Vernon-Roberts Angharad, Gearry Richard B, Day Andrew S
Department of Paediatrics, University of Otago, Christchurch, New Zealand.
Department of Medicine, University of Otago, Christchurch, New Zealand.
Front Pediatr. 2020 Aug 12;8:475. doi: 10.3389/fped.2020.00475. eCollection 2020.
Children with inflammatory bowel disease (IBD) and their parents have increasing roles in disease management and require sufficient, appropriate information for communication with their clinical team. Formal education is effective at improving disease knowledge, disease outcomes, and mental health, yet few interventions have been targeted for parents of children with IBD. A two day parent education program was held at the annual residential camp for children with IBD in New Zealand with knowledge levels tested pre and post intervention using a validated assessment tool: IBD-KID2. Thirty parents consented, 25 completed the study, 70% were female and 83% had a child with Crohn's disease. The pre-intervention mean score (maximum fifteen) was 10.6 ( 2.9), with no associations with independent variables. Knowledge levels increased significantly following the education program to a mean 12.6 ( 2.0) ( < 0.005). Disease specific knowledge may improve outcomes and should, therefore, be reinforced during clinic encounters, and regarded as an ongoing endeavor.
患有炎症性肠病（IBD）的儿童及其父母在疾病管理中的作用日益增加，他们需要充分、恰当的信息以便与临床团队沟通。正规教育在提高疾病知识、改善疾病预后及心理健康方面是有效的，但针对IBD患儿父母的干预措施却很少。在新西兰为IBD患儿举办的年度住宿营中，开展了一项为期两天的家长教育项目，并使用经过验证的评估工具IBD-KID2在干预前后对知识水平进行测试。30位家长同意参与，25位完成了研究，其中70%为女性，83%的孩子患有克罗恩病。干预前的平均得分（满分15分）为10.6（标准差2.9），与自变量无相关性。教育项目结束后，知识水平显著提高，平均分为12.6（标准差2.0）（P<0.005）。特定疾病知识可能会改善预后，因此，在门诊问诊期间应强化这方面知识，并将其视为一项持续的工作。
