Understanding the lived experiences of people living with epilepsy: Oral history assessment in the Shai Osudoku and Ningo Prampram districts, Ghana.

Abstract

Introduction: Epilepsy is a prevalent neurological condition globally, especially in Sub-Saharan Africa. In Ghana, it is one of the top five causes of premature death and disability, impacting children's neurological development and learning outcomes. Although 25% of epilepsy cases are preventable, many go undiagnosed and untreated. People with epilepsy face social stigma and rejection, hindering their ability to seek healthcare, employment, and social interactions, which worsens their self-esteem and social integration.

Purposes: The study aims to address the critical gaps in understanding and supporting people living with epilepsy (PLWE), through recording and analysing their experiences, and seeks to inform policy and practice, finally contributing to improve healthcare delivery, reduce stigma, and enhance support systems for PLWE.

Methods: A qualitative research design was employed for the study. Oral histories (OHs) were conducted with ten PLWE. These interviews encourage interviewees to focus on the life stories and experiences that mean the most to them and can be shared in their own words The interview questions were constructed in English and conducted in English, Twi, Ga and Dangme.

Results: The residents of Shai Osudoku and Ningo Prampram hold robust religious convictions and engage in profound spiritual practices as is the case throughout Ghana. When faced with health challenges, the PLWE and their caregivers often seek assistance from faith-based spiritual healers, including pastors or religious leaders, as their initial source of support and healing. These healers provide care by offering prayers, spiritual counselling, and incorporating various religious rituals into their healing practices. It was revealed that many PLWE, caregivers and community members perceived epilepsy differently. Some perceived it as a spiritual or demonic disease. Whilst others attributed to curse and disease of witches, idols, or gods. However, the healthcare practitioners perceived epilepsy as a medical condition. Also, it was found that individuals faced challenges, such as stigma and discrimination.

Conclusion: It is recommended that public education on epilepsy be intensified. Furthermore, there is the need to ensure that PLWE have access to improved healthcare to increase their quality of life.