Exploring How Children and Young People With Sickle Cell Disease and Their Families Want to be Involved in Research: A Qualitative Study

Abstract

Background

There is growing emphasis on the importance of Patient and Public Involvement and Engagement in research to ensure it addresses the needs of the target population. Disparities exist in terms of underserved and underrepresented groups, including children, young people and minority ethnic groups.

Objective

This study sought to listen, hear and understand what is important for children and young people with sickle cell disorder and their families in terms of research involvement and co-produce resource(s) to enable inclusive and equitable research involvement.

Design

A sequential qualitative study consisting of three work packages to (i) identify structures and processes, (ii) identify resources and (iii) co-produce an animation to enable equitable and inclusive research involvement for children and young people with sickle cell disorder and their families.

Results

Children and young people with sickle cell disorder, their parents and researchers highlighted several important considerations to ensure inclusive and equitable research involvement, including practical elements, the age and stage of development of the child, as well as condition-specific issues such as stigma. The use of a variety of approaches and techniques is vital to support inclusive, equitable and sustained involvement and engagement in research activities.

Conclusion

There are many potential barriers that need to be overcome to involve children and young people with sickle cell disorder and their families in research. These include the need for flexible timings of activities, clear expectation setting, consideration of group dynamics and the impact of different ages and stages of development of the children and young people involved, and ensuring appropriate recognition and compensation for their time. Listening, hearing and understanding what is important to children and young people with long-term conditions and using a variety of approaches is vital to support inclusive, equitable and sustained involvement and engagement in research.

Patient and Public Contribution

Patients (children and young people with sickle cell disorder), caregivers and people with lived experience were involved in conducting the study, analysis and interpretation of the data and preparation of the manuscript.

Trial Registration

NCT06293222.