Abstracts

Rationale: The high prevalence of perceived stigma in people with epilepsy, its influence on prognosis, and the potential for stigma reduction through intervention all point to the importance of its measurement. Van Brakel’s review1 recommended the development of generic stigma assessment tools that would be applicable to a wide variety of chronic illnesses. We studied the internal reliability and convergent construct validity of two scales from the mental illness literature, The Stigma Scale (TSS) and Internalized Stigma of Mental Illness scale (ISMI), when applied to adults with epilepsy, compared to the commonly used 3-item Felt Stigma Scale (FSS). We hypothesized that scores on the CD-RISC 10 Resilience scale would be significantly related to the subscales of TSS and ISMI that measure positive aspects of illness and resistance to stigma, respectively. Methods: To adapt the TSS and ISMI stigma questionnaires, the word “epilepsy” replaced phrases pertaining to mental illness on each item. The 28-item TSS comprises three subscales: Discrimination, Disclosure, and Positive Aspects. The ISMI is a 29-item questionnaire composed of five subscales: Alienation, Stereotype Endorsement, Discrimination Experience, Social Withdrawal, and Stigma Resistance. The FSS containing 3 items is the most common measure of perceived stigma in epilepsy. Resilience may be a protective factor negatively related to felt stigma. The CD-RISC measures resilience. Questionnaire packages including demographics and seizure information were mailed to 73 adults living in Nova Scotia selected from the 2004 - 2008 records of two epileptologists. The inclusion criteria were a diagnosis of epilepsy (temporal lobe or non-temporal lobe), age between 18 and 65, English speaking, and grade 8 education attainment. Persons with pseudoseizures or surgical treatment were excluded. Results: The response rate was 37%. The mean age was 38 years, mean duration of seizures was 12 years, and mean seizure frequency was 2.7 per month. Seizure severity was mild (Liverpool Seizure Severity Scale score of 0.7). The modified TSS and ISMI showed excellent internal consistency (Cronbach alpha =.93 and .94, respectively), and moderate convergent validity with the FSS (Pearson r = .588, .512, respectively) in this epilepsy sample. The Positive Aspects and Stigma Resistance subscales embedded in the TSS and ISMI, respectively, correlated significantly with the CD-RISC 10 Resilience scale (r = -47*, -.48*). Discrimination and Disclosure in the TSS, and Alienation, Stereotype Endorsement, Discrimination Experience and Social Withdrawal in the ISMI correlated better with the CD-RISC 10 than with their respective internal measures of resilience. Conclusions: Perceived stigma scales designed recently for mental illness can easily be adapted and are found to be reliable and valid measures in adults with epilepsy. An important advantage over the brief FSS is their multi-dimensionality. However their internal scales reflecting positive adaptation can be improved by substituting the CD-RISC 10.