The intervention.

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. The development and previous feasibility testing of the web-based program have been described in detail elsewhere [23, 24]. 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 inclusive and permissive way. The intervention was a 12-week web-based program delivered in six consecutive modules including informative texts and illustrations, automated feedback via quizzes, video vignettes, written quotes from cancer survivors, a moderated discussion forum and exercises inspired by mindfulness and/or cognitive behavioral therapy. The sexuality program also offered a personalized telephone consultation. A sub-sample of participants in the RCT formed the sample for the present study, which was part of the process evaluation of the intervention. Intervention usage, which was also discussed during the interviews, is presented as an extended context description below.

Beginning to understand.

The program was appreciated as a check-up opportunity and confirmation of stored-away knowledge, e.g. on anatomy and the hormonal system. The exercises may not have been new to participants, but were recognized as helpful tools. Some were both surprised and relieved to learn that current symptoms and ill-being, e.g. lack of desire, could be related to the cancer treatment. Participants who had felt inferior in relation to healthcare professionals and their disease, now felt more competent and able to formulate new questions. Curiosity about other diagnoses and treatments also contributed to expanding perspectives on one’s own situation. The attitude that ‘the more information, the better’ made participants appreciate the interactive quizzes with immediate feedback. Even the baseline survey used for assessing intervention eligibility had impacted participants in making them reflect about their situation. Not only understanding facts but also understanding one’s own reactions facing the cancer trajectory was linked to a new sense of mastery and awareness. The quote ‘now I know something about cause and effect’, summarized the insight that certain reactions or symptoms were due to the cancer treatment, i.e. legitimate and normal.

Information is both comforting and upsetting.

A common view was that facts make you calmer, even if the facts per se are negative. The provision of balanced and reliable information was appreciated, even by participants already having a high level of perceived competence.

Reading cold hard facts… maybe it's not what you were expecting… the idea that you might not be able to have a child. Even if you already knew it, it hits you hard when you read it there, but then again… it is what it is. You shouldn't withhold facts and information either because… I think somehow it’s good to… um, see it in writing too. (10)

On the other hand, there were also participants who did not feel their competence was strengthened by the program as intended. There was some disappointment about the information provided not being sufficiently detailed and diagnosis-specific, or applicable to their individual situation. Finally, some described hesitating between avoiding all thoughts reminding of their disease, and wanting to learn more. A few even experienced that the program raised new concerns. Strategies used for handling painful and unsolicited information about relapse or infertility sometimes involved quickly shutting down the homepage. Hence, receiving information may have a contradictory effect, on the one hand comforting and calming, on the other hand upsetting.

Too much to handle.

Participants who were suffering from persistent fatigue and/or cognitive impairment felt impeded in their capacity and motivation for reading and processing large amounts of text. Some described not being able to keep up with the pace of the program or getting lost in the layout. While those who were less motivated to begin with gave up and became inactive, others who ‘went all in’ tried to find strategies for handling the information. Ways of remembering to log on despite cognitive difficulties included keeping the text message reminders unopened until the timing was right, and setting aside undisturbed time for the program.

I’m not alone.

The program helped to reduce feelings of loneliness that many participants had been struggling with while encountering difficulties returning to work and managing relationships (professional or intimate) after the treatment period had ended. In this situation of inner feelings of loneliness, frustration and disorientation, the program was like a haven where they could find support and be understood. For some, the affirmation of being ‘normal in a new way’ was enough, but the discovery that others had similar problems could also be a real eye-opener. One participant even described how, thanks to the program, she had gone from feeling like ‘from a different planet’ in the eyes of others, to feeling validated as ‘normal’, and accepted. Another woman regretted not having had access to the program at an earlier point when she was feeling extremely lonely, receiving fertility-threatening treatment for gynecological cancer in the same aftercare ward as new mothers. The program contributed to dissipate loneliness in relation to perceived sexual problems and fertility distress, but people also felt affirmed in their changed outlook on life and their newly gained sense of gratitude about just being alive.

Two sides of reaching out to others.

Participants described how much it meant to communicate with others, especially through the discussion forum.

These hearts that you would get, somehow they make you feel supported, that you’re not alone in this/…/. [the likes and comments in the discussion forum] even made me feel that I would have liked to meet these girls, it reached a level of some kind of affinity. (09)

The interactivity in the forum, as well as the filmed and written survivor stories in the program, would evoke empathy, sympathy and a sense of connection. There was some hesitation about taking active part in discussions, sometimes linked to feelings of guilt as many perceived they had ‘gotten away too easily’ or had been very lucky not getting worse consequences from their disease. Most participants claimed a wish to support others in more difficult situations or contribute to research in a more general way.

Sharing with a partner.

Partnered participants reflected on the level of involvement of partners, both in the present intervention and in the cancer trajectory in general. Some had let their partner read and use the program whereas others did not dare to do this because it was a research project and partners were not explicitly invited. One male participant who had been substantially inactive in the program described how his female partner following his cancer treatment had been severely depressed and how this had affected their sexual life more than the cancer itself. But since the first chapters in the program were aimed at understanding the impact of cancer on sexuality, he had lost interest in the program and never got to the part linking sexuality after cancer to relationships, and he regretted that. The two women who were in same-sex relationships described their partners as very supportive, contrasting with the heterosexual relationships where support in several cases was conditional. While some of the participants who were living in relationships had very strong bonds with their partners, others had more negative experiences from feeling dismissed when trying to communicate their needs, as if the partner still didn’t understand or didn’t care. The program had helped leveraging communication about difficult issues and actually improved the relationship to the extent that the partner was allowed in, sympathetic and interested. Still, there was a request for more support regarding partner involvement and relationships.

Participants who were single had somewhat different approaches to the program. One of them had been very active and linked this to the fact that she was not depressed about being single. The other unpartnered participants had been less active in the program and reasoned about partner disclosure in hypothetical ways, i.e. whether a future partner would react negatively when learning about the cancer treatment, but did not perceive they got so much support from the program. However, participants did not describe feeling offended or outright excluded from the bulk of the program for being single.

Not for me.

There were also instances of feeling overlooked. This could be because the perceived problems were not that distressing or because participants perceived themselves as somehow different or not belonging to the target group. Especially those women who had confirmed infertility felt excluded from many of the themes and discussions concerning fertility distress. There was also the view that the program was interesting in a general way but couldn’t relate to the specific topics or problem areas, i.e. felt the program was not ‘for them’ but for those e.g. younger, living in couples and with at least some fertility potential.

Finding new ways.

Participants with sexual dysfunction often found new ways to overcome their problems and described how the program had contributed to them taking charge of the situation. One participant said the cancer experience had changed her body image in a more positive direction, and that the exercises in the program had confirmed and accentuated this positive feeling by reducing stereotyped ideals concerning sexuality. Another person remembered how sex would be associated with pain and reluctance, but that the exercises in the program had helped her and her partner find new ways, involving improved communication and respect.

If I used to feel some desire, I might push the feeling away because "it would only hurt anyway". But then, trying to work with positive thoughts and, well, finding alternative solutions. And also this… self-image thing. [Pause] Re-accepting oneself. This is what my body looks like. (13)

The route towards acceptance was depicted as a winding road of contradictory feelings oscillating between frustration and confidence. The mindfulness exercises as well as informative texts helped in moving closer to acceptance. The program had facilitated the process of coming to terms with issues previously undealt with, and to accept the new conditions.

Choosing how to deal or not to deal with the problem.

One aspect of autonomy was reflected in the conscious choice to take action in a certain direction, or making the decision not to act. Several participants described sexual and reproductive issues in terms of work that needed to be done bit by bit, or a responsibility to ‘do whatever I can to improve the situation’, ‘know where to turn to’ and to ‘work actively’. Responsibility for one’s own situation was described in both positive and negative terms, as a way of freely moving in a valued direction or as a heavy yoke carried by no one else.

An important reason for ambivalence towards the program was feeling reluctant to even think about the diagnosis and its consequences, such as confirmed infertility. Some expressed it as a more or less conscious choice to postpone dealing with certain issues until ‘later’, waiting to get stronger or for things to go back to an imagined ‘normal’ again. Inclusion in the intervention sometimes strengthened autonomy in unexpected ways. One woman, having hardly used the program because ‘it was so instinctively painful’, described how the intervention still had made her start processing emotions related to possible infertility, and finally realize that she needed individual psychotherapy.

Study limitation.

The double role of the interviewers as conceivers and evaluators of the program may have prevented participants from displaying negative attitudes, despite encouragement to the contrary. Low-users rarely spoke specifically about the program, and tended to talk more generally about the cancer trajectory or about research. In the cases where non-use seemed to be associated with bad conscience and guilt it was even more difficult to discuss experiences in-depth. The semi-structured approach may also have been suboptimal for uncovering all potentially relevant issues with both high- and low-users. To enhance reliability and validity in this respect, active probing was used and at the end of each interview, participants were asked if they wanted to add or clarify anything.

Also, very few men, all low-users, accepted to be interviewed. This is not surprising since men and especially younger men generally tend to have lower participation rates in survey-based research, a phenomenon that has also been confirmed in young adult cancer survivors [35]. The ratio of men to women was already low in the main study and had decreased even further in the present subsample. 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 disorders or as hypothesized on the basis of data from earlier studies [37]. This conclusion is supported by our findings, but does not fully explain why the men who were interviewed for the present study (one of which had testicular cancer, the other three hematologic cancers), despite scoring above the cut-off level for the intervention, stated they had no particular sexual or fertility problems and therefore substantially felt the program was not “for them”. 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]. The lack of male perspective nevertheless limits inferential generalization [20] to the population of male cancer survivors, and warrants further research focusing on the specific concerns of young adult men with diagnoses such as brain tumors or hematologic malignancies, where available treatment options likely are detrimental to sexual and reproductive function [2].

Finally, while a deductive approach is not recommended in the original Framework approach [20], it has been applied in various studies [33, 39–41] and Framework clearly supports simultaneous sorting and interpretation of data. A deductive-abductive methodology involves the risk of over-interpreting data according to the predefined abstract themes. To counteract the risk of theoretical overreliance, the authors had frequent discussions concerning the interpretation of findings, including checking back against raw data as recommended [20].