Parental Concordance Regarding Problems and Hopes for Seriously Ill Children: A Two-Year Cohort Study.

TitleParental Concordance Regarding Problems and Hopes for Seriously Ill Children: A Two-Year Cohort Study.
Publication TypeJournal Article
Year of Publication2017
AuthorsHill DL, Nathanson PG, Fenderson RM, Carroll KW, Feudtner C
JournalJ Pain Symptom Manage
Date Published2017 Jan 03
ISSN1873-6513
Abstract

CONTEXT: Parents of a seriously ill child may have different concerns and hopes for their child and these concerns and hopes may change over time.

OBJECTIVE: In a mixed-method prospective cohort of parental dyads of children with serious illness, to describe the major problems and hopes perceived for their child, examine the degree of concordance between parents, and assess whether prevalence and concordance change over time.

METHODS: 84 parents (42 dyads) of seriously ill children reported the major problems and hopes for their children at baseline. 32 parents (16 dyads) answered the same questions at 24 months. Problems and hopes were classified into 9 domains. Observed concordance was calculated between parents on each domain. Data for parents of 11 children who died are reported separately.

RESULTS: The most common major problem and hope domains at baseline were Physical Body, Quality of Life, Future Health and Well-Being, and Medical Care. Parental dyads demonstrated a moderately high percentage of concordance (69%) regarding reported problem domains and a slightly lower percentage of concordance on hopes (61%), with higher concordance for more common domains. Domain prevalence and concordance changed considerably at 24 months. Parents of children who later died showed markedly different patterns of domain prevalence and more extreme patterns of concordance.

CONCLUSIONS: Parents of children with serious illness may have different perspectives regarding major problems and hopes, and these perspectives change over time. Parents of sicker children are more likely to be in either complete agreement or disagreement regarding the problems and hopes they identify.

DOI10.1016/j.jpainsymman.2016.11.007
Alternate JournalJ Pain Symptom Manage
PubMed ID28062346