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Inclusive public participation in health: Policy, practice and theoretical contributions to promote the involvement of marginalised groups in healthcare

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  • de Freitas, Cláudia
  • Martin, Graham

Abstract

Migrants and ethnic minorities are under-represented in spaces created to give citizens voice in healthcare governance. Excluding minority groups from the health participatory sphere may weaken the transformative potential of public participation, (re)producing health inequities. Yet few studies have focused on what enables involvement of marginalised groups in participatory spaces. This paper addresses this issue, using the Participation Chain Model (PCM) as a conceptual framework, and drawing on a case study of user participation in a Dutch mental health advocacy project involving Cape Verdean migrants. Data collection entailed observation, documentary evidence and interviews with Cape Verdeans affected by psychosocial problems (n = 20) and institutional stakeholders (n = 30). We offer practice, policy and theoretical contributions. Practically, we highlight the importance of a proactive approach providing minorities and other marginalised groups with opportunities and incentives that attract, retain and enable them to build and release capacity through involvement. In policy terms, we suggest that both health authorities and civil society organisations have a role in creating ‘hybrid’ spaces that promote the substantive inclusion of marginalised groups in healthcare decision-making. Theoretically, we highlight shortcomings of PCM and its conceptualisation of users' resources, suggesting adaptations to improve its conceptual and practical utility.

Suggested Citation

  • de Freitas, Cláudia & Martin, Graham, 2015. "Inclusive public participation in health: Policy, practice and theoretical contributions to promote the involvement of marginalised groups in healthcare," Social Science & Medicine, Elsevier, vol. 135(C), pages 31-39.
    • Handle: RePEc:eee:socmed:v:135:y:2015:i:c:p:31-39
    DOI: 10.1016/j.socscimed.2015.04.019
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    References listed on IDEAS

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    1. Aveling, Emma-Louise & Martin, Graham, 2013. "Realising the transformative potential of healthcare partnerships: Insights from divergent literatures and contrasting cases in high- and low-income country contexts," Social Science & Medicine, Elsevier, vol. 92(C), pages 74-82.
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    6. Rutter, Deborah & Manley, Catherine & Weaver, Tim & Crawford, Mike J. & Fulop, Naomi, 2004. "Patients or partners? Case studies of user involvement in the planning and delivery of adult mental health services in London," Social Science & Medicine, Elsevier, vol. 58(10), pages 1973-1984, May.
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    2. Daniela E. Miranda & Manuel Garcia-Ramirez & Fabricio E. Balcazar & Yolanda Suarez-Balcazar, 2019. "A Community-Based Participatory Action Research for Roma Health Justice in a Deprived District in Spain," IJERPH, MDPI, vol. 16(19), pages 1-22, October.
    3. Escobar-Ballesta, M. & García-Ramírez, M. & De Freitas, C., 2018. "Taking stock of Roma health policies in Spain: Lessons for health governance," Health Policy, Elsevier, vol. 122(4), pages 444-451.
    4. Tonya Moen Hansen & Knut Stavem & Kim Rand, 2023. "Completing the time trade-off with respondents who are older, in poorer health or with an immigrant background in an EQ-5D-5L valuation study," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 24(6), pages 877-884, August.
    5. Andreassen, Trude & Weiderpass, Elisabete & Nicula, Florian & Suteu, Ofelia & Itu, Andreea & Bumbu, Minodora & Tincu, Aida & Ursin, Giske & Moen, Kåre, 2017. "Controversies about cervical cancer screening: A qualitative study of Roma women's (non)participation in cervical cancer screening in Romania," Social Science & Medicine, Elsevier, vol. 183(C), pages 48-55.
    6. Trude Andreassen & Adriana Melnic & Rejane Figueiredo & Kåre Moen & Ofelia Şuteu & Florian Nicula & Giske Ursin & Elisabete Weiderpass, 2018. "Attendance to cervical cancer screening among Roma and non-Roma women living in North-Western region of Romania," International Journal of Public Health, Springer;Swiss School of Public Health (SSPH+), vol. 63(5), pages 609-619, June.

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