Whose choice? Self-Determination and the Motivations of Paid Family and Friend Caregivers

Abstract

This mixed method study focuses on the experiences of 383 family and friend caregivers paid to provide personal care services to Medicaid-eligible disabled and elderly through California’s In-Home Supportive Services program. While much discussion about consumer-directed care concerns the selfdetermination of care recipients, this study investigates related caregivers’ perceived choices about assuming these paid caregiver roles. We find that caregiver perception of choice is rooted in a wide array of cultural and gender norms and is quite variable, both within and across cases. Among this ethnically diverse sample of family and friend caregivers, these norms often underlie the motivations for providing paid care and influence the ways in which caregivers subsequently construct and manage their care arrangements. Findings indicate that related caregivers are well positioned to provide culturally appropriate care that is responsive to both care recipient and caregiver preferences. Moreover, the perception of choice in assuming a paid caregiver role has implications for caregiver well-being. Finally, while the availability of public payment was helpful to many, most caregivers describe motives unrelated to financial reward.