Aims: 50% of people with ovarian cancer report fear of cancer recurrence or progression (FCR). Whilst there is growing research exploring patient FCR, little is known about caregiver FCR. To date, caregiver FCR research has predominately been conducted through the lens of patient conceptualisations, limiting the development of caregiver-specific models, measures, and interventions. The aim of this study was to explore experiences of FCR among caregivers of people with ovarian cancer.
Methods: Semi-structured telephone interviews were conducted with caregivers of people with ovarian cancer. Participants, recruited through Ovarian Cancer Australia, also completed a short online survey collecting participant and patient demographic characteristics, information about the patient’s disease and caregiver levels of FCR using the Fear of Cancer Recurrence Inventory (Caregiver) (FCRI-c). Qualitative interviews explored caregiver fears, how the fears and concerns were experienced and the frequency and timing of FCR. Thematic analysis was used to analyse the results.
Results: 24 caregivers (54% male) participated in an interview. Most caregivers were providing care for their partner (n = 14). Thematic analysis revealed four inter-related themes and additional sub-themes: 1) Fear and worry; 2) Liminality; 3) Hopelessness and 4) Caregiver’s role as protector. Underpinning the identified themes was an overarching fear of one’s family member dying. Dual in nature, the protector role functioned to protect both the patient and caregiver, explaining various behaviours.
Conclusions: Aspects of FCR unique to the caregiver were identified. Caregivers play a crucial role in supporting people with ovarian cancer and are also impacted by worries and concerns of cancer recurrence or progression. In the context of ovarian cancer, caregiver FCR is conceptually different to patient experiences. Further research is critical to determine whether caregiver FCR is conceptually similar across cancer types. This research is the first step in the development of interventions tailored to caregivers need.