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Involving young adult cancer survivors as co-researchers in the development of an internet intervention for fertility distress and sexual dysfunction following cancer
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences. (Vårdvetenskap, Caring Sciences)ORCID iD: 0000-0002-4555-1274
Department of Psychology, Umeå University, Umeå, Sweden.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences. (Vårdvetenskap, Caring Sciences)ORCID iD: 0000-0003-3670-7078
Department of Women's and Children's Health, Karolinska Institutet.
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2024 (English)In: Journal of Psychosocial Oncology Research and Practice, E-ISSN 2637-5974, Vol. 6, no S1, p. 100-100Article in journal, Meeting abstract (Other academic) Published
Abstract [en]

Objective: Patient and public involvement and engagement (PPIE) in research is essential in developing relevant and effective complex interventions for health. The aim is to present the planned process of patient involvement in the development of an internet intervention targeting fertility distress and sexual dysfunction among young adults following cancer.Methods: The present PPIE project is part of the Fertility and Sexuality following Cancer (Fex-Can) project, aiming to alleviate fertility distress and sexual dysfunction among young adult cancer survivors. Approximately 10 young adults (18-39 years) with experience of cancer are being recruited via patient advocacy organizations, social media, and oncology-and hematology clinics to be part of a co-research group. The collaboration will consist of 1-day meetings during which specific topics of the intervention and study design will be discussed and workshopped, including content and structure of the intervention program, recruitment strategies and patient information, as well as collaborative analysis of study results.Results: Evaluation of perceived impact of activities will be assessed using impact logs, and interviews will be conducted to examine the process and experiences of PPIE in the Fex-Can project.Conclusion and implications: Involvement of members of the target group in the development of the Fex-Can 2.0 intervention can facilitate the relevance and potential impact of our internet intervention, as well as empower individuals with lived experiences, and limit research waste.

Place, publisher, year, edition, pages
Wolters Kluwer, 2024. Vol. 6, no S1, p. 100-100
National Category
Cancer and Oncology Nursing
Research subject
Medical Science
Identifiers
URN: urn:nbn:se:uu:diva-546215OAI: oai:DiVA.org:uu-546215DiVA, id: diva2:1925008
Conference
The 25th International Psycho-Oncology Society (IPOS) World Congress of Psycho-Oncology, Maastricht, the Netherlands, 24th-27th of September 2024
Part of project
Fex-Can Young Adults - Fertility and sexuality following cancer in young adulthood, Forte, Swedish Research Council for Health, Working Life and Welfare
Funder
Swedish Cancer Society, 2022-00832Forte, Swedish Research Council for Health, Working Life and Welfare, 2019-00838Swedish Cancer Society, 222311PjThe Cancer Research Funds of Radiumhemmet, 161272Available from: 2025-01-07 Created: 2025-01-07 Last updated: 2025-08-28Bibliographically approved

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Skog, RebeccaSjödin, LarsRose, JohannaLampic, ClaudiaWettergren, Lena

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