Care provided by older adult caregivers to a spouse in active cancer treatment: a scoping review

PURPOSE: Due to population aging, the number of older adults with cancer will double in the next 20 years. There is a gap in research about older adults who are the caregiver of a spouse with cancer. Therefore, this review seeks to answer the overarching research question: What is known about the association of providing care on Health-Related Quality of Life (HRQOL), psychological distress, burden, and positive aspects of caregiving for an older adult caregiver to a spouse with cancer? METHODS: This scoping review was guided by the framework of Arksey and O’Malley and refined by Levac et al. Comprehensive search strategies were conducted in Medline, Excerpta Medica Database (EMBASE), PsycINFO, and Cumulative Index to Nursing and Allied Health Literature (CINAHL) from inception until April 15, 2021. Two independent reviewers screened abstracts, full text, and completed data abstraction. A gray literature search and two stakeholder consultations were conducted. RESULTS: A total of 8132 abstracts were screened, and 17 articles were included. All studies outlined caregivers provided preventive, instrumental, and protective care to a spouse in active cancer treatment. However, the time spent on caregiving was rarely examined (n = 4). Providing care had a negative association on HRQOL, perceived burden, and psychological distress outcomes. Five studies examined positive experiences of caregivers. CONCLUSION: The scoping review findings highlight the informal care provided by older adult caregivers to a spouse with cancer and how the care provided is associated with HRQOL, burden, psychological distress, and the positive aspects of caregiving. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s00520-022-07176-2.