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A sense of injustice in care networks: An intersectional exploration of the collaboration between professionals and carers with a migration background

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  • Hengelaar, Aldiene Henrieke
  • Verdonk, Petra
  • van Hartingsveldt, Margo
  • Abma, Tineke

Abstract

This study tries to understand the power of knowledge within collaborative care networks to provide insights for designing successful collaboration within care networks by combining intersectionality and epistemic (in)justice. Becoming an informal carer for someone with an acquired brain injury (ABI) causes a dramatic disruption of daily life. Collaboration between professionals and carers with a migration background may result in unjust and unfair situations within care networks. Carer experiences are shaped by aspects of diversity which are subject to power structures and processes of social (in)justice in care networks. In this study, intersectionality was used to both generate complex in-depth insights into the different active layers of carer experiences and focus on within-group differences. Intersectionality was combined with the theoretical concept of epistemic (in)justice to unravel underlying dynamics in collaborative care networks contributing to the understanding that carers with a migration background are often not seen as ‘knowers of reality.’ This qualitative study conducted in the Netherlands between 2019 and 2022 incorporated three informal group conversations (N = 32), semi-structured interviews (N = 21), and three dialogue sessions (N = 7) with carers caring for someone with an ABI. A critical friend and a community of practice, with carers, professionals, and care recipients (N = 8), contributed to the analysis. Three interrelated themes were identified as constituting different layers of the carer experience: (a) I need to keep going, focusing on carers' personal experiences and how experiences were related to carers social positioning; (b) the struggle of caring together, showing how expectations of family members towards carers added to carer burden; and (c) trust is a balancing act, centering on how support from professionals shaped carers' experiences, in which trusting professionals' support proved challenging for carers, and how this trust was influenced by contextual factors at organizational and policy levels. Overall, the need for diversity-responsive policies within care organizations is apparent. Carers with a migration background need to feel heard so they can meaningfully tailor care to meet recipients' needs.

Suggested Citation

  • Hengelaar, Aldiene Henrieke & Verdonk, Petra & van Hartingsveldt, Margo & Abma, Tineke, 2024. "A sense of injustice in care networks: An intersectional exploration of the collaboration between professionals and carers with a migration background," Social Science & Medicine, Elsevier, vol. 356(C).
    • Handle: RePEc:eee:socmed:v:356:y:2024:i:c:s0277953624006221
    DOI: 10.1016/j.socscimed.2024.117169
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    References listed on IDEAS

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    1. Sarah Cummings & Charles Dhewa & Gladys Kemboi & Stacey Young, 2023. "Doing epistemic justice in sustainable development: Applying the philosophical concept of epistemic injustice to the real world," Sustainable Development, John Wiley & Sons, Ltd., vol. 31(3), pages 1965-1977, June.
    2. Wojdan Omran & Shumaila Yousafzai, 2024. "Epistemic Injustice and Epistemic Resistance: An Intersectional Study of Women’s Entrepreneurship Under Occupation and Patriarchy," Entrepreneurship Theory and Practice, , vol. 48(4), pages 981-1008, July.
    3. Beth Patin & Melinda Sebastian & Jieun Yeon & Danielle Bertolini & Alexandra Grimm, 2021. "Interrupting epistemicide: A practical framework for naming, identifying, and ending epistemic injustice in the information professions," Journal of the Association for Information Science & Technology, Association for Information Science & Technology, vol. 72(10), pages 1306-1318, October.
    4. Kamila Hynek & Aslaug Gotehus & Fredrik Methi & Ragnhild Bang Nes & Vegard Skirbekk & Thomas Hansen, 2023. "Caregiving + Migrant Background = Double Jeopardy? Associations between Caregiving and Physical and Psychological Health According to Migrant Backgrounds in Norway," IJERPH, MDPI, vol. 20(10), pages 1-13, May.
    5. Tami Oliphant, 2021. "Emerging (information) realities and epistemic injustice," Journal of the Association for Information Science & Technology, Association for Information Science & Technology, vol. 72(8), pages 951-962, August.
    6. Anna Kavga & Ioannis Kalemikerakis & Anastasios Faros & Maria Milaka & Dimitra Tsekoura & Maria Skoulatou & Ioanna Tsatsou & Ourania Govina, 2021. "The Effects of Patients’ and Caregivers’ Characteristics on the Burden of Families Caring for Stroke Survivors," IJERPH, MDPI, vol. 18(14), pages 1-11, July.
    7. Abrams, Jasmine A. & Tabaac, Ariella & Jung, Sarah & Else-Quest, Nicole M., 2020. "Considerations for employing intersectionality in qualitative health research," Social Science & Medicine, Elsevier, vol. 258(C).
    8. Martha Adelia Montero-Sieburth, 2020. "Who gives “Voice” or “Empowers Migrants” in Participatory Action Research? Challenges and Solutions," Migration Letters, Migration Letters, vol. 17(2), pages 1-8, April.
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