What Matters? Using creativity to support PPI engagement: involving palliative care patients and family carers in developing research ideas and proposals

Abstract

Introduction: Visual imagery and creative activities may enable and promote identification of new research ideas and priorities. / Aims: We aimed to involve PPI participants in creative tasks, and thereby prompt their thoughts on what matters at the end-of-life and related research priorities, including developing research proposals. / Method: We employed a blended (online and in-person) approach to increase participation, and identified participants through local clinical and national networks. We organised separate groups with people living with a terminal illness, current carers, and bereaved carers. Participants joined two two-hour sessions, one week apart. In advance, we sent them a parcel containing words and images associated with end-of-life, and a small box with creative materials. In Session 1 participants discussed what the words and images they had received meant to them, and which they found most important or relevant. We then facilitated a broader end-of-life discussion. Between sessions, participants made their own images or objects, and could engage in discussions on the online platform (MS Teams). During Session 2, participants discussed what they had created, and their related thoughts. We then presented one of the two proposed research projects, and briefly summarised each, for participants’ feedback. / Results: Topics discussed included guilt, forgiveness, family relations, and relationship challenges. Carers’ research priorities often highlighted better recognition and support for the particular challenges they face. Participants’ feedback on our research proposals was invaluable for development. We will share some of our participants’ creative work and underlying experiences and thoughts, and present their comments on their experiences of participation. / Conclusion: Our creative activities enabled wider reflections on issues which are often less well anticipated, recognised, or understood, thereby facilitating participants’ involvement and engaged discussion of research proposals and possibilities. / Impact: Engaging creatively with our PPI participants facilitated the deepening of end-of-life research ideas, thus strengthening our proposals, and further grounding them in lived experience