This four year ethnographic and longitudinal study will examine family cultures and family life among 30 African American families and their children in a way that attempts to avoid an overly homogenized description of how urban families at risk manage challenges in daily life as they try to address the health problems of children with illnesses or disabilities. In investigating the nature of family life as this bears upon health outcomes for children with illnesses or disabilities, it is essential to recognize diversity even while identifying themes and issues that hold across cases, such as we have begun to identify in our research: (1) over-burdened or """"""""vulnerable caregivers"""""""" who are themselves suffering from serious, chronic illnesses; (2) dynamic """"""""caregiving teams"""""""" to support this burden of caregiving; (3) families dealing with """"""""multiple illness trajectories""""""""; (4) significant family dramas associated with poverty and inner city residence that dominate family life; (5) child illness or disability as one sub-plot in the midst of more crucial family concerns; (6) resiliency, resources, and supports that """"""""buffer"""""""" hardships and suffering; and (7) the emergence of selves and identities that foreshadow future possibilities. In essence, this is a study of """"""""lives in motion"""""""" (Elder, 1998, p.8), building upon earlier research with 20 African American families who have children with special health care needs as well as the health care and school professionals who serve them. We are nesting our study of children within their primary social unit, the family, in recognition of the interrelatedness of the lives of children and their caregivers. We will assess how dynamic shifts in family life influence how multiple perspectives are negotiated. Our research questions are: How does familial caregiving change over time? How does the care of a child with special health care needs intersect with other family caregiving responsibilities? What are the shifting influences of larger community and extended family networks on caregiving? How do these factors impact upon and in turn influence the ability of families to access and create effective partnerships with health care professionals? The anticipated outcomes of this study are an emic understanding of: (a) a child's illness course) and how impairments influence developmental progress and achievements over time; (b) shifts in family structure, household configurations, caregiving patterns and their resources; (c) reconfigurations of parent (or parenting team)/child dyads in relation to the child's and caregiver's health changes; and (d) shifts in family priorities when juggling multiple illness trajectories among a number of family members as well as other key family issues. In addition, we will be identifying core curriculum content for intervention projects to improve cross cultural collaboration.
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