A qualitative exploration of fear of cancer recurrence in caregivers

Abstract

Objective 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. 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. Conclusions Our findings confirm the conceptual differences between patient and caregiver FCR. Future research must therefore acknowledge the unique experiences of caregivers and prioritise the development of empirically driven theoretical models, instruments, and interventions for caregiver FCR.

Fear of cancer recurrence in ovarian cancer caregivers: A qualitative study

“…1 Our findings indicate caregiver FCR is underpinned by fear of one's family member dying, driving behaviours to protect the caregiver and person with cancer. These unique elements align with previous studies 16 and proposed models. 14 Given prior caregiver FCR research has predominately relied on patient/survivor measures, models and interventions, it is critical that future research incorporates elements specific to the caregiver experience.…”

“…In a recent study by Banks and colleagues, sense of responsibility for the survivor's life was reported as the key driver of FCR. 16 This was not the case in our study, with caregiver FCR driven by fear of one's family member dying. It may be that the central driver of FCR differs in relation to the person's prognosis, given that less than a third of the participants in that study had experienced a recurrence.…”

“…A recent study by Banks and colleagues described similar themes encompassing protective monitoring and protective buffering. 16 A daily diary study among breast cancer survivors and their caregivers also found attempts to limit discussion of negative emotions were associated with increased FCR. 39 Furthermore, a systematic review that examined the relationship between interpersonal factors and caregiver FCR, reported social support and increased communication were associated with lower FCR.…”

“…The current study seeks to extend findings from Banks et al 16 by investigating FCR experiences specifically in those providing care for a person with ovarian cancer. Ovarian cancer presents specific challenges.…”

“…These findings were supported in a recent study by Banks and colleagues which qualitatively explored caregiver experiences of FCR. 16 In this study three themes, fear of the patient suffering, the need to protect the patient, and caregiver's sense of unpreparedness and uncertainty were identified. An overarching theme, sense of personal responsibility for the life of the patient was also identified.…”