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Family carer experiences of hospice care at home: qualitative findings from a mixed methods realist evaluation

Abrahamson, Vanessa, Wilson, Patricia M., Barclay, Stephen, Brigden, Charlotte, Gage, Heather, Greene, Kay, Hashem, Ferhana, Mikelyte, Rasa, Rees-Roberts, Melanie, Silsbury, Graham, and others. (2023) Family carer experiences of hospice care at home: qualitative findings from a mixed methods realist evaluation. Palliative Medicine, 37 (10). pp. 1529-1539. ISSN 0269-2163. E-ISSN 1477-030X. (doi:10.1177/02692163231206027) (KAR id:103318)


Background: Hospice-at-home aims to enable patients approaching end-of-life to die at home and support their carers. A wide range of different service models exists but synthesised evidence on how best to support family carers to provide sustainable end-of-life care at home is limited.

Aim: To explore what works best to promote family carers’ experiences of hospice-at-home.

Design: Realist evaluation with mixed methods. This paper focuses on qualitative interviews with carers (to gain their perspective and as proxy for patients) and service providers from 12 case study sites in England. Interviews were coded and programme theories were refined by the research team including two public members.

Setting/participants: Interviews with carers (involved daily) of patients admitted to hospice-at-home services (n = 58) and hospice-at-home staff (n = 78).

Results: Post bereavement, 76.4% of carers thought that they had received as much help and support as they needed and most carers (75.8%) rated the help and support as excellent or outstanding. Of six final programme theories capturing key factors relevant to providing optimum services, those directly relevant to carer experiences were: integration and co-ordination of services; knowledge, skills and ethos of hospice staff; volunteer roles; support directed at the patient–carer dyad.

Conclusions: Carers in hospice-at-home services identified care to be of a higher quality than generic community services. Hospice staff were perceived as having ‘time to care’, communicated well and were comfortable with dying and death. Hands-on care was particularly valued in the period close to death.

Item Type: Article
DOI/Identification number: 10.1177/02692163231206027
Uncontrolled keywords: Hospice Care, Hospice and Palliative Care Nursing, Palliative Care, Terminal Care, Bereavement, Caregivers, Caregiver burden, Health Services Research
Subjects: H Social Sciences
Divisions: Divisions > Division for the Study of Law, Society and Social Justice > School of Social Policy, Sociology and Social Research > Centre for Health Services Studies
Funders: University of Kent (
Depositing User: Milly Massoura
Date Deposited: 17 Oct 2023 13:38 UTC
Last Modified: 13 Mar 2024 15:25 UTC
Resource URI: (The current URI for this page, for reference purposes)

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