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Legitimizing the knowledge of mental health service users in shared decision making: Promoting participation through a web-based decision support tool
Dalarna University, School of Education, Health and Social Studies, Caring Science.ORCID iD: 0000-0002-7236-0836
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 in Health Sciences ; 1
Keywords [en]
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: urn:nbn:se:du-30246ISBN: 978-91-88679-01-7 (print)OAI: oai:DiVA.org:du-30246DiVA, id: diva2:1325127
Public defence
2019-09-13, FÖ4, Falun, 13:00 (English)
Opponent
Supervisors
Available from: 2019-06-24 Created: 2019-06-14 Last updated: 2019-08-15Bibliographically approved
List of papers
1. Shared decision-making in mental health care: a user perspective on decisional needs in community-based services
Open this publication in new window or tab >>Shared decision-making in mental health care: a user perspective on decisional needs in community-based services
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.

Keywords
Shared decision-making, information needs, mental health care, directed content analysis
National Category
Social Work
Research subject
Health and Welfare
Identifiers
urn:nbn:se:du-21478 (URN)10.3402/qhw.v11.30563 (DOI)000396163500001 ()27167556 (PubMedID)
Available from: 2016-05-20 Created: 2016-05-20 Last updated: 2019-08-15Bibliographically approved
2. Development and usability testing of a web-based decision support for users and health professionals in psychiatric services
Open this publication in new window or tab >>Development and usability testing of a web-based decision support for users and health professionals in psychiatric services
2017 (English)In: Psychiatric rehabilitation journal, ISSN 1095-158X, E-ISSN 1559-3126, Vol. 40, no 3, p. 293-302Article in journal (Refereed) Published
Abstract [en]

OBJECTIVE: Shared decision making (SMD) related to treatment and rehabilitation is considered a central component in recovery-oriented practice. Although decision aids are regarded as an essential component for successfully implementing SDM, these aids are often lacking within psychiatric services. The aim of this study was to use a participatory design to facilitate the development of a user-generated, web-based decision aid for individuals receiving psychiatric services. The results of this effort as well as the lessons learned during the development and usability processes are reported.

METHOD: The participatory design included 4 iterative cycles of development. Various qualitative methods for data collection were used with potential end users participating as informants in focus group and individual interviews and as usability and pilot testers.

RESULTS: Interviewing and testing identified usability problems that then led to refinements and making the subsequent prototypes increasingly user-friendly and relevant. In each phase of the process, feedback from potential end-users provided guidance in developing the formation of the web-based decision aid that strengthens the position of users by integrating access to information regarding alternative supports, interactivity between staff and users, and user preferences as a continual focus in the tool.

CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: This web-based decision aid has the potential to strengthen service users' experience of self-efficacy and control as well as provide staff access to user knowledge and preferences. Studies employing participatory models focusing on usability have potential to significantly contribute to the development and implementation of tools that reflect user perspectives. (PsycINFO Database Record

National Category
Health Sciences
Research subject
Health and Welfare
Identifiers
urn:nbn:se:du-27766 (URN)10.1037/prj0000278 (DOI)28737415 (PubMedID)
Available from: 2018-06-05 Created: 2018-06-05 Last updated: 2019-08-15Bibliographically approved
3. Psychiatric service staff perceptions of implementing a shared decision-making tool: A process evaluation study
Open this publication in new window or tab >>Psychiatric service staff perceptions of implementing a shared decision-making tool: A process evaluation study
2018 (English)In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 13, no 1Article in journal (Refereed) Published
Abstract [en]

PURPOSE:

Shared decision making, SDM, in psychiatric services, supports users to experience a greater sense of involvement in treatment, self-efficacy, autonomy and reduced coercion. Decision tools adapted to the needs of users have the potential to support SDM and restructure how users and staff work together to arrive at shared decisions. The aim of this study was to describe and analyse the implementation process of an SDM intervention for users of psychiatric services in Sweden.

METHOD:

The implementation was studied through a process evaluation utilizing both quantitative and qualitative methods. In designing the process evaluation for the intervention, three evaluation components were emphasized: contextual factors, implementation issues and mechanisms of impact.

RESULTS:

The study addresses critical implementation issues related to decision-making authority, the perceived decision-making ability of users and the readiness of the service to increase influence and participation. It also emphasizes the importance of facilitation, as well as suggesting contextual adaptations that may be relevant for the local organizations.

CONCLUSION:

The results indicate that staff perceived the decision support tool as user-friendly and useful in supporting participation in decision-making, and suggest that such concrete supports to participation can be a factor in implementation if adequate attention is paid to organizational contexts and structures.

Keywords
Shared decision making; decision support tool; implementation; process evaluation; psychiatric services
National Category
Health Sciences
Research subject
Health and Welfare
Identifiers
urn:nbn:se:du-26828 (URN)10.1080/17482631.2017.1421352 (DOI)000424831900001 ()29405889 (PubMedID)2-s2.0-85045243442 (Scopus ID)
Available from: 2017-12-18 Created: 2017-12-18 Last updated: 2019-08-15Bibliographically approved
4. The legitimacy of user knowledge in decision-making processes in mental health care: An analysis of epistemic injustice
Open this publication in new window or tab >>The legitimacy of user knowledge in decision-making processes in mental health care: An analysis of epistemic injustice
2019 (English)In: Journal of Psychosocial Rehabilitation and Mental Health, ISSN 2198-9834Article in journal (Refereed) Accepted
Place, publisher, year, edition, pages
Springer, 2019
National Category
Health Sciences
Research subject
Health and Welfare
Identifiers
urn:nbn:se:du-30244 (URN)10.1007/s40737-019-00145-9 (DOI)
Note

Avtal Springer Compact

Available from: 2019-06-14 Created: 2019-06-14 Last updated: 2019-08-15Bibliographically approved

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