Peer-reviewed article
Connecting care: Understanding the relational dimensions of supporting migrant children and young people living with sickle cell disease.
Poku BA, Nicholls N, Pilnick A, Atkin KM, Olutayo G et al. ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This study examines how healthcare professionals and third-sector workers support migrant children and young people with sickle cell disease in the UK. Using interviews with 23 service providers and an ethics of care framework, the researchers found that workers undertake significant informal, relational and emotional labour to bridge gaps in provision. However, this work is often unsupported by formal structures, making care precarious and ad hoc. The findings suggest that sustainable care requires systemic change rather than relying on individual practitioners' efforts.
Key points
- Service providers undertake substantial informal and moral labour to support migrant children with sickle cell disease within fragmented health systems
- Care is characterised by empathy and advocacy but lacks formal structural support
- Service providers struggled to enact shared, socially-shaped care processes within fragmented systems
- Care for this population is often precarious, ad hoc, and emotionally demanding for workers
- Sustainable and equitable care requires systemic change that embeds care as a collective institutional responsibility
Limitations
This study focuses on service provider perspectives in the UK only; it does not directly assess health outcomes for migrant children with sickle cell disease or explore the experiences of children and young people themselves.
Abstract
Migrant children and young people (CYP) living with sickle cell disease (SCD) in the UK face persistent, intersecting barriers to care. While existing research often maps these barriers, less is known about how service providers navigate them in practice. This study draws on Tronto's ethics of care framework (1993; 2013) to examine how healthcare professionals and third-sector organisation workers enact care for migrant CYP living with SCD within a fragmented and unequal health system. We conducted semi-structured interviews with 23 service providers, comprising 14 healthcare professionals and 9 third-sector workers. We analysed the data using constructivist grounded theory co-produced with Public and Patient Involvement advisors. Using Tronto's five phases of care - caring about, caring for, care giving, care receiving, and caring with - we examine how service providers described identifying needs, assuming responsibility, navigating practical and institutional challenges, responding to feedback and creating solidarity amid systemic constraints.Our findings highlight the informal, relational, and moral labour service providers undertake to bridge gaps in provision. This work is characterised by empathy and advocacy but is often unsupported by formal structures. While service providers recognised that care should be a shared, socially shaped process, they often found this difficult to enact within fragmented systems, leaving care precarious, ad hoc, and emotionally demanding. This underscores the limits of relational care in the absence of systemic support. We argue that, although Tronto's framework offers a valuable lens for understanding everyday ethics, sustainable and equitable care for migrant CYP living with SCD requires systemic change that embeds care as a collective, institutional responsibility.