Invisible Navigators: Migrant Parents and the Everyday Labour of Managing Sickle Cell Disease in the UK

Migrant parents of children and young people (CYP) living with sickle cell disease (SCD) must manage complex care needs within unfamiliar healthcare systems. Drawing on qualitative interviews with migrant parents in England, this study examines how migration reshapes healthcare navigation. Using navigation as an analytical lens, the findings show that parents act as de facto navigators, coordinating services across healthcare, education and welfare domains without structured support. Beyond practical coordination, navigation involved sustained relational, emotional and identity work. Parents described learning to interpret new institutional rules, (re)negotiating expectations of 'good' parenting in a different national context and managing stigma linked to illness, ethnicity and immigration status. Migration intensified caregiving responsibilities through disrupted support networks, legal and economic constraints and uneven access to resources. Although UK services were valued for specialist expertise, parents reported the need for continual self-advocacy within fragmented systems. The study extends navigation scholarship by foregrounding migrant parents' unpaid and often unrecognised labour and demonstrates how healthcare navigation is shaped by intersecting migration, policy and racialised contexts. The findings highlight the importance of embedding condition-specific navigation support within existing specialist services.