Johnson Halle, Ogden Margaret, Brighton Lisa Jane, Etkind Simon Noah, Oluyase Adejoke O, Chukwusa Emeka, Yu Peihan, de Wolf-Linder Susanne, Smith Pam, Bailey Sylvia, Koffman Jonathan, Evans Catherine J
Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care, King's College London, London, UK.
Patient and Public Contributor, Cicely Saunders Institute, King's College London, London, UK.
Palliat Med. 2021 Jan;35(1):151-160. doi: 10.1177/0269216320956819. Epub 2020 Sep 11.
Public involvement is increasingly considered a prerequisite for high-quality research. However, involvement in palliative care is impeded by limited evidence on the best approaches for populations affected by life-limiting illness.
To evaluate a strategy for public involvement in palliative care and rehabilitation research, to identify successful approaches and areas for improvement.
Co-produced qualitative evaluation using focus groups and interviews. Thematic analysis undertaken by research team comprising public contributors and researchers.
SETTING/PARTICIPANTS: Researchers and public members from a palliative care and rehabilitation research institute, UK.
Seven public members and 19 researchers participated. Building and maintaining relationships, taking a flexible approach and finding the 'right' people were important for successful public involvement. Relationship building created a safe environment for discussing sensitive topics, although public members felt greater consideration of emotional support was needed. Flexibility supported involvement alongside unpredictable circumstances of chronic and life-limiting illness, and was facilitated by responsive communication, and opportunities for in-person and virtual involvement at a project- and institution-level. However, more opportunities for two-way feedback throughout projects was suggested. Finding the 'right' people was crucial given the diverse population served by palliative care, and participants suggested more care needed to be taken to identify public members with experience relevant to specific projects.
Within palliative care research, it is important for involvement to focus on building and maintaining relationships, working flexibly, and identifying those with relevant experience. Taking a strategic approach and developing adequate infrastructure and networks can facilitate public involvement within this field.
公众参与日益被视为高质量研究的先决条件。然而，由于针对受危及生命疾病影响的人群的最佳参与方式的证据有限，姑息治疗中的公众参与受到了阻碍。
评估姑息治疗与康复研究中公众参与的一项策略，以确定成功的方法和需要改进的领域。
采用焦点小组和访谈进行共同产生的定性评估。由包括公众参与者和研究人员的研究团队进行主题分析。
背景/参与者：来自英国一家姑息治疗与康复研究所的研究人员和公众成员。
7名公众成员和19名研究人员参与其中。建立和维护关系、采取灵活的方法以及找到“合适的”人员对于公众的成功参与很重要。建立关系为讨论敏感话题创造了一个安全的环境，尽管公众成员认为需要更多地考虑情感支持。灵活性有助于在慢性和危及生命疾病的不可预测情况下参与，通过及时的沟通以及在项目和机构层面进行面对面和虚拟参与的机会得以促进。然而，有人建议在整个项目中要有更多双向反馈的机会。鉴于姑息治疗服务的人群多种多样，找到“合适的”人员至关重要，参与者建议需要更加谨慎地识别具有与特定项目相关经验的公众成员。
在姑息治疗研究中内，参与重点关注建立和维护关系、灵活工作以及识别具有相关经验的人员非常重要。采取战略方法并发展适当的基础设施和网络可以促进该领域的公众参与。
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