Health and social care experience and research perception of different ethnic minority populations in the East Midlands, United Kingdom (REPRESENT Study)

Winifred Ekezie*, Shabana Cassambai, Barbara Czyznikowska, Ffion Curtis, Lauren L. O'Mahoney, Andrew Willis, Yogini V. Chudasama, Kamlesh Khunti, Azhar Farooqi

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

Abstract

Introduction: Ethnic minority populations experience significant health and social care disparities; despite experiencing a greater burden of diseases, these groups are underrepresented in health and social care research. Consequently, related research can be less applicable to these population groups. The REPRESENT study aims to explore the health and social care experiences of ethnic minority and other minoritised populations, their research interests and appropriate research practices.
Methods: Focus groups and semi-structured interviews were conducted between May and September 2022 with members of a number of ethnic minority communities in England. Data were audio recorded, transcribed, and thematically coded using NVivo 12. Rigour was determined through extensive sampling, iterative data collection and analysis.
Findings: 52 ethnic minority members were engaged in group interviews and one-to-one interviews. Participants included representatives of the following groups: African Caribbean, Eastern European, Gypsy Travellers, LGBTQIA+, Refugee/Asylum Seekers, Somali and South Asian communities. Interviews were also conducted with ethnic minority healthcare providers and researchers. Three overarching categories were identified: health information, medical service experiences, health and social care concerns and health research. Health and social care services challenges were mostly attributed to discrimination, delayed services, poor cultural relevance, and language and cultural barriers. Most influential information sources were local community organisations and word-of-mouth. The main health and social care concerns were chronic long-term health conditions, mental health, maternal health, and child development. Recommendations for research involved understanding the motivations for participation, improving communication and empowering communities. Top research priorities were long-term health conditions, health promotion and education, early care interventions and understanding community needs.
Interpretation: Discrimination and bias in health and social care provision have severe implications for worsening ethnic health inequalities. Healthcare commissioning authorities and policymakers can leverage the preference of ethnic minority groups for pharmacy services and community organisations to improve access to care. Improving research interest and engagement requires understanding individual community needs, community sensitivity, research relevance, and cultural appropriateness.
Patient or Public Contribution: Members of ethnic minority Patient and Public Involvement and Engagement (PPIE) group and Community Advisory Board (CAB) supported the REPRESENT study design, conceptualisation and report development.
Original languageEnglish
Article numbere13944
JournalHealth Expectations
Volume27
Issue number1
Early online date21 Dec 2023
DOIs
Publication statusPublished - Feb 2024

Bibliographical note

© 2023 The Authors. Health Expectations published by John Wiley & Sons Ltd.

This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

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