Does social media really help people with diabetes? Researcher Natasja Kingod investigates

How do people with Type 1 diabetes use and apply social media in their everyday life? This theme is studied in a PhD project at the Steno Diabetes Center Copenhagen, Denmark and the Department of Anthropology at the University of Copenhagen. The PhD student and anthropologist Natasja Kingod explains:

The starting point for my PhD was my own involvement in an online community on Facebook for parents of children with Type 1 diabetes. Four years ago, when my eldest daughter was two years old, she was diagnosed with Type 1 diabetes. In my own struggle to understand this illness, I joined one of the first communities on Facebook for people with diabetes. Since then many more communities targeting both people with Type 1 diabetes and their relatives have been established on the platform.

My PhD is about how adults with Type 1 diabetes manage daily life with the help of online and offline peer support. I have followed adults with Type 1 diabetes into online and offline social spaces, including communities on Facebook. As well as observing what is going on, I’ve interviewed and had informal conversations with people about their experiences as well as going to offline meetings of people with diabetes.

Anytime, any place, anywhere

The appeal of Facebook is that it can be engaged with anytime and anywhere through your smartphone.

When the diabetes clinic is closed you can turn to peers on Facebook. When your relatives or best friends are asleep there is always someone within your online Facebook community who has a solution to offer to your problem, a helpful remark or just a supporting ‘like’ to your post.

Many of the communities are entirely peer initiated and peer facilitated. Health care professionals and even relatives are often not welcomed into these communities or have to observe silently in the background.

Practical help

Within the Type 1 diabetes community, Facebook is a convenient way to connect with peers when in doubt about how to self-care. This doubt is very apparent in my research and appears at all times of the day: when a blood sugar level suddenly becomes too high or low; when there is a malfunction of the technology used for regulating blood sugar; or when a combination of food and exercise requires complicated changes to insulin pump settings.

Part of my research emphasizes how people with type 1 diabetes use the online communities as a source of inspiration on how to ‘tinker’ with their self-care. People want individualized knowledge on how to live with their illness. This type of knowledge is highly experiential and based on various ways of tinkering with one’s body, and with self-care technologies in their daily lives. It is not the type of knowledge that you get from a doctor or a nurse.

There is no manual on how to live with type 1 diabetes, which is why people turn to peers online. However, people with diabetes have experience that is valuable for themselves as well as others. It should be acknowledged more within evidence-based medicine.

Sharing stories

Facebook is a medium of sharing – and people with Type 1 diabetes share their stories about diabetes. This can be a real emotional support for others in the community. Some people refer to the communities as “a family with a common diabetes language”. The communities are also used as a get-away from the ‘diabetes police’, which could be relatives, friends or colleagues who might be considered overly concerned when it comes to lifestyle choices particularly about food and exercise.

More personalised New communities keep being created in order to target all facets of care. It is not enough to be a member of a general community on type 1 diabetes. Communities are now targeting insulin pumps, insulin pens, glucose monitor brands as well as food and exercise.

These many communities strive to reduce the noise of irrelevant information and increase personalized care and knowledge. It’s not just about technology – there are also communities for women with Type 1 diabetes.

Helping people get the right information

I have seen a tendency among healthcare professionals to disregard, object to or fear online peer to peer interaction on Facebook. This fear emanates from a belief that there is a lot of misinformation circulating online – and perhaps that there usually is ONE solution to challenges. Of course wrong information may sometimes occur. Nevertheless through 12 months observing these communities I have experienced again and again how misinformation is immediately corrected by several peers within the community.

I think that it is a myth and a prejudice that it is harmful to interact in communities on Facebook with other people with type 1 diabetes. In fact I have witnessed cases where information received from health care practitioners was built on miscommunications or failure to translate the medical language into an everyday language, which has resulted in potentially harmful practices over extensive periods. This could perhaps have been avoided or even prevented if people had accessed peer expertise and support from networks on Facebook in their specific area of concern or doubt.

My research has found really positive news. I know from personal experience how difficult it is to manage diabetes and online communities are filling gaps that could never be met offline. People with diabetes and their families are helping to share the load and give specialised support at all times of day and night.

Sometimes the help is very practical. And sometimes it is a motivating and recognizing online pat on your shoulder from people who know just how you feel.

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