Community perceptions and attitudes towards people living with epilepsy in Nsambya, Kampala

Abstract

Introduction: Epilepsy is amongst one of the many health problems faced by society and that the condition is quite common in Uganda. Community perception and attitude towards epilepsy are important determinants in epilepsy care because they affect the help-seeking behaviour of people with epilepsy. This study explored the perception and attitudes of the community towards people living with epilepsy in Nsambya with four objectives: (a) To explore community perceptions towards people living with epilepsy, (b) to determine prevailing attitudes towards people living with epilepsy, (c) to explore the lived experiences of people and families with epilepsy and (d) to identify the existing support systems that are in place to help people with epilepsy. Methodology: The study adopted a cross-sectional descriptive design with both qualitative and quantitative methods of data collection. A total of 106 respondents, 99 primary respondents and 7 key informants were recruited to obtain their responses in line with the study objectives. Results: The study found that community members perceived epilepsy as a falling disease and viewed people living with epilepsy as a special group that needs care and love. Secondly, the community members had a positive attitude towards disclosing epilepsy status, management of the disease, socialization with them and employing them. Thirdly, the study found that PLWE face challenges such as absence of adequate information about coping with epilepsy, rejection by family and neglect, stigma, unemployment, financial constraints, poor health facilities, sexual harassment, education access and negative community attitude. However, these have adopted coping strategies such as interacting with others, therapy, family support, seeking government and NGOs support, selling personal assets and going for prayers. Conclusion and Recommendations: The study concluded that community members have positive perceptions and attitude towards PLWE. The lived experience of PLWE is challenging and these have adopted some strategies to cope with the challenges. The study recommends that that medical doctors, community psychiatric nurses and NGOs that are into health should embark on intensive public and community education on epilepsy as a medical condition that needs early diagnosis and treatment to change the entrenched perception about epilepsy.