Stigma reduction interventions for epilepsy: A systematized literature review

Area of Science:

• Neurology and Public Health
• Social Determinants of Health
• Stigma Research

Background:

• Epilepsy is a neurological disorder globally affected by significant stigma.
• Stigma towards people with epilepsy (PWE) negatively impacts their quality of life and access to care.
• Existing sensitization efforts have shown limited success in reducing epilepsy-related stigma worldwide.

Purpose of the Study:

• To systematically review and summarize existing literature on interventions aimed at reducing stigma towards people with epilepsy (PWE).
• To consolidate knowledge on the outcomes of various stigma reduction strategies.
• To identify gaps and propose future directions for epilepsy stigma intervention research.

Main Methods:

• A systematized literature review was conducted, searching MEDLINE and Embase from 1970 to 2017.
• Included studies described stigma reduction interventions for epilepsy; excluded were reviews, editorials, and non-intervention studies.
• Studies were thematically grouped by intervention type, and interventions, outcomes, and results were summarized.

Main Results:

• 32 studies met inclusion criteria, detailing interventions in public awareness, policy, schools, and targeted support for PWE and caregivers.
• The reported efficacy of these interventions was mixed.
• A significant limitation identified was the frequent lack of validated outcome measures to assess stigma reduction.

Conclusions:

• Despite numerous interventions, stigma and discrimination against PWE persist globally.
• Most reviewed studies were from high-income countries, yet the need is greater in low- and middle-income countries (LMICs).
• There is a critical need for developing effective stigma reduction strategies, particularly in LMICs, and for validating robust outcome measures to assess intervention efficacy.