Nemours is a nonprofit pediatric health system founded by Alfred duPont and dedicated to life-changing medical care and research. Its Center for Healthcare Delivery Science studies the many influences that can affect the outcomes of children’s healthcare, with a special emphasis on type 1 diabetes (T1D) among young children, adolescents, and their families. This particular study focused on how a website may be able to support the parents of young children (under age 6) with T1D.
Building an Essential Community
In type 1 diabetes, the immune system attacks and destroys the insulin-producing cells of the pancreas, halting the production of insulin. The condition requires daily monitoring of blood sugar levels, replacing insulin with several daily injections or use of an insulin pump, and careful regulation of carbohydrate intake and exercises to optimize patients’ health and prevent serious complications. Managing type 1 diabetes among children under six years of age is an exceptional challenge for parents and other caregivers. Despite active research on the condition, there has been very little research focused on infants and toddlers, making it difficult for parents to understand the challenge ahead of them or know how to best assist their children.
The Nemours team had the vision to create a comprehensive online community to provide parents of infants, toddlers, and preschoolers with T1D with helpful and medically-approved information, resources, news, and emotional support from fellow parents. Our mission was to bring this vision to life by creating a website that would help parents promote the health, safety, and emotional well-being of not only their children, but also themselves.
One of the most important goals of this project was to keep the website’s eventual users – actual parents of children with T1D – involved and active in creating this web community. We did so by including a group of parents who could actively engage in this process throughout its completion, and by providing regular check-ins to gather their feedback and ideas along the way. This included:
- Kickoff Workshops: We immersed ourselves in the world of T1D by understanding the unique challenges facing these parents and their typical characteristics. We then identified how to recruit families with T1D to participate in this project.
- User Interviews: We spoke directly with multiple families about their experience of learning their child had T1D and subsequently, how they went about finding information and support. These conversations helped us understand the need for this type of resource and its various use cases. These sessions also provided the opportunity for us to identify the information, tools, and layout that would be the most helpful for them.
- Content Strategy: Based on our conversations with these parents, we created a user-focused content strategy that established the site’s voice and tone, and a governance plan to ensure the site remained current and active. We also developed user personas to prioritize content needs and a site taxonomy to ensure everything was easy to find and we could recommend new content relevant to each user’s interests.
- Prototype Testing: Once the site was designed, we created an interactive prototype that the Nemours team used to test users’ ability to find specific content and accomplish tasks. Based on these results, we made several optimizations to the site structure and user experience.
- Responsive Design & Development: With our requirements set following our in-depth research phase, we began building the website featuring a secure login, a robust analytics system, integration with REDCap research database, both health care provider- and parent user-provided content, individualized user notifications, a community forum, medical glossary, and newsletter. We built the site with a mobile-first design to support busy parents who are constantly on-the-go.
With the website complete, the Nemours team is recruiting an online community of up to 300 parents of young children (under age 6) with T1D to participate in the community to test its ability to improve their health and emotional outcomes. While this community and its study are still ongoing, the model we employed could be applicable to helping people cope with a wide variety of medical conditions and other sources of stress. We hope that this user-centered design process within healthcare creates more opportunities to empower patients and their caregivers with better information and support for their medical and emotional needs.