Aims: For people living with cancer, fear of cancer recurrence (FCR) is a common unmet need. Informal caregivers also report concerns about FCR. It is unknown whether there are aspects that are unique to caregiver experiences of FCR. This review was conducted to identify and synthesise qualitative studies reporting on FCR in caregivers.
Methods: Following PRISMA guidelines, CINAHL, Embase, PsychINFO and PubMed databases were searched for qualitative studies. Eligibility criteria included English language, peer-review journal articles, published between January 1997 and July 2021 that reported on caregivers over the age of 18 providing care for adult cancer patients. Articles were reviewed for eligibility by two reviewers; data was extracted, and quality appraisal was conducted. The review was registered with PROSPERO [ID: CRD42020201879].
Results: Of the 2555 articles screened, 13 studies were included for review and meta-synthesis. FCR was reported as an emerging theme following data analysis, with no studies identifying FCR as a primary focus. An emergent theme uncertainty/ fear, as well as sub-themes, triggers and protective monitoring have previously been identified in cancer survivors. An additional theme, caregiver’s role as protector was unique to the caregiver experience. The meta-synthesis revealed an overarching theme, fear of losing a loved one, which linked each of the identified themes.
Conclusions: Informal caregivers play a key role supporting people with cancer. Research examining caregiver FCR has not been widely explored. These findings indicate that caregivers report FCR experiences that are unique to the caregiving role, differing from those reported by survivors. Given FCR is associated with various adverse outcomes, it is necessary to better understand caregiver experiences of FCR, in turn, facilitating the development of effective interventions which target these needs.