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

Sage Palliative Medicine & Chronic Care

This episode features Dr Vanessa Abrahamson, (Centre for Health Services Studies, University of Kent, Kent, UK).

What is already known about the topic?

• Increasingly, people at end-of-life want to die at home but this relies heavily on family carers to support the patient.
• Many carers struggle with the practical and emotional burden of caring for a loved one at home.
• Services providing hospice care at home are highly rated by carers but access is limited and the model of care varies greatly between services, with little data on how this affects patient/carer experiences.

What this paper adds?

• Hospice-at-home services need to set clear expectations from the start so that families know exactly what the service can, or cannot, provide; this helps establish confidence in the service and build a strong relationship with the carer.
• Carers valued the expertise of hospice staff (in death and dying) and that they had time to care in a flexible and compassionate manner, which other services lacked.
• Carers felt ‘doubly’ bereaved when the person they cared for died and the hospice team immediately withdrew; existing bereavement services did not suit many carers, particularly younger families.

Implications for practice, theory, or policy

• Carers appreciated early contact with services but placing the onus on carers to trigger increased help when needed was not found supportive.
• There should be regular review of needs for the carer as well as for the patient and services available to address both their needs; services could consider options to increase volunteer contributions to hospice-at-home services.
• Hospice services could consider how to provide bereavement support that meets carer preferences.

Full paper available from:

https://journals.sagepub.com/doi/10.1177/02692163231206027

If you would like to record a podcast about your published (or accepted) Palliative Medicine paper, please contact Dr Amara Nwosu:

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