| 11. |
- Erlandsson, Sara, 1979-, et al.
(författare)
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Perceptions of participation: how nursing home staff and managers perceive and strive for participation of older residents : [Brukardelaktighet på äldreboenden – vad vill personal och chefer uppnå?]
- 2023
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Ingår i: European Journal of Social Work. - : Informa UK Limited. - 1369-1457 .- 1468-2664. ; 26:5, s. 815-827
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Tidskriftsartikel (refereegranskat)abstract
- User participation is increasingly emphasised in policies guiding social services. However, translating policy into practice is fraught with difficulties. The staff’s approaches to user participation are crucial for the users’ opportunities to participate in decision-making, particularly for users with extensive care needs and reduced autonomy. The aim of this article is to explore how nursing home staff and managers perceive the participation of older residents and what the implications are for residents’ involvement in decision-making in everyday life. Interviews and future workshops were carried out with staff and managers in two Swedish nursing homes. The analysis identified differing and partly conflicting perceptions of user participation that have different implications for the residents’ opportunities to be involved in decisions. The staff’s and managers’ approaches to participation ranged from encouraging independent decision-making to excluding the residents from decisions, depending on the situation and the assessment of residents’ abilities. In addition, the analyses showed that perceptions of participation are intertwined with perceptions of good care and with the staff’s and managers’ understandings of their mission and responsibilities. The findings indicate that increasing user participation in nursing homes requires organisational policies that clarify what user participation is and strategies for implementation in daily practice.
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| 12. |
- Grim, Katarina, et al.
(författare)
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Development- and testing of a web-based decision support for users and health professionals in psychiatric services
- 2017
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Ingår i: ENMESH. ; , s. 48-48
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Konferensbidrag (refereegranskat)abstract
- Aim: Shared decision making (SDM) is considered a central component in a recovery-oriented practice. While decision aids are often regarded as an essential component for successfully implementing SDM they are still largely lacking within psychiatric services.The aim of this study was to utilize a participatory design in order 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 developmental- and usability processes are reported.Methods: The participatory design included 4 iterative cycles of development. Various qualitative methods for data collection were employed with potential end users who participated as informants in focus group interviews and individual interviews, and as usability and pilot testers.Results: Interviewing and testing identified usability problems which led to refinements making the subsequent prototypes increasingly user friendly and relevant, and which. In each phase of the development process, feedback from potential end-users provided indispensable guidance in the formation of a decision aid for strengthening the position of users by building on an interactive web based environment.Conclusions: The decision aid which resulted from this process has the potential to strengthen service users’ experience of self-efficacy and control as well as giving staff access to user knowledge and preferences. Studies employing participatory models focusing on usability have potential to significantly contribute to developing and implementing tools that reflect user perspectives.
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| 13. |
- Grim, Katarina, et al.
(författare)
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Development- and usability testing of a web-based decision support for users and health professionals in psychiatric services
- 2017
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Ingår i: Psychiatric rehabilitation journal. - Washington, DC : American Psychological Association (APA). - 1095-158X .- 1559-3126. ; 40:3, s. 293-302
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 14. |
- Grim, Katarina, et al.
(författare)
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Exploring psychiatric users’ decisional and information needs in Shared Decision Making in the light of Elwyn´s three-step model for Clinical practice
- 2015
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Ingår i: Closing the gap between research and policy in mental health. - Málaga : ENMESH. - 9788460827818 ; , s. 118-119
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Konferensbidrag (refereegranskat)abstract
- Introduction: Using medication and participating in psychosocial interventions are active processes that often involve complex decision-making. Shared decision making, SDM, provides a model for user and practitioner to cooperatively assess a treatment’s advantages and disadvantages. Decision aid tools adapted to the needs of users have the potential to restructure how people with mental illness and staff work together to arrive at shared decisions about the next steps in treatment or support.Aims: The objective of this study is to investigate decisional and information needs among users with mental illness as a pre-requisite for the design and development of a decision aid aimed at supporting user participation in SDM.Methods: Needs and preferences regarding information transfer in SDM were explored through semi-structured focus group interviews. Participants were adults with psychiatric diagnoses and experience of psychiatric services or close relatives to someone with a psychiatric illness.Qualitative content analysis was used to analyze the data. The transcriptions were initially analyzed in accordance with a conventional, inductive approach. A directed content analysis was then utilized, with Elwyn’s three step model for SDM as a theoretical framework from which to further operationalize the categories rendered in the first step of analysis.Results: The majority of the findings were easily integrated within Elwyn ́s categories. However, some elements which emerged in the data and which are worth noting were not encompassed within Elwyn’s model, such as the wish for information prior to the meeting regarding the time frame and agenda. The importance of heeding the prior knowledge of the user as valuable for the decision process and not solely checking it in order to correct possible misinformation was frequently expressed, as was the value of follow-ups.Conclusions: Even though Elwyn’s model is constructed as a pedagogic tool to be used by staff, while our focus is directed towards creating a tool for users, the application of the model upon our data was indeed helpful in rendering clearly defined and distinguishable codes from our categories. We therefore consider it to be a suitable model to continue to build upon in the development of a decision aid.
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| 15. |
- Grim, Katarina, 1971-
(författare)
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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
- 2019
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- 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.
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| 16. |
- Grim, Katarina, 1971-, et al.
(författare)
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Legitimizing user knowledge in mental health services : Epistemic (in)justice and barriers to knowledge integration
- 2022
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Ingår i: Frontiers in Psychiatry. - Lausanne : Frontiers Media S.A.. - 1664-0640. ; 13
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Tidskriftsartikel (refereegranskat)abstract
- Including the voices and knowledge of service users is essential for developing recovery-oriented and evidence-based mental health services. Recent studies have however, suggested that challenges remain to the legitimization of user knowledge in practice. To further explore such challenges, a co-production study was conducted by a team of researchers and representatives from user organizations in Sweden. The aim of the study was to explore the barriers and facilitators to the legitimacy of user knowledge, as a central factor in sustainably implementing user influence in mental health practice. A series of workshops, with representatives of mental health services and user organizations were conducted by the research team to explore these issues. The analysis built on the theoretical framework of epistemic injustice, and the underlying aspects, testimonial, hermeneutic and participation-based injustice, were utilized as a framework for a deductive analysis. Results suggest that this is a useful model for exploring the complex dynamics related to the legitimacy of user knowledge in mental health systems. The analysis suggests that the legitimacy of user knowledge is related to the representativeness of the knowledge base, the systematic formulation of this knowledge inapplicable methods, access to resources and positions within the mental health system and participation in the process of integrating this knowledge-base in mental health contexts. Legitimizing user knowledge in practice additionally challenges mental health systems to support readiness for change in working environments and to address the power and role issues that these changes involve. Copyright © 2022 Grim, Näslund, Allaskog, Andersson, Argentzell, Broström, Jenneteg, Jansson, Schön, Svedberg, Svensson, Wåhlstedt and Rosenberg.
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| 17. |
- Grim, Katarina, et al.
(författare)
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Shared decision-making in mental health care : a user perspective on decisional needs in community-based services
- 2016
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Ingår i: International Journal of Qualitative Studies on Health and Well-being. - Järfälla : Taylor & Francis. - 1748-2623 .- 1748-2631. ; 11
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 18. |
- Grim, Katarina, 1971-, et al.
(författare)
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The Legitimacy of User Knowledge in Decision-Making Processes in Mental Health Care : An Analysis of Epistemic Injustice
- 2019
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Ingår i: Journal of Psychosocial Rehabilitation and Mental Health. - : Springer Science and Business Media LLC. - 2198-9834 .- 2198-963X. ; 6, s. 157-173
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Tidskriftsartikel (refereegranskat)abstract
- The experience-based knowledge of users is considered to provide vital input in shared decision making (SDM). However, mental health service users frequently express having negative experiences from meetings with providers, which are of an epistemic nature (e.g., being ignored or not regarded as credible). This study aimed to explore the barriers involved in legitimizing user knowledge in decision-making processes. Interview data from service users and providers were viewed from a theoretic framework of epistemic injustice. Abductive content analysis was conducted on data collected during a project to develop and implement SDM in mental health services. In describing obstacles to legitimize user knowledge, service users highlighted relational issues: being dependent, often dismissed and choosing to edit their testimonies. Service providers typically described workflow issues, users’ insufficient decision- making competence and users’ vulnerability to stress factors. The findings suggest that greater epistemic justice might be achieved by a SDM process in which the service user is engaged as a full partner in collaboration in various activities related to their care.
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| 19. |
- Grimm, Katarina, et al.
(författare)
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Shared decision making in community mental health services : Supporting user needs for information and participation
- 2016
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Konferensbidrag (refereegranskat)abstract
- Objectives: Shared decision making (SDM) is a central component in a recovery-oriented practice. While decision aids are essential for implementing SDM, they are still lacking within psychiatric services. The aim of this study was to develop a user-generated, web-based decision aid to support shared decision making in Swedish mental health services.Methods: A decision aid was developed and tested in a preliminary study using a community-based participatory design. This digital tool was then included in a multifaceted intervention study which included staff training and an implementation study that included process and impact evaluation.Results: Models created for SDM in somatic care, fit well for mental health services. However, the results also suggest adaptations since decisions related to mental illness are often complex and involve multiple life domains. Issues related to social context and individual recovery point to a focus on establishing cooperation as well as follow-up over time.Conclusions: The study contributes to an understanding of decisional and information needs, as well as relationship-based and cognitive factors important to consider in adapting SDM in the community mental health system. The decision aid which resulted can strengthen service users’ experience of self-efficacy and control as well as giving staff access to user knowledge and preferences.
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| 20. |
- Hultman, Lill, et al.
(författare)
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Exploring the Sharing and Legitimacy of Experience-Based Knowledge of Living with Acquired Brain Injury in Two Practice Communities
- 2023
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Ingår i: Health & Social Care in the Community. - : Hindawi Publishing Corporation. - 0966-0410 .- 1365-2524. ; 2023
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Tidskriftsartikel (refereegranskat)abstract
- Background. Involving people with acquired brain injury in service development has the potential to improve service and give experience-based knowledge legitimacy. The objective of this study was to explore experiences of sharing experience-based knowledge of living with acquired brain injury with others, with a particular focus on the conditions for sharing and learning, and the legitimacy of experience-based knowledge. Materials and Methods. Using a single case study design, the processes in two groups that were part of a Swedish supportive network for people with acquired brain injury were explored. One group consisted mainly of people with acquired brain injury who authored a blog and the other group consisted of healthcare staff who produced educational material with the involvement of a person with own experience of acquired brain injury. The data consisted of forty-one collective blogs, fifteen semistructured individual interviews, and ten observations from meetings. The data were analysed by utilizing the community of practice framework and the concepts of legitimate peripheral participation and epistemic injustice. Results. The findings showed that both groups developed learning processes with a focus on everyday rehabilitation as a joint enterprise. Mutual engagement developed from doing activities together and legitimacy in the groups came from engagement in these activities. In the education group, the ambition to involve people with own experience of acquired brain injury was never realized in practice. Hence, experience-based knowledge of living with acquired brain injury never got legitimacy in the group. Conclusions. We conclude that integrating experience-based knowledge from people with own experience of acquired brain injury demands careful and deliberate planning with specific consideration to existing power asymmetries between healthcare professionals and people with own experience. Mitigating epistemic injustice and gaining legitimacy for such knowledge require that people with experience of living with acquired brain injury are recognized as knowledge producers.
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