Experiences of a web-based psycho-educational intervention targeting sexual dysfunction and fertility distress in young adults with cancer-a self-determination theory perspective
Open accessAbstract
INTRODUCTION: Sexual and reproductive health are significant aspects of quality of life. Healthcare often fails to provide adequate support for young cancer survivors in this area, hence the need to develop more effective interventions. The present study aimed to describe experiences of participating in a web-based psycho-educational intervention focusing on sexual dysfunction and fertility distress after cancer, and to explore these experiences within the theoretical frame of the basic psychological needs for competence, relatedness and autonomy according to self-determination theory. METHODS: Individual semi-structured interviews with 24 women and 4 men, age 19-40, were abductively analyzed using the Framework approach for qualitative content analysis. RESULTS: Participant experiences corresponded well with the three main deductive themes competence, relatedness and autonomy, divided into a total of nine subthemes illustrating varying degrees of basic need satisfaction with considerable nuance but not without ambiguity. While satisfaction of the need for competence could be linked to the amount of information in relation to participants' cognitive capacity, satisfaction of the need for relatedness seemed to be of special importance for these young adults with cancer experience. Invitation to the program meant a chance at alleviating loneliness and normalizing problems, symptoms and concerns. Participants' descriptions of perceived autonomy support were more challenging and ambiguous, because of the many contradictions in participants' responses to their variable situations. CONCLUSION: Basic psychological needs were confirmed as flexible positions along a continuum rather than discrete and mutually exclusive qualities. Understanding the variety of basic need satisfaction may enhance the design of future web-based interventions to be even more inclusive, tailorable and autonomy-supportive. Further research is warranted to determine the role of basic need satisfaction as a possible mediator for web-based psychoeducational interventions in cancer survivorship care.
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Integrity signals
Registry
Cites
Statistics
Claims the paper makes
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
The finding of increased understanding and acceptance of sexual problems reported by some intervention group members is in line with an interview study of young adults with cancer following a similar web-based psychoeducational intervention.
“This finding is in line with an interview study addressing young adults (n = 28, aged 19–40) with cancer following participation in a similar web-based psychoeducational intervention targeting both sexual dysfunction and fertility-related distress (Micaux Obol et al., 2020).”
From Efficacy of a web-based psychoeducational intervention, Fex-can sex, for young adult childhood cancer survivors with sexual dysfunction: A randomized controlled trial (2024) · cites this paper as Micaux Obol et al., 2020
Self-check
Percentages, sums and reported differences re-computed from the paper’s own numbers.
The self-check needs the paper’s full text.
Cites
Tong, A., Sainsbury, P., & Craig, J. (2007) · International Journal for Quality in Health Care · doi:10.1093/intqhc/mzm042 · Cited by 42,509 · see citing works
Ryan, R. M., & Deci, E. L. (2000) · American Psychologist · doi:10.1037//0003-066x.55.1.68 · Cited by 27,815 · cited 5× · see citing works
“Self-determination theory (SDT), as conceived by Ryan and Deci [15] and developed for use within the context of internet interventions for cancer survivors by Pingree et al [18], was used as a theoretical basis for the intervention, which aimed to support participants’ competence, relatedness and autonomy in an inclus…”
BackgroundMethodInfluentialGale, N. K., Heath, G., Cameron, E., Rashid, S., & Redwood, S. (2013) · BMC Medical Research Methodology · doi:10.1186/1471-2288-13-117 · Cited by 10,865 · see citing works
Moral Identity and Developmental Theory
Lapsley, D. K. (2015) · Human Development · doi:10.1159/000435926 · Cited by 3,836 · see citing works
(2004) · Choice Reviews Online · doi:10.5860/choice.42-2286 · Cited by 2,566 · see citing works
Self-Determination Theory Applied to Health Contexts: A Meta-Analysis
Ng, J. Y. Y., Ntoumanis, N., Thøgersen-Ntoumani, C., Deci, E. L., Ryan, R. M., Duda, J. L., & Williams, G. C. (2012) · Perspectives on Psychological Science · doi:10.1177/1745691612447309 · Cited by 1,959 · cited 1× · see citing works
“In healthcare interventions, autonomy support has shown to be a predictor for satisfaction of competence and relatedness needs [17] and to be a potential mediator explaining both behavioral and health outcomes [18, 19].”
BackgroundA Review of Self-Determination Theory’s Basic Psychological Needs at Work
Van den Broeck, A., Ferris, D. L., Chang, C.-H., & Rosen, C. C. (2016) · Journal of Management · doi:10.1177/0149206316632058 · Cited by 1,465 · see citing works
Defining Internet-Supported Therapeutic Interventions
Barak, A., Klein, B., & Proudfoot, J. G. (2009) · Annals of Behavioral Medicine · doi:10.1007/s12160-009-9130-7 · Cited by 731 · cited 1× · see citing works
“Internet interventions have the potential to provide flexible, cost-efficient support [10] but, given the variation in trial designs, their overall effectiveness remains contested [11–13].”
BackgroundLange, M., Joly, F., Vardy, J. L., Ahles, T. A., Dubois, M., Tron, L., Winocur, G., de Ruiter, M. B., & Castel, H. (2019) · Annals of Oncology · doi:10.1093/annonc/mdz410 · Cited by 703 · see citing works
Fernandez, M. E., Ruiter, R. A. C., Markham, C. M., & Kok, G. (2019) · Frontiers in Public Health · doi:10.3389/fpubh.2019.00209 · Cited by 484 · cited 1× · see citing works
“To be effective, interventions need to have an explicit theoretical orientation relevant for the intended outcome [14].”
BackgroundDeci, E. L., & Ryan, R. M. (2012) · International Journal of Behavioral Nutrition and Physical Activity · doi:10.1186/1479-5868-9-24 · Cited by 342 · cited 3× · see citing works
“However, the principle of respecting autonomous choices [17] could conflict with intervention hypotheses and end-outcomes expecting change and improvement.”
BackgroundQLG, O. B. O. T. E., van Leeuwen, M., Husson, O., Alberti, P., Arrarás, J. I., Chinot, O. L., Costantini, A., Darlington, A., Dirven, L., Eichler, M., et al. (2018) · Health and Quality of Life Outcomes · doi:10.1186/s12955-018-0920-0 · Cited by 243 · see citing works
Sexual dysfunction and infertility as late effects of cancer treatment
Schover, L. R., van der Kaaij, M. A. E., van Dorst, E. B. L., Creutzberg, C. L., Huyghe, É., & Kiserud, C. E. (2014) · European Journal of Cancer Supplements · doi:10.1016/j.ejcsup.2014.03.004 · Cited by 234 · see citing works
Quality of life, problems, and needs of disease-free breast cancer survivors 5 years after diagnosis
Schmidt, M. E., Wiskemann, J., & Steindorf, K. (2018) · Quality of Life Research · doi:10.1007/s11136-018-1866-8 · Cited by 227 · see citing works
Logan, S., Perz, J., Ussher, J. M., Peate, M., & Anazodo, A. C. (2018) · Psycho-Oncology · doi:10.1002/pon.4927 · Cited by 218 · see citing works
Leykin, Y., Thekdi, S. M., Shumay, D. M., Muñoz, R. F., Riba, M., & Dunn, L. B. (2012) · Psycho-Oncology · doi:10.1002/pon.1993 · Cited by 192 · see citing works
Experiencing reproductive concerns as a female cancer survivor is associated with depression
Gorman, J. R., Su, H.-C. I., Roberts, S. C., Dominick, S. A., & Malcarne, V. L. (2014) · Cancer · doi:10.1002/cncr.29133 · Cited by 166 · see citing works
A systematic review of types and efficacy of online interventions for cancer patients.
McAlpine, H., Joubert, L., Martin-Sanchez, F., Merolli, M., & Drummond, K. J. (2015) · Patient Education and Counseling · doi:10.1016/j.pec.2014.11.002 · Cited by 160 · see citing works
Talking about sex with health professionals: the experience of people with cancer and their partners
Gilbert, E., Perz, J., & Ussher, J. M. (2014) · European Journal of Cancer Care · doi:10.1111/ecc.12216 · Cited by 154 · cited 1× · see citing works
“Research suggests that healthcare fails to provide adequate support and treatment for these and other survivorship concerns [8, 9].”
BackgroundCancer negatively impacts on sexual function in adolescents and young adults: The AYA HOPE study
Wettergren, L., Kent, E. E., Mitchell, S. A., Zebrack, B., Lynch, C. F., Rubenstein, M. B., Keegan, T. H. M., Wu, X., Parsons, H. M., Smith, A. W., et al. (2016) · Psycho-Oncology · doi:10.1002/pon.4181 · Cited by 127 · see citing works
The value of theory for enhancing and understanding e-health interventions
Pingree, S., Hawkins, R., Baker, T., DuBenske, L., Roberts, L. J., & Gustafson, D. H. (2010) · American Journal of Preventive Medicine · doi:10.1016/j.amepre.2009.09.035 · Cited by 103 · cited 2× · see citing works
“In healthcare interventions, autonomy support has shown to be a predictor for satisfaction of competence and relatedness needs [17] and to be a potential mediator explaining both behavioral and health outcomes [18, 19].”
BackgroundMethodDigital interventions to support adolescents and young adults with cancer: systematic review
McCann, L., McMillan, K. A., & Pugh, G. (2019) · JMIR Cancer · doi:10.2196/12071 · Cited by 98 · see citing works
The Australian Cancer and Fertility Study Team (ACFST), Ussher, J. M., & Perz, J. (2018) · BMC Cancer · doi:10.1186/s12885-018-4172-5 · Cited by 84 · cited 1× · see citing works
“While it is known that men do suffer from fertility distress and sexual dysfunction after cancer [6, 36], previous results from our research group suggest that young men with testicular cancer may not be as severely affected by sexual dysfunction and fertility distress as women with cancer, as men with other malignant…”
ResultInfertility‐related distress following cancer for women and men: A mixed method study
Ussher, J. M., & Perz, J. (2019) · Psycho-Oncology · doi:10.1002/pon.4990 · Cited by 82 · cited 2× · see citing works
“Experiencing relationship and intimacy difficulties and/or the threat of infertility may be deeply distressing [6] and has been associated with mental health issues [7].”
BackgroundResultVassilakopoulou, M., Boostandoost, E., Papaxoinis, G., Rouge, T. D. L. M., Khayat, D., & Psyrri, A. K. (2015) · Critical Reviews in Oncology/Hematology · doi:10.1016/j.critrevonc.2015.08.002 · Cited by 75 · cited 1× · see citing works
“In addition, several cancer treatments affecting reproductive organs or the hormonal system may cause temporary or permanent subfertility in both women and men [5].”
BackgroundBrouwer, W., Oenema, A., Crutzen, R., de Nooijer, J., de Vries, N. K., & Brug, J. (2009) · Health Education · doi:10.1108/09654280911001149 · Cited by 67 · cited 1× · see citing works
“It is known that motivation and curiosity contribute to the use of web-based behavior change interventions for the general population [32] and also that experiences of internet interventions for cancer survivors may be negatively influenced by time since diagnosis, as well as lack of time and perceived workload [33].”
BackgroundLjungman, L., Eriksson, L. E., Flynn, K. E., Gorman, J. R., Ståhl, O., Weinfurt, K., Wiklander, M., Lampic, C., & Wettergren, L. (2019) · The Journal of Sexual Medicine · doi:10.1016/j.jsxm.2019.05.005 · Cited by 55 · cited 1× · see citing works
“While it is known that men do suffer from fertility distress and sexual dysfunction after cancer [6, 36], previous results from our research group suggest that young men with testicular cancer may not be as severely affected by sexual dysfunction and fertility distress as women with cancer, as men with other malignant…”
ResultManagement of sexual problems in cancer patients and survivors
Varela, V. S., Zhou, E. S., & Bober, S. L. (2013) · Current Problems in Cancer · doi:10.1016/j.currproblcancer.2013.10.009 · Cited by 50 · see citing works
Desveaux, L., Saragosa, M., Rogers, J., Bevan, L., Loshak, H., Moser, A., Feldman, S., Regier, L. D., Jeffs, L. P., & Ivers, N. M. (2017) · Implementation Science · doi:10.1186/s13012-017-0602-z · Cited by 46 · see citing works
Sexual function in adolescent and young adult cancer survivors—a population-based study
Olsson, M., Steineck, G., Enskär, K., Wilderäng, U., & Jarfelt, M. (2018) · Journal of Cancer Survivorship · doi:10.1007/s11764-018-0684-x · Cited by 44 · cited 1× · see citing works
“These physiological changes combined with psychosocial factors such as alterations of body image and long-lasting fatigue [1], can contribute to lower satisfaction with sexual function (women) and lack of desire (men) through young adulthood [3] and even in the long term [4].”
BackgroundWinterling, J., Wiklander, M., Obol, C. M., Lampic, C., Eriksson, L. E., Pelters, B., & Wettergren, L. (2016) · JMIR Research Protocols · doi:10.2196/resprot.5499 · Cited by 42 · see citing works
Self-citationMyall, M., May, C. R., Grimmett, C., May, C., Calman, L. A., Richardson, A. M., & Foster, C. L. (2015) · BMC Medical Informatics and Decision Making · doi:10.1186/s12911-015-0214-y · Cited by 37 · cited 1× · see citing works
“It is known that motivation and curiosity contribute to the use of web-based behavior change interventions for the general population [32] and also that experiences of internet interventions for cancer survivors may be negatively influenced by time since diagnosis, as well as lack of time and perceived workload [33].”
BackgroundGorlick, A., Bantum, E. O., & Owen, J. E. (2014) · Psycho-Oncology · doi:10.1002/pon.3443 · Cited by 30 · see citing works
Wiklander, M., Strandquist, J., Obol, C. M., Eriksson, L. E., Winterling, J., Rodriguez‐Wallberg, K. A., Fugl-Meyer, K. S., Ahlgren, J., Ljungman, P. T., Lampic, C., et al. (2017) · Supportive Care in Cancer · doi:10.1007/s00520-017-3793-6 · Cited by 30 · see citing works
Lampic, C., Ljungman, L., Obol, C. M., Eriksson, L. E., & Wettergren, L. (2019) · BMC Cancer · doi:10.1186/s12885-019-5518-3 · Cited by 28 · cited 7× · see citing works
“Fertility and sexuality following cancer (Fex-Can) is a Swedish nationwide cohort study with an embedded randomized controlled trial (RCT) [22], testing the effect of a web-based psycho-educational program for either sexual dysfunction or fertility distress.”
BackgroundInfluentialSmith, J. N., Taylor, B., Shaw, K. L., Hewison, A., & Kenyon, S. L. (2018) · BMC Pregnancy and Childbirth · doi:10.1186/s12884-018-1733-1 · Cited by 27 · see citing works
Goossens, J., Delbaere, I., Beeckman, D., Verhaeghe, S. T. L., & Hecke, A. V. (2014) · Oncology nursing forum · doi:10.1188/15.onf.34-43 · Cited by 26 · cited 1× · see citing works
“been reported as a major concern for young patients with cancer experiencing fertility distress [30].”
BackgroundKilsdonk, E., Wendel, E., Broeder, E. V. D., van Leeuwen, F. E., van den Berg, M. H., & Jaspers, M. (2016) · European Journal of Cancer Care · doi:10.1111/ecc.12462 · Cited by 23 · cited 1× · see citing works
“This is not surprising since men and especially younger men generally tend to have lower participation rates in surveybased research, a phenomenon that has also been confirmed in young adult cancer survivors [35].”
BackgroundAlberts, N. M., Hadjistavropoulos, H. D., Titov, N., & Dear, B. F. (2017) · Supportive Care in Cancer · doi:10.1007/s00520-017-3872-8 · Cited by 21 · see citing works
Martopullo, C., Oberoi, D. V., Levin, G., Qureshi, M., Morgan-Maver, E., Korzeniewski, O., Pelletier, G., Carlson, L. E., & Bultz, B. D. (2019) · Journal of Cancer Survivorship · doi:10.1007/s11764-019-00838-x · Cited by 12 · cited 1× · see citing works
“Another potential partial explanation for the low participation rate of men in the present study is that male cancer patients might prefer “male only” and diagnosis-specific support groups [38].”
BackgroundHaase, K. R., Gifford, W., Holtslander, L. F., & Thomas, R. L. (2018) · Cancer Nursing · doi:10.1097/ncc.0000000000000619 · Cited by 11 · cited 1× · see citing works
“This is in keeping with the literature where several studies [29, 31] emphasize that patients suffering from long-term sequelae of treatment request internet-delivered detailed, personalized information and support.”
Result
Flagged first, then by citations
Research works printed but not linked: 1
- [41]Gale NK, Heath G, Cameron E, Rashid S, Redwood S. Using the framework method for the analysis of qualitative data in multi-disciplinary health research. BMC medical research methodology. 2013; 13: 117–. 10.1186/1471-2288-13-117. 24047204 PMC3848812 · DOI · Paper page
Cited by
Sorted by citations
Micaux, C., Wiklander, M., Eriksson, L. E., Wettergren, L., & Lampic, C. (2022) · JMIR Cancer · doi:10.2196/33239 · Cited by 31 · see citing works
“Qualitative interviews with a subsample of participants in the IG suggested that some individuals who had been relatively inactive found the program, or parts of it, helpful [60].”
BackgroundManagement Strategies for Sexuality Complaints after Gynecologic Cancer: A Systematic Review
Pizetta, L. M., Reis, A. D. C., Méxas, M. P., Guimarães, V. D. A., & de Paula, C. L. (2022) · Revista Brasileira Ginecologia e Obstetrícia · doi:10.1055/s-0042-1756312 · Cited by 17 · see citing works
Mahar, E. A., O'Kane, K. M. K., Brotto, L. A., & Stephenson, K. R. (2022) · Current Sexual Health Reports · doi:10.1007/s11930-022-00333-y · Cited by 16 · see citing works
Gottvall, M., Fagerkvist, K., Lampic, C., & Wettergren, L. (2022) · Internet Interventions · doi:10.1016/j.invent.2022.100559 · Cited by 12 · see citing works
Benedict, C., Dauber-Decker, K. L., King, D., Hahn, A., Ford, J. S., & Diefenbach, M. (2021) · JMIR Formative Research · doi:10.2196/20841 · Cited by 11 · see citing works
“For example, large blocks of text can be difficult to read and comprehend, which may be even more challenging for cancer survivors with lasting treatment side effects such as fatigue or cognitive impairment [47], and our patient research partners corroborated concerns about information overload and text-heavy pages.”
Gelgoot, E. N., Kruglova, K., Chan, P. T. K., Lo, K. C., Rosberger, Z., Chown, P., Kazdan, J., O’Connell, S. B. L., & Zelkowitz, P. (2022) · JMIR Cancer · doi:10.2196/33594 · Cited by 10 · see citing works
“One study has assessed the feasibility of a web-based intervention targeting fertility distress after cancer, but their sample includes only 4 men [28,29].”
BackgroundFagerkvist, K., Jahnukainen, K., Ljungman, L., Lampic, C., & Wettergren, L. (2024) · Internet Interventions · doi:10.1016/j.invent.2024.100739 · Cited by 8 · see citing works
Mostafa, M., Chae, Y.-G., Bland, K. A., & McTaggart-Cowan, H. M. (2025) · Cancers · doi:10.3390/cancers17050736 · Cited by 7 · see citing works
Digital health interventions for oncofertility in female patients: a systematic review
Ha, J.-Y., Kim, M., & Park, H.-J. (2025) · Women s Health Nursing · doi:10.4069/whn.2025.06.13 · Cited by 5 · see citing works
Jang, M., Park, J., & Han, J. (2025) · European Journal of Oncology Nursing · doi:10.1016/j.ejon.2025.102787 · Cited by 4 · see citing works
Dong, Y., Zhang, C., Fang, Y., Wu, Y., & Jiang, G. (2024) · Journal of Adolescent and Young Adult Oncology · doi:10.1089/jayao.2023.0178 · Cited by 3 · see citing works
Hobbs, L. J., Hertel, J., Walton, L., Schartau, P., & Bailey, J. (2025) · Sexual & Relationship Therapy · doi:10.1080/14681994.2025.2508826 · Cited by 3 · see citing works
“However, some did not relate to all the content, especially if it was not specific to their sexual difficulty or detailed enough for the individual (Micaux Obol et al., 2020; Stephenson et al., 2021).”
InfluentialRahmi, K. H., & Fahrudin, A. (2024) · Bulletin of Counseling and Psychotherapy · doi:10.51214/00202406963000
Pizetta, L. M. (2025) · Revista de Pesquisa Cuidado é Fundamental Online · doi:10.9789/2175-5361.rpcfo.v17.13554
Han, J., Jang, M., Kim, S. K., & Park, J. (2026) · Asia-Pacific Journal of Oncology Nursing · doi:10.1016/j.apjon.2026.101020
“13 Additionally, these interventions increase patients' confidence in discussing fertility-related concerns and significantly enhance quality of life.”
- Authors
- Micaux Obol, C., Lampic, C., Wettergren, L., Ljungman, L., & Eriksson, L. E.
- Affiliations
- Uppsala University (SE)
- Karolinska Institutet (SE)
- University of London (GB)
- Venue
- PLoS ONE
- Publisher
- Public Library of Science (PLoS)
- Published
- 2020-07-22
- Volume
- 15
- Issue
- 7
- Pages
- e0236180
- ISSN
- 1932-6203 (ISSN-L)
- PMC
- PMC7375532
- OpenAlex
- W3044284838
- Cited by
- 15
- References
- 41
- Citations by year
- 2026: 1 · 2025: 5 · 2024: 3 · 2022: 5 · 2020: 1
- FWCI
- 0.54
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- PLoS ONE (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- City Research Online (City University London) (acceptedVersion)
- DiVA at Umeå University (Umeå University) (submittedVersion, other-oa)
- Uppsala University Publications (Uppsala University) (submittedVersion, other-oa)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Funders
- Cancerfonden (2016/615, CAN 2016/615)
- Karolinska Institutet (3-780/2014)
- Vetenskapsrådet (2017-01530)
- Barncancerfonden (TJ2014-0050)
- Forskningsrådet om Hälsa, Arbetsliv och Välfärd (2014-4689)
- Topics
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Health Sciences › Medicine › Psychiatry and Mental health › Sexual function and dysfunction studies
- Social Sciences › Psychology › Social Psychology › Motivation and Self-Concept in Sports
- Keywords
- sexual dysfunction, young adult cancer, cancer survivors, self-determination theory, basic psychological needs, need for competence, need for relatedness, need for autonomy, autonomy support, sexual and reproductive health, survivorship care, participant experiences
- MeSH terms
- Cancer Survivors, Psychological Distress, Internet-Based Intervention, Adult, Female, Fertility, Humans, Male, Neoplasms, Patient Education as Topic, Personal Satisfaction, Quality of Life, Sexual Dysfunction, Physiological, Personal Autonomy, Qualitative Research, Young Adult
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review
