A Q-SORT ANALYSIS INVESTIGATING THE SOCIAL PERCEPTION OF A CHRONIC DISEASE: BETWEEN SYMPATHY AND STIGMA

ABSTRACT

Although epilepsy has nowadays an optimist clinical prognosis (Jacoby, Snape, & Baker, 2005), several recent studies point out that the social prognosis of epilepsy appears to be less encouraging. Our study aims at employing a different approach in the investigation of both knowledge and attitudes in the social representation of this disorder: Q-methodology (Stephenson, 1935). According to the general principles of Q-methodology, we first conducted semi-structured interviews regarding the perception of children with epilepsy. The interviews tackled 3 main domains: the children�s (perceived) neuropsychological functioning, their academic performance and their social interactions. For each dimension, two types of statements were included: knowledge (true or false) and stigma statements. 40 of these statements were included in a Q-sort procedure applied to 34 respondents: medical staff, parents of children with epilepsy and of non-epileptic children. Their views on children with epilepsy aggregated in three different types of social perception: the rationalist-optimists, the protective-ignorants and the stigmatizers. The meaning and the impact of these social perceptions are discussed in relation to their implications for public health interventions directed at improving the quality of life for people with epilepsy.

KEYWORDS: childhood epilepsy, Q-methodology, social perception, stigma.