved ones. However, carers are resistant to using respite care because of concerns around quality of care, the nature of the clinical environment and leaving their loved one behind. There is evidence that greater carer uptake of respite reduces burnout, enhances carer resilience and means that more people get their wish of dying at home.

This study reviews a novel respite service in a suburban environment in the Australian capital, Canberra, to assess if a non-clinical home-like setting increases the likelihood of carers taking short-term breaks.

Separate, semi-structured interviews, of 10-60 min were conducted with clients, carers, staff and volunteers about their lived experiences at a pilot respite centre, 'Leo's Place', run by Palliative Care ACT (Australian Capital Territory). The question guide was developed for this study, drawing on current literature and the needs of the research and the subject population.

This study employed Reflexive Thematic Analysis, an iterative and inductive approach to constructing themes from the data, providing a rich description of the participants' experience.

Interviews were conducted with 5 clients (alone), 6 carers (alone) and 12 client/carer dyads (together). We captured 31% of service users with either (or both) a client/carer interview during the study period. The evaluation identified three key themes. First, Leo's Place was a lifeline where carers found the non-clinical, home-style respite welcoming and supportive. Second, this allowed carers to take a break as they felt that they could leave their loved one safely and comfortably. Last, Leo's Place operated as an advice and support hub.

Non-clinical respite care in a home-like setting can relieve the burden of care and has the potential to reduce pressure on health services and provide better outcomes for carers and their loved ones. Making respite care desirable and outside of clinical settings increases the willingness of carers to use such services.