Shared decision-making in mental health care—A user perspective on decisional needs in community-based services

Abstract

BackgroundShared decision-making (SDM) is an emergent research topic in the field of mental health care and is considered to be a central component of a recovery-oriented system. Despite the evidence suggesting the benefits of this change in the power relationship between users and practitioners, the method has not been widely implemented in clinical practice.ObjectiveThe objective of this study was to investigate decisional and information needs among users with mental illness as a prerequisite for the development of a decision support tool aimed at supporting SDM in community-based mental health services in Sweden.MethodsThree semi-structured focus group interviews were conducted with 22 adult users with mental illness. The transcribed interviews were analyzed using a directed content analysis. This method was used to develop an in-depth understanding of the decisional process as well as to validate and conceptually extend Elwyn et al.'s model of SDM.ResultsThe model Elwyn et al. have created for SDM in somatic care fits well for mental health services, both in terms of process and content. However, the results also suggest an extension of the model because decisions related to mental illness are often complex and involve a number of life domains. Issues related to social context and individual recovery point to the need for a preparation phase focused on establishing cooperation and mutual understanding as well as a clear follow-up phase that allows for feedback and adjustments to the decision-making process.Conclusions and Implications for PracticeThe current study contributes to a deeper understanding of decisional and information needs among users of community-based mental health services that may reduce barriers to participation in decision-making. The results also shed light on attitudinal, relationship-based, and cognitive factors that are important to consider in adapting SDM in the mental health system.

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

“…Most importantly, perhaps, focus group members referred to the importance of individuality and the need to treat it as part of the recovery journey where they are themselves an expert. Grim et al (2016) also found that service users felt it extremely important to prepare for meetings by considering what experiential knowledge to share at the meeting.…”

Psychiatric service staff perceptions of implementing a shared decision-making tool: a process evaluation study

“…In the research project, researchers, users, staff and service designers have worked together, a partnership which has generated knowledge regarding needs for support that can enable users to participate in their care (Grim, Rosenberg, Svedberg, & Schön, 2016) validated instruments for measuring SDM (Rosenberg, Svedberg, & Schön, 2015; Schön, Svedberg, & Rosenberg, 2015), as well as contributing to the development and validation of a digital interactive decision support tool, DST , for users in psychiatric care (Grim, Rosenberg, Svedberg, & Schön, 2017). The DST is based on the theoretical framework of SDM (Elwyn et al, 2012) and was adapted to the specific needs and preferences of users with mental health problems in a Swedish context (Grim et al, 2016). This article will therefore focus on the process of implementing the DST in six different psychiatric units in Sweden.…”

Perceptions of shared decision‐making in severe mental illness: An integrative review

“…Four studies found that more than 60% of participants reported that they had experienced a shared or active approach to decision‐making (Cosh et al, ; De las Cuevas, De Rivera et al, ; Liebherz et al, ; Nott et al, ). However, most studies indicated that SDM was not common (Dahlqvist Jönsson et al, , De las Cuevas & Peñate, , Ehrlich & Dannapfel, , Fukui et al, , Grim et al, , Liebherz, Tlach, Härter, & Dirmaier, , Matthias, Salyers, Rollins, & Frankel, , Salyers et al , Stacey et al, , Souraya et al, , Velligan et al, , Younas et al, ). An observational study showed that consumers felt more involved in the consultation than was observed (Verwijmeren & Grootens, ).…”

“…decision‐making capacity, independent living ability, function level, relevant knowledge and interpersonal skills), motivation (influenced by attitudes, trust, locus of control, support networks, previous experience of power, self‐efficacy, self‐confidence and concept of mental illness) and behaviour (such as honesty and openness, respect and politeness, giving feedback, active involvement, history of medication adherence, self‐harm, harm to others and substance use). For instance, many MHPs were concerned that consumers were unable to make decisions because of impaired insight (Ali et al, ; Chong et al, ; Grim et al, ; Shepherd et al, ; Younas et al, ). Consumers identified the necessity of having certain mental health information to engage in decision‐making (Chong et al, ; Dahlqvist Jönsson et al, ; Eliacin et al, , Wright‐Berryman & Cremering ).…”

“…Ten of included studies, various stakeholders identified time constraint as the main barrier to SDM (Ali et al, ; Bradley & Green, ; Chong et al, ; Dahlqvist Jönsson et al, ; Fisher et al, , ; Giacco et al, ; Hamann et al, ; Matthias et al, ; Small et al, ; Younas et al, ). The availability of mental health services, especially continuity of care and inter‐professional collaboration, was also cited as an important facilitator to SDM (Chong et al, , ; Ehrlich & Dannapfel, ; Grim et al, ).…”