Approximately 10%-15% of children in the U.S. have some type of chronic health impairment; most are cared for at home by their families. Nurses have a longstanding commitment to providing family centered care. Ideally, such care is informed by research on how families respond to health care situations. The overall purpose of this proposal is to extend the analysis of an existing data set that includes qualitative and quantitative material on how individual members and the family unit as a whole respond to a child's chronic illness. The ongoing analysis of this data set. which includes data from 63 families, focuses on the conceptualization of family management style. The continuation study addresses substantive, theoretical, and methodological issues identified during the course of the initial analysis.
The specific aims are to: (1) Combine qualitative and cluster analysis techniques to refine further and validate family management styles identified through qualitative analysis in the original study, (2) Identify qualitative themes that characterize and differentiate how subject groups (mother, fathers, ill children, siblings) define and manage chronic illness, (3) Compare the impact of illness across subject groups (mothers, fathers, ill children, siblings) using data from interviews and standardized measures, (4) Identify familial and individual defining and managing themes from the interview data which differentiate children at risk for behavioral and social competence problems from whose who are not at risk, (5) Differentiate defining themes, illness management behaviors, individual response, and family response issues that cut across chronic illnesses from those that are associated with a specific illness, and (6) Evaluate the congruency and complementarity of data obtained from standardized measures and interviews for each subject group.
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