IDEAS home Printed from https://ideas.repec.org/a/eee/socmed/v400y2026ics0277953626003448.html

Connecting care: Understanding the relational dimensions of supporting migrant children and young people living with sickle cell disease

Author

Listed:
  • Poku, Brenda Agyeiwaa
  • Nicholls, Natasha
  • Pilnick, Alison
  • Atkin, Karl Michael
  • Olutayo, Gloria
  • Olowofoyeku, David Adeyemi
  • Olowofoyeku, Nathaniel Adebayo
  • Kawonga, Tamia

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.

Suggested Citation

  • Poku, Brenda Agyeiwaa & Nicholls, Natasha & Pilnick, Alison & Atkin, Karl Michael & Olutayo, Gloria & Olowofoyeku, David Adeyemi & Olowofoyeku, Nathaniel Adebayo & Kawonga, Tamia, 2026. "Connecting care: Understanding the relational dimensions of supporting migrant children and young people living with sickle cell disease," Social Science & Medicine, Elsevier, vol. 400(C).
  • Handle: RePEc:eee:socmed:v:400:y:2026:i:c:s0277953626003448
    DOI: 10.1016/j.socscimed.2026.119268
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0277953626003448
    Download Restriction: Full text for ScienceDirect subscribers only

    File URL: https://libkey.io/10.1016/j.socscimed.2026.119268?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    As the access to this document is restricted, you may want to

    for a different version of it.

    More about this item

    Keywords

    ;
    ;
    ;
    ;
    ;
    ;
    ;
    ;

    Statistics

    Access and download statistics

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:eee:socmed:v:400:y:2026:i:c:s0277953626003448. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    We have no bibliographic references for this item. You can help adding them by using this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Catherine Liu (email available below). General contact details of provider: http://www.elsevier.com/wps/find/journaldescription.cws_home/315/description#description .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.