Health
Ugandan sickle cell researchers keep pace with aging patients
Article courtesy Fogarty International Center
September/October 2024 | Volume 23 Number 5
Until recently in Uganda, most children with sickle cell disease (SCD) never celebrated their fifth birthday—only 30% lived past this milestone. This low survival rate was mainly due to inadequate health care interventions for these children, plus lack of widespread newborn screening, explains Dr. Sarah Kiguli , a professor at Makerere University College of Health Sciences. Things are different today. Over the past decade, the East African nation has instituted a policy of screening newborns while strengthening strategies to manage their health. This means more children with SCD are growing into adolescence and adulthood.
Challenges still exist, says Kiguli. For example, the community and district facilities where many Ugandan children are born cannot provide comprehensive services, including newborn screening. Another issue: the risk of SCD complications related to kidneys, lungs, heart—almost all organs—grows higher as patients grow older, yet scientific research in Uganda hasn’t caught up with the reality of these longer lives. As a result, teens and adults with SCD don’t get “the care they deserve,” says Kiguli.
“It’s very painful for us pediatricians to see our patients encounter challenges and problems when they transition to adult care.”
Renewed research focus
Despite years devoted to children’s health, Kiguli believes it’s time to prioritize studies exploring appropriate SCD management in teens and adults. “We need solutions that address all the patients’ needs, including reproductive health, as they transition out of childhood.” She’s spearheaded a multidisciplinary research training program for researchers focused on the needs of people with SCD at all ages: Enhancing Research capacity for Sickle Cell Disease and related NCDs across the Lifespan in Uganda (ENRICH).
“Among our PhDs, we don’t have anyone from pediatrics—and that’s fine,” says Kiguli. Importantly, the researchers are trained as a group to amplify the benefits of multidisciplinary collaboration. “We’ve been working in silos—pediatricians alone, physicians alone, social scientists alone—that won’t help us address the comprehensive needs of these patients.”
Methodology has also been given sufficient consideration. “We provide both individual and team mentorship from the beginning,” said Kiguli. Monthly meetings help trainees develop personal development goals and career path plans in the hope they will continue in the field. The program also provides research training to health professionals, such as medical doctors, laboratory personnel, and nurses, who are not necessarily doing degree programs, “so those who manage patients routinely might also benefit,” said Kiguli.
South-to-South unity
For the project, Makerere University has partnered with Busitema University, located in eastern Uganda, where “prevalence of the sickle cell trait is as high as 20%,” says Kiguli. (Sickle cell trait refers to when a person has inherited one mutated allele of the sickle cell gene, not two.) This local prevalence contrasts with about 13% prevalence elsewhere in the country. Studying the disease in a high burden locale is highly relevant, because results may influence policy and treatment guidelines.
Kiguli has other reasons for collaborating with Busitema University, which is less than 15 years old. “We want to build capacity at this young institution since our colleagues there have less chance of doing research than we at Makerere do.” Working and supervising trainees together will give Busitema’s faculty much-needed experience, while providing opportunities for faculty at both universities to learn from each other. Kiguli also hopes the new collaboration will advance progress made as result of the universities’ past partnerships. “Capacity must be built in a sustainable way,” says Kiguli.
“It’s important to work collaboratively and not competitively—this is just as important for Makerere University as it is for Busitema University.”
ENRICH trainees talk about their projects
Dr. Jackline Akello
Dr. Jackline Akello, PhD candidate
Dr. Jackline Akello, PhD candidate
My project is “Sickle cell disease in pregnancy: Experiences in provision and access to care and adverse pregnancy outcomes at Mbale and Kawempe Referral Hospitals.” As an obstetrician and gynecologist, I work as a lecturer at Makerere University and provide clinical care at the two national referral hospitals. I have encountered significant challenges in managing pregnant women with sickle cell disease (SCD) due to a number of healthcare navigation challenges. Additionally, the diverse cultural beliefs associated with SCD in Uganda affect access to care and ultimately outcome and quality of life for the patient.
By October, I will have started the enrolment of 161 pregnant women with confirmed SCD for my project. These participants will be followed throughout their pregnancies to track maternal and fetal complications, including stillbirths and low birth weight. Their experiences with the healthcare system will also be explored. As a Safe Motherhood champion, I have been focusing on hypertensive disorders in pregnancy, including pre-eclampsia, but this October at the Safe Motherhood Conference I will discuss the effects of SCD during pregnancy with the Ministry of Health. One of the endpoints of my study is to improve care for pregnant women who have SCD to enhance their pregnancy experience and outcomes.
Dr. George Paasi
Dr. George Paasi, PhD candidate
Dr. George Paasi, PhD candidate
My project is “The Clinical Epidemiology, Spatiotemporal Patterns and Disease Modifiers of Severe Malaria among Children with Sickle Cell Disease in Eastern Uganda.” Uganda ranks fourth among countries with high burden of SCD and is in the top 10 with respect to malaria burden. Eastern Uganda has the highest burden of both diseases. My project addresses this dual burden of SCD and malaria in eastern Uganda—I want to decipher the SCD-malaria syndemic in this region.
I’m a medical doctor, I have a master’s in public health, and I just finished a fellowship in infectious disease, epidemiology, and biostatistics. I’ve worked at Mbale Clinical Research Institute for the last 10 years. Previously, I worked on an NIH-funded trial in Africa called Realizing Effectiveness Across Continents with Hydroxyurea (REACH) as a medical officer, and now I’m embarking on this PhD training. My hope is that the findings from my study will improve the identification of patients with SCD at risk of adverse outcomes when they get malaria. I also want to identify, through spatial temporal analysis, hotspot locations that require priority interventions. I also want to gain skills as an independent researcher in SCD and make a meaningful contribution to this field.
Dr. Anita Arinda
Dr. Anita Arinda, PhD candidate
My project is “Prevalence, associated factors, course and impact of major depressive disorder in adolescents with SCD in Mulago National Referral Hospital.” We have limited data on mental health of adolescents with SCD, so that’s why my project mainly looks at depression in adolescents (ages 10 to 17).
In our setting, we are fortunate that children with SCD live past their fifth birthday thanks to improved health care, but this presents new challenges. During adolescence, patients enter a crucial stage where they’re trying to develop their identity, yet they’re also beginning to understand the implications of their condition—that having this serious health condition cuts their life short. I want to understand their experiences. How does depression in adolescents with SCD differ from depression in adolescents without SCD? We know that sickle cell disease causes inflammation, so does that contribute to their depression? How does depression affect clinical outcomes, if at all?
If we can understand the underlying mechanisms of depression in teens with SCD, then we might find new ways to manage their care (as opposed to conventional treatment with antidepressants). I’ll do my research at Mulago National Referral Hospital, which has a clinic dedicated to children and teens with sickle cell disease. The clinic provides many services, but unfortunately no specialized mental health services. One day I hope that changes, so that children with SCD and depression can get help early.
Health
Makerere Researchers Find Psychological Therapy Effective in Improving Diabetes Care in Uganda
By Nelson Bahati
Researchers from Makerere University‘s School of Psychology have found that psychotherapy intervention can improve the well-being of adults living with Type II diabetes mellitus, opening the door for integrating psychosocial support into diabetes care in Uganda.
The findings were disseminated on 16 June 2026 during a research dissemination workshop held at the Physiology Lecture Theatre at the College of Health Sciences, Mulago Hospital.
Led by Professor Peter Baguma, the study titled “The Effectiveness of Cognitive Behavioural Therapy for Diabetes Distress, Depression, Health Anxiety, Quality of Life and Treatment Adherence among Adult Patients with Type II Diabetes Mellitus” investigated whether Cognitive Behavioural Therapy (CBT), a psychological treatment that has proven effective in Western countries, could also work in the Ugandan context.
Presenting the findings, Professor Baguma said the study was motivated by the growing burden of diabetes and the psychological challenges that often accompany the disease but are rarely addressed in routine healthcare.
“Diabetes affects many people in Uganda and across the world. It kills, and those who live with it face many challenges. While psychological interventions have been developed and applied in the Western world, we did not know whether these approaches could work in Uganda. That is why we decided to undertake this study,” he said.
He explained that Cognitive Behavioural Therapy focuses on changing negative thoughts and behaviours that affect people’s wellbeing and ability to manage chronic illnesses.
The researchers sought to determine whether CBT could reduce psychological distress among diabetes patients and improve treatment outcomes.
The controlled study involved 200 adult participants with Type II diabetes mellitus. One hundred participants received the CBT intervention while another 100 formed the control group. Participants in the intervention arm attended eight counselling sessions over four months, with each session lasting between one and one-and-a-half hours.
The therapy covered several modules, including psychoeducation on diabetes, cognitive restructuring, medication adherence, problem-solving, coping strategies, physical exercise, relaxation techniques and strategies for maintaining treatment.
According to Professor Baguma, the findings showed that psychotherapy significantly improved participants’ wellbeing.
“The group that received the intervention experienced reduced stress levels and lower blood sugar levels compared to those who did not receive the therapy. We conclude that CBT is effective and should be adopted as part of diabetes care,” he said.
The study also yielded another important discovery.
“We have discovered that CBT as practised in the Western world is somewhat narrow. Their manual contains only eight elements. In Africa, we found that three additional components are necessary: effective communication between patients and health workers, goal setting, and instilling hope among patients. We call this African CBT,” Professor Baguma explained.
He added that the findings had also revealed the need to incorporate psychosocial care into the management of chronic illnesses and to train healthcare workers to address the psychological dimensions of disease.
Professor Andrew Marcel Otim, one of the co-investigators and founder of the Uganda Diabetes Association, said the study had brought to the fore an aspect of diabetes care that has long been neglected.
“There have been many efforts to address the physiological effects of diabetes, but we have largely ignored the psychological part of the disease. Yet the psychological aspect is huge,” he said.
He added that, diabetes management should go beyond medication but rather intergrate other components of care.
“Education, nutrition, exercise and self-monitoring are extremely important. Even simply knowing what to do is a very powerful intervention. Psychological distress and depression can increase blood sugar levels, so we need to help patients remain calm and hopeful,” he said.
Drawing from his experience as a clinician and educator, Professor Otim encouraged people living with diabetes to embrace physical activity.
“I tell my students and my patients to put on some music, dance, sweat and enjoy themselves. Nutrition, education and exercise remain central to managing diabetes.”
Dr. Wilber Karugahe, a counselling psychologist at Makerere University‘s School of Psychology and one of the co-investigators, said the findings demonstrate the need to integrate psychological care into the management of chronic diseases.
“A lot of studies focus on physical illness and not the psychological conditions that accompany these illnesses. This study confirms that diabetes has a significant psychological aspect and that patients need psychological interventions as part of their care,” he said.
Explaining the essence of Cognitive Behavioural Therapy, Dr. Karugahe noted that the approach helps people restructure their thoughts and behaviours.
“Imagine putting a sticker on your fridge that reminds you that some foods are not good for you and that healthier options are better. That is CBT. It helps people change the way they think and behave, and it can be used to address many behavioural challenges.”
The dissemination workshop was also attended by officials from the Ministry of Health, including Mrs. Christine Ninsiima Ahimbisibwe, Senior Programme Officer for Mental Health and Substance Abuse Control, and Mrs. Patience Butesi from the Department of Mental Health and Drug and Substance Abuse.
Mrs. Ahimbisibwe welcomed the findings and emphasised the need to integrate the study’s recommendations into Uganda’s clinical guidelines to enable healthcare workers to provide psychosocial support to patients living with chronic illnesses such as diabetes.
The human impact of the intervention was perhaps best illustrated by testimonies from participants who underwent the psychosocial training.
Tebugulwa Josephine, a retired teacher and employee at Mulago National Referral Hospital, said the intervention restored hope in her life.
“When we first joined the programme, we thought we were moving dead people. But now we have hope. I have hope of reaching 90 years. We were taught how to exercise and take care of ourselves. Even our families no longer treat us as sick people because we can now walk and participate in daily activities.”
Another participant, Bunje Joice, described the intervention as life-changing.
“People had already given up on me and were waiting for me to die. I could hardly walk, but now I can walk long distances and my diabetes levels have improved. Physical exercise has become my first medicine.”
Kyomuhendo Kate said the programme helped her manage stress and improve her health.
“I was so stressed and my legs were swelling, but after attending the treatment sessions, I am now much better.”
Sebuliba Bernard said the training transformed how he manages his condition.
“They taught us how to exercise, how to live and how to eat. If we follow what we were taught, we can change our lives.”
Based on the findings, the researchers recommended scaling up the intervention to district, regional and national referral hospitals, integrating psychosocial interventions into the training of health workers, and undertaking policy reforms to strengthen mental health support for people living with chronic illnesses.
The study was funded by the Makerere University Research and Innovations Fund (Mak-RIF) and brought together researchers from psychology and medicine, including co-investigators: Dr. Fredrick Nakwagala, Dr. Wilber Karugahe and Dr. Anne Ampaire.
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