SC_Transition Voices
Research type
Research Study
Full title
Voices of Change: Exploring Culturally-Responsive Pathways for Young People Moving from Sickle Cell Paediatric to Adult Healthcare
IRAS ID
365695
Contact name
Anna Hood
Contact email
Sponsor organisation
The University of Manchester
Duration of Study in the UK
1 years, 5 months, 30 days
Research summary
This study aims to co-develop culturally-responsive pathways for young people with sickle cell disease (SCD) transitioning from paediatric to adult healthcare. SCD is the fastest-growing inherited disorder in the UK, predominantly affecting people of African and Caribbean descent. This ethnic-minoritised population experiences significant health inequities, including racism and stigmatisation in healthcare provision, which can lead to mistrust and service disengagement. The transition from paediatric to adult healthcare is a particularly challenging period for children and young people (CYP) living with SCD. Poorly managed transitions can result in reduced treatment adherence, health deterioration, increased emergency hospitalisations, and life-threatening consequences. Current healthcare transition models do not adequately address cultural responsivity or consider the interconnected systems of family, community, and society on health outcomes.
This project will conduct a phased developmental process including qualitative interviews, co-design workshops, and development of an online resource. The study will engage CYP living with SCD, caregivers, healthcare professionals, and key stakeholders (e.g., NHS service commissioners, teachers, school counsellors, charity organisation representatives) across UK regions where SCD is most prevalent (North West, London, Midlands) to co-produce components and recommendations for a culturally-responsive SCD healthcare transition programme. The research is expected to inform service commissioning, organisation, and delivery whilst addressing the urgent need to reduce morbidity and mortality in this underserved population.
REC name
West Midlands - Black Country Research Ethics Committee
REC reference
26/WM/0086
Date of REC Opinion
26 May 2026
REC opinion
Further Information Favourable Opinion