An assessment of access to services for persons with epilepsy In Kasangati town council Wakiso district

Abstract

This study assessed access to services of agencies by persons with epilepsy (PLWE) in Kasangati Town Council Wakiso District. The main purpose of the study was to assess the access to services from organizations to PLWEin Kasangati Town Council in Wakiso district. The specific objectives of the study were; (i) To identify and document the needs of PLWE in Kasangati town council, Wakiso district, (ii) To establish the existing services for Persons living with epilepsy, and (iii) To examine the perceived quality and quantity of services to Persons living with epilepsy. The study was conducted in Kasangati Town Council, Wakiso District in central Uganda, from November 2021 to April 2022. The study was guided by the Behavioral Ecological framework of Healthcare Access and Navigation developed by Marriam Ryvicker, (2019). Methodologically, this was a case studythat involved the use of qualitative approaches to data collection. This is because the researcher needed to gain an in-depth understanding of the needs of the primary participants,the services provided and to unearth the perceived benefits of the services provided by various agencies/organizations and other institutions. The study used a sample size of 30participants, 15 were PLWE and 15 were care givers.Seven (7)key informants were interviewed to provide additional information. Data was collected using interviews, key informants interviews. The study findings revealed low levels of education among most PLWE and their caretakers, attributed to the fact that epilepsy affects cognitive and learning abilities (mental damage); poverty, distance and proximity issues since most of them were living in peri- urban settings; lack of physical assistive devices, and due to the unfavorable health environments for PLWE and their caretakers.Also, the study established that majority of the PLWE could not ably respond to the in-depth qualitative questions. This was because of the severe effects of epilepsy on their functionality including cognition. The findings of the study also established that indeed PLWE were in need of health services, income (money), social and family support, information, physical/ disability services, spiritual nourishment and alternative forms of treatment and environments that were conducive for their survival and functionality.Findings also revealed that most of the PLWE and care takers needed "money", like one caretaker noted..."embeera ya bwaavu" literary, “we are in a state of poverty”. Yet, amidst all these, stigma and discrimination of PLWE were prevalent, whereas care givers lacked information on managing PLWE. The study concludes that PLWE have various needs such as health care, food, clothing adequate accommodation, for a decent standard of living. Central to these needs are the financial resources needed to buy or access all these services. There areinadequacies and lack of appropriate services to PLWE, as argued and confirmed by majority of participants. For example, majority lack clutches and wheel chairs, limiting their physical mobility. Majority of those taking care of PLWE were living in abject poverty, and epilepsy itself abets poverty. The study recommended that that changes be made in policies and laws to address the needs of PLWE,advised that a comprehensive approach to practice with PLWE be adopted and encouraged more research be done about PLWE.