Aims: Fear of cancer recurrence (FCR) is one of the most common unmet needs for cancer patients and caregivers. Yet little is known about the potentially unique nature of caregiver FCR. The paucity of research has hindered the development of empirically driven and psychometrically valid models, measures and interventions specific to caregiver FCR. Our research aimed to address this gap by qualitatively exploring the features and impact of caregiver FCR.
Methods: Eighteen semi-structured telephone interviews with cancer caregivers were conducted to explore the content and impact of caregiver fears and worries about cancer recurrence or progression. Data analysis used a Framework Approach.
Results: Qualitative analysis identified three themes (1) fear of the patient suffering, (2) the need to protect the patient from a recurrence and/or cancer-related distress, and (3) caregiver’s sense of unpreparedness and uncertainty. Underpinning these themes was an overarching sense of personal responsibility for the life of the patient. This overarching theme was identified as a key driver of caregivers’ personal and patient-centred fears.
Conclusion: Our findings confirm caregiver FCR differs conceptually from patient FCR. It is critical for future research to acknowledge the different experiences of caregivers and prioritise the development of empirically driven theoretical models, instruments, and interventions for caregiver FCR.