OP-7 Embedding PPIE within a study that co-designed a psycho-therapeutic intervention for young people with life limiting conditions
Year: 2025
Type: conference-paper
Abstract: Introduction Patient public involvement and engagement (PPIE), a requirement of planning and delivering health research, must not be tokenistic to meet funding body requirement. The perceived vulnerability of people towards the end-of-life, particularly young people (YP) with life-limiting conditions (LLCs) may result in exclusion form participating in research. Our co-designed psycho-therapeutic (DIGNISPACE) intervention drew extensively on PPIE methods but was not without challenges. Aim Drawing on our experience of co-designing DIGNISPACE, the café will debate how to ensure meaningful PPIE in research, using the questions below: What are the challenges of involving YP with LLCs in research? What strategies can ensure YP’s involvement & engagement is not tokenistic? How can YP be involved in research from initial conception to grant co-applicant and thereafter? Methods Our participatory activities have included workshops, a range of social media activities including Twitter (now X) chats and Facebook group discussions, TRELLO virtual discussion board, consultation on coding and interface design, in addition to traditional steering group meetings. Results Lower levels of engagement were used to consult at the initial stage of the research, primarily PPIE forums and health professional meetings. YP / family steering group advised on study materials, data collection methods and data analysis reviews. YP advisor was part of the research team and co-applicants on a successful research grant, and lead author on two publications. The involvement of YP with LLCs, across PPIE activities, was challenging, most significantly the death and health deterioration of contributors and peers. Conclusions The patient voice must remain the focus of the research. The successful co-design of DIGNISPACE was rewarding and challenging both practically and emotionally for the research team. Impact Our research approach allowed substantial input from YPs with LLCs, family carers and healthcare professionals: the resultant DIGNISPACE prototype is truly co-designed. References Watts L, Rodriguez A, Tatterton M, Mc Sherry W, Smith J. Stakeholder perceptions of dignity therapy for children and young people with life-limiting conditions study. Integrative Therapies in Palliative Care 2020;5(1). Watts L, Rodriguez A, Tatterton M, Smith J. Meaning making and generativity in children and young people with life limiting conditions. Evidence-Based Nursing 2019;22(2):33–35 Rodriguez A, Smith J, McDermid K. Dignity therapy interventions for young people in palliative care: a rapid structured evidence review. International Journal of Palliative Nursing 2018;24(7):112–121
Language: English
Subfield: General Health Professions
Field: Health Professions
Domain: Health Sciences
Open Access status: gold
OpenAlex ID: W4407285115