Sisk Bryan A, Antes Alison, Bereitschaft Christine, Bourgeois Fabienne, DuBois James
Pediatrics, Washington University in St Louis, St Louis, United States.
Internal Medicine, Washington University in St Louis, St Louis, United States.
Appl Clin Inform. 2025 May 12. doi: 10.1055/a-2605-4893.
Online healthcare portals provide access to electronic health information and support clinical communication. Almost no studies have examined perspectives on parental portal access. We aimed to characterize parental and adolescent perspectives on parental portal access.
Semi-structured interviews with 51 dyads of parents and adolescents (102 total interviews). We stratified sampling for equal proportions of adolescents with and without chronic illnesses. We analyzed interview transcripts using thematic analysis.
Parents and adolescents identified several benefits of parental portal access: improving understanding and access to information; supporting parents in managing adolescent's health and logistics; supporting parents in teaching adolescents about their health. Parents and adolescents identified the following problems: threatening the adolescent's privacy; creating or exacerbating tension within the family; struggling to understand medical information; creating emotional distress for parents. Parents described the following barriers to portal use: difficulties with enrollment and maintaining access; interface challenges; lack of awareness; lack of interest. Some parents preferred to maintain access after their child was legally an adult. Although the portal has potential to support collaborative care management between parents and adolescents, few parents used this tool collaboratively with their adolescent.
Parents and adolescents identified multiple benefits, problems, and barriers to parents accessing the adolescent portal. Parents need sufficient access to health-related information in the portal to help them manage their adolescent's health and illness, especially for adolescents with chronic illness. Future efforts could better leverage the portal as a way of supporting collaboration in care between parents and adolescents.
Portals offer several potential benefits to parents and adolescents. However, these benefits are impeded by technological limitations and lack of engagement of the adolescent.
在线医疗门户提供电子健康信息访问并支持临床沟通。几乎没有研究探讨过家长对访问门户的看法。我们旨在描述家长和青少年对家长访问门户的看法。
对51对家长和青少年进行半结构化访谈(共102次访谈)。我们按比例分层抽样,纳入患有和未患有慢性病的青少年。我们使用主题分析法分析访谈记录。
家长和青少年指出了家长访问门户的几个好处:增进理解和信息获取;帮助家长管理青少年的健康和后勤事务;帮助家长向青少年传授健康知识。家长和青少年也指出了以下问题:威胁青少年隐私;造成或加剧家庭内部紧张关系;难以理解医疗信息;给家长带来情绪困扰。家长描述了使用门户的以下障碍:注册和维持访问困难;界面问题;缺乏认知;缺乏兴趣。一些家长希望在孩子成年后仍能继续访问。尽管该门户有潜力支持家长和青少年之间的协作式护理管理,但很少有家长与青少年协作使用这个工具。
家长和青少年指出了家长访问青少年门户的多种好处、问题和障碍。家长需要充分访问门户中与健康相关的信息,以帮助他们管理青少年的健康和疾病,尤其是对于患有慢性病的青少年。未来的努力可以更好地利用该门户,作为支持家长和青少年协作护理的一种方式。
门户为家长和青少年提供了一些潜在好处。然而,这些好处受到技术限制和青少年参与度不足的阻碍。