Personalising service user engagement : entrepreneurs and membership organisations in the mental health sector

Sammanfattning: New modes of social mobilisation are emerging in the mental health sector. Member-based mental health service user organisations (MHSUOs), targeting people with lived experience of mental ill-health and occasionally their relatives, have been active in Sweden since the 1960s. Today, broader developments towards personalisation of politics are visible in the area, exemplified by the phenomenon ‘service user entrepreneurs’ (SUEs). These are individuals with lived experience of mental ill-health, channelling their engagement through businesses they have established and typically using social media to build networks around their causes.The overall aim of this thesis is to contribute to the understanding of service user engagement in the mental health sector, as it is expressed through collective and personalised forms of mobilisation. More specifically, I will examine the expressions of and the dynamic between member-based MHSUOs and network-based SUEs.The thesis consists of four sub-studies: Study I is an international narrative literature review that analyses the role of and challenges facing MHSUOs. Study II is a document study focused on mapping Swedish MHSUOs in relation to their activities and relationships. Through case study methodology, study III examines the communication of SUEs, specifically attending to how they establish authority. Based on interviews with SUEs and representatives of MHSUOs, study IV explores how these groups regard the role of experiential knowledge for their endeavours.In the thesis I discuss how professionalisation and hybridisation processes are seen in Swedish MHSUOs. These organisations engage in advocacy but also educational activities, and provide experiential knowledge as a service to external actors. MHSUOs typically have close collaborations with public authorities. Such collaborations have political potential, by giving service user groups the ability to contribute to policy development. However, there are also associated risks of tokenism and co-optation. Maintaining and investing in more autonomous spaces to meet and develop alternative perspectives, would be a strategy for MHSUOs to protect their independence. I further discuss how the emergence of SUEs is typical of broader trends in social mobilisation towards the use of social media and a focus on personal narratives. The phenomenon SUE distinctively illustrates a broader social surge for publicised accounts of vulnerability that can be capitalised on. The analysis identifies personal narratives, mobilisation of collectives and institutional perspectives as sources of authority drawn upon in the SUEs’ communication.Furthermore, the results show that SUEs and MHSUOs have witnessed increased demand for their experiential knowledge. Experiential knowledge can be articulated through personal narratives of individual experience, but also as a form of knowledge that originates in collectively deliberated experiences. These different articulations have distinct political potential. However, it is important to clarify what kind of experiential knowledge and representativeness that is required in different arenas.