Poku, Brenda, Nicholls, Natasha, Pilnick, Alison et al. (5 more authors) (2026) Connecting care::Understanding the relational dimensions of supporting migrant children and young people living with sickle cell disease. Social Science & Medicine. 119268. ISSN: 1873-5347
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, caregiving, 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.
Metadata
| Item Type: | Article |
|---|---|
| Authors/Creators: |
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| Keywords: | ethics of care,sickle cell disease,children,young people,health inequality,NHS,third-sector care |
| Dates: |
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| Institution: | The University of York |
| Academic Units: | The University of York > Faculty of Social Sciences (York) > Sociology (York) |
| Date Deposited: | 10 Apr 2026 16:00 |
| Last Modified: | 10 Apr 2026 16:00 |
| Published Version: | https://doi.org/10.1016/j.socscimed.2026.119268 |
| Status: | Published online |
| Refereed: | Yes |
| Identification Number: | 10.1016/j.socscimed.2026.119268 |
| Sustainable Development Goals: | |
| Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:239847 |
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Filename: Connecting_Care_Social_Science_and_Medince_2026.docx
Description: Connecting Care Social Science and Medince 2026
Licence: CC-BY 2.5



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