The impact of ovarian cancer on individuals and their caregivers: A qualitative analysis.

Abstract

Ovarian cancer remains an understudied cancer with poor prognosis, few effective treatments and little understanding of the how individuals and their families face the challenges and uncertainty following diagnosis. This study synthesized the subjective experiences of individuals and their caregivers in the face of the uncertainty produced by the disease. Qualitative data were obtained from the Ovarian Cancer Australia 2017 Consumer Survey. An inductive thematic analysis was conducted on responses from 219 individuals with ovarian cancer and 78 caregivers. Nine themes were identified from the individual's responses and seven themes from the caregivers. For both groups, the uncertainty created at diagnosis led to a cascade of complex responses. For the individuals, uncertainty gave rise to fears for the future, which were exacerbated by unmet healthcare needs or treatment-related difficulties. For some individuals, these fears led to disruption to their lives, isolation and emotional distress. For others, helpful coping styles and social support protected them from these negative consequences. For caregivers, the processes were similar, but uncertainty predominantly led to feelings of hopelessness and "survivor guilt." Our results identified processes that may guide future interventions and research targeting unmet needs and protective factors for individuals with ovarian cancer and their caregivers. Findings also suggest the potential to facilitate effective support between individuals and their caregivers.