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. 2015 Jan;169(1):39-47.
doi: 10.1001/jamapediatrics.2014.2341.

Good-parent beliefs of parents of seriously ill children

Chris Feudtner  1 , Jennifer K Walter  1 , Jennifer A Faerber  1 , Douglas L Hill  1 , Karen W Carroll  1 , Cynthia J Mollen  1 , Victoria A Miller  1 , Wynne E Morrison  2 , David Munson  1 , Tammy I Kang  1 , Pamela S Hinds  3
Affiliations

Good-parent beliefs of parents of seriously ill children

Chris Feudtner et al. JAMA Pediatr. 2015 Jan.

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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Conflict of interest statement

Conflict of Interest Disclosures: None reported.

Figures

Figure 1
Figure 1. Relative Importance of the Good-Parent Attributes Among 200 Parents
QOL indicates quality of life.
Figure 2
Figure 2. Distribution of 200 Parents’ Ratings of Good-Parent Attributes
The interquartile range (IQR) of the scores (from the 25th to the 75th percentile of the score) is presented. The vertical line within each box indicates the median score; the horizontal lines extending from the boxes display the range to the upper and lower adjacent values (ie, values lying above the 75th percentile or below the 25th percentile by >150% of the IQR). The separate symbols depict outliers. QOL indicates quality of life.
Figure 3
Figure 3. Relative Importance of Good-Parent Attributes in 4 Groups
A, Child feels loved (n = 68). B, Child’s health (n = 58). C, Advocacy and informed decision making (n = 55). D, Spiritual well-being (n = 21). QOL indicates quality of life.
See this image and copyright information in PMC

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