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Original Investigation
January 2015

Good-Parent Beliefs of Parents of Seriously Ill Children

Author Affiliations
  • 1Department of Pediatrics, The Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania
  • 2Department of Anesthesiology and Critical Care Medicine, The Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania
  • 3Department of Nursing Research and Quality Outcomes, Children’s National Health System, Washington, DC
  • 4Department of Pediatrics, School of Medicine and Health Sciences, George Washington University, Washington, DC
JAMA Pediatr. 2015;169(1):39-47. doi:10.1001/jamapediatrics.2014.2341
Abstract

Importance  Parents’ beliefs about what they need to do to be a good parent when their children are seriously ill influence their medical decisions, and better understanding of these beliefs may improve decision support.

Objective  To assess parents’ perceptions regarding the relative importance of 12 good-parent attributes.

Design, Setting, and Participants  A cross-sectional, discrete-choice experiment was conducted at a children’s hospital. Participants included 200 parents of children with serious illness.

Main Outcomes and Measures  Ratings of 12 good-parent attributes, with subsequent use of latent class analysis to identify groups of parents with similar ratings of attributes, and ascertainment of whether membership in a particular group was associated with demographic or clinical characteristics.

Results  The highest-ranked good-parent attribute was making sure that my child feels loved, followed by focusing on my child’s health, making informed medical care decisions, and advocating for my child with medical staff. We identified 4 groups of parents with similar patterns of good-parent–attribute ratings, which we labeled as: child feels loved (n = 68), child’s health (n = 56), advocacy and informed (n = 55), and spiritual well-being (n = 21). Compared with the other groups, the child’s health group reported more financial difficulties, was less educated, and had a higher proportion of children with new complex, chronic conditions.

Conclusions and Relevance  Parents endorse a broad range of beliefs that represent what they perceive they should do to be a good parent for their seriously ill child. Common patterns of how parents prioritize these attributes exist, suggesting future research to better understand the origins and development of good-parent beliefs among these parents. More important, engaging parents individually regarding what they perceive to be the core duties they must fulfill to be a good parent may enable more customized and effective decision support.

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