Implementing integrated services for people with epilepsy in primary care in Ethiopia: a qualitative study

Abstract

BackgroundIn order to tackle the considerable treatment gap for epilepsy in many low- and middle-income countries (LMICs), a task sharing model is recommended whereby care is integrated into primary health services. However, there are limited data on implementation and impact of such services in LMICs. Our study aimed to explore the perspectives of service users and caregivers on the accessibility, experience and perceived impact of epilepsy treatment received in a task-shared model in a rural district of Ethiopia.MethodsA qualitative study was carried out using interviews with purposively sampled service users (n = 13) and caregivers (n = 3) from a community-ascertained cohort of people with epilepsy receiving integrated services in primary care in rural Ethiopia. Interviews followed a topic guide with questions regarding acceptability, satisfaction, barriers to access care, pathways through care and impact of services. Framework analysis was employed to analyse the data.ResultsProximity of the new service in local primary health centers decreased the cost of transportation for the majority of service users thus improving access to services. First-hand experience of services was in some cases associated with a willingness to promote the services and inform others of the existence of effective biomedical treatment for epilepsy. However, most service users and their caregivers continued to seek help from traditional healers alongside biomedical care. Most of the care received was focused on medication provision with limited information provided on how to manage their illness and its effects. Caregivers and service users spoke about the high emotional and financial burden of the disease and lack of ongoing practical and emotional support. The majority of participants reported clinical improvement on medication, which in over half of the participants was associated with ability to return to money generating activities.ConclusionsTask-sharing improved the accessibility of epilepsy care for services users and caregivers and was perceived as having a positive impact on symptoms and productivity. Nonetheless, promotion of self-management, holistic care and family engagement were highlighted as areas requiring further improvement. Future work on implementing chronic care models in LMIC contexts is warranted.Electronic supplementary materialThe online version of this article (10.1186/s12913-018-3190-y) contains supplementary material, which is available to authorized users.

Development and Evaluation of a Pediatric Epilepsy Training Program for First Level Providers in Zambia

“…Additionally, a general positive impact on attitudes for providers in treating epilepsy was seen, similar to other epilepsy task-shifting efforts in the developing world, where increased care access for epilepsy was subsequently noted. 21,22,24 An additional benefit seen by implementation of our program was engagement of the community and Zambian health system. The referral hospitals, local clinics, district health offices, and Ministry of Health all acknowledged the gaps present for epilepsy care of children in the country and provided strong support for the success of our program.…”

“… 17 This highlights a weakness of many training programs of this nature, particularly in areas where clinical knowledge and experience of first level providers is typically limited to the designated medical needs of the region, with epilepsy and neurologic conditions often neglected. Thus, while task shifting has long been pursued as a method to increase access to care in the developing world, 32 and successful utilization for convulsive epilepsy recognition across all ages has been demonstrated in several programs, 20 - 24 ,33 the complexity required for pediatric seizures and epilepsy must be considered. The base knowledge of these providers is limited in this area and training programs need to work in a style that they are familiar with to deliver impact, particularly for pediatric epilepsy, which requires extensive simplification for appropriate management at the level of a primary care provider, while maintaining appropriate standards of care.…”

“…Additionally, a general positive impact on attitudes for providers in treating epilepsy was seen, similar to other epilepsy task-shifting efforts in the developing world, where increased care access for epilepsy was subsequently noted. 21 , 22 , 24 …”

“… 5 , 18 - 20 Beneficial impact in regards to recognition of epilepsy, reducing stigma, and improving health seeking behaviors and treatment adherence by people with epilepsy has been seen in both large and small programs targeting epilepsy at the community worker or primary provider level. 21 - 25 However, these programs typically focus on convulsive epilepsy in patients of all ages. Training for more subtle pediatric seizure management issues is more complex yet remains in high need in the developing world.…”

Performance of Primary Health Care Workers in Detection of Mental Disorders Comorbid with Epilepsy in Rural Ethiopia

“…In Ethiopia, implementation of mhGAP in primary care settings has been shown to improve identi cation of people with psychosis and epilepsy (17), but not depression (18). Qualitative exploration indicated unmet emotional needs in the people receiving mhGAP epilepsy care (19). However, there have been very few studies to investigate the identi cation of comorbid mental disorders in people with epilepsy, especially in sub Saharan Africa.…”