“I Figured It Might Be Because We Are Rural”: A Qualitative Study of Barriers and Opportunities Related to Home-Based Personal Assistance Services

Abstract

Personal care assistance (PCA) provides vital support so rural disabled people and older adults can live in their communities. Currently, the state of home and community-based services in the United States is dire, with major shortfalls in access and utilization of these services. Moreover, little is known about the experiences of people living in rural areas who need paid, in-home assistance with activities of daily living. Because rural areas are often underserved and under-resourced, this study aimed to understand the experiences of rural users of personal care assistance services to inform the development of a training for rural people. Between February and November of 2021, 38 semi-structured qualitative interviews were conducted with 40 self-identified rural-dwelling people across the United States who use paid PCAs. Interview topics included finding, hiring, and training workers; worker qualities; and how living in a rural place impacted PCA services. Using thematic coding, results highlight how rurality intersected with participants’ daily experiences. Respondents identified 3 barriers to getting PCA services: (1) lack of transportation and travel distance, (2) worker shortages, and (3) fewer local community services; and one facilitator of obtaining PCA services: strong community connection. Additionally, some aspects of rural culture—such as valuing a slower pace of life, independence, and rugged individualism—presented both barriers and opportunities for rural PCA recipients. As the home care worker shortage crisis in the United States is expected to worsen in coming decades, rural people needing PCA services face unique circumstances related to place and culture.