A sense of injustice in care networks

An intersectional exploration of the collaboration between professionals and carers with a migration background

Bibliographic Data

ID4599378
AuthorsAldiene Henrieke Hengelaar (0000-0001-8908-1035, Amsterdam UMC Location Vrije Universiteit Amsterdam, corresponding author), Petra Verdonk (0000-0003-0464-8210, Amsterdam UMC Location Vrije Universiteit Amsterdam), Margo Van Hartingsveldt (0000-0001-8288-0002, Amsterdam University of Applied Sciences), Tineke Abma (0000-0002-8902-322X, Leiden University)
Year2024
Volume356
Pages117169
Publication date2024-09-01
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueSocial Science & Medicine (JOURNAL)
Journal identifiersISSN: 0277-9536 • E-ISSN: 1873-5347
PublisherElsevier BV (PUBLISHER)
DOI10.1016/j.socscimed.2024.117169
PMID39096534
OpenAlexW4401198878
LanguageEN
Citations received6
References cited94

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

Economic Justice · Focus group · Injustice · Intersectionality · Political science · Power (physics · Qualitative research · Sociology · Gender Studies · Interprofessional Education and Collaboration · Medicine · Mental Health and Patient Involvement · Nursing · Palliative Care and End-of-Life Issues · Psychology · Social Psychology

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