It is estimated that 10-15 percent of children in the U.S. have some type of chronic health impairment. Recent efforts toward the containment of health care costs and the resultant trend toward home health care have added to the family's responsibility for providing health care. Nurses have a longstanding commitment to working with family systems as reflected in the current emphasis on providing family centered nursing care. Ideally, such care is grounded in a research base for understanding how families respond to a variety of health care situations. The purpose of the research is to use a grounded theory approach to conceptualize how families define and manage a child's chronic illness.
Specific aims i nclude: (1) describe and compare how individual family members (parents, siblings, chronically ill child) define the condition of the chronically ill child and their family system, (2) use family members' descriptions of how they define and manage the child's chronic illness to identify, describe and develop defining criteria for general management styles, (3) identify the extent to which family members identify and utilize a shared management style, and (4) explore the relationship between family management style and measures of individual and family system functioning. Two groups of 35-40 families will comprise the study sample: families with a newly diagnosed (within six months) chronically ill school age child and families with a long term (two or more years) chronically ill child. It is anticipated that the bulk of the sample will be families in which a child has diabetes, juvenile rheumatoid arthritis, inflammatory bowel disease, or chronic renal disease. Family members will be asked to participate in two tape-recorded intensive interviews conducted twelve months apart. Family members will be interviewed separately. In addition, parents individually will complete the following instruments: Family Environment Scale, Parental Competence Scale Child Behavioral Checklist (for each child). Both the chronically ill child and siblings age seven and older will be asked to complete the Self-Perception Profile for Children. Qualitative analysis of the interview data will focus on identification and description of family management styles. In addition, the relationship between family management style and selected demographic variables and objective measures will be explored. A detailed understanding of family management style is essential to furthering an understanding of the relationship between individual and family system functioning and chronic illness.
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