Social Capital in Online Migraine Communities

Summary Over the last decades the Internet has dramatically changed the information and network infrastructure and created opportunities for participation and empowerment. This is especially emphasised in the health-care sector. Social media like Facebook (FB) are becoming an integrated part of social life and are likely to become a more important tool for people with chronic diseases in the future. This thesis will therefore address what online communities mean for patients with a chronic disease such as migraine and how they experience the ascribed benefits of online communities. The aim is to gain insight in how migraine communities on FB facilitate interaction. The research question of this thesis is: „How do community ties on online communities provide patients with access to resources that are related to their health?‟ To answer this question a qualitative research design was chosen that combined document analysis, observations and semi-structured e-interviews. A total of sixteen respondents from migraine.com and six respondents from migraine sufferers were interviewed. The data were thematically analysed based on the themes: motives and goals, investment, (meaning of) resources and community ties. The research showed that participants of online communities can have two goals for participation. Firstly they are hoping to find more, other and new information. Secondly, participants are looking for social interaction and support. Some participants spend a substantial amount of their time on the online community but even small gestures were enough to establish interaction. Three types of resources were recognised by participants: information resources, interaction resources and support resources. Information resources included up-to-date, medical and experiential information. Interaction resources include getting advice and feedback. Support resources are based on understanding, empowerment and validation. Shared experiences played an integral part in this, because no one but another patient could grasp the experience of having a migraine. These resources could be accessed depending on the type of tie between participants. No ties indicate no sense of recognition between participants and superficial ties refer to acquaintances, while close ties refer to friendships. It can be concluded that the community ties are essential in gaining access to particular resources. Interaction is necessary to establish community ties and is therefore the driving force behind the production and continuation of social capital. Social capital is a mechanism to access resources and requires individual and collective action. Finally the website of migraine.com that was attached to the FB community illustrated that bringing together information, interaction and support gives patients the opportunity to take up the role of active and informed patient that they are often assigned to.