Palliative and End-of-Life Family Caregiving in Rural Areas: A Scoping Review of Social Determinants of Health and Emotional Well-Being.

Abstract

Introduction: Due to their remote location, rural-dwelling family caregivers (FCGs) experience geographic and psychosocial challenges when providing home-based palliative and end-of-life (PEOL) care for their care recipient. Limited research has evaluated the social and environmental factors that may compound FCG burden and contribute to adverse emotional health outcomes among rural-dwelling PEOL FCGs. Objective: To characterize the social determinants of health (SDOH) that affect the provision of PEOL care among rural-dwelling FCGs, along with symptoms of anxiety and depression. Methods: A scoping review was conducted using Arksey and O'Malley's Framework. Searches were conducted in PubMed, CINAHL, PsycINFO, and Cochrane, and 511 articles published between 2010 and 2023 were screened. Keywords included "rural," "PEOL care," and "FCG." Inclusion criteria included FCGs, ages ≥18 years; findings reported on SDOH, anxiety, and/or depressive symptoms; within a rural context; and U.S. based. Findings: In this review, 18 studies met eligibility and were included. Apart from six studies that specifically investigated Black and Latinx FCGs, most FCGs were middle-aged White female spouses. SDOH impacting PEOL care provision included: limited access to PEOL services due to remote distance and travel needs for services; low health literacy in medical terminology and patient symptom management; limited English-language proficiency; perceived clinician racial and ethnic discrimination; financial vulnerabilities affecting health care coverage; and underdeveloped infrastructure. These barriers negatively impacted decision making, communication with clinicians, and patient symptom management. FCGs reported emotional distress related to patients' symptom management and limited opportunities for respite. There was a limited investigation of emotional well-being and minimal interventions aimed toward improving rural-dwelling FCG emotional health. The presence of community support promoted hospice use and facilitated the provision of care. Conclusions: FCGs are vulnerable to adverse emotional health when providing home-based PEOL care. Research is needed to develop supportive interventions (e.g., digital health) for rural-dwelling FCGs.