Lived experiences of sexual wellbeing and psychosexual needs among adolescents and young adults with sarcoma: a...

Sexual wellbeing is an important yet often overlooked aspect of quality of life for many Adolescent and Young Adult patients with sarcoma. Given the significant impact of this issue and the dearth of previous research, this study aims to explore the sexual wellbeing and psychosexual needs of this group.

A descriptive, phenomenological, qualitative study was conducted. Open-ended, face-to-face interviews were used to achieve data saturation, following Giorgi's approach. The Lincoln and Guba criteria and the COREQ guidelines were used to enhance methodological rigor and reporting quality. For descriptive purposes, information was collected on sociodemographic, clinical, quality of life and patient distress issues. Given the complexity of obtaining informed consent from parents or legal guardians of minors, the study included participants between the ages of 18 and 39 at the time of data collection.

Twenty interviews with patients aged 18-39 years were collected. One overall domain, five themes, and 21 related sub-themes emerged from the thematic analysis. They were mainly related to the impact of the cancer diagnosis on patients' priorities, scars and their symbolism and relationships with healthcare professionals and partners to promote sexual wellbeing. Patients reported relatively low levels of symptoms and high levels of functioning. The main symptom was insomnia, whereas fatigue and pain were less severe. Slight impairments were observed in the subject's emotional functioning. 70% of patients had clinically significant Distress (≥4).

Cancer significantly impacts the emotional relationships and sexual health of patients. A lack of information and taboos surrounding sexuality in oncology are significant barriers to patients' psychological and physical wellbeing. Psychologists and nurses, in particular, should implement strategies to encourage open discussion about sexuality within this patient group.