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Volunteers in palliative care: A healthcare system-wide cross-sectional survey
  1. Steven Vanderstichelen1,2,
  2. Joachim Cohen1,
  3. Yanna Van Wesemael3,
  4. Luc Deliens1,2 and
  5. Kenneth Chambaere1,2
  1. 1End-of-Life Care Research Group, Vrije Universiteit Brussel - Ghent University, Brussels, Belgium
  2. 2Department of Public Health and Primary Care, Ghent University, Ghent, Oost-Vlaanderen, Belgium
  3. 3Network Palliative Care Waasland, Belsele, Oost-Vlaanderen, Belgium
  1. Correspondence to Dr Steven Vanderstichelen, End-of-Life Care Research Group, Vrije Universiteit Brussel, Brussel, Brussel, Belgium; Steven.Vanderstichelen{at}vub.be

Abstract

Objective Volunteers are an important resource in bridging palliative care (PC) services and communities. However, no studies have systematically mapped volunteers’ actual contributions to PC provision and how well they are supported by healthcare services at the volunteer level. Such insights are important to shape and optimise supportive environments for volunteering in PC. This study aimed to describe organised volunteering practices in PC across dedicated PC services and healthcare services providing generalist PC, in terms of tasks, training, supervision and how volunteers evaluate these.

Methods A cross-sectional postal survey of 2273 volunteers from healthcare organisations providing care for people with serious illnesses in the Flemish healthcare system (Belgium) was conducted between June and November 2018. A two-step cluster randomised sample was used. Volunteers were recruited through their respective volunteering organisations.

Results Response was obtained for 801 (35.2%) volunteers. Volunteers were predominantly women (75.5%), retired (70.8%) and aged 60–69 years (43.4%). Almost all volunteers provided psychosocial care (96.3%). Volunteers were found to provide either (1) broad volunteer support, emphasising psychosocial and existential care and signposting tasks or (2) narrow volunteer support, emphasising nursing care tasks. Nursing home volunteers had the lowest prevalence of PC training (7.7% vs 53.7% total, p<0.001).

Conclusions Multidimensional support was most prevalent among dedicated PC volunteers, while practical support was most prevalent among sitting service volunteers. Results indicate that volunteers can offer complementary support for patients with serious illnesses, although this requires training and consistent supervision. This is currently suboptimal for volunteers in nursing homes and community home care.

  • communication
  • psychological care
  • social care
  • spiritual care
  • supportive care
  • nursing home care
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Footnotes

  • Twitter @Vds_Steven

  • Contributors SV designed the study, collected and analysed the data and wrote the manuscript for publication. KC helped design the study, collected and analysed the data, and wrote the manuscript for publication. JC, LD and YVW helped design the study, provided supervision and feedback throughout the study, and helped write the manuscript for publication by providing invaluable feedback to each new version. All authors read and approved the final manuscript.

  • Funding This study is part of the ‘Integration of palliative care into home, nursing home and hospital care and into the community in Flanders’ (INTEGRATE-project) project, a collaboration between the Vrije Universiteit Brussel, Ghent University and the Catholic University Leuven, Belgium. This study is supported by a grant from the Flemish government agency for Innovation by Science and Technology (Agentschap voor Innovatie door Wetenschap en Technologie) (SBO IWT nr. 140009).

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Ethics approval The proposal for this study was submitted for approval to the commission of medical ethics of the university hospital of Brussels. (ref. B.U.N. 143201835145) Approval was granted on 4 April 2018. Participants were provided a cover letter detailing among other things the aim and methods of the study, the voluntary nature of participation and the risk and absence of financial incentive of participation.

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

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

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