America's Children, an annual federal compendium of indicators representing 7 interrelated domains of child well-being, indicates that large percentages of U.S. children confront substantial challenges in their lives. Notably missing from these myriad statistics is information about how often children under age 18 provide personal assistance services to a parent with a disability. This omission in U.S. statistics contrasts sharply with the considerable research and social policy interest in so-called "young caregivers" in the United Kingdom and Australia, in particular.
This aims to provide exploratory evidence about the personal experiences of children as caregivers. For our purposes, we define children as individuals age 17 or younger, recognizing that the upper age limit defining childhood varies by context. We define "caregiving" as providing assistance with activities of daily living (ADLs) or instrumental ADLs, as defined by the U.S. Census. We define physical disabilities as difficulties performing ADLs or IADLs because of functional impairment(s) caused by a disease, disorder, injury, or congenital condition. The project's two specific aims are to: 1. Generate hypotheses about the experiences of giving personal assistance services (PAS) to parents with physical disabilities by interviewing up to 20 adults who, as children, lived with at least one parent who had a physical disability and analyzing their social media posts about these experiences;and 2. Describe parental PAS experiences of a purposive sample of up to 30 adolescent children (ages 13-17 years old) of parents with a physical disability through analyzing: video diaries documenting their lives prepared by the adolescent participants using smart phone-like video production and editing technology; social media posts about these experiences;and results from two focus groups, one involving 13-14 year olds and the other 15-17 year olds, recognizing the differing developmental stages of these two groups. As with other qualitative studies, our participants will represent a purposive sample;however, we shall ensure we involve adequate numbers of low-income participants in recognition of the critical importance of financial resources for access to formal (paid) caregivers and other accommodations (e.g., home environmental modifications, assistive technologies). We shall enroll participants until we reach thematic saturation. This project represents an initial effort o provide insight into the experiences and perspectives of children who provide PAS to one or more parent with a physical disability. The results would provide new information with great personal importance to an under-recognized group of American children and their disabled parents - members of a historically stigmatized and disadvantaged population.
Information from abroad suggests that young children are often called upon to provide basic assistance when their parent has a physical disability, but the experiences of child caregivers in the U.S. are little understood. This project will use interviews video diaries, and entries from social media to learn about children's experiences and views about providing personal assistance services to a parent with a physical disability.
|Iezzoni, Lisa I; Wint, Amy J; Kuhlthau, Karen A et al. (2016) Adults' recollections and perceptions of childhood caregiving to a parent with significant physical disability. Disabil Health J 9:208-17|