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. 2018 Apr;141(4):e20173549.
doi: 10.1542/peds.2017-3549.

Changes in Parental Hopes for Seriously Ill Children

Douglas L Hill  1 , Pamela G Nathanson  1 , Karen W Carroll  1 , Theodore E Schall  1 , Victoria A Miller  1 , Chris Feudtner  2
Affiliations

Changes in Parental Hopes for Seriously Ill Children

Douglas L Hill et al. Pediatrics. 2018 Apr.

Abstract

Background: Hopes of parents of children with serious illness play an important role in decision-making and coping. Little is known about how parent hopes change over time. We describe the changes in parent hopes across multiple domains and time intervals, examine hopes in a subgroup of parents whose child died, and explore the maintenance of domains over time.

Methods: In a mixed-methods prospective cohort study on decision-making, parents of seriously ill children reported demographic characteristics and hopes at baseline and reported any changes in hopes at 4-, 8-, 12-, 16-, and 20-month follow-up visits. Hopes were coded into 9 domains. Hope changes and domain changes were identified for each parent at each visit.

Results: One hundred and ninety-nine parents of 158 patients most often reported hopes in the domains of quality of life (75%), physical body (69%), future well-being (47%), and medical care (34%). Hope percentages increased over time for quality of life (84%), future well-being (64%), and broader meaning (21%). The hope domains reported by parents of children who died were similar to the rest of the sample. The majority of parents who completed 5 to 6 follow-up visits changed at least 1 domain. At the individual parent level, some domains revealed considerable change over time, whereas other domains were stable among a subset of parents.

Conclusions: The specific hopes and overall areas of hope of parents of seriously ill children vary over time, although most hopes fall within 4 major areas. Accordingly, clinicians should regularly check with parents about their current hopes.

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Conflict of interest statement

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

Figures

FIGURE 1
FIGURE 1
All 199 parents with hopes at baseline.
FIGURE 2
FIGURE 2
Parents of children who died during the study. n = 47 at baseline.
FIGURE 3
FIGURE 3
Number of domain changes at each visit among 199 parents who reported hopes.
FIGURE 4
FIGURE 4
Total number of changes across all visits for 147 parents with follow-up visits.
FIGURE 5
FIGURE 5
Percent of parents who maintained or gained each domain at each visit among 68 parents who completed 5 to 6 visits.
See this image and copyright information in PMC

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