DOCTORAL THESIS. Statistically, people with low educational attainment and income who have epilepsy suffer more than others from the condition. Not only are they hospitalized with epilepsy more often than others, but they also have less access to specialized neurological care, a University of Gothenburg thesis shows.
Epilepsy is a group of diagnoses covering brain disorders that give rise to recurrent epileptic seizures, which can reduce awareness and cause jerky limb movements, for example, along with other neurological symptoms. The seizures are caused by transient electrical discharges from the nerve cells (neurons) of the brain.
Epilepsy occurs autonomously or as a symptom of other diseases or syndromes. It may be congenital or arise after such events as stroke, tumor growth or a severe infection. Very often, its cause is impossible to pinpoint.
Most people with epilepsy stop getting seizures after a few years’ medication to treat the disorder, and can then live normal lives; but in a third of sufferers, despite drug treatment, the seizures persist. Virtually every aspect of their existence is affected: work and personal life, relationships, the ability to drive, and more.
Disparities in well-being and health care
Photo: Lovisa Aijmer
The author of the thesis in question is Klara Andersson, who obtained her doctorate at the Institute of Health and Care Sciences, part of Sahlgrenska Academy at the University of Gothenburg. She is also a resident physician in neurology at Sahlgrenska University Hospital.
Andersson has studied the stigma associated with epilepsy. This stigma may mean that people get labeled, are discriminated against, and lose social status as a result of the diagnosis, both at work and in their relationships. This may precipitate problems with their mental health.
Andersson also studied socioeconomic factors by means of data from national registers, self-reporting questionnaires, individual interviews and focus group interviews. Thus, the results comprise both population-level statistics and qualitative individual levels of experience.
“We found that, statistically, people with lower educational attainment and income level have more severe epilepsy and, at the same time, a lower degree of access to consultations with neurologists,” Andersson says.
Mental ill-health may play a part
Foreign-born people with epilepsy also rated the stigma levels as higher than their Swedish-born counterparts did, although there was no significant difference in seizure frequency between the two groups. However, the differences disappeared after adjustment for self-rated mental health and symptoms of anxiety.
“That indicates that there may be differing comorbidity in terms of mental ill-health between native Swedes and foreign-born people with epilepsy. We need to get better at detecting and treating this difference and remedying it in clinical follow-up work,” Andersson says.
Medical treatment of epilepsy seizures is the natural starting point in epilepsy care, but social aspects of the disorder also need to be considered if successful results from treatment are to be achieved, the thesis shows. Andersson emphasizes the importance of an individual attitude that takes the patients’ social circumstances into account.
“Social barriers, stigma, and complex medical situations boost requirements for specialized epilepsy care. A multidisciplinary team facilitating communication, education and training, psychological support, and collaboration with external partners is crucial for vulnerable people with epilepsy to get the support they need,” she concludes.
Title: Stigma and socioeconomic outcomes in epilepsy
BY: LOVISA AIJMER / MARGARETA GUSTAFSSON KUBISTA
