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Tools and Norm Critical Aspects in Participatory Health Research and Design involving Marginalized Youth: A Scoping Review
Halmstad University, School of Health and Welfare.ORCID iD: 0000-0002-3064-0442
Halmstad University, School of Health and Welfare.ORCID iD: 0000-0003-4438-6673
Halmstad University, School of Health and Welfare.ORCID iD: 0000-0002-3720-693X
Halmstad University, School of Health and Welfare.ORCID iD: 0000-0002-3576-2393
2024 (English)In: The first Global Conference on Person-Centred Care: Knowledge(s) and Innovations for Health in Changing Societies: Abstract Book / [ed] Axel Wolf; Joakim Öhlén, Gothenburg: University of Gothenburg, 2024, p. 147-148Conference paper, Poster (with or without abstract) (Other academic)
Abstract [en]

Background: To enhance person-centered approaches for youths within care contexts, developments must engage individuals with lived experience. There is a risk that the perceived intricacies of engaging vulnerable youths deter researchers from including them. Despite the expanding body of health-related research involving young individuals, the utilization of pathogenic methodologies and traditional research methods risk excluding marginalised youth and preserving biases in knowledge production. Among these youth, some face multiple marginalization and without norm-critical perspectives their involvement could lead to tokenism and disempowerment. Hence, there is a need for inclusive, adaptable research tools. Objective: To assist researchers in making methodological decisions, this study pull together method contributions from recent health-related research and design projects that involved marginalized or vulnerable youth in a range of fields. We explore participation levels and norm-critical aspects and maps the rationales, outcomes, and tools. Methods: An interpretive scoping review was conducted. 508 studies were identified by searching six databases, and 38 were included for analysis. An analytical framework was created based on Hart’s Ladder of Participation and literature in critical participatory and health-related research. Results: The studies represented 18 different disciplines. 11 to 15-year-olds were most likely to be involved. A great variation in tools and materials was observed, where visual material was used in 20 out of 38 studies (of which 13 used Photovoice). Participation levels were not directly related to tool types. Rather, high levels of participation were often found where norm-critical aspects were largely reflected. Studies that developed tools, interventions or services reached lower scores for participation levels and norm-critical aspects compared to studies that aimed for a general understanding of target group perspectives. While many studies stressed their method contribution, few compared or critically reflected on their choice of tools. Furthermore, studies differed in their acknowledgement of participants’ expertise and contributions.

Place, publisher, year, edition, pages
Gothenburg: University of Gothenburg, 2024. p. 147-148
National Category
Design Health Sciences
Research subject
Health Innovation, IDC
Identifiers
URN: urn:nbn:se:hh:diva-54512OAI: oai:DiVA.org:hh-54512DiVA, id: diva2:1892555
Conference
The first Global Conference on Person-Centred Care (GCPCC 2024) Knowledge(s) and Innovations for Health in Changing Societies, Gothenburg, May 14-16, 2024
Available from: 2024-08-27 Created: 2024-08-27 Last updated: 2025-02-24Bibliographically approved

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Teleman, BrittaSvedberg, PetraIsaksson, AnnaNygren, Jens M.

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