Physical pain among family caregivers to older adults: A scoping review of the literature

• Published in: Journal of the American Geriatrics Society (JAGS) 2024-09, Vol.72 (9), p.2853-2865
• Main Authors: Turner, Shelbie G., Pillemer, Karl, Demetres, Michelle, Heaney, Kathleen, Joshi, Sama, Luebke, Matthew, Messay, Gelila, Reid, M. Carrington
• Format: Article
• Language: English
• Subjects: Aged; Caregivers; Caregivers - psychology; caregiving; Dementia disorders; Female; Humans; Literature reviews; Male; Older people; Pain; Pain Measurement; Research design; scoping review
• ISSN: 0002-8614; 1532-5415; 1532-5415
• DOI: 10.1111/jgs.19037

Background and Objectives Scholarship on the health of family caregivers to older adults continues to expand. Although existing research suggests that many family caregivers experience pain, which impacts their ability to perform caregiving tasks and is associated with care recipients' unmet needs, the scope of research on family caregivers' pain remains poorly characterized. We conducted a scoping review of research on pain among family caregivers to older adults to characterize existing evidence and identify knowledge gaps. Methods We searched multiple databases spanning from January 2012 to July 2023, identified eligible studies using predefined inclusion/exclusion criteria, and extracted key data (e.g., study design/methodology, pain measurement, caregiver pain type, and major findings). Results We identified 46 eligible studies conducted in the United States (n = 19) and internationally (n = 27). Studies often focused on caregivers for older adults with specific health conditions, such as cancer (n = 11), dementia (n = 8), or stroke (n = 3). The most commonly employed pain measure was a single‐item dichotomous question about pain (n = 16), followed by a visual numeric or visual analog scale (n = 11). Nine studies (five randomized controlled trials) reported on five caregiver pain management interventions, including yoga/exercise programs and caregiver education programs. Discussion Existing research on family caregivers' pain offers an important foundation. However, more robust research designs are necessary. We identify possibilities for future studies in addition to opportunities for systematic investigations to support the family caregivers being relied upon to care for the increasing number of older adults.