Service users' experiences of participation in decision making in mental health services

Abstract

Service user participation in decision making is considered an essential component of recovery-oriented mental health services. Despite the potential of shared decision making to impact service users knowledge and positively influence their experience of decisional conflict, there is a lack of qualitative research on how participation in decision making is promoted from the perspective of psychiatric service users. In order to develop concrete methods that facilitate shared decision making, there is a need for increased knowledge regarding the users' own perspective. The aim of this study was to explore users' experiences of participation in decisions in mental health services in Sweden, and the kinds of support that may promote participation. Constructivist Grounded Theory (CGT) was utilized to analyse group and individual interviews with 20 users with experience of serious mental illness. The core category that emerged in the analysis described a 'struggle to be perceived as a competent and equal person' while three related categories including being the underdog, being controlled and being omitted described the difficulties of participating in decisions. The data analysis resulted in a model that describes internal and external conditions that influence the promotion of participation in decision making. The findings offer new insights from a user perspective and these can be utilized to develop and investigate concrete methods in order to promote user's participation in decisions.

Attitudes towards shared decision making in mental health: a qualitative synthesis

“…As mentioned above, service users often report their views are seen as less important or less valued than practitioners (Velligan et al, 2016;Dahlqvist et al, 2015). In Dahlqvist et al's (2015) grounded theory analysis of 20 group and individual interviews with mental health service users in Sweden, three themes are presented: Being the underdog, being controlled, and being omitted, when describing challenges in participating in SDM.…”

“…Many service users report that they are struggling to be heard or seen as competent and equal in the encounters (Kaminskiy, Morant, Ramon, 2013;Dahlqvist et al 2015;Tee et al, 2007;Farelly et al, 2015;Velligan et al, 2016) and present numerous ways in which these problems can be overcome, as well as offering suggestions for how to enable service users having a greater voice. We present these enablers and challenges under three broad sub headings: Factors related to the service user; factors related to the practitioner and factors related to the wider cultural system.…”

“…In addition, feelings of perceived inadequacy and a fear of being judged were linked to how involved service users felt they could be (Dahlqvist et al, 2015). Symptomology, diagnosis and stage of recovery is highlighted as influencing both preferences towards SDM as well as the likelihood that SDM will take place (De las Cuevas et al, 2014;Park et al, 2014;Puschner et al, 2016).…”

“…In Dahlqvist et al's (2015) grounded theory analysis of 20 group and individual interviews with mental health service users in Sweden, three themes are presented: Being the underdog, being controlled, and being omitted, when describing challenges in participating in SDM. This points to challenges of the wider context in terms of the culture within mental health services, with for example paternalistic practice and other disciplinary forms of power as both prevalent and an important challenge for achieving SDM in practice.…”

Talking about mental health nursing: a qualitative analysis of nurses’ and service users’ accounts

“…I stress the use of 'created' here, as currently involvement is still rather a staff-led activity. Service users have reported feeling like the underdog, and that they are often controlled and omitted from decision making (Jönsson, Schon, Rosenberg, Sandlund & Svedberg, 2015) in relation to their care.…”