Mental health service users' narratives of participation : consensus, dissensus and paradox

Abstract

The current Irish national mental health policy (A Vision for Change, 2006) articulates a recovery-informed approach to mental health service delivery with service user participation positioned as a central element of the recovery process. With reference to this policy aspiration, the present study sets out to generate knowledge on how mental health service users, located in the Irish context, conceptualise service user participation in their contact with mental health services. This study focuses on investigation of how service users experience and perceive participation at the individual level of mental health service usage. Thus, the main aims of the study are to record what benefits service users associate with participation, what factors they regard as helpful or obstructive of their participation, and the possibilities they see for future development of service user participation. The study also sets out to explore the beliefs, opinions and feelings which service users carry regarding participation, both as a concept and as an experience, arising from their interactions with mental health service systems. A review of the literature indicates that participation within the Irish policy agenda reflects wider, international policy agendas of improved citizenship rights and consumer-type inputs on the part of mental health service users, with these rights and inputs feeding into decisions that shape their treatment experiences and health outcomes. In this light, current Irish mental health policy, with its promise of participation, partnership and service-user informed service development, essentially presents a blended citizenship/consumerist agenda for service user participation in Ireland. It is within this wider policy context that the present study seeks to ascertain how the reality of the participation discourse is experienced by Irish-based mental health service users in their contact with the mainstream mental health services. The study positions the views of service users as central to the knowledge it seeks to produce. A narrative methodology, in the qualitative tradition, is adopted within the research design as the data collection method and analysis approach. The narrative approach is an appropriate choice in the present study because of its capacity to bring the researcher into close proximity with the perceptions of the research participants. From the range of available narrative methods, the Voice Centred Relational Method was chosen because it provides a means through which the research participants and the researcher can engage in a process of open, unfettered dialogue, with the experiences of service user participation as the central focus of the discussion. Therefore, the present study offers a rarely achieved insight into how participation is conceptualised and narrated by mental health service users, a group often invisible and inaudible within the wider research field. The study presented in this thesis is based on a detailed analysis of nine interviews with service users who have had years of experience dealing with mental distress as well as extensive contact with mental health services. The interview data contain extensive and rich detail on the lived experiences of service users in terms of their contacts with mental health services in general, and participation at the individual level of service usage in particular. The findings reveal both positive and negative service user experiences of participation in their contact with mental health services and the analysis highlights how such experiences shape service users’ conceptualisation of participation. In particular, the findings indicate that service users view open and respectful communication by service providers as central to optimising their ability to participate with services. The findings also reveal the chilling effect on participation when service users’ views are not taken into account during the process of diagnosis and treatment. Furthermore, the findings highlight how participation cannot be considered in isolation and factors such as paradigm domination, and power inequalities between providers and users must be acknowledged. The findings also draw attention to the challenge of promoting service user participation in a service context where service users perceive their liberty to be in jeopardy if they fully disclose all of their symptoms of mental distress to the service providers involved in their care. It is clear that more knowledge is needed to better understand these dynamics. In particular, more research is needed to reveal the dynamics of power which encircle the roll out of participatory models of service delivery and which potentially stifle its rights-promoting intent.