Family patterns of decision-making in pediatric clinical trials

Authors

  • Julia A. Snethen,,

    Corresponding author
    1. College of Nursing, University of Wisconsin-Milwaukee, 1921 East Hartford Avenue, Milwaukee, Wisconsin 53211
    • College of Nursing, University of Wisconsin-Milwaukee, 1921 East Hartford Avenue, Milwaukee, Wisconsin 53211
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    • Assistant Professor.

  • Marion E. Broome,

    1. School of Nursing, Indiana University, Terre Haute, Indiana
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    • Professor and University Dean.

  • Kathleen Knafl,

    1. School of Nursing, Oregon Health & Science University, Portland, Oregon
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    • Senior Associate Dean for Research and Faculty Affairs,Elizabeth N. Gray Distinguished Professor.

  • Janet A. Deatrick,

    1. School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania
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    • Associate Professor of Nursing.

  • Denise B. Angst

    1. Advocate Health Care, Oak Brook Illinois
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    • Director of Pediatric Research.


Abstract

The decision-making process related to a child's participation in clinical trials often involves multiple family members. The aim of this study was to compare family patterns of decision-making within and across family units in pediatric clinical trials. Participants for this secondary analysis included 14 families from a larger study of informed consent. Four distinct patterns of decision-making were identified: Exclusionary, informative, collaborative, and delegated. These patterns varied with regard to three dimensions of parents' decision-making goals, child level of involvement, and the parental role. These patterns of decision-making affect how parents and children communicate with health professionals and influence the effectiveness of health care providers interactions with the family related to the decision-making process. © 2006 Periodicals, Inc. Res Nurs Health 29:223–232, 2006

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