Biomedical Engineering Reference
In-Depth Information
The number of studies that focus on health and the Internet are increasing,
but according to Seale most of this research has so far dealt with either 'the
relationship of people to health information on the internet, the dynamics of
virtual communities in web-hosted discussions and supports groups' or 'the
narrowly defi ned issue of accuracy or quality of information as defi ned by
medical interests' (2005: 516). We still need, Seale argues, more sociologically
informed studies of Internet health representations.
Narratives about aneurysms
This chapter draws on a study of illness experiences and representations
in illness narratives on the Internet. All the stories deal with a condition
in the brain due to a deformation of an arterial vessel, an
intracranial
aneurysm
or
brain aneurysm
. In medical science and practice, intracranial
arterial aneurysm is today regarded as an acquired lesion in which a possible
genetically determined weakness in the vessel wall develops into a ballooning
appendage to the vessel (Tegern and Flodmark 2003). An aneurysm may
result in sudden death or severe symptoms indicating that the aneurysm is
bleeding. Progress in the medical imaging speciality has however resulted in
more and more people without any symptoms or signs of disease, completely
unexpectedly fi nding out that they have such a biological abnormality in
their brain.
If persons who are suffering from bad headaches due to a diagnosed brain
aneurysm want to understand more about their condition as they are waiting
for further tests and surgical intervention, they can turn to the Internet. This
also goes for those who are waiting to recover after surgical intervention
due to a bleeding brain aneurysm or persons without any symptoms who
have been told that they have an arterial brain aneurysm after a computer
tomography. The search string 'aneurysm AND brain' will result in more
than 100,000 hits. Besides strictly scientifi c homepages about aneurysm and
vascular malformation, the patient will fi nd various types of information
sites addressing patients and their relatives. One of those is 'Brain Aneurysm
Narrative-site', linked to the Aneurysm Support Homepage. In April 2005,
more than 800 aneurysm narratives were published on this site, written by
people with symptomatic or non-symptomatic intracranial aneurysms, by
survivors after a ruptured or bleeding aneurysms, by people with preventively
treated aneurysms and by relatives to those who died from it. Every new
narrative, the date of publication and the author's name or pseudonym and
e-mail address is attached chronologically to a constantly growing list at the
rate of approximately two new narratives per week. By clicking on a title the
visitor to the site will go to the individual story.
The analysis in this chapter is limited to stories on the Brain Aneurysm
Narrative-site. This makes the conditions for the analysis a bit different from
some of the earlier studies of illness narratives on the web. Two things usually
characterize homepages encompassing illness stories. First, they are only
