Disclosure management behaviors in Korean adults with well-controlled epilepsy: Their relation to perception of stigma

Abstract

Purpose: In spite of the fact that epilepsy is a concealable stigmatized identity, there is little evidence pertaining to disclosure management in adults living with epilepsy. We determined the factors contributing to disclosure management strategies in adults living with well-controlled epilepsy.

Methods: This was a cross-sectional multicenter study. Korean adults whose seizures had remitted for at least one year participated in this study. Using statistical analyses, we determined whether disclosure management behaviors measured using the Disclosure Management Scale (DMS) were related to demographic, clinical, and psychosocial variables. The Stigma Scale and Hospital Anxiety Depression Scale (HADS) were used.

Results: Of a total of 225 participants, 76% stated that they often or sometimes kept their epilepsy a secret, while 24% reported that they never or rarely kept their diagnosis hidden. The mean DMS score was 6.1 (SD=2.4). In univariate analyses, the DMS scores were significantly related to the HADS depression scores (r=0.187, p=0.005) and the presence of perceived stigma (p=0.001). In linear regression analyses, perceived stigma was identified only as an independent factor associated with DMS scores (p=0.031), while HADS depression lost significance (p=0.057). The presence of perceived stigma explained only 4.6% of the variance in DMS scores.

Conclusions: Our study shows that over 70% of Korean adults with well-controlled epilepsy often or sometimes keep their epilepsy a secret. Although perceived stigma is associated with concealment behaviors, it accounts for only a small proportion of the variance in disclosure management.