Online discussion groups and blogs seem to be widely used by young people with type 1 diabetes.
Young people looked online for information and support at different stages of having type 1 diabetes. Some turned to social media from the time of their diagnosis onward while others started to search online for information years later.
Young people we talked to knew of type 1 diabetes charities such as Diabetes UK and Juvenile Diabetes Research Foundation (JDRF), and regularly looked at their websites and followed their activities and events on their social media accounts such as Twitter, Instagram and Facebook. Several young people have fundraised for such charities by organising events in their school, university or community or by participating in sport events. In addition a few, like Katie and Lydia, became charity ‘ambassadors’ to help raise awareness of type 1 diabetes, and Robert volunteers in a research committee that reviews type 1 diabetes projects.
Some people looked online to find out about other people’s experiences of living with type 1 diabetes, to learn about treatments and how to cope with the ‘hurdles’ of managing it. For Linda, finding out about other people’s experiences of diabetes has helped her normalise her own experience while for Sophie it has provided the encouragement she needed to improve the management of her diabetes. Lydia said that social media provides a community based on familiarity because ‘everybody is going through the same problems’.
Young people said that online discussion groups and blogs provide emotional support that is based on their shared experience. People have joined Facebook, Twitter or Instagram groups for people with type 1 diabetes to connect with others and hear about the ‘good’ and ‘bad’ bits of their experiences of managing type 1 diabetes. Young people who didn’t know anyone else with diabetes found the online support helpful. It could be reassuring to know that other young people faced similar difficulties when managing diabetes.
Young people use online groups and blogs differently and while some posted regularly on social media or wrote their own blogs, others used it less frequently and limit their use to reading others’ posts but they wrote little or not at all themselves. A few young people said that their online activity is limited to finding about particular issues or to a closed Facebook group made up of people who knew each other beforehand. Helping others and educating the public about the differences between type 1 and type 2 diabetes motivates young people to write blogs and on public forums.
Problems with looking online for information and support were also mentioned. Linda said that you find all sort of things including ‘scary stories’. Lewis parents pointed out that some of the information found online could have an impact on younger teenagers like Lewis and particularly if it is posted by ‘famous’ or ‘influential’ people. They said that not everything people find and read online is based on facts and that sometimes you can receive conflicting advice. They think that there is a need to provide supervised online spaces to those in their early teens.