Health
Study Reveals Epilepsy Prevalence & Treatment Barriers in Uganda, Urgent Need for Awareness & Resources
By Davidson Ndyabahika & Julius Mugaga Tukacungurwa
A new study conducted in Uganda has unveiled the prevalence of epilepsy and identified significant barriers to treatment. The study conducted by Makerere University School of Public Health in partnership with Ministry of Health and Duke Global Neurosurgery and neurology, utilized community-based screening methods, found that urgent action is needed to increase awareness and allocate more resources to address this pressing public health issue.
Nearly 80% of individuals with epilepsy reside in low- and middle-income countries (LMICs), and a staggering 75% of those with epilepsy in LMICs do not have access to treatment. This alarming trend is further exacerbated by the stigma surrounding epilepsy, which often leads people to avoid seeking medical care due to fear of discrimination or social ostracization. The study underscores the urgent need to address the barriers to treatment, including stigma, and allocate more resources to improve epilepsy care in LMICs.
By providing a community-based descriptive statement about epilepsy in Uganda, this study sought to contribute vital information for intervention planning, addressing the urgent need for increased awareness, support, and access to treatment for people living with epilepsy in Uganda.
At the Epilepsy National Prevalence Study Dissemination and Dialogue meeting held on Wednesday, April 5, 2023 at the Golden Tulip Hotel in Kampala, Professor Anthony Fuller, the USA & Duke Neurosurgery Principal Investigator, revealed concerning findings.
The study unveiled that the national prevalence rate of epilepsy in Uganda is alarmingly high at 1.69 per cent, indicating that over 770,000 Ugandans are living with the disease. Professor Fuller’s presentation shed light on the urgent need for increased awareness, support, and intervention for those affected by epilepsy in Uganda.
During the investigation, participants were asked about their experiences with epilepsy, including symptoms such as shaking, falling, loss of consciousness, bladder control, and abnormal sensations. These questions were part of the primary screen in Phase One of the study, aimed at gathering information on epilepsy-related experiences in the past year.
With a meticulous screening process, the study examined 35,056 individuals suspected to have epilepsy, of whom 2,284 were found positive for unadjusted epilepsy, translating to a prevalence rate of 6.52% in the primary phase.
In the secondary phase, 732 individuals were confirmed positive for unadjusted epilepsy, resulting in a prevalence rate of 2.09%. In this phase, participants were asked about the frequency of attacks, occurrence in children during fever, and association with malaria-related hospitalization. These questions sought to gather additional information to aid in assessing and analyzing the nature and context of participants’ experiences with epilepsy.
Through rigorous clinical validation, including Neuro validation and electroencephalogram (EEG) tests, 594 individuals were confirmed to have epilepsy, bringing the final prevalence rate to 1.69%.
In the Central region, out of 11,746 individuals screened, 198 were confirmed positive for epilepsy, while 11,548 were negative, resulting in a prevalence rate of 1.69%. In the Eastern region, 125 out of 5,776 screened were positive, with a prevalence rate of 2.16%. In the Northern region, 68 out of 5,037 screened were positive, resulting in a prevalence rate of 1.35%. Lastly, in the Western region, 203 out of 12,497 screened were positive, with a prevalence rate of 1.62%.
These regional findings shed light on the distribution of epilepsy cases in Uganda and highlight the need for tailored interventions and support at a local level. “The epilepsy prevalence is unevenly distributed, ranging from zero to over 5% in specific districts,” says study report.
Dr. Fredrick E Makumbi, an Associate Professor and a Ugandan Principal Investigator for the study from MakSPH, highlighted the gap in community awareness regarding epilepsy treatment, leading to an increased prevalence rate.
He pointed out that the youth, aged 18 to 35, had a prevalence rate of 2.37 percent, while those aged 36 to 60 had a prevalence rate of 2.33 percent. Along with other investigators and participants, Professor Makumbi emphasized the need for further studies to identify driving factors and take equitable action.
Dr. Angelina Kakooza Mwesige, a Co-Principal Investigator for Uganda who is also a Senior Lecturer and Paediatric Neurologist in the Department of Paediatrics and Child Health, Makerere University School of Medicine noted interesting gender regional variations of epilepsy with higher prevalence in women compared to men.
In the Eastern region, the prevalence rate was higher in females at 2.40% compared to males at 1.97%. Similarly, in the Central region, the prevalence rate was 1.81% in females and 1.53% in males. In the Northern region, the prevalence rate was 1.33% in females compared to 1.37% in males, while in the Western region, it was 1.54% in females and 1.72% in males.
This revelation according to Dr. Kakooza has prompted further consideration for conducting a specialized study to investigate the underlying factors contributing to this statistic.
“We found the overall prevalence rate is 1.73% in female compared to 1.63% in male. We do not know the reason yet but we are investigating this. Also, what we found out, the medicine that can help treat this disease and the trained specialists are not enough. We need to ensure equal and free access to medicine for all. I appeal to all Ugandans, a person with this disease, just like any other disease deserves our support and care,” said Dr. Kakooza.
Dr. Daniel Kyabayinze, the Director of Public Health at the Ministry of Health -Uganda, thanked the researchers for the great study and acknowledged that epilepsy requires lifelong treatment and highlighted the need to continuously provide treatment for all those affected.
According to Dr. Kyabayinze, the government plans to use the study’s findings to estimate the treatment needs, and Kyabayinze expressed confidence that further examination by Makerere University School of Public Health’s partners will help identify associated factors, such as potential agents or organisms, that can be modified to combat epilepsy. He also noted that while some individuals are already receiving treatment, many Ugandans face challenges in affording the necessary treatment for epilepsy.
Dr. Kyabayinze emphasized the importance of placing mental health specialists in various locations across the country to ensure access to services, stating, “There is also a need to intensify sensitization efforts to avoid stigmatizing people with epilepsy and ensure they receive the services they need.”
Ms. Nina Mago, Founder and Program Advisor of Purple Bench Initiative, underscores the need policy makers to prioritize healthcare needs of individuals with epilepsy to needs of people with epilepsy. She emphasizes affordable access to good quality medication.
“When you have medication, you have less seizures and you become more confident on being independent, to participate in activities which may include going to school, holding up a job, social interaction but all this is possible when there is also strong awareness,” says Nina.
Ms. Mago, says epilepsy is a life-threatening condition; “I came up with a connotation of a phone battery, as a notification of battery low shows up, equally relates to a life about to be lost.”
Dr. Olaro Charles, the Director Health services – Clinical in the Ministry of Health stated that epilepsy remains one of the common mental health conditions in Uganda. He said that they have just concluded a joint review mission and found out that from all their mental health facilities, epilepsy constitute to almost 55.4% of patients.
“If you look at 2019/2020 they were about 314,000 then came to about 340,000 and then last year it was 251,000. This mapping however is very important because it helps us to plan for care. If we do the same in those regions with high prevalence, we may be able to plan well”. Dr. Oralo.
Dr. Sarah Nekesa, Executive Director of Epilepsy Support Association Uganda, called on members of Parliament to increase the budget for mental health drugs, including epilepsy medication, and ensure their availability. She emphasized the need for integrating epilepsy services with other healthcare services to improve accessibility.
Additionally, Dr. Nekesa highlighted the importance of grassroots awareness to combat stigma, and urged the government to allocate adequate human resources and support from health workers to encourage peer talks and build confidence among people living with epilepsy.
“We should increase the drug availability in health facilities and make sure that a person with epilepsy is able to get medication whenever they need it. Epilepsy is not understood by everyone so if everybody understands epilepsy it would be easier for treatment and stigma to go down and integration of epilepsy in every service that is given to the community”. Said Dr. Nekesa.
Health
Mak Researchers Partner with Safe Bangle Technologies to Roll out a Real-Time Domestic Violence Reporting Bracelet
By Joseph Odoi
A Consortium of Researchers from Makerere University School of Public Health/Resilient Africa Network (MakSPH/RAN), Medical College of Wisconsin (MCW), Somero Uganda together with Safe Bangle Technologies have rolled out a real time domestic violence reporting bracelet.
This roll out was made possible with support from the United States Agency for International Development (USAID) under the PARTNERSHIPS FOR ENHANCED ENGAGEMENT IN RESEARCH (PEER) program and the National Academies of Sciences.
Dr. Juliet Kiguli, the Principal Investigator from Makerere University, along with Dr. Roy Mayega, Deputy Chief of Party at RAN, and Dr. Agnes Nyabigambo, the study coordinator, initiated the PEER program to identify entry points for testing SafeBangle Technologies (a social enterprise based at Resilient Africa Network (RAN) with a mission to create a safer and more secure environment for women and children through innovative, affordable, and creative technology solutions to curb GBV in Africa.) wearable safety bracelet in the informal settlements. This decision stemmed from findings of increased intimate partner violence (IPV) and gender-based violence (GBV) in three informal settlements in Kampala, Uganda, following a longitudinal study, geospatial mapping, and interviews. The project, titled ‘The Impact of the COVID-19 Pandemic on Gender-Based Violence among Women and Girls in Informal Settlements in Kampala,’ highlighted the urgent need for affordable and immediate reporting mechanisms for violence.”
‘’While carrying out a study after the Covid-19 Pandemic, we identified gaps when it comes to reporting and response to Gender Based Violence (GBV) among women in informal settlements. Therefore, we used incorporated the SafeBangle intervention to solve the problem of lack of affordable and immediate reporting mechanisms for violence using a bracelet that reports violence in real time’’ explained Dr. Kiguli.
Innovation details
According to Saul Kabali and Messach Luminsa, the innovators behind SafeBangle from SafeBangle Technologies, hosted at the Resilient African Network Lab. ‘’The inspiration behind SafeBangle came from a deeply personal place. ‘’We heard countless stories of women who couldn’t call for help during moments of danger. We were deeply affected by the story of Aisha, a young woman in a rural village who was attacked while walking home alone at night. With no way to call for help, she felt helpless and vulnerable. This incident made us realize the critical need for immediate reporting alert tools, accessible to women like Aisha. We knew technology could play a crucial role and this incident awakened a strong desire in us to create a solution’’
“While developing SafeBangle, we tested with the users in both rural and urban contexts. We piloted the innovation around Kampala with support from Digital Human Righs Lab and Naguru Youth Health Network as well as it in five districts of Karamoja region with support from Save the Children and Response Innovation Lab. Right now it has become handy in Kamapala‘s informal settlements. We envision a future where SafeBangle becomes a standard tool in the fight against GBV, ensuring every woman feels safe and secure as it has the potential to transform how we respond to GBV in Africa” added Kabali.
HOW THE SAFEBANGLE TECHNOLOGY WORKS
The SafeBangle is wearable technology similar to a smartwatch that sends an alarm by SMS to people chosen by a woman herself if she feels threatened.
In terms of the acceptability of the SafeBangle innovation as a solution to GBV among at-risk women in informal settlements Of the 72 adolescent girls and women who received the SafeBangle, 22 activated the reporting button, resulting in 19 receiving immediate and appropriate support, including counseling, police intervention, and health services.
All adolescent girls and women who experienced GBV received a phone call from Somero Uganda to discuss the most appropriate intervention, including counseling, police cases being handled by the probation office, referral for health services, and post-exposure prophylaxis. All the GBV survivors received support and are still receiving continuous follow-up.
Researchers conducted a survey among 644 girls and women in Kinawataka (Nakawa Division) and Bwaise (Kawempe Division) to gain insights into awareness and understanding of sexual and gender-based violence among adolescent girls and women in informal settlements. The survey measured socioeconomic factors, mental health symptoms, and exposure to GBV. Focus group interviews were conducted with a separate sample of women over 18 in the settlements to explore responses to GBV.
A tabular representation of the key findings and lessons learned from your study on gender-based violence (GBV)
| Key Findings | Lessons learned |
| Prevalence of GBV. – Overall prevalence: 34.1% of women and girls reported experiencing GBV. – Among adolescents (15-19 years): Over 50% reported experiencing GBV. | – The pandemic highlighted the need for accessible and comprehensive support services for GBV survivors. – Schools emerged as crucial safe spaces for girls, emphasizing their well-being during crises. – Economic independence proved crucial, enabling women to leave abusive environments. – Involving men and boys as allies in GBV prevention efforts is essential. |
| Age-related trends | – GBV prevalence tends to decrease with increasing age. |
| Physical and health consequences. | – Women and girls suffered physical violence, injuries, and deaths, primarily from domestic violence and unsafe abortions due to limited healthcare access. – GBV resulted in unintended pregnancies, unsafe abortions, and increased risk of sexually transmitted diseases (STIs) like HIV/AIDS. |
| Social and economic impact. . | – GBV contributed to family breakups, strained marriages due to financial stress. – Economic hardships forced some women and girls into transactional sex, exposing them to further health risks and exploitation. – Pandemic-related job losses and economic constraints increased financial dependence on abusers, trapping women in violent situations. – School closures and increased household responsibilities limited women’s job opportunities and subjected them to sexual harassment. |
| Psychological effects | – Survivors experienced guilt, shame, anxiety, fear, and suicidal thoughts due to ongoing abuse. |
| Long-term effects | – Post-COVID-19, survivors faced disrupted education, early marriages, pregnancies, social stigma, and persistent mental health issues. |
Reproductive Health Consequences: GBV resulted in unintended pregnancies, unsafe abortions, and increased risk of sexually transmitted diseases (STIs) like HIV/AIDS.
Family Breakdown: The rise in GBV led to family breakups as women fled abusive relationships. Marriages were strained due to increased financial stress.
Transactional Sex for Survival: Desperate for basic needs due to job losses and economic hardship, some women and girls resorted to transactional sex, exposing them to further health risks and exploitation.
One study participant stated, “The time of COVID-19 was so terrible for some of us. We in fact got a lot of diseases from it because you would want to get food and didn’t have money. That way you would be forced to get a man who would use you and pay.” – (FGD_Girls_19–24years_Kinawataka).
Economic Effects: COVID-19 restrictions caused job losses and limited economic opportunities, particularly for women in the informal sector. This increased financial dependence on abusers and trapped women in violent situations.
Limited Access to Employment: School closures and increased household chores limited women’s ability to seek employment, perpetuating gender inequality in the workforce. Some faced sexual harassment from potential employers.
Psychological Effects: Survivors of GBV experienced guilt, shame, anxiety, fear, and even suicidal thoughts due to the constant threat and unpredictability of abuse.
Post-COVID Effects: GBV survivors faced long-term consequences, including disrupted education, early marriage, early pregnancy, social stigma, and persistent mental health issues.
Lessons learned
The pandemic highlighted the need for accessible and comprehensive support services for survivors of GBV, the significance of schools as safe spaces for girls, and the need to prioritize their well-being during crises. Economic empowerment emerged as a significant protective factor for women and girls. Those with greater economic independence were better equipped to leave abusive environments and secure their safety and well-being, while dependent ones suffered abuses. Engaging men and boys as allies in the fight against GBV and involving them in prevention efforts can help promote positive behavior change and foster more equitable relationships.
Recommendations
To address GBV against women and girls, the researchers recommend the following moving forward;
- There is need to integrate technology-driven solutions like SafeBangle into national GBV prevention and response strategies. SafeBangle can be a valuable tool for policymakers as cases of violence that would have gone unreported will be brought to light and the would-be victims will be able to get immediate help from trusted relatives and friends.
- Provide economic opportunities and vocational training for women and girls to enhance their financial independence and reduce vulnerability to violence. There is therefore a need to introduce education and training programs that empower women and girls, by providing them with skills, resources, and opportunities to start their own ventures and to participate fully in community affairs.
- Strengthen and enforce existing laws and policies related to GBV, including laws against domestic violence, child marriage, and sexual assault without discrimination be it for law enforcers, leaders, and employers where such cases were suffocated. Ensure that perpetrators are held accountable through swift and fair legal processes that have no room for corruption.
- Establish and promote effective, accessible, and confidential reporting mechanisms for GBV incidents that provide confidence and can be trusted by survivors to enhance reporting of such incidences of GBV. Community Engagement and Involvement: Involve community leaders, religious leaders, and elders in discussions about GBV to promote gender equality, change social norms, and reinforce the message that violence against women and girls is unacceptable.
- Launch extensive public awareness campaigns to challenge harmful gender norms, report cases of GBV, raise awareness about the consequences of GBV, and promote positive behaviors and attitudes towards women and girls.
- Implement comprehensive sexuality education in schools and communities, educating young people about healthy relationships, consent, and reproductive rights to be able to make informed decisions about their own lives and well-being.
- Engage men and boys as allies in the fight against GBV, encouraging them to challenge harmful masculinity norms and behaviors. This will help minimize GBV because mostly they are the perpetrators. Strengthening Support for Survivors: Provide ongoing support and follow-up services for survivors of GBV mostly counselling services to aid their recovery and facilitate their reintegration into society.
- Provide ongoing support and follow-up services for survivors of GBV, mostly counseling services to aid their recovery and facilitate their reintegration into society.
- Provide avenues to seek free or subsidized services by survivors of GBV medical services and legal processes by survivors of GBV to enhance reporting of GBV cases, access to medical care, counseling, legal support, and other essential services.
- Encourage and support more research and innovations like SafeBangle to curb incidents of GBV.
- A comprehensive and inclusive approach is required. The efforts should involve government institutions, civil society organizations, community leaders, and individuals working together to address the root causes and provide support to survivors.
- Involve media in GBV prevention activities and for enhancing campaigns against GBV mostly on radio and TV.
MORE ABOUT THE STUDY
The core project team, included researchers at Makerere University School of Public Health (MakSPH), Medical College of Wisconsin (MCW) led by Prof. Julia Dickson-Gomez, SafeBangle Technologies, and Somero Uganda, a community-focused NGO, began the project by designing their research protocol and taking a CITI Program course on human subjects social/behavioral research. Team members also met with the Ministry of Gender, Labour, and Social Development (MGLSG) in support of the gender-based violence policy process, Ministry of Health and local government. They also established relationships with the Kampala Capital City Authority (KCCA) and Nakawa and Kawempe probation offices to support legal processes for the GBV survivors. SafeBangle Team also received an award from Defenders Protection Initiative.
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