The Move from Home to Hospice Care: A Retrospective Analysis of Carer Experience

Aims and design: The move from home to hospice care has been identified as a juncture in caring and a significant life event for the informal carer, that impinges on them in idiosyncratic ways. The aim of the current study was
to illuminate the salient features of the move into hospice care from home care, from the carer’s perspective. We explored the experience of seven different spousal carers of patients who received end of life care in two hospices.
Influenced by the work of van Manen, this research
utilised interpretive phenomenology, with data analysed using the Template Analysis approach.
Findings: Findings suggest that carers underwent important changes to their ‘being in the world’ during the accommodation and restructuring of their position in the new caring arena. Their appraisals of the meaning of ‘home’ were challenged by illness as well as the change in caring setting, as were their ways of thinking with regard to the rhythm, tempo and value of the time. Our analysis characterised their experience as one of the “slipperiness of time”. An important observation was that the experiential
trajectories of carers - and their associated needs - were not necessarily in parallel with the illness trajectories of patients.
For example, where carers had family holiday plans
that were dashed due to the sudden realisation of remaining time, or where carers wanted to maintain ownership of care and struggled relinquishing roles once partners
were in the hospice setting.
Conclusion: It is important that service providers do not assume that carer experiences can be framed simply in the context of the patient’s illness trajectory. Future research
needs to examine the dynamics and complexities of carerpatient relationships in the move from home to hospice care. Longitudinal studies following dyads from initial contact with the hospice through to admission and beyond would be particularly valuable.