Healthcare provider perspectives regarding epilepsy care in Uganda

Objective

Epilepsy is the most common chronic neurological disorder in the world and imposes
a large economic burden on global healthcare systems, especially in low-income settings
and rural areas as is found in sub-Saharan Africa (SSA). Despite the high epilepsy
prevalence, there are no systematic descriptions of healthcare provider (HCP) perceptions
and needs in managing people with epilepsy (PWE) in Uganda. Identifying these perceptions
and needs is crucial for understanding community priorities, thereby enhancing the
development of culturally sensitive communications, interventions, and research approaches.

Methods

In this qualitative study, we used semistructured interview guides to conduct focus
group discussions that explored the perspectives of 32 providers of epilepsy care
from health facilities around Mbarara, Uganda. Our sample included nonspecialized
general physicians (n = 3), medical residents (n = 8), medical clinical officers (n = 3),
psychiatric clinical nurses (n = 6), medical nurses and nursing assistants (n = 9),
and other providers (n = 3), who were loosely grouped into discussion groups based
on level or type of training. Self-assessed proficiency ratings were also administered
to gain a better understanding of participants’ confidence in their training, preparedness,
and capabilities regarding epilepsy care. Thematic analysis of the focus group transcripts
was conducted to ascertain commonly occurring themes about perceptions and challenges
in epilepsy care.

Results

Our analyses identified nine major themes that dominated the perspectives of the study
participants: care management, medications, diagnostics, HCP training, human resources,
location, patient education, social support, and community knowledge and beliefs.
Proficiency ratings prioritized areas of confidence as knowledge related to referrals,
psychosocial impacts, and seizure neurophysiology. Areas of need were revealed as
knowledge of diagnostic tools and antiepileptic drug (AED) regimens.

Conclusions

Our findings delineate the perspectives of providers caring for PWE, with consistent
recognition of challenges centering around resource augmentation, infrastructure strengthening,
and education. Participants emphasized the urgent need to augment these resources
to address limitations in medication types and access, trained human resources, and
diagnostic tools. They overwhelmingly recognized the need for infrastructure strengthening
to address human, diagnostic, medicinal, and capital resource limitations that place
undue burden on patients with epilepsy and physicians. Providers indicated a clear
desire to learn more about different diagnostic tools and medical management practices,
potentially through continuing education, specialized training, or more intentional
in-school diagnostic preparation. They also advocated for the powerful influence of
patient and family education and clearly articulated the need for community sensitization
and support.

This article is part of the Special Issue “The intersection of Culture, Resources,
and Disease: Epilepsy Care in Uganda”

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