JMIR Publications

ABSTRACT

Background:

In 2010, a number of newly diagnosed narcolepsy cases among children and adolescents were seen in several European countries as a consequence of comprehensive national vaccination campaigns with Pandemrix® against H1N1 influenza. Since then a large number of people have had to live with the disease and its consequences on daily life such as affected school life, social relationships and activities. Initially the side effects were not well understood and there was uncertainty about whether there would be any financial compensation. The situation remained unresolved until 2016, and during these years affected people sought various ways to join forces to handle the many issues involved, including setting up a social media forum.

Objective:

Our aim is to examine how information was shared, and opinions and beliefs about narcolepsy as a consequence of Pandemrix® vaccination were formed by discussions in the social media.

Methods:

Series of messages posted in a social media forum for people affected by narcolepsy after vaccination are investigated by quantitative and qualitative methods.

Results:

The group activity was high throughout the years 2010–2016, with peaks corresponding to major narcolepsy-related events, such as the appearance of the first cases in 2010, the first compensation paid in 2011, and the law on compensation passed in July 2016. Unusually, the majority (60%) of the group took part in discussions and only 40% were lurkers (compared with the usual 90% according to rule of thumb). The conversation in the group was largely factual and had a decent tone, even though there was a long struggle to get acknowledgement of the link between the vaccine and narcolepsy and regarding the compensation issue. Radical, non-scientific views, such as those expounded by the anti-vaccination movement, did not shape the discussions in the group but were active elsewhere on the Internet. At the outset of the pandemic, there were 18 active Swedish discussion groups on the topic, but most dissolved quickly and only one Facebook group remained active throughout the period.

Conclusions:

The group studied is a good example of social media use for self-help through a difficult situation among people affected by illness and disease. This shows that social media do not by themselves induce trench warfare, but, given a good group composition, can provide a necessary forum for managing an emergency where health care and government have failed or are mistrusted, and patients have to organize themselves so as to cope.