What are the experiences of young people in PPI for palliative care research?

Conference: 
SAPC ASM 2020 - cancelled due to pandemic
Talk Code: 
O.6
Presenter: 
Sarah Mitchell
Twitter: 
@MacGPSarah
Co-authors: 
Dena Khan, Jane Coad, Anne-Marie Slowther, Jeremy Dale
Author institutions: 
University of Sheffield, NIHR CRN West Midlands Young People's Steering Group, University of Nottingham, University of Warwick

Problem

Patient and Public Involvement (PPI) is an integral part of research, advocated by many research funders. However, evaluation of the experiences of PPI group members and the impact of PPI work on the research is inconsistent and rarely reported. This abstract describes an evaluation of the experiences of young people (aged 9-25 years) who provided 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. Feedback was collected at two PPI sessions. An inductive thematic analysis of the feedback was conducted using NVivo.

Findings

Feedback was provided by all 16 young people who attended the sessions. Two overarching themes were identified: 1. A desire to feel engaged in the research. Group members want the PPI work they are involved in to have an influence on the research, and for the research to have an impact. Young people felt particularly engaged through opportunities to learn both about the research topic and about research more widely, including methods and dissemination activities.2. Relationship with the researcher. The development of rapport over several sessions allowed the discussion of sensitive topics. Young people wanted the researcher to listen, respond and demonstrate the results of their PPI in the research.

Consequences

This small evaluation provided insights to guide the planning of PPI for future research, both in palliative care and with young people more widely. PPI in palliative care research can be a fulfilling experience for young people despite the potentially sensitive subject area. The relationship with the researcher and the conduct of the PPI work are important factors, with regular feedback provided and the development of rapport over time ensuring that young people have the opportunity to learn, to have influence on the research process and for them to see that the research to has impact.

Submitted by: 
Sarah Mitchell
Funding acknowledgement: 
My funding was provided through a National Institute of Health Research Doctoral Research Fellowship, DRF-2014-07-065.