An evaluation of the experiences of young people in Patient and Public Involvement for palliative care research

Abstract

Background: The active involvement of patients and the public in the design and conduct of research (Patient and Public Involvement) is important to add relevance and context. There are particular considerations for involving children and young people in research in potentially sensitive and emotional subject areas such as palliative care. Aim: To evaluate the experiences of young people of Patient and Public Involvement for a paediatric palliative care research study. Design: Anonymous written feedback was collected from group members about their experiences of Patient and Public Involvement in a paediatric palliative care research study. An inductive thematic analysis of the feedback was conducted using NVivo. Setting / Participants: Young people aged 12–22 years who were members of existing advisory groups at a children’s hospital, hospice and the clinical research network in the West Midlands, UK. Results: Feedback was provided by 30 young people at three meetings, held between December 2016 and February 2017. Three themes emerged: (1) Involvement: Young people have a desire to be involved in palliative care research, and recognise the importance of the subject area. (2) Impact: Researchers should demonstrate the impact of the involvement work on the research, by regularly providing feedback. (3) Learning: Opportunities to learn both about the topic and about research more widely were valued. Conclusions: Young people want to be involved in palliative care research, and recognise its importance. A continuous relationship with the researcher throughout the study, with clear demonstration of the impact that their input has on the research plans, are important.

A qualitative study exploring the benefits of involving young people in mental health research

“…">Young people say that a key benefit is feeling like they are making a difference and so it is vital that researchers should find ways to show young people the impact that their contribution has had on the research and the impact of the research as a whole. This reflects broader literature about PPI that emphasizes the importance of feeding back to PPI groups about the contribution that they have made to the research 22 . Honest feedback to young people is important even when there have been (for example) challenges with implementing suggested changes or where funding proposals have been unsuccessful.…”

“…Existing literature tends to focus on the process of involving young people in a particular research project 21,22 or on problematizing the concept of PPI, either from the perspective of researchers 11,23,24 or people with lived experience of mental health difficulties. 10 While this paper touches on some of these topics, it primarily focuses on the benefits for young people who are involved in research between The research findings point to several practical actions that researchers can take when involving young people in research to maximize the benefits for the young people of their involvement.…”

‘It's Powerful’ The impact of involving children and young people in developing paediatric research agendas: A qualitative interview study

“…How these tools are used and how impact is reported, currently varies. 8,20 To explain the importance of evaluating the impact of involving CYP in developing PRAs instead of general research projects, it is important to acknowledge that the involvement of CYP in research can be divided into three phases: the preparatory, the execution and the translation phase. During the preparatory phase, CYP can be involved in the prioritisation of research topics, 21 which involves developing PRAs.…”

Developing a More Tailored Approach to Patient and Public Involvement with Children and Families in Pediatric Clinical Research: Lessons Learned

“…Those who work with children and families understand that involving them meaningfully requires tailoring practices and methods to suit their needs and requirements [ 7 ]. Involving children, in particular, is complex and multi-dimensional, requiring consideration of four key areas: Level of participation (degrees of power-sharing between adults and children), Focus of decision-making (individual or collective), Model of participation (consultation, collaboration, child-led), and Clarity of the term ‘children’ which covers a diverse group who are not only different in their personal circumstances (age, sex, ethnicity, culture, disability, social and economic circumstances) but their changing interests and capacities as they grow older [ 8 ].…”

“…Those who work with children and families understand that involving them meaningfully requires tailoring practices and methods to suit their needs and requirements [7]. Involving children, in particular, is complex and multidimensional, requiring consideration of four key areas:…”