A substantial percentage of children have a chronic physical condition (CPC) such as arthritis or diabetes putting them at increased risk for psychosocial adjustment problems. Although much primary research has targeted families with these children, still unknown are the factors that prevent, ameliorate, or increase risk for children and families and how adjustment varies over time in this population. In addition, prior reviews of this research have been limited in their scope; focused on selected aspects of family response, conditions, or time periods; and limited to studies with pre-selected research designs. These delimitations have posed a barrier to synthesizing the primary research available to address important questions regarding such factors as the relationship of child development, disease course, and family structure to family response and child health outcomes. Knowledge of these risk and resistance factors is necessary to provide an evidence base for developing interventions that support optimal child and family outcomes. The proposed research synthesis addresses the limitations of prior reviews by fully mining the body of research addressing family life in the context of childhood CPCs via the use of state-of-the-art methods to integrate the findings from this research in collaboration with family researchers and clinical decision makers. The overall objective of the proposed study is to synthesize findings from empirical research addressing the intersection between family life and childhood CPCs. Bayesian meta-analysis and realist synthesis methods will be used to: (1) Map the relationships found among condition management and control; functioning of the affected child, parents, and siblings; family life and functioning; family relationship with the healthcare system; and individual and family demographics, (2) Explain how these factors operate together to produce variations in child and family outcomes, (3) Describe the nature of interventions directed to families of children with CPCs and their effects on child and family outcomes, and to (4) Examine factors mediating and moderating intervention effects. The outcomes of the proposed study will be evidence summaries addressing each of the four specific aims and theoretical integrations of findings that address the strengths of families with children with CPCs, the problems these families confront, and the rationale for interventions to enhance these strengths and address these problems. Study findings will be disseminated in forms accessible to and usable by both researchers and clinical decision makers. The proposed study addresses the National Institute of Nursing Research emphasis on Improving Quality of Life through support for research that generates knowledge of self and family management of chronic conditions.

Public Health Relevance

Children with chronic conditions and their families are at risk for adjustment problems. In the proposed study, findings from the empirical research literature will be integrated to identify child, condition, and family factors that contribute to health outcomes for children and their families. Study findings will be disseminated in forms accessible to and usable by both researchers and clinical decision makers and will provide an evidence base for developing and testing interventions that support optimal child and family adjustment.

Agency
National Institute of Health (NIH)
Institute
National Institute of Nursing Research (NINR)
Type
Research Project (R01)
Project #
5R01NR012445-05
Application #
8874002
Study Section
Nursing and Related Clinical Sciences Study Section (NRCS)
Program Officer
Huss, Karen
Project Start
2011-09-01
Project End
2017-06-30
Budget Start
2015-07-01
Budget End
2017-06-30
Support Year
5
Fiscal Year
2015
Total Cost
Indirect Cost
Name
University of North Carolina Chapel Hill
Department
Type
Schools of Nursing
DUNS #
608195277
City
Chapel Hill
State
NC
Country
United States
Zip Code
27599
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Knafl, Kathleen A; Havill, Nancy L; Leeman, Jennifer et al. (2017) The Nature of Family Engagement in Interventions for Children With Chronic Conditions. West J Nurs Res 39:690-723
Leeman, Jennifer; Crandell, Jamie L; Lee, Anna et al. (2016) Family Functioning and the Well-Being of Children With Chronic Conditions: A Meta-Analysis. Res Nurs Health 39:229-43
Knafl, Kathleen (2015) Family synthesis research: possibilities and challenges. J Fam Nurs 21:3-10
Knafl, Kathleen; Leeman, Jennifer; Havill, Nancy et al. (2015) Delimiting family in syntheses of research on childhood chronic conditions and family life. Fam Process 54:173-84
Leeman, Jennifer; Sandelowski, Margarete; Havill, Nancy L et al. (2015) Parent-to-Child Transition in Managing Cystic Fibrosis: A Research Synthesis. J Fam Theory Rev 7:167-183
Knafl, Kathleen; Leeman, Jennifer; Havill, Nancy L et al. (2015) The Contribution of Parent and Family Variables to the Well-Being of Youth With Arthritis. J Fam Nurs 21:579-616
Havill, Nancy L; Leeman, Jennifer; Shaw-Kokot, Julia et al. (2014) Managing large-volume literature searches in research synthesis studies. Nurs Outlook 62:112-8
Sandelowski, Margarete; Leeman, Jennifer; Knafl, Kathleen et al. (2013) Text-in-context: a method for extracting findings in mixed-methods mixed research synthesis studies. J Adv Nurs 69:1428-37