Mixed-Method Synthesis of Research on Childhood Chronic Conditions and Family

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Funded by: National Institute of Nursing Research, National Institutes of Health
(2011 – 2016)

Principal Investigators

Kathleen Knafl, PhD, FAAN
School of Nursing, University of North Carolina at Chapel Hill

Margarete Sandelowski, PhD, RN, FAAN
School of Nursing, University of North Carolina at Chapel Hill

Co-Investigator

Jamie Crandell, PhD
School of Nursing, University of North Carolina at Chapel Hill

Jennifer Leeman, DrPH, MDIV
School of Nursing, University of North Carolina at Chapel Hill

Julia Shaw-Kokot, MSLS
Health Affairs Library, University of North Carolina at Chapel Hill

Abstract

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.