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Shared decision-making in mental health care: a user perspective on decisional needs in community-based services
Dalarna University, School of Education, Health and Social Studies, Care Sciences.ORCID iD: 0000-0002-7236-0836
Dalarna University, School of Education, Health and Social Studies, Social Work.ORCID iD: 0000-0002-3866-5636
2016 (English)In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 11, article id 30563Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Shared 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.

OBJECTIVE: The 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.

METHODS: Three 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.

RESULTS: The 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 PRACTICE: The 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.

Place, publisher, year, edition, pages
2016. Vol. 11, article id 30563
Keywords [en]
Shared decision-making, information needs, mental health care, directed content analysis
National Category
Social Work
Research subject
Health and Welfare
Identifiers
URN: urn:nbn:se:du-21478DOI: 10.3402/qhw.v11.30563ISI: 000396163500001PubMedID: 27167556OAI: oai:DiVA.org:du-21478DiVA, id: diva2:929886
Available from: 2016-05-20 Created: 2016-05-20 Last updated: 2019-10-30Bibliographically approved
In thesis
1. Legitimizing the knowledge of mental health service users in shared decision making: Promoting participation through a web-based decision support tool
Open this publication in new window or tab >>Legitimizing the knowledge of mental health service users in shared decision making: Promoting participation through a web-based decision support tool
2019 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Aim: The overall aim of this thesis was to explore the manner in which user knowledge and user perspectives can be included and supported in shared decision making (SDM) in mental health services.

The thesis consists of four studies. Study I explored what needs service users identify to participate in deliberative processes and decision making in their care. Study II examined how a decision support tool (DST) for SDM can be designed to enhance service users’ ability to have active and meaningful roles in SDM. Study III investigated barriers and facilitators associated with the implementation of a web-based DST designed to provide a concrete structure to support SDM. In study IV, a theoretical analysis was performed to elucidate the barriers associated with user knowledge being expressed and legitimized in decision-making processes.

Methods: A key feature of the project involved a process of exploring decisional and informational needs and of developing, testing and implementing a DST for SDM. Qualitative data have been collected through focus group and individual interviews with service users and service providers, usability testing with service users and checklists.

Findings: The findings show a number of characteristics specific to the mental health service context that need to be considered when developing support for SDM. Decisions were often complex and found to encompass a number of life domains. Issues related to social context and individual recovery highlighted the necessity to include the knowledge perspectives of service users throughout decision processes. In response, phases for preparation and follow-up was emphasized in the DST. The results indicate that supportive structures are required for service users to express their knowledge perspectives and for providers to include them in their decision-making. Moreover, existing barriers related to organizational structures and to power differentials need to be addressed.       

Conclusions and implications: A DST specifically designed for the mental health context, that methodically invites service users to participate in each phase of the decision-making process might function as a guiding structure to validate service users as knowledgeable agents.

Place, publisher, year, edition, pages
Falun: Dalarna University, 2019
Series
Dalarna Doctoral Dissertations ; 10
Keywords
User knowledge, SDM, Shared decision making, User involvement, User participation, Mental health services, Psychiatry
National Category
Psychiatry Social Work Health Sciences
Research subject
Health and Welfare
Identifiers
urn:nbn:se:du-30246 (URN)978-91-88679-01-7 (ISBN)
Public defence
2019-09-13, FÖ4, Falun, 13:00 (English)
Opponent
Supervisors
Available from: 2019-06-24 Created: 2019-06-14 Last updated: 2020-01-10Bibliographically approved

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Grim, KatarinaSchön, Ulla-Karin

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