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.