Paediatric Palliative Care Research Group, Department of Health Science, University of York, York, UK.
Department of Health Science, University of York, York, UK.
Palliat Med. 2024 Oct;38(9):1010-1020. doi: 10.1177/02692163241266374. Epub 2024 Aug 10.
Patient and Public Involvement (PPI) is an important component of healthcare research. Conducting PPI within paediatric palliative care research requires specific ethical and practical considerations. Regular reviews of PPI activity are important.
To evaluate a paediatric palliative care research centre's PPI activity to determine what went well, or less well; and how future activities can be improved.
Two stage evaluation: first a review of PPI study logs; second a qualitative exploration using a survey, structured interviews and a focus group. Data were analysed thematically.
SETTINGS/PARTICIPANTS: Parents of children with life-limiting conditions, bereaved parents and researchers, all engaged in PPI activity within a paediatric palliative care research centre.
The review of PPI logs for 15 studies highlighted the crucial role of funding in enabling PPI throughout the research. Eight parents completed the survey, 4 parents were interviewed and 12 researchers participated in a focus group. Three themes were developed: Clarity of processes and purpose; balanced relationships created a safe space; and mutual respect and value for PPI. These themes highlight what is working well within the Centre's approach to PPI and the opportunities to improve.
To undertake meaningful PPI in paediatric palliative care research, adequate time and resources are required. Roles, processes and expectations must be explicitly agreed. Establishing relationships ensures trust and enables authenticity and vulnerability. In addition to improving research, PPI has personal benefits for researchers and parents. The evaluation led to the development of a 'route map' for establishing an impactful PPI group for paediatric palliative care research.
患者和公众参与（PPI）是医疗保健研究的重要组成部分。在儿科姑息治疗研究中进行 PPI 需要特定的伦理和实践考虑。定期审查 PPI 活动非常重要。
评估一个儿科姑息治疗研究中心的 PPI 活动，以确定哪些方面做得好，哪些方面做得不好；以及如何改进未来的活动。
两阶段评估：首先审查 PPI 研究日志；其次使用调查、结构访谈和焦点小组进行定性探索。数据进行了主题分析。
设置/参与者：患有危及生命疾病的儿童的父母、丧亲父母和研究人员，都参与了儿科姑息治疗研究中心的 PPI 活动。
对 15 项研究的 PPI 日志进行审查，突出了资金在整个研究过程中为 PPI 提供支持的关键作用。有 8 位家长完成了调查，4 位家长接受了访谈，12 位研究人员参加了焦点小组。得出了三个主题：过程和目的的明确性；平衡的关系创造了一个安全的空间；以及对 PPI 的相互尊重和重视。这些主题突出了该中心 PPI 方法中运作良好的方面以及改进的机会。
要在儿科姑息治疗研究中进行有意义的 PPI，需要充足的时间和资源。角色、流程和期望必须明确达成一致。建立关系确保了信任，并使真实性和脆弱性成为可能。除了改善研究，PPI 对研究人员和家长也有个人益处。评估导致了为儿科姑息治疗研究制定有影响力的 PPI 小组的“路线图”的制定。
