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.

Keywords:

• Specialist palliative care day unit
• day hospice
• candidacy
• referral

Acknowledgements

The authors would like to extend their immense thanks to all the study participants as well as the patient and palliative care advisory group and the study sites for all their time, support and encouragement. The authors are also grateful to Professor Jane Seymour for her advice in preparing this work.

Disclaimer statements

Contributors FW designed the study and collected data and CG contributed to analysis and writing. FW, CG and JS all contributed to the writing of the manuscript.

Funding The author (s) received no financial support for the research, authorship and/or publication of this article.

Conflicts of interest None.

Ethics approval None