Candidates and candidacy: Patient, carer and staff perceptions of referral to a specialist palliative day unit

Abstract

Background: Specialist palliative day care can support palliative caregiving for those living in the community with advanced disease. However, how people access specialist palliative day care and why is unclear. This study therefore aims to explore the referral experiences of patients, carers and staff in the context of a specialist palliative day care unit. Design: Qualitative study using constant comparative analysis to explore referral experiences to a UK specialist palliative day unit through one-to-one interviews with patients (n=15), family carers (n=6) and staff (n=10) including nurses, medics and managers and focus groups with (n=3 and n=7) specialist palliative care nurses. Findings: The three datasets (staff, patients and carers) provide a triangulation of perspectives captured within the core category of ‘managing referral’ and presented as six sub-themes. Staff described referral as an intuitive interaction involving ‘looking for openings’ and ‘getting people through the door’. Patients familiar with the service were persistent in ‘shouting for help’ but most regarded referral with dread, only ‘giving it a go’ following crisis. For family carers referral presented ‘time out/respite’ but also the ‘end-of-the-line’. Conclusions: Unclear understandings of services as well as uncertain professional, patient and carers notions of candidacy influence referral to specialist palliative day care.