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Published on: January 12, 2018
Exploring How Children and Young People With Sickle Cell Disease and Their Families Want to be Involved in Research:
Jane Chudleigh1, Addassa Follett2, Ethan Mcfarlane-Griffith3
1Cicely Saunders Institute, King's College London, London, UK.
Insights
Patient and Public Involvement and Engagement (PPIE) in research is crucial for addressing the needs of children and young people with sickle cell disorder. Co-producing resources ensures equitable research participation for these individuals and their families.
Area of Science:
- Health Services Research
- Patient and Public Involvement and Engagement (PPIE)
- Qualitative Research Methods
Background:
- Growing emphasis on PPIE in research to meet population needs.
- Existing disparities in research participation for underserved groups, including children and minority ethnic groups.
- Sickle cell disorder disproportionately affects minority ethnic groups, highlighting the need for inclusive research.
Purpose of the Study:
- To understand the perspectives of children and young people with sickle cell disorder and their families on research involvement.
- To co-produce resources that facilitate inclusive and equitable research participation.
- To address disparities in research engagement for pediatric sickle cell disorder patients.
Main Methods:
- Sequential qualitative study design with three work packages.
- Work package 1: Identification of structures and processes for PPIE.
- Work package 2: Identification of resources to support PPIE.
- Work package 3: Co-production of an animation to promote equitable research involvement.
Main Results:
- Key considerations for inclusive and equitable research involvement identified by patients, families, and researchers.
- Practical elements, developmental stages, and stigma are critical factors.
- Diverse approaches are essential for sustained patient and public involvement and engagement in research.
Conclusions:
- Multiple barriers exist in involving children and young people with sickle cell disorder in research.
- Flexible timings, clear expectations, and consideration of developmental stages are necessary.
- Utilizing varied approaches to listen to and understand patient/family priorities is vital for equitable research engagement.
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.
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