Participant had a mean age of 25 years and half were in a relationship (Table 2).

Table 2 Demographic and cancer related clinical data of the participants (n = 12)Themes regarding AYAs’ thoughts on sexual health and how they experience healthcare professionals address and respond to these issues

Figure 1 depicts an overview of the three main themes and related subthemes derived from the data.

Fig. 1

Themes and subthemes identified from the twelve qualitative interviews

Theme 1: “Sexuality and body image as part of the identity”The essential need of sexual well-being

A functioning, active sex life was deemed important by all participants. Most participants explained having an active sex life and expressed contentment with it before their cancer diagnosis. Furthermore, several expressed that they would like to continue having an active sex life after their cancer diagnosis (Table 3, Quote 1). In contrast, a single participant experienced that an active sex life had become secondary after the cancer diagnosis.

Table 3 Themes, subthemes, and quotesPhysical challenges related to sexual health

All participants described experiencing physical challenges related to sexual health under and/or after their cancer treatment. For the male participants, these challenges typically involved erection dysfunction and lack of ejaculation. The physical difficulties lead to concerns about engaging in sexually active (Table 3, Quote 2). Several participants shared that their erection dysfunction was remedied with medication. They did not experience any embarrassment associated with the need for medication. However, one concern was that obtaining prescriptions from their general practitioner was difficult and this often led to the inconvenience of contacting the oncology department for medical prescriptions.

Female participants described that the physical challenges were especially related to vaginal dryness due to antihormonal treatment, pain, and fatigue. These side effects decreased their libido, influencing their sexuality. However, several female participants expressed difficulties improving their decreased libido due to a lack of knowledge on reducing pain or fatigue. Furthermore, some female participants who were involved in romantic relationships shared that their level of intimacy increased due to factors such as a lack of energy or experiencing too much pain during sex. As a result, these participants prioritized intimacy to a greater extent than before cancer, making them feel closer to their partner (Table 3, Quote 3).

Altered body image and self-esteem

The physical challenges experienced by the participants in this study gave rise to mental concerns among the AYAs, particularly related to their perceived attractiveness during and after their cancer trajectory. Several participants expressed those bodily changes resulting from cancer, such as hair loss, weight gain, scars, gynecological surgery, or mastectomy, repressed their sexual desire and self-esteem. These bodily changes were a constant reminder of their cancer trajectory (Table 3, Quote 4). Furthermore, numerous male and female participants felt respectively less masculine or feminine due to their cancer treatment (Table 3, Quote 5).

Insecurity about romantic and/or sexual partners after cancer

The fear of not being a sufficient partner emerged among most of the participants. Particularly, if they would not perform sexually as they did before their cancer trajectory and compared themselves to peers without cancer (Table 3, Quote 6). In addition, some participants thought a lot about whether their current partner would consider leaving them due to their sexual challenges. Single participants also expressed concerns about how future partners would perceive their cancer diagnosis and feared potential rejection (Table 3, Quote 7).

For several participants, fertility concerns were closely linked to sexuality, and they found it challenging separating sexuality and fertility concerns when discussing future romantic and sexual relationships. However, some participants described a process where they tried to accept their sexual challenges over time instead of holding on to their frustration, including fertility concerns and their altered body image (Table 3, Quote 8).

Theme 2: “Excluding relatives in conversations about sexual health”Too old to talk about sexual health with relatives

Two participants with cancer in the reproductive organs did not mind discussing sexual health with relatives, primarily parents, because it was obvious that their sexuality was hampered due to the cancer. However, most participants expressed a strong preference for not discussing it with their parents. They perceived it as a private matter not concerning them. Two participants felt forced to discuss sexual challenges with healthcare professionals with their parents present at consultation, which was extremely uncomfortable. One of the participants thought he had to lie to the doctor to avoid involving his mother in this matter (Table 3, Quote 9).

Avoid burdening relatives with sexual health challenges

In addition to the private nature of AYAs’ sexual health, it was found that some participants argued that they did not want to burden their parents or partners unnecessarily. Conversations about sexual health were often closely tied to fertility, and several participants did not want to add further worries to their relatives regarding future risk of infertility (Table 3, Quote 10).

Theme 3: “Uncertainty how to discuss sexual health with healthcare professionals”Difficult and vulnerable to initiate sexual health

All participants openly shared information regarding their sexual health. However, during the interviews, talking about the sexual health challenges caused many participants to become upset because it was a sensitive topic. The majority explained that they wanted to discuss sexual challenges during their cancer trajectory with healthcare professionals. Nevertheless, they expressed uncertainty about how to do this because of lack of available information and resources (Table 3, Quote 11).

They also explained that they had experienced various barriers regarding addressing sexual health. It was difficult for the participants to initiate the conversation about sexual challenges, especially because they often met a new healthcare professional at every consultation (Table 3, Quote 12). If the participants initiated a conversation about sexual challenges, some experienced that the conversation was “shut down” by the healthcare professionals (Table 3, Quote 13).

Healthcare professionals rarely addressed sexual health

Several participants described that healthcare professionals rarely initiated conversation about their sexual health. One participant had a strong therapeutic relationship with her doctor for over the course of a year. Yet, she recalled that the doctor only once initiated a conversation about possible sexual challenges related to her cancer diagnosis. The participant expressed that she wanted to address the subject, but was afraid of potential awkwardness, as sexual challenges had never been addressed before. She expressed that it seemed too late to broach the topic as they knew each other too well at that point (Table 3, Quote 14). In contrast, for one participant, his doctor initiated the conversation about sexual health, and the participant appreciated this (Table 3, Quote 15).

Knowledge about cancer-related sexual health side effects

Most participants emphasized a huge need to be informed about the cancer-related side effects that could impact their sexual health. However, they felt difficulties accessing this knowledge as the healthcare professionals did not inform them systematically, neither verbally nor by handing out written materials tailored to them. Consequently, several participants searched for information online, which led them to knowledge of varying quality. The available information was often too general or too specific to relate to their situation (Table 3, Quote 16). More troublesome, one participant experienced receiving misinformation when talking to a healthcare professional about the risk of sexual transfer of cancer, making the participant believe that the cancer could be transferred through sexual activity to the partner (Table 3, Quote 17).

In contrast, the participants experienced that the youth support coordinators were knowledgeable of cancer-related side effects and were consistently available to offer advice. For instance, they provided valuable information about assistive devices to improve sexual challenges. Also, the participants mentioned that meeting the youth support coordinators and the youth facility center, Kræftværket, was a turning point on conversing about sexual health (Table 3, Quote 18).

Sharing with peers

Most participants emphasized that they appreciated discussing sexual health with other AYAs with cancer. This helped normalizing and decreased the feeling that they were the only AYA with cancer-related sexual challenges. Only when they could mirror themselves as equals it became much easier to discuss their sexual concerns openly (Table 3, Quote 19). Still, many participants explained that their opportunities to meet equals and discuss sexual health were mostly by coincidence (Table 3, Quote 20). One participant commented that discussing sexual health is easier if you experience the same challenges. However, if your challenges distinguish from the others, it can still be difficult to discuss, and one can feel alone and “left out” (Table 3, Quote 21).

Timing

Timing was deemed important to the participants when addressing sexual health with healthcare professionals. Some experienced that they had briefly been asked once about sexual health. The timing was not right for the conversation, and the topic was never brought up again. Several participants emphasized a need for a systematic approach to addressing sexual health (Table 3, Quote 22). Finally, most participants would prefer that the healthcare professionals repeatedly ask the participants about sexual health and let the participants decide whether this was the right timing.

AYAs’ suggestions on how to support conversation about sexual health

Table 4 shows the six suggestions that derived from the ideas AYAs put forth to support conversations about sexual health. These suggestions address the main barriers described in the three themes.

Table 4 AYAs’ suggestions on how to support conversation about sexual health