Personalized Epilepsy Stigma Programs: What a Systematic Review Found

What was studied

This systematic review examined personalized programs intended to reduce epilepsy-related stigma or improve related psychological and quality-of-life outcomes. The researchers screened 1,454 records and included 74 studies from 34 countries.

Of these, 45 studies directly evaluated personalized anti-stigma interventions, while 29 indirectly assessed their potential impact on stigma through related outcomes. Personalization was coded across age, culture, clinical or condition-specific factors, and setting.

What they found

Overall, 58 of 74 interventions (78.4%) reported favorable outcomes. Favorable outcomes were reported for 33 of 35 highly personalized interventions (94.3%), compared with 19 of 26 moderately personalized interventions (73.1%) and 6 of 13 interventions with low or basic personalization (46.2%). The review found an association between greater personalization and more favorable outcomes.

Limits of the evidence

The results show an association, but they do not establish that greater personalization caused better outcomes. Some studies assessed potential effects on stigma indirectly through psychological or quality-of-life outcomes. The abstract does not describe individual study designs, participant numbers, intervention types, definitions of favorable outcomes, follow-up periods, or study quality. Few interventions targeted adolescents and transitional-age youth, and most studies were conducted in high-income countries, leaving less evidence for these populations and for low- and middle-income countries.

For families and caregivers

Programs tailored to a person's age, culture, epilepsy-related needs, and setting may be associated with more favorable outcomes than less personalized programs. However, the evidence does not identify a single best approach. The review calls for strategies that are collaboratively developed, culturally relevant, and developmentally tailored.

What to watch next

Future research should use standardized outcomes and long-term follow-up, include more adolescents and people in low- and middle-income countries, and examine structural approaches intended to support sustainable stigma reduction.

Terms in this summary

epilepsy-related stigma

Negative beliefs, unfair treatment, shame, or social exclusion connected with epilepsy.

internalized stigma

When a person accepts negative beliefs about epilepsy and applies them to themselves.

perceived stigma

A person's sense or expectation that others hold negative views about them because of epilepsy.

enacted stigma

Direct experiences of discrimination, rejection, or unfair treatment because of epilepsy.

courtesy stigma

Stigma experienced by family members, caregivers, or others because of their connection to a person with epilepsy.

systematic review

A structured effort to find, assess, and summarize relevant studies addressing a research question.

psychosocial outcomes

Measures involving psychological or social well-being, such as emotional health, relationships, or daily functioning.