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Markström, U., Näslund, H., Schön, U.-K., Rosenberg, D., Bejerholm, U., Gustavsson, A., . . . Svedberg, P. (2023). Developing sustainable service user involvement practices in mental health services in Sweden: The "Userinvolve" research program protocol. Frontiers in Psychiatry, 14, Article ID 1282700.
Open this publication in new window or tab >>Developing sustainable service user involvement practices in mental health services in Sweden: The "Userinvolve" research program protocol
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2023 (English)In: Frontiers in Psychiatry, E-ISSN 1664-0640, Vol. 14, article id 1282700Article in journal (Refereed) Published
Abstract [en]

Background: The purpose of this paper is to outline the protocol for the research program “UserInvolve,” with the aim of developing sustainable, service user involvement practices in mental health services in Sweden.

Methods: This protocol outlines the knowledge gap and aim of the UserInvolve-program. It further provides an overview of the research infrastructure, with specific focus on the organization and management of the program as well as the design of the six underlying research projects. These six research projects form the core of the UserInvolve-program and will be carried out during a six-year period (2022–2027). The projects are focused on examining articulations of experiential knowledge in user collectives, on four specific user involvement interventions (shared decision-making, peer support, user-focused monitoring, and systemic involvement methods) and on developing theory and method on co-production in mental health research and practice.

Results or conclusion: The knowledge gained through the co-production approach will be disseminated throughout the program years, targeting service users, welfare actors and the research community. Based on these research activities, our impact goals relate to strengthening the legitimacy of and methods for co-production in the mental health research and practice field.

Place, publisher, year, edition, pages
Frontiers Media S.A., 2023
Keywords
co-production, involvement, mental health, protocol, research program, service users
National Category
Social Work
Research subject
Psychiatry
Identifiers
urn:nbn:se:umu:diva-215780 (URN)10.3389/fpsyt.2023.1282700 (DOI)37900294 (PubMedID)2-s2.0-85174892656 (Scopus ID)
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, 2021–01427Forte, Swedish Research Council for Health, Working Life and Welfare, 2020–01328
Available from: 2023-10-25 Created: 2023-10-25 Last updated: 2024-01-17Bibliographically approved
Ineland, J. & Nouf-Latif, F. (2023). Epistemic citizenship under structural siege: a meta-analysis drawing on 544 voices of service user experiences in Nordic mental health services. Frontiers in Psychiatry, 14, Article ID 1156835.
Open this publication in new window or tab >>Epistemic citizenship under structural siege: a meta-analysis drawing on 544 voices of service user experiences in Nordic mental health services
2023 (English)In: Frontiers in Psychiatry, E-ISSN 1664-0640, Vol. 14, article id 1156835Article in journal (Refereed) Published
Abstract [en]

This paper presents a meta-analysis, drawing exclusively on qualitative research (n = 38), which contributes to findings on mental health service user experiences of received provisions and/or encounters in contemporary social and mental health services in the Nordic countries. The main objective is to identify facilitators of, and barriers to, various notions of service user involvement. Our findings provide empirical evidence regarding service users’ experiences of participation in their encounters with mental health services. We identified two overarching themes, professional relations and the regulative framework and current rule and norm system, in the reviewed literature concerning facilitators and hindrances of user involvement in mental health services. By including the interrelated policy concept of ‘active citizenship’ and theoretical concept of ‘epistemic (in)justice’ in the analyses, the results provide foundations for broader exploration and problematization of the policy ideals of what we call ‘epistemic citizenship’ and contemporary practices in Nordic mental health organizations. Our conclusions include suggestions that linking micro-level experiences to organizational macro-level circumstances opens up avenues for further research on service user involvement.

Place, publisher, year, edition, pages
Frontiers Media S.A., 2023
Keywords
Mental health organizations, epistemic injustice, meta-analysis, Nordic countries, service user involvement, service user experiences, active citizenship
National Category
Social Work
Identifiers
urn:nbn:se:umu:diva-209001 (URN)10.3389/fpsyt.2023.1156835 (DOI)001008508900001 ()37333919 (PubMedID)2-s2.0-85162093271 (Scopus ID)
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, 2021-01427
Note

Open access funding provided by Umeå University. This work was supported by the Swedish Research Council for Health, Working Life and Welfare under (Grant number: 2021-01427) and by the Department of Social Work, Umeå university

Available from: 2023-06-02 Created: 2023-06-02 Last updated: 2024-01-17Bibliographically approved
Ineland, J. & Nouf-Latif, F. (2023). User involvement and Client-near practices in Social- and Mental Health Services: Challenges and opportunities for further developments in the Nordic countries. In: : . Paper presented at FORSA 2023 Conference – Social work in changing times- challenges and new opportunities. Bodø, Norway, June 14-16, 2023.
Open this publication in new window or tab >>User involvement and Client-near practices in Social- and Mental Health Services: Challenges and opportunities for further developments in the Nordic countries
2023 (English)Conference paper, Oral presentation only (Refereed)
Abstract [en]

It is common knowledge In the Nordic countries, that user involvement is hailed as part of a larger societal development for democratizing and improving social work practices as well as challenging the history of paternalism against people in need of mental health services. The reasons for user-involving practices are abundant; it corresponds to democratic ideals, for redistributing power in professional relations, making welfare services more efficient, and making professional relations more reciprocal, etc. However, less is known about ways in which to implement inclusive practices and how to assess and value the effects and outcomes of different programs and initiatives with user-involving ambitions. 

This presentation provides fresh findings on these issues in the Nordic countries, drawing from empirical findings in a compilation of knowledge (published in 2022) and a meta-analysis (published in 2023). In detail, the presentation provides answers to Nordic experiences of a) methods used to study user involvement, b) effects and outcomes of user-involving strategies, and c) how they relate to the overarching ambitions of high-quality services in mental health organizations in the Nordic countries. The presentation also provides important insights into factors that differentiate positive/promoting and negative/restrictive user experiences of participation, involvement, and prerequisites for being seen as an epistemic citizen. Finally, the presentation suggests different ways in which these results are important to acknowledge for further empirical research and development of user involvement in the Nordic countries. 

National Category
Social Sciences
Identifiers
urn:nbn:se:umu:diva-215257 (URN)
Conference
FORSA 2023 Conference – Social work in changing times- challenges and new opportunities. Bodø, Norway, June 14-16, 2023
Available from: 2023-10-13 Created: 2023-10-13 Last updated: 2023-10-13Bibliographically approved
Nouf-Latif, F. (2021). Ett meningsfullt liv med arbete?: Högfungerande individer med autism mellan funktionshinder- och arbetsmarknadspolitik. (Doctoral dissertation). Umeå: Umeå universitet
Open this publication in new window or tab >>Ett meningsfullt liv med arbete?: Högfungerande individer med autism mellan funktionshinder- och arbetsmarknadspolitik
2021 (Swedish)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The aim of this thesis is to study notions of employment among high-functioning individuals with autism (HiA) and their experiences of vocational rehabilitation or work-preparatory programs and to analyze how these experiences reflect upon the labor market policy’s and disability policy’s common shared goal of supporting individuals towards a socially included life with meaningful work. This study was conducted through ethnographic fieldwork in a private company (VRP) that operated as a service provider for the Employment Service Agency, and a Swedish residential folk high school (FHS). Both of the organizations provided work-preparative programs specifically for HiA. Three of the four sub-studies are based on qualitative data consisting of individual interviews, focus group interviews, and field notes from participant observations. The fourth sub-study represents an analysis of legal documents targeting employment and health in disability policy.

The results in sub-study 1 illustrate that the narratives provided by HiA strongly address the subject position of the citizen-worker. Their suggested ideal jobs were deprioritized in favor of more available jobs on the market. The central incentives to pursue either the ideal or second-option jobs can be identified as the personal perception of attaining a sense of meaningfulness through work, which was depicted as central to the sense of self-fulfillment, identity, and wellbeing. As the second sub-study shows, the fulfillment of personal ambitions and ideas of meaningful work was not met in the case of the VRP participants. Social inclusion was not experienced as a result of the received service provisions. The results rather indicate a manifestation of the normalization principle’s basic attributes with regard to spatial integration in work-like activities (disability-worker contexts) rather than social inclusion on an equal basis with others (citizen-worker contexts). The third sub-study then showcases how social work practices were produced at the intersection of clients’ needs and personas and the organizations’ conditional premises in FHS and VRP. The analysis resulted in the conclusion that a person-centered approach was lacking in the VRP whereas highly present in the FHS. The fourth and last sub-study focuses on how Swedish disability policy is constructed to meet the objectives of the CRPD regarding active citizenship that is associated with health (engagements in private life, work-life, community life, social/family life, etc.) and thereby full participation on an equal basis with others. The results suggest that the policy area of employment, implicitly and explicitly, overshadows the policy area of health and intimately associated life-areas that are important to wellbeing.

The conclusions are that FHS and ARP both reflect a strong dedication to provide services that aim towards preparing individuals for work. However, a more holistic approach in professional practices must be practiced in VRPs if a socially included life with a sustainable work situation for HiA is strived for. With regard to a socially included life with meaningful work, the above must be accounted for in addition to individuals’ personal perceptions and notions of meaningfulness.

Place, publisher, year, edition, pages
Umeå: Umeå universitet, 2021. p. 131
Series
Studier i socialt arbete vid Umeå universitet : avhandlings- och skriftserie, ISSN 0283-300X ; 98
Keywords
Disability policy, ethnographic fieldwork, high-functioning individuals with autism, labour market policy, meaningful work, social inclusion, welfare services.
National Category
Social Sciences
Identifiers
urn:nbn:se:umu:diva-183208 (URN)978-91-7855-517-8 (ISBN)978-91-7855-518-5 (ISBN)
Public defence
2021-06-11, Triple Helix, Universitetsledningshuset, Umeå, 10:00 (Swedish)
Opponent
Supervisors
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, 2012-1111
Note

Serienummer saknas i publikationen. 

Available from: 2021-05-21 Created: 2021-05-18 Last updated: 2021-05-21Bibliographically approved
Nouf-Latif, F., Markström, U. & Andersson, K. (2020). Cherry Picking Disability Rights?: Swedish Disability Policy on Employment, Health and Participation. Nordic Journal of Working Life Studies, 10(3), 3-22
Open this publication in new window or tab >>Cherry Picking Disability Rights?: Swedish Disability Policy on Employment, Health and Participation
2020 (English)In: Nordic Journal of Working Life Studies, E-ISSN 2245-0157, Vol. 10, no 3, p. 3-22Article in journal (Refereed) Published
Abstract [en]

The aim of this article is to broaden the understanding of how Swedish disability policies are constructed to meet the objectives of the ratified UN Convention on the Rights of Persons with Disabilities (CRPD) regarding active citizenship and full participation on an equal basis with others. The study examines two policy domains: health and employment. Recently issued legal documents are analyzed using the approach of directed content analysis and the theories of ‘social risk’ and ‘governance’. The results suggest that the policy area of employment implicitly and explicitly overshadows the policy area of health and related rights accounted for in the CRPD. A more nuanced perspective in disability policies concerning employment in relation to active citizenry and full participation is required, accompanied by social policy schemes that encompass the perspective of the CRPD as a whole in all support-to-work services, instead of the limited focus of finding full-time employment.

Place, publisher, year, edition, pages
VIA University College, Denmark, 2020
National Category
Social Sciences
Identifiers
urn:nbn:se:umu:diva-175188 (URN)10.18291/njwls.v10i3.121844 (DOI)
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, 2012-1111
Available from: 2020-09-18 Created: 2020-09-18 Last updated: 2024-01-17Bibliographically approved
Nouf-Latif, F., Andersson, K. & Markström, U. (2019). Encouraging real or make-believe citizen-workers?: Narratives of self-realization versus disabling support-to-work contexts by individuals with High Functioning Autism. Alter;European Journal of Disability Research ;Journal Europeen de Recherche Sur le Handicap, 13(2), 126-140
Open this publication in new window or tab >>Encouraging real or make-believe citizen-workers?: Narratives of self-realization versus disabling support-to-work contexts by individuals with High Functioning Autism
2019 (English)In: Alter;European Journal of Disability Research ;Journal Europeen de Recherche Sur le Handicap, ISSN 1875-0672, E-ISSN 1875-0680, Vol. 13, no 2, p. 126-140Article in journal (Refereed) Published
Abstract [en]

Sweden, like other Western countries, has a disability legislation that coexists with the Active Labour Market Policies. ALMP address a discourse emphasizing the importance of the able and productive ‘citizen-worker’, who is expected to crafthis/her own success through meaningful personal goals and ambitions. This discourse also impacts disability groups who are actualized for support-to-work interventions, such as people with high-functioning autism (HFA). The objective of this paper is to analyse how narratives targeting ambitions and self-realisation in work life are expressed by individuals with HFA in relation to the citizen-worker discourse. This ethnographic study comprises 26 qualitative interview narratives by 11 participants with HFA. Findings indicate that the participants have developed a strong citizen-worker identity. The will is an essential point of gravity, expressed through notions of individual meaningfulness and ambitions of being perceived as resources in any vocational context. Barriers to these ambitions are experienced as personally counteractive support-to-work practices. These results suggest that disability legislation and policies are caught in a mantra of stagnating normalisation, resulting in disability-worker interventions that are incompatible with meanings emphasized in the citizen-worker discourse, which is the new ‘normal’ of today.

Abstract [fr]

À l’instar d’autres pays occidentaux, la Suède a une législation sur le handicap qui coexiste avec les politiques d’activation sur le marché du travail. Le discours de ces dernières met l’accent sur le « citoyen-travailleur », compétent et productif, dont on attend qu’il réussisse en réalisant ses ambitions et des objectifs qui leurs soient personnels et auxquels ils attachent du sens. Ce discours touche aussi les groupes de personnes handicapées qui bénéficient d’aide à l’emploi, par exemple les personnes atteintes d’autisme de haut niveau de fonctionnement. En lien avec ce discours sur le citoyen-travailleur, l’article propose d’analyser comment ces personnes expriment leurs ambitions et rendent compte de la réalisation d’elles-mêmes dans la vie professionnelle. Cette étude ethnographique est constituée de 26 entretiens qualitatifs, menés avec 11 participants atteints d’autisme de haut niveau de fonctionnement. Les résultats montrent que les participants se sont approprié une forte identité de citoyen-travailleurs. La volonté joue un rôle central, elle s’exprime via les notions de sens personnel et d’ambition à être considéré comme une ressource, quel que soit le contexte professionnel. Les pratiques qui s’opposent aux mesures d’aide au travail sont perçues comme des obstacles à la réalisation de ces ambitions. Nos résultats suggèrent que la législation et les politiques du handicap restent prises dans l’éternel mantra de la normalisation, ce qui aboutit à des interventions auprès des travailleurs handicapés difficilement compatibles avec le sens valorisé par le discours du citoyen-travailleur, nouveau standard contemporain du « normal ».

Place, publisher, year, edition, pages
Elsevier, 2019
Keywords
Citizen-worker, High functioning autism, Inclusion, Self-realisation, Vocational rehabilitation, Work
National Category
Social Work
Identifiers
urn:nbn:se:umu:diva-157714 (URN)10.1016/j.alter.2019.03.001 (DOI)000467422900005 ()2-s2.0-85063028976 (Scopus ID)
Note

French title: Encourager des citoyens-travailleurs réels ou imaginaires ? Accomplissement de soi et aide à l’emploi dans les récits de personnes atteintes d’autisme de haut niveau de fonctionnement

Available from: 2019-04-01 Created: 2019-04-01 Last updated: 2023-03-24Bibliographically approved
Nouf-Latif, F., Bertilsdotter-Rosqvist, H. & Markström, U. (2019). Narratives of ideal and second-option jobs among young adults with high functioning autism. Nordic Social Work Research, 9(2), 104-117
Open this publication in new window or tab >>Narratives of ideal and second-option jobs among young adults with high functioning autism
2019 (English)In: Nordic Social Work Research, ISSN 2156-857X, E-ISSN 2156-8588, Vol. 9, no 2, p. 104-117Article in journal (Refereed) Published
Abstract [en]

The meaning of work is different for people in different social groups, and research exploring perceptions of meaningful work among adults with high-functioning autism (HFA) is scarce. The aim of this paper is to explore how narratives of satisfactory and meaningful future jobs are portrayed relative to two alternative discourses of work – the 'obligation to work' discourse, and the 'disability rights' discourse. This group of individuals are high functioning on the one hand, while at the same time holding legally-mandated special disability rights, an exploration of how this group reason about work-life and satisfactory jobs is particularly interesting. Through ethnographic fieldwork in Sweden, seven young adults with HFA were followed, and 17 interviews were conducted. The main findings and conclusions are that jobs that are individually assessed to be ‘ideal’, are put aside in favor of jobs that are more compatible with general labor market demands, as long as enjoyment and meaningfulness can still be experienced.

Place, publisher, year, edition, pages
Routledge, 2019
Keywords
Citizen-worker, high functioning autism, meaningful work, vocational support, work-life
National Category
Social Work
Identifiers
urn:nbn:se:umu:diva-150586 (URN)10.1080/2156857X.2018.1484385 (DOI)2-s2.0-85091426175 (Scopus ID)
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, 2012-1111
Available from: 2018-08-13 Created: 2018-08-13 Last updated: 2023-03-23Bibliographically approved
Nouf-Latif, F.Exploring Person-centered Service Provisions: High-Functioning Adults with Autism in contemporary Public and Corporate Social Work.
Open this publication in new window or tab >>Exploring Person-centered Service Provisions: High-Functioning Adults with Autism in contemporary Public and Corporate Social Work
(English)Manuscript (preprint) (Other academic)
Abstract [en]

Changes in the management of human service organizations impact national service provisions for people with disabilities in western societies, where service provisions are given in a scattered field of social work arenas. High-functioning adults with autism (HIA) represent a disability group that is actualized for different forms of work life preparative services. This ethnographic study was conducted in two different service provisional contexts in Sweden, a folk high school program (FHS) and a vocational rehabilitation program (VRP). The main focus in this paper is an exploration of how these diagnosis-specific provisional contexts and professional approaches adhere to key components in social work, such as person-centered services and notions of equity and empowerment, and how these approaches are experienced by program participants. Content analysis on field notes, interview narratives, and a complementary Institutional Logics perspective result in the conclusion of an adverse consumer perspective in the VRP and highly present person-centeredness in the FHS, both of which are reflected in the experiences of the participants.

National Category
Social Sciences
Identifiers
urn:nbn:se:umu:diva-183169 (URN)
Available from: 2021-05-18 Created: 2021-05-18 Last updated: 2021-05-18
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0002-8670-2796

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