Parental health literacy in anorectal malformation: needs and challenges.

Aim: Explore health literacy (HL) among parents of children with anorectal malformation (ARM) and identify the predictors of HL.

Method:  Parents of children < 16 years treated for ARM were invited to complete the Health Literacy Questionnaire-Parent (HLQ-p), General Self-efficacy Scale (GSES), electronic Health Literacy-Scale (eHEALS) and a study-specific questionnaire. Demographic data were collected. Ethical approval was obtained.

Results: 137 parents (40% fathers) of 105 children (median age 7.1 years) participated. The highest HL scores were in managing the child's health and engaging with healthcare providers, while scores were lowest in social support, information sufficiency, and interpreting health information. Higher HL correlated with increasing parental age and education. Parents not speaking the native language at home or not living with the child's other parent had lower HL scores. More challenges were observed among parents of female children and children with comorbidities. Parents had high eHEALS scores (mean 3.7, SD 0.6, max score 5), while 48% had low self-efficacy scores (max score 4).

Conclusion: Many parents experience a lack of information, insufficient social support, and difficulty interpreting information. Predictors of HL challenges include having a female child, a child with comorbidity, younger parental age, lower education, and low self-efficacy. These parents will likely benefit from targeted support.