Aims: Informal caregivers are integral in supporting people with cancer. Fear of cancer recurrence (FCR) is reported by both survivors and caregivers, however, few studies have explored the differences in experiences. This review aimed to identify and synthesise quantitative research investigating caregiver FCR. Specifically, how FCR is measured in informal caregivers, determine levels of FCR in caregiver populations, and identify interventions developed for use in caregivers.
Methods: PubMed, PsychINFO, CINAHL, and Embase databases were searched for quantitative research examining caregiver FCR. Eligibility criteria included studies reporting caregiver FCR data of caregivers over the age of 18 providing care for a person with cancer at any stage and published in English in peer-review journal articles between January 1997 and July 2021. Two researchers reviewed articles for eligibility, extracted data, and conducted quality appraisals. The COSMIN taxonomy was used to evaluate the content and psychometric properties of the patient-reported outcome measures used to assess caregiver FCR. The review was registered with PROSPERO [ID:CRD42020201906] and followed PRISMA guidelines.
Results: Of the 2961 records screened, 33 met the eligibility criteria. The majority of studies were conducted in the USA with mixed cancer samples reporting early-stage disease. Most relationships reported on were between people with cancer and their spouse as caregiver. A variety of instruments were used to measure caregiver FCR, the majority using adapted patient instruments (n=24). Four studies reported scales developed specifically for partners/caregivers. Very few studies reported interventions addressing FCR in caregivers.
Conclusions: Quantitative research investigating FCR in caregivers has largely relied on the use of adapted patient instruments. It is difficult to determine levels of FCR in caregiver populations due to the use of multiple instruments. Further research is needed to determine the applicability of patient FCR instruments to caregiver populations, facilitating the development of interventions which effectively target caregiver needs.