Sezgin Emre, Weiler Monica, Weiler Anthony, Lin Simon
Research Information Solutions and Innovation, The Research Institute, Nationwide Children's Hospital, Columbus, OH, United States.
Stratos Innovation Group, Columbus, OH, United States.
J Med Internet Res. 2018 Sep 6;20(9):e10285. doi: 10.2196/10285.
Chronic disease management is critical to quality of life for both teen patients with chronic conditions and their caregivers. However, current literature is largely limited to a specific digital health tool, method, or approach to manage a specific disease. Guiding principles on how to use digital tools to support the transition to independence are rare. Considering the physiological, psychological, and environmental changes that teens experience, the issues surrounding the transition to independence are worth investigating to develop a deeper understanding to inform future strategies for digital interventions.
The purpose of this study was to inform the design of digital health solutions by systematically identifying common challenges among teens and caregivers living with chronic diseases.
Chronically ill teens (n=13) and their caregivers (n=13) were interviewed individually and together as a team. Verbal and projective techniques were used to examine teens' and caregivers' concerns in-depth. The recorded and transcribed responses were thematically analyzed to identify and organize the identified patterns.
Teens and their caregivers identified 10 challenges and suggested technological solutions. Recognized needs for social support, access to medical education, symptom monitoring, access to health care providers, and medical supply management were the predominant issues. The envisioned ideal transition included a 5-component solution ecosystem in the transition to independence for teens.
This novel study systematically summarizes the challenges, barriers, and technological solutions for teens with chronic conditions and their caregivers as teens transition to independence. A new solution ecosystem based on the 10 identified challenges would guide the design of future implementations to test and validate the effectiveness of the proposed 5-component ecosystem.
慢性病管理对于患有慢性病的青少年患者及其护理人员的生活质量至关重要。然而，目前的文献大多局限于管理特定疾病的特定数字健康工具、方法或途径。关于如何使用数字工具支持向独立过渡的指导原则很少。考虑到青少年所经历的生理、心理和环境变化，围绕向独立过渡的问题值得研究，以便更深入地了解，为未来的数字干预策略提供信息。
本研究的目的是通过系统识别患有慢性病的青少年及其护理人员中的常见挑战，为数字健康解决方案的设计提供信息。
对患有慢性病的青少年（n = 13）及其护理人员（n = 13）进行了单独访谈，并作为一个团队进行了访谈。使用言语和投射技术深入研究青少年和护理人员的担忧。对记录和转录的回答进行主题分析，以识别和整理所确定的模式。
青少年及其护理人员识别出10项挑战并提出了技术解决方案。对社会支持、获得医学教育、症状监测、接触医疗保健提供者以及医疗用品管理的公认需求是主要问题。设想的理想过渡包括一个在青少年向独立过渡过程中的由5个部分组成的解决方案生态系统。
这项新颖的研究系统地总结了患有慢性病的青少年及其护理人员在向独立过渡过程中的挑战、障碍和技术解决方案。基于所确定的10项挑战的新解决方案生态系统将指导未来实施的设计，以测试和验证所提议的由5个部分组成的生态系统的有效性。
