Aim and purpose
Peer-to-peer online 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. Previous studies of offline peer support have found that people with type 1 diabetes feel empowered through peer generated social support leading to improved HbA1c (1). Previously, peer-to-peer online communities have been studied as fixed spaces, isolated from the embodied and contextual everyday life setting (2). This study will focus on the interrelatedness of the virtual and the non-virtual worlds in which people with type 1 diabetes operate on a daily basis. Research will be conducted on how peer-to-peer online 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.
Research questions guiding the project
- How do online peer-to-peer communities influence everyday life with type 1 diabetes?
- How are processes and practices of knowledge production and social support in online peer-to-peer communities for persons with type 1 diabetes?
- How do online peer-to-peer communities reshape social relationship in time and space?
- How are boundaries between offline-online social dimensions constituted?
The project runs from 2013-2017.
Design, method and theory
Empirically the project is based on fieldwork in a Danish context of adults with type 1 diabetes. Analytically the study is inspired from the field of Anthropology and Science and Technology Studies with the theoretical approaches of praxiography and social-phenomenology framing the research. The aim is to follow the person with type 1 diabetes to the specific settings (online and offline) where everyday life with the disease is practiced in order to understand how online peer interactions influence everyday life with the illness.
Fieldwork will be carried out using a triangulation of offline and online ethnographic field methods:
- 12 in-home semi-structured interviews and observations of socio-material practices using a ‘think aloud’ method
- 2 focus groups discussions
- 6 participant observations at offline peer facilitated meetings announced through Facebook
- Observations of Facebook communities for adults with type 1 diabetes
Adults with type 1 diabetes enrolled in online peer-to-peer communities on Facebook.
This study will contribute in knowledge on how online peer-interaction influences everyday living with the illness. This knowledge is important in order to tailor online interventions to specific needs of people with type 1 diabetes. Research will further be generated on the way people with type 1 diabetes produce and share experiential knowledge online and how it becomes integrated into everyday life. This type of ‘lived’ knowledge is found to be tailored and situated to specific areas of everyday life relevant to the person with type 1 diabetes. An expected outcome of this study is to develop recommendations for improved person-centred approaches for the inclusion of patient generated knowledge in research projects as well as for the development and tailoring of education tools.
Diabetes Management Research, Steno Health Promotion Centre, Steno Diabetes Center, Denmark.Department of Anthropology, University of Copenhagen, Denmark.
Fisher, E. B. et al.(2012). Peer support for self-management of diabetes improved outcomes in international settings. Health Affairs, 31(1), 130-139.
Carolan, M. (2011), In Individuals with poorly controlled diabetes, a reciprocal peer support programme gives greater 6-months improvement in HbA1c than dose nurse care management, Evidence-Based Nursing, doi:10.1136/ebn1145
Eysenbach, G. et al. (2004), Health related virtual communities and electronic support groups: systematic review of the effects of online peer to peer interactions, BMJ, Vol. 328
Van der Eijk, M. et al. (2013), Using Online Health Communities to Deliver Patient-Centered Care to People With Chronic Conditions, Journal of Medical Internet Research, 15(6):115