The experience of young people in patient and public involvement (PPI) for palliative care research

Problem

Patient and Public Involvement (PPI) is an integral part of research. Evaluating the experience of PPI group members and the impact of PPI is important. This abstract describes an evaluation of the experiences of young people providing PPI for a palliative care research project.

Approach

PPI group members were asked to provide anonymous written feedback on any aspect of their PPI experience related to this research project, using a method based on “Tell Me…”, as outlined in RCPCH & Us Recipes for Engagement. An inductive thematic analysis of the feedback was conducted using NVivo.

Findings

Feedback was provided by all 16 young people who attended the session. Two overarching themes were identified:

1. Engagement in the research. Group members want the PPI work to have an influence on the research, and for the research to have an impact. Benefits to young people included opportunity to learn both about the topic and about research more widely.

2. Relationship with the researcher. Rapport allows the discussion of sensitive topics. Young people want a the researcher to listen, respond and demonstrate the results of their PPI in the research.

Consequences

PPI in palliative care research can be a fulfilling experience for young people despite the sensitive subject. The relationship with the researcher and the conduct of the PPI work are important factors. Young people report motivations for their involvement as the subject area, a desire to have influence on the research process and for the research to have impact.