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Project Citation: 

Sage, Rayna, and Standley, Krys. “I Figured It Might Be Because We Are Rural”: A Qualitative Study of Barriers and Opportunities Related to Home Based Personal Assistance Services. Ann Arbor, MI: Inter-university Consortium for Political and Social Research [distributor], 2025-06-23. https://doi.org/10.3886/E233925V1

Project Description

Summary:  View help for Summary
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, inhome 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.
Funding Sources:  View help for Funding Sources National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) (90RTCP0002)

Scope of Project

Subject Terms:  View help for Subject Terms rural; personal assistance; activitites of daily living; disability; home and community-based services
Geographic Coverage:  View help for Geographic Coverage United States
Time Period(s):  View help for Time Period(s) 1/1/2021 – 1/1/2024
Collection Date(s):  View help for Collection Date(s) 2/1/2021 – 11/1/2021 (February - November of 2021)
Universe:  View help for Universe
Rural individuals across the United States that use paid PCA's (personal care assistance)
Data Type(s):  View help for Data Type(s) other
Collection Notes:  View help for Collection Notes
Conducted via telephone or Zoom between February and November of 2021

NVivo data analysis software

Methodology

Sampling:  View help for Sampling
40 self-identified rural-dwelling people across the United States who use paid PCAs
Data Source:  View help for Data Source
Semi-structured qualitative interviews
Collection Mode(s):  View help for Collection Mode(s) telephone interview
Scales:  View help for Scales
Thematic coding with first-order, second-order, and third-order coding phases
Unit(s) of Observation:  View help for Unit(s) of Observation Rural-dwelling people who use paid PCAs, including some interviews conducted with family members as proxies
Geographic Unit:  View help for Geographic Unit United States

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