Introduction

Globally, there are approximately 1.2 million new cancer cases yearly among adolescents and young adults, typically defined as individuals aged 15 to 39 years (AYAs) [1]. AYAs experience cancer during a critical period of life characterized by personal and social development, including exploration of sexual self-awareness, desires, intimacy, sexual and romantic relationships, and sexual identities [2,3,4,5]. Due to cancer and cancer treatment, AYAs face complex age-specific physical and psychological challenges, which may directly or indirectly impact physical, emotional, mental, and social aspects of their sexual health [6,7,8,9,10,11].

During treatment, chemotherapy may reduce hormones linked to libido. For males, radiation and surgery in the genital area may result in changes to blood vessels or nerves, leading to issues like erectile dysfunction. For women, in addition to radiation and surgery, anti-hormone treatment may cause vaginal dryness and atrophy [6]. Indirectly, for both male and females, treatment side effects such as fatigue may leave little energy for sex, and weight loss or gain as well as scars may impact body image and attractiveness negatively affecting sexual health [6, 12, 13]. These side effects may persist after cancer treatment as late-effects [6]. Communication regarding potential late-effects can be challenging within a clinical setting, influenced by a range of factor [14,15,16,17,18]. Previous research uncovering the consequences of cancer and its treatment has primarily relied on quantitative studies with a cross-sectional design [19,20,21]. Consequently, there is a need for more in-depth research to explore the perspectives of AYAs with cancer concerning their sexual health.

Although qualitative studies on sexual health in AYAs with cancer have been conducted in the United States and United Kingdom [19,20,21,22], more knowledge is needed from countries with different sexual culture and norms e.g., Denmark. This is due to the fact, that the social, economic, and political context plays a crucial role in shaping our understanding and expression of sexual health, leading to cross-cultural variations [11, 23].

The aim of this study was threefold: (1) to explore Danish AYAs thoughts concerning sexual health with a particular focus on sexuality, intimacy, and body image throughout their cancer trajectory, (2) to investigate how AYAs experience that their healthcare professionals address and respond to sexual health issues, and (3) to identify AYAs’ suggestions on how to support conversation about sexual health.

Methods

Design and setting

This qualitative study employs a phenomenological approach to explore the thoughts of AYAs with cancer regarding sexuality, intimacy, and body image throughout their cancer trajectory. The study was carried out at the University Hospital of Copenhagen, Rigshospitalet, from January to February 2023. To ensure methodological rigor and comprehensive reporting, the study adhered to the COnsolidated criteria for REporting Qualitative research Checklist in its execution and subsequent reporting of findings [24] (see Supplementary file 1).

Participants and recruitment

Inclusion criteria were: AYAs diagnosed with cancer within the age range 18–29 years within the last five years. Purposive sampling was employed to ensure diversity in terms of gender, age, cancer diagnosis, and relationship status. Recruitment was conducted through a closed Facebook group created specifically for AYAs connected to “Kræftværket,” a youth support center for AYAs with cancer at the University Hospital of Copenhagen, Rigshospitalet.

Data collection

Twelve individual face-to-face semi-structured interviews were conducted by the first authors, comprising a female medical doctor Ph.D. student (L.B.) and a female physiotherapist Ph.D. student (M.A.) with prior experience conducting qualitative interviews. The interviewers did not engage in the participants’ cancer trajectory. The utilization of individual semi-structured interviews provided a platform for participants to openly express their thoughts and share personal experiences regarding sexuality, intimacy, and body image throughout their cancer trajectory [25]. Furthermore, the approach facilitated in-depth exploration enrichening the data [25]. The interviews followed a semi-structured interview guide outlined in Table 1. The guide was designed in alignment with the study’s aim and with inspiration from the EORTC SHQ-22 [26] and the Danish, national survey (Project SEXUS) [27]. All interviews took place in a quiet office at the University Hospital of Copenhagen, Rigshospitalet. The location of interviews was, since the participants were recruited from Kræftværket, situated at the Department of Oncology at the same hospital. We wanted to secure a safe environment at the same department where the participants received treatment or were in follow-up. If the participants wanted to be interviewed at another location, we offered the possibility.

Table 1 The semi-structured interview guide
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The interviews were audio-recorded and had an average duration of 28 min, ranging from 14 to 42 min.

Data analysis

Audio recordings were transcribed verbatim, with each participant assigned an I.D. number to protect their identity. Thematic analysis was used to analyze data, drawing from Malterud’s systematic text condensation [28] and Braun and Clark’s reflexive thematic analysis [29, 30].

Two authors (L.B. and M.A.) independently familiarized themselves with the data by reading all transcripts consecutively line by line as the interviews were conducted. After ten interviews, the authors recognized the same themes occurring and after 12 interviews no further new themes appeared, in accordance with the concept of data saturation [31].

Subsequently, they coded each transcript inductively, identifying themes related to AYAs’ thoughts on sexual health, their experiences with healthcare professionals addressing these issues, and suggestions to support the conversation about sexual health. The two authors then collaborated iteratively, categorizing similar themes, and resolving disagreements until a consensus was reached. Subsequently, the remaining three authors (M.H., P.B., H.P.) each independently reviewed three transcripts line by line. All authors then discussed to reach a consensus on the themes and suggestions. Afterward, L.B. and M.A. re-read the transcripts to extract relevant quotations and data related to these themes and suggestions. Lastly, a final list of main themes and sub-themes was outlined.

Ethics

In accordance with the Declaration of Helsinki, all participants were provided with written and verbal information regarding the aim and design of the study prior to participation. Informed written consent was obtained from all participants, and they were informed that they could withdraw their consent at any time without treatment consequences. The local Data Protection Agency of University Hospital of Copenhagen, Rigshospitalet approved the study (Journal number: P-2022–902). Due to Danish law ethical permission was not obliged for this type of study.

Results

 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)
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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
figure 1

Themes and subthemes identified from the twelve qualitative interviews

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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 quotes
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Physical 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
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Discussion

This study yielded three themes regarding Danish AYAs’ thoughts concerning sexual health; (1) sexuality and body image as part of the identity, (2) excluding relatives in conversations about sexual health, and (3) uncertainty how to discuss sexual health with healthcare professionals. Finally, six suggestions on how to support conversation about sexual health were proposed by the AYAs.

Our results stressed that sexuality and body image were linked to the AYA’s identity and confirmed existing knowledge that AYAs experience challenges, changes, and shifts related to their sexual health during the cancer trajectory [10, 13, 18, 21, 32]. Others also argue the risk of decreased sexual satisfaction due to these challenges [9, 33]. In contrast to this, some of our participants enabled with time to accept the challenges and adapt to their new sexual health circumstances. This phenomenon aligns with the concept of response shift in quality-of-life research, where patients over time learn to cope with e.g., new symptoms. Despite persistence of the symptoms, patients often report increase in quality of life over time [34].

Males and females experience challenges related to sexual health—for males, this was especially erectile dysfunction and problems with ejaculation. For females, vaginal dryness and atrophy appeared often. The findings physical changes resemble previous findings [33, 35]. Both genders experienced change in body image and they felt less feminine or masculine due to their cancer and its treatments. This engendered insecurity when engaging in romantic and/or sexual relationships. Graugaard et al. [22] reported in a cross-sectional study that 23.6% of AYAs with cancer (N = 151) experienced no discernible alterations in desires, flirtation, or romantic partnership after their cancer diagnosis while 40.6% of the participants perceived a positive change in their relationship after their cancer diagnosis [22]. We found that a positive change due to cancer was mainly related to intimacy.

Overall, the participants preferred refraining from involving relatives in conversations concerning sexual health. In line with our findings, others have found that AYAs and healthcare professionals consider the parents’ presence as a barrier to initiate conversations about sexual health [16, 36], because AYAs perceive their sexual health as a private matter. For many participants in our study, sexual health issues were closely tied to concerns about fertility. Therefore, we observed another barrier in discussing sexual health issues with relatives, as AYAs sought to shield their relatives from additional worries regarding the potential risk of infertility. Similar to others, AYAs in our study lacked “split visit” consultations [37] and suggested dedicated consultations focusing solely on sexual health to ensure that discussions about sexual health are held in privacy, without the presence of relatives.

Most participants experienced that sexual health issues were rarely addressed by healthcare professionals, despite the AYAs’ need to receive information about how cancer impacts sexual health and desire to discuss how to manage their sexual health issues. This finding is aligned with results from a cross-sectional study (N = 56) by Albers et al. [36] who found that only 41% of AYAs did receive information about sexual health from a healthcare professional, and only 21% found the information satisfactory. Also, a nationwide population-based study (N = 1010) by Bergström et al. [38] reported that men to a higher extent than women reported having received information about the potential cancer-related impact on their sex life (68% vs. 54%, p < 0.001). The AYAs with cancer participating in our study provide suggestions for what and how to provide information about sexual health (see Table 4).

In our study, some participants experienced that if they initiated a conversation about sexual health, the topic was quickly shut down. Both Perez et al. [17] and Moules et al. [39] describe sexual health as a taboo issue for healthcare professionals in relation to AYAs with cancer. Graugaard et al. [22] also portray the “2-way taboo” where conversations related to sexual health seem difficult for both the AYAs with cancer and healthcare professionals. Finally, Frederick et al. [15] found in a cross-sectional study that conversations about sexual health initiated by healthcare professionals often focused on medical issues such as contraception.

A qualitative study (N = 14) by Albers et al. [40], interviewing healthcare professionals, stated that they were responsible for facilitating AYA’s sexual health needs. Still, they experienced barriers including finding the right timing, clear roles of responsibility to address the topic, and lack of education [40]. Our study also found that the timing to discuss sexual health was an important factor. In line with others, it was, however, difficult for the AYAs to state when the optimal time was [16]. Nonetheless, repeatedly addressing the topic throughout the cancer trajectory was suggested. Furthermore, AYAs suggest using predefined topics when discussing sexual health to ensure all areas are covered. Greimel et al. [41] have validated a generic questionnaire, “Sexual Health 22,” (SH22), addressing potential sexual issues affecting quality of life. To our knowledge no AYA specific questionnaire on sexual health exist and it no previous studies have examined if the SH22 adequately address AYAs sexual health.

Discussing sexual health with peers with cancer was emphasized as an advantage, making the AYAs feel more “normal.” However, other research has revealed that peer-to-peer also has some disadvantages, as AYAs, through peer-to-peer support, may be confronted with peers’ adverse events, increasing anxiety and fears [42,43,44]. In addition, some AYAs refrain from peer-to-peer support as they do not want their cancer disease to be a part of their narrative [42, 44]. Such disadvantages were not apparent in the present Danish study. This may be because all participants were recruited from a youth support center and social organization for AYAs with cancer, involving a high degree of peer-to-peer support or can be grounded in cultural differences.

Further implications

Comprehending AYAs’ perspectives on sexuality, intimacy, and body image, along with their insights on supporting sexual health discussions, may enhance healthcare professionals’ ability to address AYA’s sexual health needs. This also support the need of developing nationwide guidelines at to help health care professionals to include this topic in the consultation during the cancer trajectory. Furthermore, a validated questionnaire or patient concern inventory identifying age-specific sexual health is needed to improve patient-health care provider dialog and research. As for now, the European Organization for Research and Treatment of Cancer (EORTC) has developed a quality-of-life questionnaire to assess sexual health in cancer patients. However, the questionnaire is not age specific [41].

Strength and limitations

A strength in this study is its diverse sample, which encompassed a wide range of AYAs with varying genders, ages, cancer diagnoses, and relationship statuses. However, a limitation is that participants were exclusively recruited from a single peer-support center. We cannot exclude that the participants were more resourceful compared to other AYAs with cancer. These possible limitations can potentially lead to selection bias and reduce the external validity.

Conclusion

Participants in this study experienced changes in sexual health during their cancer trajectory, with lasting effects on body image and self-esteem. However, some participants accepted the changes over time. Initiating conversations with healthcare professionals proved challenging due to various factors, including the presence of relatives, as the AYAs wanted to shield them from additional concerns. To improve support regarding sexual health, AYAs suggest healthcare professionals consistently invite AYAs to discuss this and consider using a systematic dialog tool.