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The liminal space palliative care volunteers occupy and their roles within it: a qualitative study
  1. Steven Vanderstichelen1,2,
  2. Joachim Cohen1,
  3. Yanna Van Wesemael3,
  4. Luc Deliens1,2 and
  5. Kenneth Chambaere1,2
  1. 1 End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Ghent, Belgium
  2. 2 Department of Public Health and Primary Care, Ghent University, Ghent, Belgium
  3. 3 Palliabru, Brussels, Belgium
  1. Correspondence to Steven Vanderstichelen, End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Gent 9000, Belgium; Steven.Vanderstichelen{at}vub.be

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.

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

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Footnotes

  • Contributors All authors were involved in the conception and design of this study. SV and KC carried out all qualitative data collection, analysis and interpretation. SV wrote the paper. All authors were involved in revising the article critically. All authors approved the final version of the manuscript.

  • Funding This work was supported by the Agency for Innovation by Science and Technology (IWT) as part of the INTEGRATE-project (SBO-IWT 140009).

  • Competing interests None declared.

  • Patient consent Not required.

  • Ethics approval The proposal for this study was submitted for approval to the commissions of medical ethics of the university hospital of Brussels (leading) and the university hospital of Ghent (local) (Ref. B.U.N. 143201630093). Approval from both commissions was granted on 30 January 2017.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement The data of this study are kept by the first author and are available on request.

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