Shame, stigma, and social exclusion: The lived experiences of epileptic patients in a health facility in Ilorin, Nigeria

ABSTRACT

Background

The highest number of persons living with epilepsy (PLWE) are in Africa and the majority live in deplorable conditions, while dealing with varying layers of stigma, social exclusion, and discrimination.

Objective

This study explored the lived experiences of PLWE in Ilorin.

Methods

Adopting a qualitative design and a phenomenological lens, 10 PLWE between the ages of 18 and 60 were purposively selected from the University of Ilorin Teaching Hospital (UITH) for in-depth interviews.

Results

Findings suggest that PLWE bear multiple and intersecting burdens, including physical injuries; institutional, cultural, and economic constraints; psychological strain; social exclusion; and stigma. These disadvantages are often sustained and reproduced by various assumptions about epilepsy; as such, PLWE conceal their condition, and this implicatively reinforce stigma. Difficulty sustaining intimate relationships, overt physical scars, and inferiority complexes are recurrent challenges for PLWE. The study showed that adherence to drugs, self-management, personal precautions towards seizure signs, and family support are important coping strategies.

Conclusion

The study recommends that it is imperative to enhance and sustain systems, processes, and attitudes that prioritise the physical, social, and emotional needs of PLWE, because this is significant for their enhanced quality of life (QoL).

KEYWORDS:

• Epilepsy
• people living with epilepsy (PLWE)
• seizure
• culture
• activities of daily living

Disclosure statement

No potential conflict of interest was reported by the author(s).