Toward the development of a model of caregiver-specific fear of cancer recurrence: a systematic review

Abstract

Supplemental Digital Content is Available in the Text. Abstract Background: Fear of cancer recurrence (FCR) is the most common psychological issue for cancer survivors, and research shows that caregivers are as fearful of the cancer returning as patients. However, there is relatively little research on caregiver FCR. The aim of this systematic review was to provide a metasynthesis of qualitative research to determine (a) whether caregiver FCR was conceptually similar to FCR among survivors, (b) to determine any specific issues that were different for caregivers compared with survivors, and (c) to present a hypothesis-generating model of caregiver FCR to inform future theoretically grounded caregiver-specific FCR research. Methods: Using keywords relating to FCR, caregivers, and cancer, CINAHL, PsycINFO, PubMed, and Embase databases were searched. Qualitative studies reporting on FCR in caregivers published between January 1997 and July 2021 were included. Results: Following PRISMA guidelines, 13 articles were included for review and metasynthesis. Overall, there was a paucity of qualitative research exploring caregiver FCR. Metasynthesis revealed 1 theme, uncertainty/fear previously identified among survivors and a theme unique to the caregiver's experience of FCR: caregiver's role as protector. An overarching theme, fear of losing a loved one, explained the relationship between each of the identified themes, acting as a driver of caregiver FCR. Conclusions: This review highlighted, that although similarities between survivor and caregiver experiences of FCR exist, key elements that underline caregiver FCR are conceptually different to the fear experienced by cancer survivors. We propose a new model of FCR that incorporates aspects unique to caregivers which requires further investigation. The proposed model provides an important foundation for further research exploring caregiver FCR. Given caregivers with higher FCR experience more caregiver burden, it is essential to better understand their experiences. This will facilitate the development of interventions which effectively support caregivers, enhancing their capacity to support survivors.