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    Rights statement: This is the author’s version of a work that was accepted for publication in Journal of Pain and Symptom Management. Changes resulting from the publishing process, such as peer review, editing, corrections, structural formatting, and other quality control mechanisms may not be reflected in this document. Changes may have been made to this work since it was submitted for publication. A definitive version was subsequently published in Journal of Pain and Symptom Management, 2021 DOI: 10.1016/j.jpainsymman.2021.02.025

    Accepted author manuscript, 298 KB, PDF document

    Embargo ends: 26/02/22

    Available under license: CC BY-NC-ND: Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License

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What are the emotional experiences of being a volunteer in palliative and end-of-life care settings?: a systematic review and thematic synthesis

Research output: Contribution to journalJournal articlepeer-review

E-pub ahead of print
<mark>Journal publication date</mark>26/02/2021
<mark>Journal</mark>Journal of Pain and Symptom Management
Number of pages16
Publication StatusE-pub ahead of print
Early online date26/02/21
<mark>Original language</mark>English

Abstract

Context
Previous research has focused on the risks of stress, burnout and the impact on general emotional well-being in paid palliative care staff, however volunteers in patient-facing roles are exposed to similar stressors. Volunteers increasingly provide emotional support to patients and families but receive little formal support for themselves. It is important to understand volunteers’ emotional experiences of their role to identify strategies that could be implemented to support them effectively.

Objectives
To synthesize qualitative data on the emotional experiences of being a volunteer in palliative and end-of-life care settings, including how people cope with this role and how they can be best supported.

Methods
A systematic review with thematic synthesis design, with an iterative three-stage synthesis, including line-by-line coding, organizing this into descriptive themes and then developing analytical themes. Four databases (PsycInfo, CINAHL, MEDLINE, and EMBASE) were searched in November 2019. The Critical Appraisal Skills Programme was used to evaluate included papers.

Results
From the 22 included studies, four themes were developed: 1) intrinsic challenges (e.g., conflicting feelings); 2) extrinsic challenges (e.g., resources and expectations); 3) personal gain (e.g., learning and self-growth); and 4) developing relationships (e.g., appropriate boundaries). Challenges included personal feelings related to their role for example uncertainty, not being ‘good enough’ and feeling drained as well as frustrations within the palliative care system.

Conclusion
Volunteers face unique challenges but also positive impacts that can affect their emotional well-being. It is important to monitor how volunteers are coping and provide appropriate support.

Bibliographic note

This is the author’s version of a work that was accepted for publication in Journal of Pain and Symptom Management. Changes resulting from the publishing process, such as peer review, editing, corrections, structural formatting, and other quality control mechanisms may not be reflected in this document. Changes may have been made to this work since it was submitted for publication. A definitive version was subsequently published in Journal of Pain and Symptom Management, 2021 DOI: 10.1016/j.jpainsymman.2021.02.025