Aiming for inclusion: a case study of motivations for involvement in mental health-care governance by ethnic minority users

Abstract

Objective: To examine the motivations for involvement in mental health-care governance by socially disadvantaged ethnic minority users. Design and setting: A qualitative case study approach was employed to investigate the involvement of minority north-eastern users in mental health-care governance at CAPS Pedro Pellegrino in Rio de Janeiro, Brazil. Semi-structured interviews with minority Northeasterners (n = 12) and institutional stakeholders (n = 26) were complemented by participant observation of user assembly and user movement meetings. Findings: Minority Northeasterners express both individual and collective motivations for involvement in mental health-care governance. Individual motivations include the desire to increase social interaction, acquire meaningful social roles and overcome the stigma attached to mental illness. Collective motivations include the intent to improve the responsiveness of mental health care and achieve social justice for people with mental problems. Taken together, these motivations demonstrate a strong aspiration by users to promote their social inclusion and the inclusion of others who also experience marginalization. Results also reveal that the involvement of long-term participants is driven mostly by collective goals while early-stage participants focus predominantly in dealing with individual concerns. This is at odds with the mutual incentives theory, which postulates that collective motivations prevail over individual motivations in explaining user involvement. Conclusion: Groups historically excluded from decision-making processes may identify social inclusion as the core goal of their involvement. Initiatives aiming to increase user participation in health-care governance must address the range of motivations driving the involvement of users, instead of focusing solely on issues related to health-care management and provision.