| 1. |
- Bromark, Kristina, 1973-
(författare)
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The user as a key actor in user participation : Exploring knowledge production in personal social services with a participatory approach
- 2024
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The concept of user participation in social work is frequently debated. In Sweden, users are supposed to be active and involved in matters concerning them, a stance which is regulated in policy and law. The involvement of users in practice can be considered a form of knowledge production that can strengthen and develop users as well as the organizations. In practice, however, research shows that actual engagement, education or activation of users is difficult to attain and can be understood as a devaluation of user knowledge. The aim of this dissertation is to increase knowledge of how to understand and enhance the conditions for user participation in personal social services. To study this question, the dissertation focuses especially on young people’s participation in the context of out-of-home care. To explore user participation in personal social services, a participatory approach was applied. Data was gathered with young people and staff using participatory techniques as well as qualitative interviews. To explore challenges and possibilities with user participation, a future workshop was held with staff in personal social services (study I). This was followed by a co-design process in which staff, young people, and researchers collaborated on a support tool (study II), later to be implemented in practice (study III). The implementation process was explored by interviewing both staff and managers as well as a user representative (from a youth council). The co-design and implementation processes are problematized and discussed in the dissertation from a researcher’s perspective (study IV). The theoretical framework for understanding how users can be devalued as knowers is epistemic injustice. The assumption is that the role of a knower can shift, depending on social power and the structures in a context. The findings in this dissertation show that user participation is contingent on the distribution of power and responsibility and on perceptions of knowers and knowledge in practice. Although the general attitude towards user participation is positive, a reluctance in practice is revealed. It appears to be a challenge for staff to acknowledge the expertise of users, despite the fact that the users’ have the capacity and are willing to contribute with their knowledge. Work with user participation is identified as a team effort that requires actions at all levels of the organization as well as increased resources, leadership and a coherent understanding and agreement of the concept. A participatory approach to knowledge production with users is identified as a possible way to enhance epistemic justice and the inclusion of all relevant actors in activities and processes. The dimensions important to user participation can be acknowledged. For the dynamics to be maintained in a wider sense, however, an organizational infrastructure, with routines and methods, is necessary. To sustain epistemic justice in the implementation of user participation, a participatory culture with a solid and coherent understanding of user participation in practice is encouraged. A realization of user participation in practice requires a critical exploration of power and positions, systematic changes to infrastructure and transparency about roles and responsibility.
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| 2. |
- 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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| 3. |
- Schön, Ulla-Karin, 1970-
(författare)
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Kvinnors och mäns återhämtning från psykisk ohälsa
- 2009
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall aim with this thesis is to describe and analyze women’s and men’s recovery processes. More specifically, the aim is to determine what women and men with experience of mental illness describe as contributing to the personal recovery process. The point of departure for the studies was 30 in-depth interviews conducted with 15 men and 15 women. The selection of interview subjects was limited to individuals who had been treated in 24-hour psychiatric care and diagnosed as having schizophrenia, psychosis, a personality disorder, or a bipolar disorder. Four studies have been carried. Study 1 was a baseline article that examined what people in recovery from mental illness outline as facilitating factors to their recovery. The results that emerged from that study indicated areas for further analysis to condense the understanding of the recovery process. In study 2 the similarities and the differences in recovery described by women and men were examined. In Study 3 women’s and men’s meaning-making with reference to severe mental illness facilitate the recovery process were studied. The forth study explored how peer-support contribute to women’s and men’s recovery from mental illness. The results emphasize recovery from mental illness as a social process in which relationships play a key role in creating new identities beside the mental illness. For a majority of the participants meeting peers facilitated the recovery process. The participants described how peer support meant an end to isolation and became an arena for identification, connection, and being important to others. Throughout these recovery processes the impact of gender has been emphasized. The results from this thesis provide new insight into gender as an important factor in understanding the recovery processes. The results from the four studies emphasize the mental patient, the psychiatric interventions and the individual recovery strategies as being influenced by gender constructions.
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