Focus group study of ethnically diverse low-income users of paid personal assistance services

This study examined the experiences of ethnically diverse, low-income consumers of paid personal assistance services (PAS) to understand the successes and problems they faced setting up and maintaining their assistance. A thematic analysis was conducted with transcripts from eight focus groups of ethnically homogeneous consumers (n = 67): African American, Latino, Chinese, Native American, and non-Hispanic white. These experienced consumers were generally satisfied with their current PAS but noted significant difficulties: Getting access to appropriate care, obtaining enough paid care to avoid unmet need, and dealing with confusing bureaucracies and cultural differences between them and agency staff/attendants. They desired more control over their care, including the use of paid family attendants when possible. Respondents recommended improved screening and training of attendants, more attendant time, higher wages for attendants, improved cultural sensitivity of attendants and agency staff, and greater consumer control over PAS. Although these low-income PAS consumers are ethnically and geographically diverse, the similarity of findings points to their ongoing struggle to access adequate high quality assistance. The burden they have in obtaining and maintaining services is substantial.