Date of Degree
Earth & Environmental Sciences
Barbara Katz Rothman
Barbara Katz Rothman
Health Services Research | Human Geography | Public Health
family caregiving, autoethnography, brain injury, ethic of care, microgeographies of the homespace, system-induced trauma
Informal family caregivers are the backbone of the long-term care system, providing an estimated 80% of the long-term care in the United States. Caregivers provide care to people with disabilities, the ill and older adults, often with little to no outside assistance from the formal long-term care system. Although caregivers receive attention in the academic literature, mainstream media and within public policy and services development, caregiver services continue to remain underutilized. The focus on service provision has various goals, including the desire to lessen the burden caregivers experience by providing services so they can provide care at home longer than they would without these services. Current measurements of ‘caregiver burden’ focus on the proximal tasks caregivers do for care recipients, without recognizing the distal factors of care-giving, such as interactions with the long-term care system (i.e.- in home, direct care service providers, public benefits programs, private insurance companies), as potentially problematic and traumatizing to family caregivers, specifically in relation to increased labor required to obtain and manage services.
Utilizing mixed qualitative methods, specifically autoethnography, in-depth interviews, and participant observation, this research explores the interactions between family caregivers of people with brain injuries and the long-term care system. The resulting microgeographies of the homespace where in-home services are provided are the focus of this research and analyzed within an ethic of care theoretical framework.
Findings suggest several problematic assumptions related to the provision of services especially related to caregiver burden. First, services are developed and delivered utilizing the ideology of the individual, which is in opposition to an ethic of care and fails to recognize the importance of the caregiver/care receiver dyad. Second, there remains a problematic assumption that having formal services in place reduces caregiver burden. Third, current in-home services, while provided in homes and communities, fail to intervene at the household level. When services are provided to people with brain injuries who live with family members, there is an assumption that the family caregiver will continue to provide and maintain the care receiver’s home and relationships. Hence, the family caregiver/care receiver/paid caregiver triads that result from in-home service provision are not recognized as an essential component to the provision of long-term care services. The resulting household negotiations and relational activities of daily living (RADLs) are not recognized as important aspects of caregivers’ lives, or as potential aspects of caregiver burden.
Ornstein-Sloan, Magdalena T., "Re-framing Informal Family Caregiving" (2016). CUNY Academic Works.