Online peer support in daily life with type 1 diabetes

Online peer communities for persons with type 1 diabetes are increasing in Denmark as well as worldwide, and open up a virtual space through which exchange of experience, social support and connections among peers are made possible. This is especially the case with the social media platform Facebook, which is used by 73% of the Danish population.

Earlier studies have shown that internet access can support people with illness 24/7 and that it can supplement face-to-face contact with healthcare professionals. Thus study in general remain lacking on the use and integration of illness related online communities on social media

This PhD study have explored how adults with type 1 diabetes approach online support on Facebook and how searching and sharing of experiential knowledge becomes integrated in daily life with illness. A number of 16 online peer communities for adults with type 1 diabetes were identified on Facebook representing a rising demand for online peer support.

The areas of support covered 5 areas such as; 1) the sharing of experiential knowledge 2) tricks and trade 3) illness-associated identity work 4) social support and connectivity 5) collective voice and mobilization. One of the main findings showed that adults with type 1 diabetes use Facebook as sourcebook for how to tinker with their self-care when the knowledge supplied by healthcare professionals are not directly adaptable to everyday living circumstances. Facebook is a valuable space for inspiration on how to self-care and manage the illness, however being able to filter out the huge amount of informational posts is necessary in order to access relevant support.


About 90% of self-care and management of type 1 diabetes are conducted outside clinical practice and in the homes and daily life of people with the illness. With a digital advance in social media sites and applications it was relevant to explore what type of online and offline support are used, appreciated and integrated in the daily lives of people with type 1 diabetes. 

Fieldwork was carried out throughout Denmark leaning on praxiography and data collecting methods included:

  • A year of online observation of Facebook communities
  • 12 face-to-face practice-near interviews and human-technology observations
  • 6 participant observations at offline peer meetings
  • 2 focus group discussions
  • Follow-up meetings through phone and email


Aim

This PhD study explored how adults with type 1 diabetes engage in social media as they go about in their daily self-care and management of the illness. Research was conducted on how online peer communities are experienced and integrated into everyday living with the illness, which will lead to an enhanced understanding of the areas of everyday life where online peer interaction are experienced as supportive.

The aim was further to:

1) Map out existing type 1 diabetes communities on Facebook
2) Understand how these communities are used as a tool for knowledge related activities in relation to self-caring, managing and living with type 1 diabetes
3) Understand whether peer support on Facebook can be considered supportive in the daily management of the illness.

Collaborators

Department of Anthropology, University of Copenhagen.

It is a three year PhD study running until November 2017.

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