Health literacy in parents of children with Hirschsprung disease: a novel study
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In brief
In brief
This Norwegian study assessed health literacy in 132 parents of children with Hirschsprung disease, finding that while parents effectively understand and engage with health information, they report inadequate provider support and struggle with information appraisal. The research identifies vulnerable subgroups—younger, less-educated, non-cohabitating parents and non-native speakers—who would benefit from targeted health literacy interventions to improve care outcomes.
- Parents of children with Hirschsprung disease report inadequate provider understanding of their child's specific challenges and needs.
- Health literacy is lower among young parents, those with less education, non-cohabiting parents, and non-native language speakers.
- Parents struggle most with appraising health information quality and accessing social support despite high engagement levels.
- Higher parental self-efficacy strongly correlates with better health literacy scores across all domains.
- Targeted health literacy interventions should focus on vulnerable parent groups to improve care navigation and outcomes.
Written by the GCMD Library team from the article.
Abstract
Purpose
To explore health literacy (HL) among parents of children with Hirschsprung disease (HD).
Methods
Norwegian-speaking parents of children under 16 who underwent HD surgery at a tertiary center were surveyed using the Health Literacy Questionnaire-Parent, electronic Health Literacy Scale, General Self-efficacy Scale, and a study-specific questionnaire. Demographics were collected and ethical approval was obtained.
Results
Among 132 parents (77 mothers) of 91 children (median age 8 years), high HL scores appeared in the domains “understanding health information” and “active engagement”, with lower scores in “provider support”, “health information appraisal”, and “social support”. Higher HL correlated with parents aged over 40 and higher education. Lower scores were seen with non-exclusive Norwegian use at home and not living with the child’s other parent. High electronic HL scores were common (mean 3.6, maximum score 5). 69% had high self-efficacy scores (score > 2, maximum score 4). Self-efficacy correlated strongly with higher HL scores.
Conclusion
Parents of children with HD feel healthcare providers lack understanding of their child’s challenges, experience limited social support and struggle with interpreting health information. We suggest targeted HL interventions for young, lower-educated, non-cohabitating parents and those not primarily speaking the official language at home.
Graphical abstract