Shifting Behaviors and Attitudes of Socially Stigmatizing Illnesses to Improve Wellbeing: A Conceptual Framework for Epilepsy

Abstract

The attitudes and behaviors towards people living with neurological conditions, such as epilepsy, have major implications for the quality of life of affected individuals and for human progress more broadly. Epilepsy is a common neurological disorder often associated with misconceptions leading to discrimination, stigma, and burden for people living with epilepsy (PLWE) and their families. Addressing these negative factors and improving the quality of life has become a crucial area of research. This conceptual framework paper explores the potential of attitude and behavior change to enhance the quality of life for PLWE and their families. The study was conducted in rural Limpopo and Mpumalanga provinces (South Africa), employing an explanatory sequential mixed method approach. Participants included were PLWE (n = 163), their family members and caregivers (n = 519), healthcare practitioners (n = 102), and community members (n = 4290). The findings revealed significant knowledge, awareness, and behavior disparities among participants, with PLWE showing better consistency. Furthermore, the study highlighted the impact of consistency and balance in knowledge, awareness, and behavior on the overall quality of life for PLWE and their families. It is important to have intentional epilepsy education and accurate information sharing to influence attitudes, positive behavior, and improved quality of life for PLWE and their families. While the primary emphasis of this study lies in epilepsy, its implications may extend to other stigmatized and discrimination-prone illnesses, especially those affecting the brain. This highlights the significance of addressing societal attitudes toward such conditions as a measure of social progress.