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The role of a discussion forum within a web-based psychoeducational intervention focusing on sex and fertility: What do young adults communicate?
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.ORCID iD: 0000-0002-4555-1274
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Department of Women's and Children's Health Karolinska Institute Stockholm Sweden;Department of Psychology Umeå University Umeå Sweden.ORCID iD: 0000-0002-1739-4486
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.ORCID iD: 0000-0002-1591-7407
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences. Department of Women's and Children's Health Karolinska Institute Stockholm Sweden.ORCID iD: 0000-0003-1279-2191
2023 (English)In: Cancer Medicine, E-ISSN 2045-7634, Vol. 12, no 16, p. 17273-17283Article in journal (Refereed) Published
Abstract [en]

Objective: This study sought to investigate interactive participation and content of a moderated discussion forum within a web-based psychoeducational intervention aimed at alleviating sexual dysfunction and fertility distress in young adults diagnosed with cancer.

Methods: The study is part of the Fex-Can Young Adult randomized controlled trial (RCT), in which young adults with self-reported sexual dysfunction or fertility distress were invited to participate. This study focuses on RCT participants that were randomized into the intervention condition. Sociodemographics and clinical characteristics of intervention participants and level of activity in the intervention were analyzed with descriptive statistics and compared between subgroups (“high” and “low” activity participants). Inductive qualitative thematic analysis was used to analyze the posts in the discussion forum.

Results: Of 135 intervention participants, 24% met the criteria for high activity participation. There were no statistically significant differences found in terms of clinical and sociodemographic characteristics between high and low activity participants. Ninety-one participants (67%) accessed the discussion forum, and 19 (14%) posted at least once. Posters shared intimate details of their experiences of sexuality and fertility following cancer. The thematic analysis of posts resulted in four themes: fertility fears, perceptions of the changed body, missing out on life, and importance of support and information.

Conclusions: While a smaller proportion of participants posted in the discussion forum, a majority spent time reading posts (lurkers). Participants posting in the forum shared experiences of intimate relationships, body image, parenthood concerns, and support needs. The discussion forum was used by a majority of intervention participants, and provided appreciated support for those who posted in the forum. We therefore recommend similar interventions to include this opportunity for interaction and communication.

Place, publisher, year, edition, pages
Wiley-Blackwell, 2023. Vol. 12, no 16, p. 17273-17283
National Category
Nursing
Research subject
Caring Sciences
Identifiers
URN: urn:nbn:se:uu:diva-508387DOI: 10.1002/cam4.6317ISI: 001022824000001PubMedID: 37401398OAI: oai:DiVA.org:uu-508387DiVA, id: diva2:1784791
Funder
Swedish Cancer Society, 190196PjSwedish Cancer Society, CAN 2013/886Swedish Cancer Society, CAN 2016/615Forte, Swedish Research Council for Health, Working Life and Welfare, 2014‐4689Forte, Swedish Research Council for Health, Working Life and Welfare, 2019‐00839The Cancer Research Funds of Radiumhemmet, 161272Vårdal Foundation, 2014‐0098Swedish Research Council, 2017‐01530Available from: 2023-07-31 Created: 2023-07-31 Last updated: 2026-01-18Bibliographically approved
In thesis
1. Internet-delivered interventions for sexual and reproductive health following cancer: The Fex-Can Young Adult project
Open this publication in new window or tab >>Internet-delivered interventions for sexual and reproductive health following cancer: The Fex-Can Young Adult project
2026 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

This thesis is embedded within the Fex-Can Young Adult research project and consists of five papers. The overall aim was to develop and evaluate internet-delivered interventions targeting sexual problems and fertility-related distress following a cancer diagnosis, with the ultimate goal of improving the quality of survivorship among individuals diagnosed with cancer during young adulthood (18-39 years).

Paper I reported findings from a randomized controlled trial evaluating the efficacy of the Fex-Can Sex program in alleviating sexual dysfunction 1.5 years following a cancer diagnosis during young adulthood. No significant effects of the program were demonstrated, and participant activity in the intervention was limited. 

Paper II explored interactive activity and the content of discussions forum posts within the Fex-Can Sex and Fex-Can fertility programs. A limited proportion of participants met criteria for high level activity. Four themes were constructed through thematic analysis of the discussion forum posts: Fertility fears, Perceptions of the changed body, Missing out on life, and Importance of support and information

Paper III presented the internal pilot trial and randomized controlled trial of the Fex-Can 2.0 intervention, which was designed to alleviate sexual problems and fertility-related distress among individuals diagnosed with cancer during young adulthood. 

Paper IV presented the collaboration between patient research partners and researchers in the refinement and further development of the Fex-Can intervention. Using qualitative content analysis for analysis of multimodal data (impact log information, field notes, individual interviews), three main categories were constructed: Collaborative working process, Group atmosphere and Concrete impact

Paper V investigated changes in perceptions of the body during the first five years following a cancer diagnosis in young adulthood. Over half of female and one-fourth of male participants reported body image disturbance at 1.5 years post-diagnosis, with significant improvements in body image observed over time among males and among females diagnosed with breast cancer or lymphoma. 

The work presented in this thesis contributes to existing research by providing insight into the sexual and reproductive health of young adults diagnosed with cancer, and by informing future research aimed at refining and evaluating internet-delivered interventions. 

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2026. p. 112
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 2227
Keywords
Cancer survivorship, Sexual and reproductive health, Body image, Young adults, Internet-delivered interventions, Patient and public involvement, Complex interventions
National Category
Cancer and Oncology Nursing
Research subject
Medical Science
Identifiers
urn:nbn:se:uu:diva-575649 (URN)978-91-513-2722-8 (ISBN)
Public defence
2026-03-06, Lecture Hall IV, University Main Building, Biskopsgatan 3, Uppsala, 13:15 (English)
Opponent
Supervisors
Available from: 2026-02-12 Created: 2026-01-18 Last updated: 2026-02-12

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Skog, RebeccaLampic, ClaudiaOlsson, ErikWettergren, Lena

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