Sexual quality of life in young gynaecological cancer survivors: a qualitative study

We performed a qualitative study of women living in Australia and who were aged 18–45 and pre- or perimenopausal at their GC diagnosis. We conducted individual interviews on a video conferencing platform, Zoom. Semi-structured interviews allowed for an in-depth exploration of participants’ lived experiences and perspectives on SQoL. Three pilot interviews with YGCS ensured clarity of the questions and robustness of the interview design. Data from the pilot interviews was not included in the final data set but helped to a) streamline the interview schedule, b) ensure participants felt comfortable discussing sensitive topics on Zoom, and c) confirm that scheduling 60–90 min was sufficient. Participants also completed pre-interview questionnaires. The research received ethical approval by USC Human Research Ethics Committee (S201448).

The approach to recruitment capitalised on leveraging ‘influencers’ (individuals well known in the YGC community), charities and social media communities providing GC education and support. A grassroots campaign using a combination of social media posts, direct messaging, email and website mentions was implemented to recruit participants with an emphasis on organic reach and content shareability [20]. Achievement of data saturation guided the final number of participants interviewed.

Participants’ consent and eligibility were registered via an online questionnaire. Eligible participants were 1) diagnosed with GC between 18–45 years old 2) pre- or perimenopausal at diagnosis (as defined by the presence of at least 2 menstrual periods within 6 months of diagnosis), 3) residing in Australia, and 4) willing to discuss their experience on sexuality and cancer. Women were excluded if they had insufficient English, no access to a smart phone or computer with a reliable Internet connection, recurrence of GC or a diagnosis of another cancer or medical condition that could have impacted their ability to participate. The study was open to single and partnered women.

Participants were given information in the Research Project Information Sheet about what would be included in the interviews. Upon confirming their consent via a secure online platform, a unique 4-digit code was randomly assigned to protect anonymity and to match data across time. Participants completed three short questionnaires. The first questionnaire consisted of nine screening questions to confirm eligibility. The second questionnaire was the Female Sexual Distress Scale-Revised (FSDS-R), a 13-item screening questionnaire used in other studies with GCS [21, 22]. The third questionnaire aimed to create an overall profile of the participants and to identify any characteristics that may benefit future research. Interviews were arranged via email and lasted 60–90 min. The interview guide covered four topics informed by research [13]: (1) the impact of cancer and is treatment on SQoL, (2) relationship satisfaction and emotional support, (3) the role of the healthcare system, and (4) the adaptation to a new normal.

Questionnaire data was collected and analysed as descriptive statistics using an online data capture tool, Qualtrics [23], and then imported into Excel. All interviews were transcribed verbatim. A thematic analysis [24] of interview transcripts was completed using a qualitative data analysis software, NVivo Version 1.5 [25]. Our analysis followed the steps suggested by Braun and Clarke [26]. According to the authors, thematic analysis is used to tell a story into patterns of meaning (themes) across a data set to answer a research question. Thematic analysis was chosen as a data analysis method for its flexibility in “giving voice” to the lived experiences of YGCS [26]. Thus, our approach was mainly inductive as we coded from the data based on participants’ experiences to uncover how GC impact the SQoL of YGCS. To a lesser extent, our approach was also deductive as we drew on theoretical constructs from the Salutogenic Theory [19] to unveil meaning that relates to all aspects of the person. For quality control, the first author, in consultation with the co-authors with expertise in different areas, followed a two-stage review process [27]. Themes were first organised in categories from data collection questions (initial codes). Then, as we became more familiar with the data, themes were reviewed against the coded data and rearranged into new themes (code clusters) that tell the story as it aligns with our research question [28]. Lastly, the Critical Appraisal Skills Programme (CASP) checklist for Qualitative studies [29] was used as standardised tool to critically appraise the process undertaken.

Fifteen participants joined the study from across Australia (Table 1), with almost an even split between cervical (n = 8) and ovarian (n = 7) cancer. All FIGO stages (i.e., cancer stages determined by the International Federation of Gynecology and Obstetrics) [30] and 18–45 age groups were represented. Six participants reported a change in partner or relationship status since diagnosis. One participant was in a same-sex relationship. Cancer treatment varied between participants, including surgery, chemotherapy, radiotherapy, and hormone therapy, with the most common treatment hysterectomy. Nearly two thirds of participants had completed treatment (64%). Almost all questionnaire respondents reported being sexually active (93%), however results from the FSDS-R and interviews suggest low sexual activity (defined as sexual relations and self-pleasure) and severe psychosexual distress. Forty percent of women said they never tried vaginal dilation, but many wished they had known it was an option.

Figure 1 shows that most participants were experiencing psychosexual distress (a total score of greater than or equal to 11 indicates sexual distress). All participants, except two, reported signs of sexual distress. The most common concerns were feeling guilty about sexual difficulties and being bothered by low sexual desire.

Seven main themes were identified in this analysis: adjustment, confidence, fear, loss, shame, trauma, and communication. Figure 2 shows a thematic map.

Adjustment to gynaecological cancer was reported as an ongoing process of solving cancer-related problems in everyday life, managing body changes, and navigating new dynamics in relationships.

Fear was expressed in two ways. First, cancer-related fears, “I worry about, is it going to come back or am I going to make someone sick. It never really leaves the back of your mind” (#9547). Second, sex-related fears and the resulting impact on sexual desire and partner relationships, “My sex drive is almost non-existent because I'm worried about sex. I'm worried that it'll hurt… Our sex life nearly broke us up” (#5137). Sexual fears also extended to the (perceived) partner’s fear of causing harm, “I think he was quite afraid to come near me and quite afraid to hurt me” (#7987).

Loss comes in many forms through a gynaecological cancer journey and can be accompanied by feelings of shock, fear, sadness, anxiety, anger, and acceptance. Table 3 shows ways in which YGCS may experience loss through diagnosis, treatment, and recovery. In this context, YGCS morn aspects of their pre-cancer life or the life they thought they were going to have. Loss appeared to be aggravated by comparing one’s life to someone else’s or to their own pre-cancer life.

Shame was expressed in two ways. First, body shame, “I feel a little self-cautious in myself, a bit gross. It’s really that guilt and that shame for me.” (#9547) and “Physically, I felt unconformable, I’ve got a big scar down the middle of my belly. I had no hair” (#4845). Second, sexual shame, “I’ve always felt that was my fault. Everything was my fault in the bedroom if it wasn’t working” (#5166). Bleeding during sex was also embarrassing even in long-term committed relationships, “I bled quite a bit. I was embarrassed” (#7987).

Additionally, stigma can feed into shame. Cervical cancer survivors reported that the “HPV virus and sexual stigma attached to it… it’s not helping women to have sexual quality of life” (#5137). For example, “A male doctor spoke down to me. You've got that sense of, ‘You've got an STD, you should have been more careful’ He really stigmatised that. It’s embarrassing.” (#9547) The need for change through “spreading awareness and breaking down the stigma” (#5453) extends to female sexuality, “It’s very much ingrained in us, particularly as females, not to talk, or be seen as being demanding or overly sexual. Cultural change needs to happen in that, females have needs and desires sexually as well” (#3611).

The trauma of cancer diagnosis and treatment impacts SQoL. Phrases such as “We don’t have a sexual life at all. I really felt sort of violated in a way” (#2698) and “the trauma that came with the treatment… people constantly in that space, monitoring it” (#1634) were used to describe medical trauma. Lastly, the cancer experience can lead to post-traumatic stress and a sense of losing control over one’s life and body.

It’s so hard. I did see a psychologist but it's PTSD. You develop it because you want to control certain aspects of your life and cancer takes that away from you. The biggest thing is, I developed a massive disorder with eating and exercise. It took four years to get on top of it all. (#5453).

YGCS expressed needing communication and support to cope with the aftermath of gynaecological cancer that hinders SQoL.