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.

Agency
National Institute of Health (NIH)
Institute
National Institute of Nursing Research (NINR)
Type
Research Project (R01)
Project #
5R01NR001594-03
Application #
3391515
Study Section
Nursing Research Study Section (NURS)
Project Start
1987-05-01
Project End
1991-04-30
Budget Start
1989-05-01
Budget End
1991-04-30
Support Year
3
Fiscal Year
1989
Total Cost
Indirect Cost
Name
University of Illinois at Chicago
Department
Type
Schools of Nursing
DUNS #
121911077
City
Chicago
State
IL
Country
United States
Zip Code
60612
Knafl, George J; Knafl, Kathleen A; McCorkle, Ruth (2005) Mixed models incorporating intra-familial correlation through spatial autoregression. Res Nurs Health 28:348-56
Knafl, K A; Ayres, L; Gallo, A M et al. (1995) Learning from stories: parents' accounts of the pathway to diagnosis. Pediatr Nurs 21:411-5
Breitmayer, B J; Ayres, L; Knafl, K A (1993) Triangulation in qualitative research: evaluation of completeness and confirmation purposes. Image J Nurs Sch 25:237-43
Gallo, A M; Breitmayer, B J; Knafl, K A et al. (1993) Mothers' perceptions of sibling adjustment and family life in childhood chronic illness. J Pediatr Nurs 8:318-24
Breitmayer, B J; Gallo, A M; Knafl, K A et al. (1992) Social competence of school-aged children with chronic illnesses. J Pediatr Nurs 7:181-8
McCarthy, S M; Gallo, A M (1992) A case illustration of family management style. J Pediatr Nurs 7:395-402
Obrecht, J A; Gallo, A M; Knafl, K A (1992) A case illustration of family management style in childhood end stage renal disease. ANNA J 19:255-9;discussion 260
Knafl, K; Breitmayer, B; Gallo, A et al. (1992) Parents' views of health care providers: an exploration of the components of a positive working relationship. Child Health Care 21:90-5
Gallo, A M; Breitmayer, B J; Knafl, K A et al. (1992) Well siblings of children with chronic illness: parents' reports of their psychologic adjustment. Pediatr Nurs 18:23-7
Gallo, A M; Breitmayer, B J; Knafl, K A et al. (1991) Stigma in childhood chronic illness: a well sibling perspective. Pediatr Nurs 17:21-5

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