Participation in mental health care by ethnic minority users: case studies from the Netherlands and Brazil

Abstract

This thesis examines participation in mental health care by users from socially disadvantaged ethnic minority groups in the Netherlands and in Brazil. Despite considerable evidence that minority users are under-represented in health participatory spaces in these and other countries around the world, there are few empirical studies on what works to promote minority user participation. This thesis aims to fill this gap by identifying minority users who are engaged in mental health participatory spaces and investigating why and how they get involved. It also aims to evaluate the benefits of participation for involved minority users and to examine the barriers which prevent users from reaching their full participatory potential. To achieve these goals, a qualitative research approach and a case study strategy of enquiry was adopted involving two exemplary situations: the case of Cape Verdean migrants’ participation in a community-based advocacy project focused on mental health promotion in Rotterdam; andthe case of minority Northeasterners’ participation in a community-based mental health care service in Rio de Janeiro. The results reveal that the involvement of Cape Verdean migrants and minority Northeasterners in mental health participatory initiatives is driven by a broad range of individual and collective motivations. Put together, these motivations indicate a strong desire by users to promote not just their own social inclusion but also the exercise of full citizenship by other members of their communities. Although users’ motivations play an important role in their decisions to get engaged, this thesis shows that they are not sufficient to guarantee the start and continuation of their participation. In addition to motivations, direct recruitment, capacity-building and empowering participatory spaces are all essential enablers of participation by user groups in a position of disadvantage. This thesis also shows that participation can generate a number of substantive benefits for minority users, including broader social networks, empowerment, an increased sense of citizenship, enhanced health literacy and improved access to mental health care. These benefits have a positive effect on each other and together they strengthen users’ willingness to stay engaged and their capacity to take participation a step forward (e.g. by getting involved in ‘health invited spaces’). These effects, however, are observed only among users who express collective motivations for participation. This thesis also identifies several barriers that hold back the full development of participation by minority users, including unawareness of opportunities for involvement in other participatory spaces, self-exclusion from invited mental health spaces due to fear of stigmatisation, and exclusionary dynamics within participatory initiatives that cause users to drop-out. These demand- and supply-side barriers limit the inclusiveness of health participatory spaces and diminish their potential for fostering the development of effective, comprehensive and diversity-sensitive health care policy and service delivery. The thesis concludes that socially disadvantaged minority users can be successfully engaged in mental health invited spaces, but promoting their involvement requires a proactive approach which recognises that marginalised groups need to build confidence, capacity and a sense of entitlement in order to exercise their citizenship and make use of opportunities for participation.