de Freitas Cláudia, Martin Graham
Centre for Research and Studies in Sociology, University Institute of Lisbon, Portugal; EPIUnit - Institute of Public Health, University of Porto, Portugal; ERCOMER, Utrecht University, Netherlands.
Department of Health Sciences, University of Leicester, United Kingdom.
Soc Sci Med. 2015 Jun;135:31-9. doi: 10.1016/j.socscimed.2015.04.019. Epub 2015 Apr 23.
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.
在旨在让公民在医疗治理中发声的空间里，移民和少数族裔的代表性不足。将少数群体排除在健康参与领域之外，可能会削弱公众参与的变革潜力，（再）制造健康不平等。然而，很少有研究关注是什么因素促使边缘化群体参与到参与性空间中。本文以参与链模型（PCM）为概念框架，通过对佛得角移民参与荷兰心理健康倡导项目的用户参与案例研究来探讨这一问题。数据收集包括观察、文献证据以及对受心理社会问题影响的佛得角人（n = 20）和机构利益相关者（n = 30）的访谈。我们在实践、政策和理论方面都有所贡献。在实践方面，我们强调积极主动方法的重要性，即向少数群体和其他边缘化群体提供机会和激励措施，吸引、留住他们并使他们能够通过参与来建立和释放能力。在政策方面，我们建议卫生当局和民间社会组织都应发挥作用，创造“混合”空间，促进边缘化群体实质性地参与医疗决策。在理论方面，我们强调了PCM及其对用户资源概念化的不足之处，建议进行调整以提高其概念和实际效用。
