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Publications

Peer-Reviewed Articles

We aim to develop and implement groundbreaking research, innovative interventions, and evidence-based practices aimed at empowering communities and transforming lives. Published in esteemed academic journals, our studies are rigorously reviewed by independent experts, ensuring the highest standards of research integrity and scientific excellence. Explore our publications to delve into the practical applications of our work and witness the tangible impact we are making in global health.

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Perspectives of traditional healers, faith healers, and biomedical providers about mental illness treatment: qualitative study from rural Uganda

Background: Low- and middle-income countries (LMICs) bear a disproportionate burden of mental illness, with limited access to biomedical care. This study examined pathways to care for psychosis in rural Uganda, exploring factors influencing treatment choices. Methods: We conducted a mixed-methods study in Buyende District, Uganda, involving 67 in-depth interviews and 4 focus group discussions (data collection continued until thematic saturation was reached) with individuals with psychotic disorders, family members, and local leaders. Structured questionnaires were administered to 41 individuals with psychotic disorders. Results: Three main themes emerged: (1) Positive attitudes towards biomedical providers, (2) Barriers to accessing biomedical care (3) Perceived etiologies of mental illness that influenced care-seeking behaviors. While 81% of participants eventually accessed biomedical care, the median time to first biomedical contact was 52 days, compared to 7 days for any care modality.

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Yang Jae Lee, Kayera Sumaya Nakaziba, Sophie Waimon, Grace Agwang, Kailash Menon, Sam Samuel, Aaron Damon Dyas, Travor Nkolo, Haba Ingabire, Jason Wykoff, Olivia Hobbs, Rauben Kazungu, Job Basiimwa, Robert Rosenheck, Scholastic Ashaba
and Alexander C. Tsai

Pathways to care for psychosis in rural Uganda: Mixed-methods study of individuals with psychosis, family members, and local leaders

Background: Low- and middle-income countries (LMICs) bear a disproportionate burden of mental illness, with limited access to biomedical care. This study examined pathways to care for psychosis in rural Uganda, exploring factors influencing treatment choices. Methods: We conducted a mixed-methods study in Buyende District, Uganda, involving 67 in-depth interviews and 4 focus group discussions (data collection continued until thematic saturation was reached) with individuals with psychotic disorders, family members, and local leaders. Structured questionnaires were administered to 41 individuals with psychotic disorders. Results: Three main themes emerged: (1) Positive attitudes towards biomedical providers, (2) Barriers to accessing biomedical care (3) Perceived etiologies of mental illness that influenced care-seeking behaviors. While 81% of participants eventually accessed biomedical care, the median time to first biomedical contact was 52 days, compared to 7 days for any care modality.

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Yang Jae Lee, Brandon Fickling, Micah Goode, AnnaBelle Gallaher, Rauben Kazungu, Paul Coffin, Maya Abdel-Megid, Frederick Isabirye, Ibrahim Ssekalo, Scholastic Ashaba, Robert Rosenheck, Alexander C Tsai

Community perspectives to inform the development of a radio program to destigmatize mental illness in rural Uganda: a qualitative study

Background: The stigma attached to mental illness impedes diagnosis, treatment, and access to care for people with mental illness. Scalable interventions are needed to enhance attitudes towards seeking treatment, foster community support, and promote acceptance of individuals experiencing mental illness. We worked with community health workers in the Busoga region of eastern Uganda to develop a radio program aimed at reducing mental illness stigma. We piloted the radio program in focus groups, purposively sampling people with families affected by mental illness and people with families unaffected by mental illness, to understand their perspectives about the program’s acceptability and potential effectiveness. Methods: The 45-minute radio program was adapted from a previously studied community-led theater intervention, produced by community health workers, that demonstrated an individual’s recovery from mental illness. Afterward, we conducted 2 focus group discussions, each involving six participants: n=12; and 17 one-on-one, in-depth interviews. We employed the framework method to inductively identify themes and sub-themes. Results: Participants reported greater understanding of causes of mental illness, treatment options, and greater acceptance of those with mental illness as a result of listening to the program.

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Yang Jae Lee, Ryan Christ, Rita Mbabazi, Jackson Dabagia, Alison Prendergast, Jason Wykoff, Samhitha Dasari, Dylan Safai, Shakira Nakaweesi, Swaib Rashid Aturinde, Michael Galvin, Dickens Akena, Scholastic Ashaba, Peter Waiswa, Robert Rosenheck, Alexander C. Tsai

Differences in mental illness stigma by disorder and gender: Population-based vignette randomized experiment in rural Uganda

Background: Understanding and eliminating mental illness stigma is crucial for improving population mental health. In many settings, this stigma is gendered, from the perspectives of both the stigmatized and the stigmatizers. We aimed to find the differences in the level of stigma across different mental disorders while considering the gender of the study participants as well as the gender of the people depicted in the vignettes. Methods: This was a population-based, experimental vignette study conducted in Buyende District of Eastern Uganda in 2023. We created 8 vignettes describing both men and women with alcohol use disorder, major depressive disorder, generalized anxiety disorder, and schizophrenia consistent with DSM-5 criteria. Participants from 20 villages in rural Buyende District of Uganda (N = 379) were first read a randomly selected vignette and administered a survey eliciting their attitudes (Personal Acceptance Scale [PAS] and Broad Acceptance Scale [BAS]) towards the person depicted in the vignette. We used analysis of variance (ANOVA) with Bonferroni-adjusted, empirical p-values to compare levels of acceptance across disorders and genders. Attitudes towards people with mental illness, as measured by the PAS, varied across different mental disorders (p = 0.002). In pairwise mean comparisons, the greater acceptance of anxiety disorder vs. schizophrenia was statistically significant (Mean [SD] PAS: 2.91 [3.15] vs 1.62 [1.95], p = 0.008). Secondary analyses examining differences in acceptance across gender combinations within mental disorders showed that PAS varied across gender combinations for depression (p = 0.017), suggesting that acceptance is higher for women with depression than men with depression. Results: We found that people with schizophrenia were less accepted compared to people with anxiety disorders. We also found that there was greater acceptance of women with depression than men with depression. Anti-stigma initiatives may need to be targeted to specific disorders and genders.

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Yang Jae Lee, Ryan Christ, Scott Blackwell, Kazungu Rauben, Alyssa Krause, Emery Monnig, Ibrahim Ssekalo, Theddeus Iheanacho & Robert Rosenheck 

Twelve-month outcomes of a destigmatizing theatrical intervention in rural Uganda

Background: In rural areas of low- and middle- income countries (LMICs), mental health care is often unavailable and inaccessible, and stigma is a major barrier to treatment. Destigmatization can increase treatment-seeking attitudes, community support, and acceptance of mentally ill individuals. This follow-up study evaluated the long-term effectiveness of a community-led theatrical intervention in reducing mental health stigma in a low-income setting in Uganda. Methods: A follow-up survey of study participants was conducted 12 months after the initial community-led theatrical intervention measuring the primary outcomes of mental illness stigma using the Broad Acceptance Scale (BAS) and the Personal Acceptance Scale (PAS). Of the initial 57 participants, 46 (80%) completed the follow-up survey. The average improvement in Broad Acceptance Scale and Personal Acceptance Score observed from baseline to twelve months after the intervention was 1.435 (95% CI: 0.826–2.044, p < 0.0001, SD: 1.64) and 2.152 (95% CI: 1.444–2.860, p

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Lee YJ, Rauben K, Liu C, Kim R, Velde Nvd, Taylor C, Walsh A, Asasira M, Katongole I, Hatfield-King J, Blackwell S, Iheanacho T, Christ R, Ssekalo I

Evaluation of a Pilot, Community-Led Mental Illness De-stigmatization Theater Intervention in Rural Uganda

Background: In rural areas of low- and middle- income countries (LMICs), mental health care is often unavailable and inaccessible, and stigma is a major barrier to treatment. Destigmatization can increase treatment-seeking attitudes, community support, and acceptance of mentally ill individuals. This study’s primary objective was to evaluate the impact of a community-led, theater-based destigmatization campaign for mental illness conducted in the Busoga region of Eastern Uganda. Methods: One hundred residents of the Busoga region were randomly selected via cluster sampling to complete a structured questionnaire assessing mental health stigma. Common misconceptions and points of stigma were identified from these responses, and local village health team personnel (VHTs) developed and performed a culturally-adapted theatrical performance addressing these points. Changes in perceptions of mental illness were measured among 57 attendees using two measures, the Broad Acceptance Scale (BAS) and Personal Acceptance Scale (PAS), before and after the performance. Results: There was a significant increase in acceptance according to the BAS (p < .001) and PAS (p

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Peter G Delaney, Zachary J Eisner, T Scott Blackwell, Ibrahim Ssekalo, Rauben Kazungu, Yang Jae Lee, John W Scott, Krishnan Raghavendran

Exploring the factors motivating continued Lay First Responder participation in Uganda: a mixed-methods, 3-year follow-up

Background: The WHO recommends training lay first responders (LFRs) as the first step towards establishing emergency medical services (EMS) in low-income and middle-income countries. Understanding social and financial benefits associated with responder involvement is essential for LFR programme continuity and may inform sustainable development. Methods A mixed-methods follow-up study was conducted in July 2019 with 239 motorcycle taxi drivers, including 115 (75%) of 154 initial participants in a Ugandan LFR course from July 2016, to evaluate LFR training on participants. Semi-structured interviews and surveys were administered to samples of initial participants to assess social and economic implications of training, and non-trained motorcycle taxi drivers to gauge interest in LFR training. Themes were determined on a per-question basis and coded by extracting keywords from each response until thematic saturation was achieved. Results: Three years post-course, initial participants reported new knowledge and skills, the ability to help others, and confidence gain as the main benefits motivating continued programme involvement. Participant outlook was unanimously positive and 96.5% (111/115) of initial participants surveyed used skills since training. Many reported sensing an identity change, now identifying as first responders in addition to motorcycle taxi drivers. Drivers reported they believe this led to greater respect from the Ugandan public and a prevailing belief that they are responsible transportation providers, increasing subsequent customer acquisition. Motorcycle taxi drivers who participated in the course reported a median weekly income value that is 24.39% higher than non-trained motorcycle taxi counterparts (p

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Peter G Delaney, Richard Bamuleke, Yang Jae Lee 

Lay First Responder Training in Eastern Uganda: Leveraging Transportation Infrastructure to Build an Effective Prehospital Emergency Care Training Program

Background: Though road traffic injuries (RTIs) are a major cause of mortality in East Africa, few countries have emergency medical services. The aim was to create a sustainable and efficient prehospital lay first responder program, creating a system with lay first responders spread through the 53 motorcycle taxi stages of Iganga Municipality. Methods: One hundred and fifty-four motorcycle taxi riders were taught a first aid curriculum in partnership with a local Red Cross first aid trainer and provided with a first aid kit following WHO guidelines for basic first aid. Pre- and post-survey tests measured first aid knowledge improvement over the course. Post-implementation incident report forms were collected from lay first responders after each patient encounter over 6 months. Follow-up interviews were conducted with 110 of 154 trainees, 9 months post-training. Results: Improvement was measured across all five major first aid categories: bleeding control (56.9 vs. 79.7%), scene management (37.6 vs. 59.5%), airway and breathing (43.4 vs. 51.6%), recovery position (13.1 vs. 43.4%), and victim transport (88.2 vs. 94.3%). From the incident report findings, first responders treated 250 victims (82.8% RTI related) and encountered 24 deaths (9.6% of victims). Of the first aid skills, bleeding control and bandaging was used most often (55.2% of encounters). Lay first responders provided transport in 48.3% of encounters. Of 110 lay first responders surveyed, 70 of 76 who had used at least one skill felt "confident" in the care they provided. Conclusion: A prehospital care system composed of lay first responders can be developed leveraging existing transport organizations, offering a scalable alternative for LMICs, demonstrating usefulness in practice and measurable educational improvements in trauma skills for non-clinical lay responders.

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Yang Jae Lee, Gautam Adusumilli, Francis Kyakulaga, Peter Muwereza, Rauben Kazungu, Timothy Scott Blackwell Jr, Jose Saenz, Moonkyung Cho Schubert

Survey on the prevalence of dyspepsia and practices of dyspepsia management in rural Eastern Uganda

Aim: To investigate the current prevalence and management of dyspepsia in rural Eastern Uganda. Methods: Residents older than 18 years of age across 95 study sites in Namutumba District, Eastern Uganda were surveyed. Each respondent was administered a questionnaire about dyspepsia and pertinent health-seeking behaviors. Health workers at 12 different clinics were also assessed on their competence in managing dyspepsia. Proportion-based analysis was used to determine self-reported outcome variables reported in this study, including: prevalence of dyspepsia; breakdown of symptoms; initial diagnosis location; management strategies; and appropriate medication usage. Results: 397 residents (average age of 41.2 years) participated in this study (54.4% males, 45.6% females). 57.9% self-reported currently having dyspepsia, of average duration 4.5 years. Of this subset, 87% reported experiencing epigastric pain, and 42.2% believed that ulcers were "wounds in the stomach." Only 3% of respondents had heard of Helicobacter pylori (Hp). Respondents varied in their management of dyspepsia, with frequent eating (39.1%), doing nothing (23.9%), and taking Western medicine (20%) being the most common strategies. The diagnosis of "peptic ulcer disease" was made by a health worker in 64.3% of cases, and 27% of cases were self-diagnosed. Notably, 70.3% of diagnoses at formal health centers were based on clinical symptoms alone and only 22.7% of respondents received treatment according to Ugandan Ministry of Health guidelines. Among the 12 health care workers surveyed, 10 cited epigastric pain as a common symptom of "ulcer," although only two reported having heard of Hp. Only two out of 12 clinics had the capability to prescribe the triple therapy as treatment for presumed Hp. Conclusion: There is a high incidence of dyspepsia in Eastern Uganda, and current management strategies are poor and inconsistent, and may contribute to antibiotic resistance. Further studies are needed to investigate the causes of dyspepsia to guide appropriate management. Keywords: Epidemiology; Health profession; Internal medicine; Public health.

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Yang Jae Lee, Gautam Adusumilli, Rauben Kazungu, Godwin Anywar, Francis Kyakulaga, Esther Katuura, Shanti Parikh, Merlin Willcox

Treatment-seeking behavior and practices among caregivers of children aged ≤5 y with presumed malaria in rural Uganda

Background: We aimed to determine the rate of herbal medicine usage and the treatment-seeking patterns of children aged ≤5 y with presumed or confirmed malaria in an endemic area of Uganda. Methods: We interviewed guardians of 722 children aged 6 months to 5 y, who had experienced an episode of presumed malaria in the previous 3 months, about the illness history. Results: Overall, 36.1% of patients took herbal medicines but most also sought modern medical care; 79.2% received Artemether-Lumefantrine (AL), but only 42.7% received the correct AL dose. Of the 36.6% of patients treated in drug shops, 9.8% had a diagnostic test and 30.2% received the correct dose of AL. Antibiotics were frequently provided with AL at drug shops (62%) and formal health centers (45%). There were no significant differences in the self-reported outcomes associated with different treatments. Conclusion Almost all of the patients who took herbal medicine also took modern antimalarials, so further research is needed to explore potential interactions between them. Although formal health facilities provided the correct diagnosis and dose of AL to a majority of children with malaria, many children still received inappropriate antibiotics. Quality of care was worse in drug shops than in formal health facilities.

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Journalism

Our publications illuminate the complex health challenges faced by the communities in our catchment area, bringing to light issues often overlooked in mainstream discourse. Through detailed narratives and firsthand accounts, these articles foster a deeper understanding of the unique struggles and the resilience of rural Ugandans. Each piece is a testament to the urgent need for sustainable and equitable health solutions. These articles help give context to the important work that we do and the dire stakes that are the daily reality of many individuals. 

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Jae Lee, Public Radio International: The World, 2015

Uganda: What happens when there is a delay in medical care?

In the shade of a tree outside of a mud hut in Kigunda, a village in Uganda, Wamusudiza Gertrude’s children were eating a plate of greens and millet, a dense brown starch, with their hands. Most older children wore ragged shirts and short pants while one was sitting naked on the ground. Younger children wore either a shirt or shorts. Nsasi Alvin kept missing his mouth with the food. Even on the rare occasion when he succeeded in putting the food in his mouth, the food kept falling out onto either his naked body or the ground. He had an abnormally large head and a blank expression. Most children in villages are mesmerized by foreigners, but Alvin did not notice that a foreigner was talking with his mother. Gertrude said that Alvin developed normally until he turned six months old, but then his head kept getting bigger. As his head enlarged, he became less responsive to outside stimuli. Concerned, Gertrude carried him to a health center. The health worker there simply referred him to a larger health center, which referred him to yet a larger health center. The mother rode a bicycle for two hours with the child to the other health center, where they also told her that they could not do anything, and referred her to a hospital. The nearest hospital from Kigunda was over two hours away on eroded bumpy dirt roads by motorcycle, but no one in Kigunda owned a motorcycle. Mobilizing enough funds and organizing the logistics to make a trip to the hospital often takes days, and many people die from this delay.

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Jae Lee, Pulitzer Center, 2015

Uganda: Looking at an Under-Resourced Healthcare System

In rural Uganda, accessing medical treatment is a daunting task. With no organized transportation for medical emergencies going to a health center often means walking or riding a bicycle for many hours. Even when a patient successfully reaches a health center, there is no guarantee that the health center has medicine or will be able to provide services. Uganda's healthcare system works on a referral basis. The smaller health centers refer patients that they cannot treat to larger health centers, which refer patients to regional hospitals. These, in turn, refer patients to Mulago Hospital, the national hospital. In rural Uganda, it is common to be referred more than three times to different health centers and hospitals. The system results in delays in medical care, and many people die or become disabled while pursuing treatment. Washington University student fellow Jae Lee's project in Uganda examines rural people's access to healthcare by sharing stories from community health workers, victims of poor healthcare, and lower-tier healthcare providers.

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Jae Lee, Scientific American, 2015

The Emergency-Care Crisis in Uganda

Francis Kyakulaga, a district sanitation manager, and I had finished eating a meal at the ground floor restaurant of the Mwaana Hotel on the Trans-African Highway in Uganda. During the meal, we noticed an increasing commotion in the hotel lobby area, and Kyakulaga asked a man what was happening. He informed us that someone had collapsed upstairs. We hurried upstairs to find an unconscious man lying in the hallway. A hotel worker had seen him collapse about one hour before and had informed the hotel management. While the hotel staff prepared our food, they had left the unconcious man in the hallway. They did not know what to do to help him. When I arrived on scene, I checked his breathing and carotid pulse. His cold, hard neck made me think that he must have been dead long before I got there. Still, I wanted to be sure. I began CPR and shouted for an ambulance. I heard his ribs crack beneath my compressions, and soon I knew that my efforts were hopeless. Kyakulaga personally knew the top healthcare officials in the district, and about ten minutes after he called the head of the nearby hospital, three vehicles arrived, and two medics joined us. They did not bring any equipment with them, although the vehicles were stocked with medical supplies. One medic slowly put on his gloves before checking for the man’s radial pulse. After what seemed like a long time, he hesitantly and incorrectly proclaimed that the man had a weak pulse. The medic then discussed at length with his colleague what to do next. Still unsure, he decided to call the police ambulance for further direction. After several minutes, someone from the police ambulance arrived and declared the man dead. The news that a man had died spread throughout the town, and the street outside filled up with several hundred people. The crowd waited for a glimpse of the dead body, and did not disperse until the body was carried off in the back of a pickup truck. “People want to help, but they don’t know how,” Kyakulaga told me. Most ambulances in Uganda are not staffed by trained medical technicians. Kyakulaga explained: “the hiring process to staff the ambulance goes like this—they ask if you can drive a car. If you say yes, you are hired.” Here, as in most low-resource settings in Africa, even if someone is taken to the hospital in a timely manner, there are no guarantees that the patient will receive the necessary medical intervention. With the already limited government funds for healthcare targeted to treat infectious diseases such as malaria, tuberculosis, and HIV, there is nothing left to improve any phase of emergency medicine. Uganda’s emergency medical system currently depends on the support of poorly-funded non-governmental organizations. Two weeks after the hotel incident, I heard my neighbor at the home where I was staying shout for help. The neighbor’s maid had collapsed. I assessed her and found that she was unresponsive, but she was breathing and had a pulse. Since the neighbor had no personal connection to the hospital to call for a vehicle, we mobilized a car and drove through the sparsely lit, bumpy dirt roads in the Ugandan night to Iganga District Hospital.

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