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

Abstract

Purpose The impact of cancer diagnosis and treatment on sexual quality of life (SQoL) is a significant and often neglected issue in the treatment and survivorship period of young gynaecological cancer survivors (YGCS). This study sought to explore women’s lived experiences to understand how to protect and improve SQoL. Methods A qualitative study with women aged 18–45 and pre- or perimenopausal at diagnosis (n = 15). A thematic analysis was performed in NVivo. Participants also completed a pre-interview questionnaire and The Female Sexual Distress Scale-Revised (FSDS-R). Results YGCS experienced high psychosexual distress. Notably, seven themes were identified: adjustment, confidence, fear, loss, shame, trauma, and communication. Gynaecological cancer (GC) treatment interfered with everyday life and had a long-term impact on mental, physical, and emotional health, with many reporting an altered sense of self, body image and sexual identity. Single women felt vulnerable in new relationships, while partnered women reported low sexual desire and guilt about sexual difficulties. Open communication, emotional intimacy, and an acceptance of the ‘new normal’ buffered the trauma of cancer and were vital to relationship satisfaction. Lastly, absent, or blunt patient-clinician communication contributed to psychosexual distress. Conclusion GC interferes with sexual function, partner relationships, psychosexual wellbeing, and quality of life. A better understanding of the lived experiences of YGCS can help healthcare providers to adopt a holistic, patient-centric, and multidisciplinary approach to SQoL. YGCS want psychosexual communication and support, across all stages of treatment and care. Healthcare providers should initiate and normalise conversations on the impact of treatment on SQoL.

Redefining sexual health after gynaecological cancer: Lived experiences from Gynea, a digital rehabilitation programme

“…Previous research has shown that nurses are considered good communication partners regarding sexuality (Roussin et al, 2023). To receive information and talk about challenges is experienced to help allay concerns about sexual life and manage sexual problems (Chow et al, 2016), something that was experienced by the women in this study.…”

“…Even though the women in our study expressed a conscious awareness of not pressuring themselves into unwanted sexual activity, the guilt for rejecting their partners' sexual needs simultaneously put their own need for closeness at stake. Previous studies confirm that women experience guilt when they have difficulties engaging in sexual activity following gynaecological cancer (Roussin et al, 2021(Roussin et al, , 2023Vermeer et al, 2016). Unfortunately, having sex as an obligation can deprive women of sexual enjoyment and is associated with negative sexual and relational outcomes (Georgieva et al, 2023).…”

“…Besides the physical dimension, gynaecological cancer impacts women's overall quality of life. Research (Olesen et al, 2023;Roussin et al, 2023;Wilson et al, 2020) has shown its impact on female identity, psychosexual wellbeing and partner relationships and their sense of womanhood (Fischer et al, 2019;Vermeer Patient or Public Contribution: Twenty gynaecological cancer survivors contributed by sharing their experiences from the sexual health module in Gynea.…”

“…However, the sexual health challenges that follow gynaecological cancers are complex. Previous research underscores the multifaceted impact of cancer on women's sexual health and identity, encompassing physical, emotional and psychosocial dimensions (de Souza et al, 2021;Roussin et al, 2021Roussin et al, , 2023Sears et al, 2018). The multidimensional aspects of sexual health are also addressed by the World Health Organization (WHO, 2017), which defines sexual health as physical, emotional, psychological and social wellbeing and not merely the absence of disease, dysfunction or infirmity.…”

“…After diagnosis and treatment for gynaecological cancer, women suffer from a range of challenges. In particular, sexual health and relationships represent significant concerns, as indicated by several studies (Hubbs et al, 2019;Roussin et al, 2023;Sears et al, 2018;Sekse et al, 2019). Furthermore, the literature highlights that challenges related to sexual health have also been among the most frequently reported unmet needs in gynaecological cancer survivors (Ashmore et al, 2020;Beesley et al, 2017;Faller et al, 2019;Galica et al, 2021;McCallum et al, 2017;Roussin et al, 2021;Sekse et al, 2019;Vermeer et al, 2016).…”