A Q-Sort Analysis Investigating the Social Perception of a Chronic Disease: Between Sympathy and Stigma

By Boros, Smaranda; Visu-Petra, Laura et al. | Cognitie, Creier, Comportament, June 2007 | Go to article overview

A Q-Sort Analysis Investigating the Social Perception of a Chronic Disease: Between Sympathy and Stigma


Boros, Smaranda, Visu-Petra, Laura, Cheie, Lavinia, Cognitie, Creier, Comportament


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 Qmethodology, 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.

INTRODUCTION

1.1. Epilepsy perception within contemporary societies

Epilepsy is a brain disorder characterized by an enduring predisposition to generate epileptic seizures and by their neurobiological, cognitive, psychological and social consequences (International League against Epilepsy - ILAE, 2005). Seizures can vary from brief lapses of attention (sometimes unnoticeable) to severe convulsions; yet, the general public shares a pervading representation of the severe spectrum of epileptic manifestations (especially the dramatic, "grand mal" seizures). Epilepsy is a generally benign disorder with optimist clinical prognosis (Jacoby, Snape, & Baker, 2005), new antiepileptic agents frequently ensuring remission and less side effects than previous treatments. However, there is a 20- 30% percent of intractable epilepsies, associated with a high risk of psychiatric comorbidity and low quality of life (Lambert & David, 2000). Several recent studies point out the social aspects involved in the perception of this diagnosis: unfortunately, the social prognosis of epilepsy appears to be less optimistic than the clinical one.

Within this general framework, childhood epilepsy is one of the most prevalent neurological conditions in the developing years, with reported rates of 3.6 to 4.2 per 1000 for children in developed countries (Sidenvall, Forsgren, & Heijbel 1996), and approximately double rates in developing countries (Christianson, Zwane, Manga, Rosen, Venter, & Kromberg, 2000).

A diagnosis of epilepsy is an insufficient premise for any inference to be made regarding a specific pattern of neuropsychological dysfunction, yet the same diagnosis seems to be an accurate predictor of cognitive and academic difficulties in the case of childhood epilepsy (Petra & Benga, 2004). It is unclear, at this time, if learning disabilities are a direct consequence of epilepsy, medication, seizures, or with underlying neuropathology (Benga, 2003). Our study aims at employing a different approach to the investigation of both knowledge and attitudes in the social representation of this disorder, assuming that these could account for the discrepancy between cognitive-behavioral potentialities and their actual manifestations in people with epilepsy.

1.2. Social perception of chronic illnesses

The notion of stigma (Goffman, 1963) appears to be one of the most important factors that influence the impact of this disorder upon the individual and the family (Baker, 2002). According to Goffman, stigma creates "an undesired differentness"; fundamental theories emphasizing its functional role in delineating normal from deviant behavior in society (Durkheim, 1964). …

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