A child-rights approach to involving children and young people in the design and conduct of clinical studies

My Research

Whilst policy and evidence strongly support the active involvement of patients and the public in the design and delivery of health research, it is more difficult to define how this is realised in practice, especially where children and young people are concerned. Most of the issues highlighted in the literature focus on work with adult patients and members of the public and pays very little attention to developing clinical studies in partnership with children and young people. This has resulted in a limited understanding or published practical guidance on how to meaningfully involve children and young people in the design and conduct of clinical studies. 

Exploring the views of children and young people about their experiences of involvement in the design and conduct of clinical studies and how it can be evaluated, reported, and shared in a meaningful manner, will close the gap in understanding how involvement works in practice. 

The aims of this PhD research are:

a) to look at children and young people’s perspectives on the quality and impact of participation, and to empower them to self-reflect and self-evaluate their experiences; and second, to co-create, design, and

b) evaluate a suite of practical tools (developed by children and young people)to support and enhance their participation (hereon referred to as a participation framework).  

Children and young people in this project are understood to be competent participants and as valuable contributors in research.  Children and young people (aged 8-18 years) will be involved as research partners (Young Peer Researchers) and research respondents.  The research will adopt a mixed methods design (informed by the Young Peer Researchers), using both quantitative (surveys) and qualitative (individual semi-structured interviews and focus groups) methods.

Stage 1 – Scoping review of how PPI with children and young people is reported

One task part of the first stage of my research was to explore how PPI with children and young people is reported in NIHR funded research projects.

The aim was to examine in detail the reports that are completed by researchers about involvement activities with CYP. The review focused on the sections of reports that describe the involvement of CYP in these types of activities, not adult involvement (parents and other stakeholders).  The focus was on the following questions: 

1. What opportunities are offered to CYP, including levels and stages of involvement? 
2. Who is involved and how?
3. What are the reported outcomes and impacts of PPI with CYP? 
4. How do CYP support the dissemination of research findings?
5. What are the reported challenges and facilitators to involvement? 

A summary of reported CYP involvement activities can be found in this poster. It builds a picture of how NIHR funded researchers are conducting and reporting PPI with CYP.  I acknowledge that documentary evidence is not a proxy for actual PPI practice, and it is not my intention to offer judgements about practice or individuals responsible for writing the reports.  A paper will be published in the coming months.

Follow my blog to keep track of progress. There will be some interesting posts over the coming months.