DGNN Epilepsy

Our focus is to improve the care of people with epilepsy in Uganda through collaborations with scholars, policy makers, and patient and community stakeholders. In our initial work, we sought to grow our understanding of the experience of having epilepsy and seeking care in Uganda, with respect for the cultural context and the unique and collective challenges of those touched by the disease.

The stories of epilepsy patients, caregivers, community leaders, and providers, are rich with courage, perseverance, history, traditional beliefs and medicine, and a hope for an ever-improving landscape of care. It is with gratitude that DGNN joins their partners in Uganda in an informed collaborative perspective to strengthen access to care through dedicated clinics, healthcare provider training, and community sensitization.

DGNN Epilepsy Projects

In Uganda, there are fewer than 50 neurology and psychiatry specialty providers for a country of over 42 million persons. It is essential to build the provider workforce that can care for epilepsy patients. In this project, we are adapting the World Health Organization (WHO) mental health GAP epilepsy training module to be relevant to the cultural context, needs, and resources of Uganda. We will partner with the Uganda Ministry of Health for implementation and tracking outcomes of the training.

For more information on this project, click here.

In Uganda, many people believe in a plurality of potential causes for epilepsy, with over two-thirds endorsing demonic possession, witchcraft and ancestral determinism as likely causes, in addition to biologic causation. Importantly, beliefs about etiology are primary determinants of healthcare seeking choices, and those who first seek traditional or pastoral healing have lengthy delays to biomedical care. Many people believe that epilepsy is contagious.  Collectively, these community perspectives justify isolation of people with epilepsy, drive harsh stigmatization and encumber care-seeking pathways. An important step to impact the treatment gap is to improve community epilepsy health literacy, with a focus on the beliefs and misconceptions that drive stigma and deter people from reaching biomedical care. This project will pilot an intervention that is co-designed between patients, families, community leaders, and researchers to improve epilepsy health literacy. For more information on this project, click here.

Recognizing the complexity of potential challenges to medical adherence in LMICs (eg, medical supply chain ‘stock-outs’, cost, health literacy), this study will follow a cohort of patients with epilepsy to examine the relative contributions of various factors to anti-epileptic drug (AED) treatment adherence.

DGNN Epilepsy News

DGNN Epilepsy Publications


Epielpsy Beliefs and Misconceptions Among Patients and Community Samples in Uganda
Citation: Kaddumukasa M, Smith PJ, Kaddumukasa MN, Kajumba M, Almojuela A, Bobholz S, Chakraborty P, Sinha DD, Nakasujja N, Kakooza-Mwesige A, Gualtieri A, Onuoha E, Nakku J, Sanchez N, Muhumuza C, Fuller AT, Haglund MM, Koltai DC. Epilepsy beliefs and misconceptions among patient and community samples in Uganda. Epilepsy Behav. 2020 Aug 3:107300. doi: 10.1016/j.yebeh.2020.107300. Epub ahead of print. PMID: 32758405.
PubMed ID: 32758405
DOI: 10.1016/j.yebeh.2020.107300
Barriers to Biomedical Care for People with Epilepsy in Uganda: A Cross Sectional Study
Citation: Kaddumukasa MN, Kaddumukasa M, Kajumba M, Smith PJ, Bobholz S, Kakooza-Mwesige A, Sinha DD, Almojuela A, Chakraborty P, Nakasujja N, Nakku J, Gualtieri A, Onuoha E, Kolls BJ, Muhumuza C, Smith CE, Sanchez N, Fuller AT, Haglund MM, Koltai DC. Barriers to biomedical care for people with epilepsy in Uganda: A cross-sectional study. Epilepsy Behav. 2020 Sep 19:107349. doi: 10.1016/j.yebeh.2020.107349. Epub ahead of print. PMID: 32962922.
PubMed ID: 32962922
DOI: 10.1016/j.yebeh.2020.107349
Hospital-Based Epilepsy Care in Uganda: A Prospective Study of Three Major Public Referral Hospitals
Citation: Fuller AT, Almojuela A, Kaddumukasa MN, Chakraborty P, Smith PJ, Kolls BJ, Van Belleghem F, Muhumuza C, Nshemerirwe S, Kaddumukasa M, Nakasujja N, Nakku J, Kakooza-Mwesige A, Haglund MM, Koltai DC. Hospital-based epilepsy care in Uganda: A prospective study of three major public referral hospitals. Epilepsy Behav. 2020 Aug 27:107301. doi: 10.1016/j.yebeh.2020.107301. Epub ahead of print. PMID: 32861671.
PubMed ID: 32861671
DOI: 10.1016/j.yebeh.2020.107301
Leveraging the Lessons Learned from Studies on the Cultural Context of Epilepsy Care in Uganda: Opportunities and Future Directions
Citation: Kakooza-Mwesige A, Kaddumukasa M, Koltai DC, Kaddumukasa MN, Nakasujja N, Kajumba M, Nakku J, Kolls BJ, Fuller AT, Teuwen DE, Haglund MM. Leveraging the lessons learned from studies on the cultural context of epilepsy care in Uganda: Opportunities and future directions. Epilepsy Behav. 2020 Aug 28:107302. doi: 10.1016/j.yebeh.2020.107302. Epub ahead of print. PMID: 32868221.
PubMed ID: 32868221
DOI: 10.1016/j.yebeh.2020.107302

more epilepsy publications