A Qualitative Analysis of Patient Narratives Describing Experiences of Radiotherapy for Gynaecological Cancer: Impacts on Social, Personal and Sexual Lives

Abstract

Background: Studies that have gathered patient experiences of radiotherapy for gynaecological cancers have described anguish related to body image, lack of control, social isolation, lack of social support, mystification and self-criticism. Frequently, outward experiences of side effects are presented as ‘necessary suffering’ hampering attempts to gain understanding of what can be done to offer adequate support. This project aimed to address this gap in understanding through analysis of detailed patient accounts of how radiotherapy impacts on their bodies and their social, personal and sexual lives. Methods: A qualitative study by means of collection of narratives (written, audio or video recorded journal entries) was conducted between September 2020 and August 2021. 34 women submitted narratives relating to their experiences of radiotherapy treatment for cervical, endometrial, vulval or ovarian cancer. Participants had all received radiotherapy for gynaecological cancer up to 25 years previous. Results: The most prominent feature of the narratives related to patients not being listened to or not being heard. Seven principal areas for developing conversations for support were identified. Conversations about: (1) Life, (2) Treatment, (3) Late Effects, (4) Communication, (5) Sexual Selves, (6) Dignity and (7) Trauma. Conclusions: The study offers insights into the experience of undergoing radiotherapy for gynaecological cancer and the support required. Further work needs to be done on improving listening to patients’ experiences and ensuring care is patient centred moving forward.