Understanding cancer-related distress and supportive care needs in women with gynaecological cancer: a thematic analysis

Objectives: An estimated 35% to 57% of women with gynecological cancer report elevated levels of distress and while some distress is anticipated as people adjust to a cancer diagnosis and its treatment, severe or persistent symptoms can negatively impact women's health. This paper sought to understand women's experiences of cancer-related distress and their sources. Study design: Data were collected via semi-structured focus groups from women recently treated for gynaecological cancer who were attending a hospital-based cancer service. Focus group sessions were audio-recorded and field notes were taken during discussions. Data were interpreted using simple inductive thematic analysis with 70% or greater agreement. Results: The central themes for women participating in focus groups included uncertainty about the future and anxiety, closely followed by concerns around treatment-related effects. For women less than 45 years of age, other important concerns related to sexuality and intimacy, changes in their physical appearance (including post-treatment vaginal changes), and anxiety whereas for women 45 years and over, other concerns were associated with knowledge of cancer support services, fatigue and sleep disturbance. Conclusions: For women with gynaecological cancer, the treatment-related effects can be associated with significant and unexpected distress. Among focus group participants there were many shared concerns, though some themes were more common in specific sub-groups. In younger women, distress around appearance/sexuality/intimacy predominated and these concerns were often not addressed within the context of current cancer care services. This research highlights the importance of providing a supportive environment to enable women to discuss distress as it pertains to their cancer experience and personal circumstances.