Young people with sickle cell disease are moving from paediatric to adult care without the cultural understanding or support they need, and this project will co-design a better way to do it. Sickle cell disease is the fastest-growing inherited disorder in the UK, yet it remains under-recognised and undertreated. The condition disproportionately affects people of African and Caribbean descent, who already face racism and stigmatisation in healthcare. This mistrust often leads young people to disengage from services just when they need them most—during the transition to adult care. Poorly managed transitions can trigger health deterioration, more emergency hospital visits, and life-threatening complications. Current transition services do not acknowledge racism or consider the role of family, community, or society in shaping health outcomes. If this research succeeds, it will produce concrete, co-designed recommendations for a culturally responsive healthcare transition programme. NHS service commissioners and managers will have a practical, evidence-based framework to reorganise how transition care is delivered. An online resource will share the outputs widely. For young people with sickle cell disease, this could mean fewer emergency admissions, better treatment adherence, and a healthcare system that actually sees and supports them.
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BACKGROUND Sickle cell disease (SCD) is the fastest-growing inherited disorder in the UK, and its prevalence is highest in people of African and Caribbean descent. SCD is under-recognised and undertreated, and there is an urgent need to reduce morbidity and mortality. This ethnic-minoritised population experience significant health and societal inequities, including racism and stigmatisation in healthcare provision. The resulting mistrust and potential service disengagement likely lead to children and young people (CYP) living with SCD being less prepared and lacking support in the transition from paediatric to adult healthcare. Poorly managed and supported transition can have negative sequelae, including reduced treatment adherence, health deterioration, increased emergency hospitalisations, and life-threatening consequences. Healthcare transition for CYP living with SCD does not currently include culturally-responsive practices that acknowledge racism and discrimination or consider the interconnected systems of family, community, and society on health outcomes. Thus, we aim to co-develop content, delivery components, and recommendations for the culturally responsive healthcare transition of CYP with SCD to inform service commissioning, organisation, and delivery. CYP and caregivers will advise and share expertise throughout the project. AIMS 1. Synthesise evidence on culturally-responsive transition practices for CYP living with LTCs in a scoping review. 2. Understand the facilitators and barriers to coordinated transition for CYP living with SCD. 3. Co-produce components and recommendations for a culturally responsive SCD healthcare transition programme. 4. Develop an online resource to share the outputs and collate key stakeholder feedback. METHODS Stage 1 (Months 1-6): we will conduct a scoping review of transition services for CYPs with LTCs, focusing on identifying culturally responsive practices. Stage 2 (Months 7-19): we will conduct separate focus groups with CYP living with SCD aged 13-23 years (before, during, and post-transition) and caregivers and interview key stakeholders to identify components for a culturally responsive healthcare transition programme. We will analyse data using a thematic approach. Stage 3 (Months 18-22): we will conduct four co-design workshops (3 regional, 1 national) with Stage 2 participants and key stakeholders to co-design the content, components and recommendations for a culturally responsive SCD healthcare transition programme. In Stage 4 (Months 23-27): we will develop an online tool informed by Stage 3. Thirty key stakeholders (e.g., NHS service commissioners and managers) will provide feedback on the co-produced recommendations' practicality, feasibility, and acceptability. IMPACT AND DISSEMINATION (Month 28-30): We will work with the Sickle Cell Society and our patient public involvement (PPI) and NHS stakeholders to ensure wide dissemination of the online resources, study animations, printed factsheets, and lay summaries to key stakeholders (e.g., NHS service commissioners), organisations, and SCD networks, via webinars and presentations to lay, professional, and academic audiences. Given the paucity of SCD-focused research in the UK, limited SCD awareness, and the prevalence of inequities for CYP living with SCD, our project could have a compelling impact and improve the commissioning and provision of culturally responsive healthcare transition for CYP with SCD.
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