Olsbø Signe, Kiserud Sara George, Hermansen Åsmund, Hamilton Larsen Marie, Bjørnland Kristin
Department of Gastrointestinal and Pediatric Surgery, Oslo University Hospital, Rikshopitalet, Postboks 4950 Nydalen, 0424, Oslo, Norway.
Institute of Clinical Medicine, University of Oslo, Oslo, Norway.
Pediatr Surg Int. 2024 Dec 5;41(1):21. doi: 10.1007/s00383-024-05917-4.
To explore health literacy (HL) among parents of children with Hirschsprung disease (HD).
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.
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.
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.
探讨先天性巨结肠（HD）患儿家长的健康素养（HL）。
使用健康素养问卷-家长版、电子健康素养量表、一般自我效能量表和一份特定研究问卷，对在一家三级中心接受HD手术的16岁以下患儿的挪威语家长进行调查。收集了人口统计学数据并获得了伦理批准。
在91名儿童（中位年龄8岁）的132名家长（77名母亲）中，“理解健康信息”和“积极参与”领域的HL得分较高，而“提供者支持”、“健康信息评估”和“社会支持”领域的得分较低。较高的HL与40岁以上的家长和较高的教育程度相关。在家中并非只使用挪威语以及未与孩子的另一方家长同住的家长得分较低。较高的电子HL得分很常见（平均3.6分，满分5分）。69%的家长自我效能量表得分较高（得分>2分，满分4分）。自我效能与较高的HL得分密切相关。
HD患儿的家长认为医疗保健提供者对其孩子面临的挑战缺乏理解，社会支持有限，且在解读健康信息方面存在困难。我们建议针对年轻、受教育程度较低、非同居的家长以及那些在家中不主要说官方语言的家长进行有针对性的HL干预。
