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BMJ Support Palliat Care. 2018 Dec 7. pii: bmjspcare-2018-001632. doi: 10.1136/bmjspcare-2018-001632. [Epub ahead of print]

The liminal space palliative care volunteers occupy and their roles within it: a qualitative study.

Author information

1
End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Ghent, Belgium Steven.Vanderstichelen@vub.be.
2
Department of Public Health and Primary Care, Ghent University, Ghent, Belgium.
3
End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Ghent, Belgium.
4
Palliabru, Brussels, Belgium.

Abstract

OBJECTIVES:

Volunteers have an important place in palliative care (PC), positively influencing quality of care for seriously ill people and those close to them and providing a link to the community. However, it is not well understood where volunteers fit into PC provision or how to support them adequately. We therefore chose to describe volunteer roles across care settings through the perspective of those closely involved in the care of terminally ill people.

METHODS:

A qualitative study was conducted using both focus groups with volunteers, nurses, psychologists and family physicians and individual semistructured interviews with patients and family caregivers. Participants were recruited from hospital, home, day care and live-in services.

RESULTS:

79 people participated in the study. Two volunteer roles were identified. The first was 'being there' for the dying person. Volunteers represent a more approachable face of care, focused on psychological, social and existential care and building relationships. The second was the 'liaison' role. Volunteers occupy a liminal space between the professional and the family domain, through which they notice and communicate patient needs missed by other caregivers. Patient-volunteer matching was a facilitator for role performance; barriers were lack of communication opportunities with professional caregivers and lack of volunteer coordination.

CONCLUSION:

Volunteers complement professional caregivers by (1) occupying a unique space between professionals, family and patients and fulfilling a liaison function and (2) being a unique face of care for patients. Healthcare services and policy can support volunteer role performance by ensuring frequent communication opportunities and volunteer coordination.

KEYWORDS:

end of life care; home care; palliative care; psychological care; social care; volunteering

Conflict of interest statement

Competing interests: None declared.

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