Self-Disclosure Patterns Among Children and Youth with Epilepsy: Impact of Perceived-Stigma

Abstract

This review aimed to synthesize the minimal existing literature on the impact of perceived stigma on self-disclosure patterns among children and youth with epilepsy (YWE). Initial literature searches were conducted in PsycInfo, Scopus, Web of Science, and PubMed using search terms focused on epilepsy, pediatrics, disclosure, and/or stigma. Articles were included if they were original human research articles published in peer-reviewed journals that were accessible in English through Cincinnati Children’s Hospital Medical Center Pratt Library and fit study aims. Thirteen articles, which primarily used qualitative self-report methodologies, fit the study’s inclusion criteria. YWE report greater perceived stigma and lower illness disclosure compared to youth with other chronic health conditions. Across studies, perceived stigma was consistently identified as a barrier to YWE disclosing their epilepsy diagnosis. Consequences of perceived stigma included lower self-esteem, poorer perceived competency, lack of self-confidence, social withdrawal, and lower quality of life. YWE’s reluctance to disclose epilepsy was associated with worry about differential treatment, negative impact on close relationships, negative impact on others’ perceptions, and negative self-perceptions. While WHO and ILAE have identified stigma as contributing to higher disease burden in people with epilepsy and have highlighted the importance of prioritizing social policy focused on decreasing epilepsy-related stigma, progress has been incremental and much work remains. Future research is needed to understand socio-cultural factors perpetuating stigma among YWE in order to further develop, evaluate, and disseminate evidence-based clinical and education programming to combat epilepsy-related stigma.

Stigma and psychosocial problems in patients with epilepsy

“…Stigma manifests through discrimination, exclusion, and the imposition of a sense of being different by society. Felt stigma refers to an individual's subjective experience of perceiving themselves as different due to their illness and the fear of potential social exclusion, even in the absence of direct discrimination [9]. Stigma plays a pivotal role in isolating individuals with epilepsy from society.…”

The Role of Shame, Stigma, and Family Communication Patterns in the Decision to Disclose STIs to Parents in Order to Seek Support

“…The DD-MM [ 11 ] integrates and provides “a framework to predict decisions to disclose… [including the elements of] disclosure uncertainty, managing uncertainty regarding the information, the relationship, and efficacy in evaluating whether or not to share.” The model has been used for a variety of disclosures, including transgender identity [ 30 , 31 ], various health issues (e.g., epilepsy [ 32 ] and mental health [ 33 , 34 ]), and even within a variety of contexts (e.g., the workplace [ 35 ] and social networking sites [ 36 ]). The model has remained informative to help researchers understand how individuals process the decision to disclose these various pieces of private information to specific others.…”

Pediatric Epilepsy and its Health Conditions in UAE: A Review Article

“…Seizures can affect a child's learning, memory, and focus, adversely affecting academic performance and general quality of life. Moreover, social isolation and psychological issues for the children and their families might be intensified by the stigma attached to epilepsy (Clifford et al, 2023). The present study aimed to enhance the understanding of epilepsy, its types, available treatments, and co-morbidities by contributing valuable insights that can improve the UAE's healthcare system.…”