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Bertilsdotter Rosqvist, H., Hultman, L., Österborg Wiklund, S., Nygren, A., Storm, P. & Sandberg, G. (2025). Naming ourselves, becoming neurodivergent scholars. Disability & Society, 40(1), 128-147
Open this publication in new window or tab >>Naming ourselves, becoming neurodivergent scholars
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2025 (English)In: Disability & Society, ISSN 0968-7599, E-ISSN 1360-0508, Vol. 40, no 1, p. 128-147Article in journal (Refereed) Published
Abstract [en]

In this paper we seek to restory what has been storied as “the problem of ADHD”. Informed by calls for a critical ADHD studies, we explore the possibilities of ADHD collective autoethnographic storytelling. Together we (en)counter narratives of ADHD. Within our collective writing space, from our ADHD/AuDHD bodyminds, we seek to re-story our ADHD/AuDHD. We map a field of critical ADHD research within social sciences and point out problems of outsider perspectives, stressing a need for insider perspectives. Our data consist of collective authoethnographic writings about ADHD. From the data we have explored our experiences of (En)Countering ADHD narratives, and a transition process which we refer to as from ”broken NT-scholars” to neurodivergent scholars, stressing the importance of ADHD:ers as independent as well as collective agents, and ADHD as epistemological standpoint within research.

Place, publisher, year, edition, pages
Routledge, 2025
Keywords
ADHD, collective autoethnography, Critical ADHD Studies, diagnosis, epistemological standpoint, stigma
National Category
Sociology
Identifiers
urn:nbn:se:sh:diva-52597 (URN)10.1080/09687599.2023.2271155 (DOI)001087872200001 ()2-s2.0-85174588603 (Scopus ID)
Available from: 2023-11-01 Created: 2023-11-01 Last updated: 2025-01-13Bibliographically approved
Tistad, M., Hultman, L., Wohlin Wottrich, A. & von Koch, L. (2025). The Lived Experience of Participating in Online Peer-To-Peer Groups After Acquired Brain Injury: Phenomenological Study. Journal of Medical Internet Research, 27, e67658, Article ID e67658.
Open this publication in new window or tab >>The Lived Experience of Participating in Online Peer-To-Peer Groups After Acquired Brain Injury: Phenomenological Study
2025 (English)In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 27, p. e67658-, article id e67658Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Stroke and other acquired brain injuries (ABIs) can present challenging experiences for individuals, both in recovery of functions affected by visible or invisible impairments and in learning to live with the new situation. Research has shown that sharing experiences face-to-face in peer groups can be beneficial during recovery. However, there is limited knowledge about the lived experiences of people with ABI who participate in online peer-to-peer groups.

OBJECTIVE: The aim of our study was to explore the lived experiences of participating in online peer-to-peer groups for people with ABI, where participants themselves set the agenda.

METHODS: Members of 2 Facebook groups (FBGs) for people with ABI were invited to participate in this study, and 20 individuals were included (14 women and 6 men; age range 24-74 years). One FBG focused on stroke and the other on fatigue caused by ABI. One group was private, and the other group was public. Data were collected through semistructured interviews, in which participants were encouraged to describe their experiences of engaging in FBGs in detail. The interviews were conducted over telephone or Zoom and digitally recorded. The audio recordings were then transcribed verbatim, resulting in 224 pages of text, and analyzed using the empirical phenomenological psychological method.

RESULTS: The analysis presented a common meaning structure with 1 main characteristic that is, "validating self," common for all 20 participants, and 3 subcharacteristics, that is, "learning-having one's own experiences confirmed," "adjusting self-building competence and self-compassion," and "supporting others-becoming a valued lived-experience expert/authority." Together, the subcharacteristics reflected a process of validating self from newcomer to lived-experience expert or authority. In this process, members of FBGs moved from being newcomers with pronounced needs for support and to learn and to have their experiences confirmed by others with similar experiences. Thus, participants were building competence and developing self-compassion. Gradually, they assumed the role of advisors, mentors, or coaches, acknowledging their experiences and competence as valuable to others, thereby validating themselves as compassionate lived-experience experts or authorities in supporting others.

CONCLUSIONS: Participation in online peer-to-peer groups can offer unique opportunities for individuals with ABI to validate self through processes that involve learning, developing self-compassion and compassion for others, and offering support to others with similar experiences. Given that rehabilitation after an ABI is often of limited duration and that positive experiences can be achieved over time through involvement in digital peer-to-peer support, health care professionals should assist patients by providing information and directing them to digital networks for people with ABI. However, when recommending the use of online peer-to-peer support, impairments and insufficient digital competence that may complicate or prevent the use of social media should be assessed and support provided when relevant.

Place, publisher, year, edition, pages
JMIR Publications, 2025
Keywords
compassion, experiential knowledge, fatigue, interview, meaning, normalization, self-compassion, social media, stroke
National Category
Health Sciences Psychology
Identifiers
urn:nbn:se:sh:diva-56865 (URN)10.2196/67658 (DOI)40131323 (PubMedID)
Available from: 2025-04-02 Created: 2025-04-02 Last updated: 2025-04-02Bibliographically approved
Bertilsdotter Rosqvist, H., Hultman, L. & Hallqvist, J. (2023). Energy management Experiences of young autistic adults in work, leisure activities and relationships. Alter;European Journal of Disability Research ;Journal Europeen de Recherche Sur le Handicap, 17(3), 25-38
Open this publication in new window or tab >>Energy management Experiences of young autistic adults in work, leisure activities and relationships
2023 (English)In: Alter;European Journal of Disability Research ;Journal Europeen de Recherche Sur le Handicap, ISSN 1875-0672, E-ISSN 1875-0680, Vol. 17, no 3, p. 25-38Article in journal (Refereed) Published
Abstract [en]

This paper explores young autistic adults' energy management in relation to work, leisure activities and social relationships. Energy management strategies serve as different ways for the young autistic adults to sustain their energy balance by trying to understand what increases or reduces their energy levels. In this way, energy can be understood as modes of autistic functionality where the informants' individual energy levels, the contexts in which they find themselves and the strategies they use to influence and form central parts of their everyday lives.

Place, publisher, year, edition, pages
Edititions de l'EHESS, 2023
Keywords
Energy Management, Autism, Young Autistic Adults, Autistic Functionality, Spectrum disorder, Services, Children, Youth
National Category
Social Work
Identifiers
urn:nbn:se:sh:diva-52882 (URN)001102753200003 ()
Available from: 2023-12-18 Created: 2023-12-18 Last updated: 2024-09-04Bibliographically approved
Hultman, L., Von Koch, L., Schön, U.-K. -., Åkesson, E. & Tistad, M. (2023). Exploring the Sharing and Legitimacy of Experience-Based Knowledge of Living with Acquired Brain Injury in Two Practice Communities. Health & Social Care in the Community, 2023, Article ID 6677161.
Open this publication in new window or tab >>Exploring the Sharing and Legitimacy of Experience-Based Knowledge of Living with Acquired Brain Injury in Two Practice Communities
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2023 (English)In: Health & Social Care in the Community, ISSN 0966-0410, E-ISSN 1365-2524, Vol. 2023, article id 6677161Article in journal (Refereed) Published
Abstract [en]

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. 

Place, publisher, year, edition, pages
Hindawi Publishing Corporation, 2023
National Category
Social Work
Identifiers
urn:nbn:se:sh:diva-52970 (URN)10.1155/2023/6677161 (DOI)001129218000001 ()2-s2.0-85180606085 (Scopus ID)
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, 2020-00685
Available from: 2024-01-03 Created: 2024-01-03 Last updated: 2024-01-08Bibliographically approved
Koziel, S., Hultman, L., Spånberger Weitz, Y., Bertilsdotter Rosqvist, H. & Elmersjö, M. (2023). Failures in the Child Perspective: Social Workers’ Experiences of Losing Focus of the Child. The International Journal of Children's Rights, 31(2), 352-377
Open this publication in new window or tab >>Failures in the Child Perspective: Social Workers’ Experiences of Losing Focus of the Child
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2023 (English)In: The International Journal of Children's Rights, ISSN 0927-5568, E-ISSN 1571-8182, Vol. 31, no 2, p. 352-377Article in journal (Refereed) Published
Abstract [en]

Children’s invisibility, non-participation or limited participation can be associated with social workers’ experiences of losing focus of the child in their work, while at the same time navigating organisational and legal demands where a child perspective is strongly promoted. This article sheds light on social workers’ experiences of workingwith a child perspective and with children’s participation. Six in-depth interviews were conducted with professionals from social services and ngo s and from different child welfare services in Sweden. Our findings indicate that losing focus of the child is a common phenomenon that relates to the dominance of adult-centred practice and that child-centred methods need to be developed. Social workers from NGOs described having better opportunities for working in a child-centred way. Losing focus of the child mirrors the subordinated position of child-centred practice, proving that a child perspective and children’s participation are still inadequately anchored in social work practice.

Place, publisher, year, edition, pages
Brill Academic Publishers, 2023
Keywords
children’s participation, child perspective, social work practice, child-centred practice, Sweden, epistemic justice
National Category
Social Work
Identifiers
urn:nbn:se:sh:diva-51894 (URN)10.1163/15718182-31020006 (DOI)001033618900004 ()2-s2.0-85165090410 (Scopus ID)
Available from: 2023-07-05 Created: 2023-07-05 Last updated: 2023-08-25Bibliographically approved
Bertilsdotter Rosqvist, H., Hultman, L., Österborg Wiklund, S., Nygren, A., Storm, P. & Sandberg, G. (2023). Intensity and Variable Attention: Counter Narrating ADHD, from ADHD Deficits to ADHD Difference. British Journal of Social Work, 53(8), 3647-3664
Open this publication in new window or tab >>Intensity and Variable Attention: Counter Narrating ADHD, from ADHD Deficits to ADHD Difference
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2023 (English)In: British Journal of Social Work, ISSN 0045-3102, E-ISSN 1468-263X, Vol. 53, no 8, p. 3647-3664Article in journal (Refereed) Published
Abstract [en]

Literature on attention deficit hyperactivity disorder (ADHD) has historically come from a cognitive deficit approach and lacked community authorship. In contrast, this article utilises a neurodiversity framework to explore ADHD as a cognitive difference through ADHDers’ experiences. Specifically, here we analyse collective autoethnographic writings from neurodivergent academic researchers writing to one other about their experiences of intensity and variable attention or interest-based attention. Through the process of collective writing, we started to rename and restory our experiences, which has enabled us to understand intensity and variable attention as a valuable facet of human diversity, with both strengths and challenges. This project offers an example of how community-based research can elucidate individual experiences as ADHD/AuDHD researchers, facilitate exploration of varied experiences with intensity and attention and increase self-awareness and ability to give and receive neuroaffirmative support.

Place, publisher, year, edition, pages
Oxford University Press, 2023
Keywords
adult ADHD, attention, AuDHD, collective autoethnography, hyperactivity, neuroaffirmative support, neurodiversity
National Category
Social Work
Identifiers
urn:nbn:se:sh:diva-51555 (URN)10.1093/bjsw/bcad138 (DOI)000995688600001 ()2-s2.0-85180115213 (Scopus ID)
Available from: 2023-05-29 Created: 2023-05-29 Last updated: 2024-01-03Bibliographically approved
Bertilsdotter Rosqvist, H., Hultman, L. & Hallqvist, J. (2023). Knowing and accepting oneself: Exploring possibilities of self-awareness among working autistic young adults. Autism, 27(5), 1417-1425
Open this publication in new window or tab >>Knowing and accepting oneself: Exploring possibilities of self-awareness among working autistic young adults
2023 (English)In: Autism, ISSN 1362-3613, E-ISSN 1461-7005, Vol. 27, no 5, p. 1417-1425Article in journal (Refereed) Published
Abstract [en]

Autistic people have historically been described as incapable of developing a deeper sense of self-awareness, and autistic understandings of self-awareness have been largely disregarded. The aim of this study is to explore the way young autistic adults try to understand their functionality and who they are, or to develop their sense of self-awareness, in work and in private life contexts. In 12 qualitative interviews conducted with four autistic adults without learning difficulties, we identified a rich set of reflections on knowing and accepting oneself. The overarching theme of self-knowledge has three subthemes: learning from previous experiences, learning about oneself by securing the support of others, and understanding and accepting autistic functionality. The strategy of self-knowledge was used by these young adults to help them achieve functional lives in the work and private domains. Our results show that young autistic adults both actively explore and develop their self-awareness. We suggest that it is important for practitioners and employers working with autistic individuals to engage with their journeys of self-awareness as a vital part of understanding and supporting them.

Place, publisher, year, edition, pages
Sage Publications, 2023
Keywords
adults, autism, autistic-centred support, neurodiversity, self-awareness
National Category
Social Work
Identifiers
urn:nbn:se:sh:diva-50262 (URN)10.1177/13623613221137428 (DOI)000889629400001 ()36409056 (PubMedID)2-s2.0-85142658280 (Scopus ID)
Available from: 2022-11-22 Created: 2022-11-22 Last updated: 2023-07-06Bibliographically approved
Hultman, L., Bertilsdotter Rosqvist, H., Elmersjö, M. & Koziel, S. (2023). Making me with others-gendered meanings of youth and youthfulness among young female disabled assistance users. Disability & Society, 38(9), 1626-1646
Open this publication in new window or tab >>Making me with others-gendered meanings of youth and youthfulness among young female disabled assistance users
2023 (English)In: Disability & Society, ISSN 0968-7599, E-ISSN 1360-0508, Vol. 38, no 9, p. 1626-1646Article in journal (Refereed) Published
Abstract [en]

The paper explores how disabled girls with Personal Assistants (PA:s) in a Swedish context constitute themselves as subjects in relation to intersecting meanings of age, gender, space, time and disability. The results illuminate the importance of social spaces and social relationships for the girls’ forming their sense of selves. Similar to ablebodied girls, disabled girls’ transition into adulthood can be viewed as a yoyo-transitions, entering and exiting different adult positions several times. Unlike ablebodied girls, they enter adult positions not commonly associated with youths, such as work leadership positions in relation to adult employees, such as the adult PA. This implies that they to some extent manage their own process of becoming an adult. Our findings stress the importance of recognition and awareness of disabled girls transition to adulthood as different not pathological to nondisabled girls’, where consideration is taken both to individual needs and preferences of female assistance users.

  • All girls need to develop their sense of themselves to become women
  • Disabled girls with personal assistants find it difficult to live ordinary lives as girls without the support of external personal assistants
  • With the help of personal assistants disabled girls can participate in the places and with the people they choose themselves
  • The relationship with the personal assistant put demands on the disabled girl to become a woman faster than abledbodied girls, in the same time it can hinder the girl’s development into a woman
  • It is important for practioners and policymakers to recognize the dual role of personal assistants in disabled girls lives
Place, publisher, year, edition, pages
Routledge, 2023
Keywords
Personal assistance, transition to adulthood, intersectionality, identity, space, disabled girl
National Category
Social Work
Identifiers
urn:nbn:se:sh:diva-47802 (URN)10.1080/09687599.2021.2007360 (DOI)000729029700001 ()2-s2.0-85121374958 (Scopus ID)
Funder
Norrbacka-Eugenia Foundation
Available from: 2021-12-13 Created: 2021-12-13 Last updated: 2023-11-24Bibliographically approved
Bertilsdotter Rosqvist, H., Hultman, L. & Hallqvist, J. (2023). Managing Vocational Work, Achieving and Sustaining Work Performance: Support and Self-management amongst Young Autistic Adults in the Context of Vocational Support Interventions in Sweden. British Journal of Social Work (1), 258-275
Open this publication in new window or tab >>Managing Vocational Work, Achieving and Sustaining Work Performance: Support and Self-management amongst Young Autistic Adults in the Context of Vocational Support Interventions in Sweden
2023 (English)In: British Journal of Social Work, ISSN 0045-3102, E-ISSN 1468-263X, no 1, p. 258-275Article in journal (Refereed) Published
Abstract [sv]

In this article, we explore experiences of support and self-management amongst young autistic adults in the context of vocational support interventions in Sweden. We analyse how young autistic men use different strategies to manage their vocational work and the support they need to maintain, achieve and sustain their work performance. Data consist of eleven interviews with 4 autistic young adult men in different work environments where vocational support interventions are implemented to different degrees. One finding concludes that the interviewees are affected by and try to adapt to neurotypical norms and expectations about working life and adulthood. Although individualised coping strategies can be helpful, it is important for employers and formal support persons to understand and acknowledge that individual emotional and problem-solving coping strategies are demanding and need to be combined with adaptations in the working environment. Another finding concludes how work managers act as gatekeeper in the vocational support system the young autistic men aspire to access and in which they need to manage their work performance. Thus, social workers must provide structured and well-coordinated formal work support by both involving the autistic clients’ employers, work managers and informal networks.

Place, publisher, year, edition, pages
Oxford Studies in the Enlightenment, 2023
Keywords
autism, coping, vocational support, young adults
National Category
Social Work
Research subject
Politics, Economy and the Organization of Society
Identifiers
urn:nbn:se:sh:diva-49671 (URN)10.1093/bjsw/bcac138 (DOI)000834958500001 ()
Available from: 2022-08-07 Created: 2022-08-07 Last updated: 2023-02-23Bibliographically approved
Hultman, L., Sandman, F., Nelson, J., Åkerlund, M., Von Koch, L. & Tistad, M. (2023). "Som erfarenhetsforskare, då är man med och bestämmer i forskningsprojektet": en autoetnografisk studie om en gemensam forskningsprocess. Socialvetenskaplig tidskrift, 29(3-4), 305-324
Open this publication in new window or tab >>"Som erfarenhetsforskare, då är man med och bestämmer i forskningsprojektet": en autoetnografisk studie om en gemensam forskningsprocess
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2023 (Swedish)In: Socialvetenskaplig tidskrift, ISSN 1104-1420, E-ISSN 2003-5624, Vol. 29, no 3-4, p. 305-324Article in journal (Refereed) Published
Abstract [en]

In a participatory action research project, we emphasize experiences of collaboration between aca-demic and community researchers by applying analytical autoethnography. The aim of the article is to describe the research process which involves both individual and collaborative processes, and to analyze challenges in relation to participation in the ongoing research process. We identified four themes: Start-up and initial challenges, Conditions and structural prerequisites for collabo-ration, Joint development of work methods and Power and role distribution. Our findings are presented in two separate analyses; a collaborative inductive analysis and an academic led theore-tical analysis in which Arnstein’s ladder of participation and Fricker’s concept of epistemic injus-tice are utilized in order to scrutinize challenges related to different degrees of participation in the research process. The results demonstrate that shared hermeneutic resources are necessary for the mitigation of epistemic injustice and enablement of mutual learning processes, such as collective writing processes. The results also indicate that a full participation for community researchers in the entire research process was difficult to achieve, both in relation to structural resources such as allocated time, and in relation to perceptions of meaning- making aspects, for example, indivi-dual interests and contributionsin terms of knowledge.

Place, publisher, year, edition, pages
Linköping University Electronic Press, 2023
Keywords
Participatory research, participatory design, co-creative processes, implementation, epistemic injustice
National Category
Other Social Sciences
Identifiers
urn:nbn:se:sh:diva-52537 (URN)10.3384/svt.2022.29.3-4.4673 (DOI)
Available from: 2023-10-24 Created: 2023-10-24 Last updated: 2023-10-24Bibliographically approved
Projects
Forskningsprogrammet Människovärde och delaktighet (MOD); Marie Cederschiöld UniversityLeder individuella stöd till ökad delaktighet?; Marie Cederschiöld University
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0001-6333-2852

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