Research | Open Access | Volume 9 (2): Article 96 | Published: 08 Jun 2026
Menu, Tables and Figures
Patience Birungi1,&, Francis Xavier Kasujja1, 2, Aggrey Mukose1, Philip Kasirye3, Angela Kisakye4,5, Juliet Kiguli6
1Department of Epidemiology and Biostatistics, School of Public Health, Makerere University, Kampala, Uganda, 2Chronic Diseases and Cancer Theme, MRC/UVRI and LSHTM Uganda Research Unit, Entebbe, Uganda, 3Department of Paediatrics and Child Health, College of Health Sciences, School of Medicine, Makerere University, Kampala, Uganda, 4Department of Health Policy Planning and Management, School of Public Health, Makerere University, Kampala, Uganda, 5African Field Epidemiology Network, Lugogo House, Plot 42 Lugogo By-Pass, Kampala, 6Department of Community Health and Behavioural Sciences, School of Public Health, Makerere University
&Corresponding author: Patience Birungi, Department of Epidemiology and Biostatistics, School of Public Health, Makerere University, Kampala, Uganda, Email: billupatie@gmail.com, ORCID: https://orcid.org/0009-0000-0956-6893
Received: 05 Dec 2024, Accepted: 06 Jun 2026, Published: 08 Jun 2026
Domain: Non-Communicable Epidemiology
Keywords: Barriers, facilitators, adolescents, sickle cell disease, Uganda
©Patience Birungi et al. Journal of Interventional Epidemiology and Public Health (ISSN: 2664-2824). This is an Open Access article distributed under the terms of the Creative Commons Attribution International 4.0 License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Cite this article: Patience Birungi et al., Facilitators and barriers to care for adolescents living with sickle cell disease in Kampala, Uganda. Journal of Interventional Epidemiology and Public Health. 2026; 9(2):96. https://doi.org/10.37432/jieph-d-24-02007
Introduction: Globally, care and treatment for sickle cell disease have improved over the years; however, several challenges continue to hinder the provision of quality care in low-income countries. There is an urgent need for a deeper understanding of the facilitators and barriers to care for adolescents living with sickle cell disease. We explored the perceived perceptions of sickle cell care by parents, health workers, and adolescents at the sickle cell clinic in Mulago National Referral Hospital in Kampala, Uganda.
Methods: This study was conducted within Mulago National Referral Hospital in Kampala, Uganda. In-depth interviews were conducted with adolescents (n=14) and parents/ caregivers (n=11). Patient records were used to select both in-care and out of care adolescents. Key informant interviews were (n=5) long-serving health workers at the sickle cell clinic. Some of the transcribed data in local languages were translated verbatim into English, coded, and analyzed. Key themes were identified using a thematic content analysis approach.
Results: Adolescents and caregivers highlighted several facilitators that played an important role in keeping adolescents in care. These included receiving free and proper medical care from knowledgeable and caring health workers, the health workers’ experience in effectively managing pain, and the supportive involvement of family members. Adolescents also emphasized that feeling better after receiving care motivated them to continue with treatment. However, various barriers to care were reported, including inadequate drug supplies and frequent stock-outs, high costs, long wait times at the health care facility, restricted working days, insufficient staffing, and limited space, which compromised confidentiality, one toilet facility, all of which hindered the provision of quality care for adolescents living with sickle cell disease.
Conclusion: Improving adolescent retention in sickle cell care requires addressing systemic challenges such as resource constraints and enhancing healthcare delivery. For nursing practice, this emphasizes the need for advocacy, capacity building, and innovative care models. Future research should explore sustainable interventions to strengthen patient-centered care in low-resource settings.
Sickle cell disease (SCD) is a genetic blood disorder characterized by abnormal hemoglobin production, leading to the deformation of red blood cells [1]. It affects millions of people worldwide, with a higher prevalence in sub-Saharan Africa, including Uganda. In Uganda, the burden of SCD is particularly high, and it poses significant challenges to the affected individuals, their families, and the healthcare system [2, 3]. According to the World Health Organization (WHO), it is estimated that approximately 300,000 infants are born annually with SCD in sub-Saharan Africa, and Uganda has one of the highest prevalence rates in the region [4]. In Uganda, it is estimated that about 20,000 newborns are affected by SCD each year [3, 5]. The burden of SCD falls disproportionately on children and adolescents, with approximately 50-80% of affected individuals experiencing their first clinical symptoms during childhood [6-8].
Adolescents aged 10-19 years with SCD represent a vulnerable population, as they navigate the complex physical, emotional, and social changes associated with adolescence while managing a chronic illness [9]. This dual burden often results in significant physical strain due to recurrent pain crises, hospitalisations, emotional stress from coping with stigma and isolation, and disruptions in education and social development. [10].
The transition from pediatric to adult care also presents additional challenges, including the risk of gaps in care and reduced adherence to treatment [11]. Without adequate support, these adolescents may experience poorer health outcomes, diminished quality of life, and increased psychosocial distress, underscoring the urgent need for targeted interventions to address their unique needs [12].
Previous studies have identified a range of systemic and interpersonal factors that influence access to and retention in care for individuals with SCD. For example, [2, 13] highlight that inadequate provider knowledge and negative attitudes can lead to misdiagnosis and poor disease management. Similarly, [14] emphasised that many primary care physicians lack experience with adolescent SCD patients, contributing to fragmented care and increased complications.
Operational and logistical challenges such as drug stock-outs, understaffing, and long waiting times have been widely documented in low-resource settings [15, 16]. These barriers not only delay treatment but also discourage continued engagement with healthcare services. On the other hand, facilitators such as access to hydroxyurea, effective pain management, and family support have been shown to improve adherence and health outcomes [17, 18].
Educational interventions targeting healthcare providers have also demonstrated improvements in clinical practice and patient-provider relationships [19]. However, most of this literature has focused on general populations or pediatric cohorts, with limited qualitative exploration of adolescents’ lived experiences in specific contexts like Uganda. This study builds on existing research by applying a deductive thematic approach informed by prior literature, while also allowing for emergent themes grounded in participant narratives [20].
In addition to provider-related barriers, systemic challenges such as long wait times, frequent drug stock-outs, understaffing, and limited health care infrastructure further hinder access to quality care for adolescents with SCD, especially in low-income settings [6, 15]. These infrastructural inadequacies not only delay timely interventions but also exacerbate the physical and emotional burden on patients and their families [16]. Studies have underscored the need for a holistic approach to improving health care systems, particularly through adequate staffing, consistent drug supplies, and improved infrastructure to address these persistent barriers [21].
In contrast, facilitators such as access to proper medication, knowledgeable and caring health workers, and effective pain management have been shown to significantly improve the care experience for adolescents living with SCD [22, 23]. Family support also plays a pivotal role, providing both emotional and physical assistance that helps adolescents adhere to treatment regimens and cope with the psychosocial challenges of the disease [18].
On the other hand, facilitators such as experienced and compassionate health workers, effective pain management, and supportive family involvement have significantly improved the care experience for adolescents with SCD [19]. Despite these advancements, limited qualitative research has explored the interplay between these facilitators and barriers within specific contexts, such as Uganda. This study fills this gap by capturing the lived experiences of adolescents with SCD and identifying actionable strategies to improve care delivery and health outcomes.” By shedding light on these aspects, the study not only addresses the gaps in the existing literature but also provides a foundation for the development of targeted interventions.
Study design, setting and population
This was a qualitative cross-sectional study conducted in June and July 2018. This study was conducted at the sickle cell clinic in Mulago National Referral Hospital, Kampala District. This is the largest hospital in Uganda and the teaching hospital of the Makerere University College of Health Sciences. The hospital offers services in most medical and surgical sub-specialities, in addition to dentistry, emergency, paediatrics, and intensive care. The sickle cell clinic is an outpatient facility which receives approximately 50-80 continuing and new patients on a daily basis and offers free sickle cell care and treatment to all patients. The study targeted adolescents living with sickle cell disease aged between 10 and 19 years who lived in Kampala and Wakiso districts in Uganda, who were both in care and out of care. Being in care was defined as consistently keeping clinic appointments for 6 months at the time of the study. Participants for in-depth interviews included fourteen (14) adolescents aged 10-19 years who were both in and out of care and eleven (11) parents. Key informant interviews were conducted among five health workers.
Sampling
The five (5) health workers were purposively selected because of their experience of more than 15 years working at the sickle cell clinic in Mulago National Referral Hospital, whereas convenience sampling was used to select adolescents and parents until saturation was reached. We included caregivers, health workers and adolescents living with sickle cell disease aged 10-19 years who were in and out of care and who lived in Kampala and Wakiso Districts of Uganda. The study excluded adolescents who enrolled on care at the clinic before 2013 and after 2017, and participants who were very weak or too ill.
Data collection and cleaning
The data collectors were individuals with prior experience in qualitative research, while a separate team of experts handled transcription. These were not staff nurses, as their involvement could have influenced responses, potentially making children and caregivers less comfortable sharing their experiences of care at the sickle cell clinic. A five-day training was conducted to equip both teams with the necessary skills for data collection, transcription, and adherence to qualitative research protocols.
The investigators developed the data collection tool, which included 64% open-ended questions (7 out of 11), with the rest capturing demographic information. Originally in English, it was translated into Luganda for participants in Kampala and Wakiso districts, then back into English to ensure accuracy. Cultural validation was conducted through expert review by qualitative researchers and sickle cell specialists. Reliability was assessed through inter-rater checks to ensure consistency in data collection.
An interview guide was used to conduct key informant and in-depth interviews to gain insight into the barriers and facilitators to care of SCD among adolescents. Transcripts were anonymized by removing any identifiable information and labelling them with unique participant codes. Transcribed data were reviewed for accuracy and cleaned to eliminate background noise, interruptions, and irrelevant information. All interviews were conducted at the sickle cell clinic.
Data analysis
Thematic content analysis [24, 25] was employed to identify patterns, themes, and categories within the data. With permission from all participants, responses were audio-recorded and transcribed verbatim in their entirety. Audio responses from adolescents and parents that were in the local languages were translated verbatim into English. The research team read the transcripts multiple times to identify initial ideas and potential themes. Each theme was defined (Table 1). We developed a coding framework (Table 2) to ensure consistent and reliable thematic analysis. The research team used this guide during line-by-line coding, and differences were resolved through discussion to ensure coding consistency. These themes (Table 3 & 4) were labelled to capture meaning and content related to sickle cell activities at the clinic.
Research team and reflexivity
In order to ensure transparency and minimize personal influence on findings, the research team discussed and refined the themes through meetings. They reviewed the coded extracts and ensured that they fit within the respective themes. Data triangulation was achieved by collecting information from multiple sources, including adolescents living with SCD, their parents or caregivers, and healthcare workers involved in SCD care. This approach provided a well-rounded understanding of the barriers and facilitators to care, reducing the risk of bias from relying on a single perspective.
Ethical considerations
Ethical approval to conduct the study was obtained from Makerere University School of Public Health, Higher Degrees, Research and Ethics Committee (reference number MHREC 1082). Institutional review and a waiver of consent were also obtained from the Mulago Hospital Research and Ethics Committee. Additionally, administrative clearance to conduct the study was granted by the hospital administration board. Permission to carry out the study was given by the head of department sickle-Cell Clinic. Furthermore, assent and informed consent were sought from the adolescents and caregivers who participated in the interviews.
Consenting process
The study team explained the purpose of the study and guided participants through the consent process. Upon agreeing to participate, adolescents aged 18-19 years, as well as parents and health workers, were provided with a detailed consent form. However, adolescents aged 10-17 years were given an assent form to sign after obtaining permission from their parents. Participation in the study was entirely voluntary.
Confidentiality and privacy.
To ensure confidentiality and privacy, all collected data, including transcripts and personal details, were securely stored in password-protected electronic files, accessible only to the research team. Physical copies of any documents were kept in a locked filing cabinet, with access restricted to authorized personnel only. Participant identifiers were removed from the data, and unique participant codes were used to anonymize the information. These measures ensured that participant privacy was maintained and their information remained confidential throughout the study.
The study was guided by predetermined themes established through a thorough review of the existing literature. However, the results were entirely data-driven, shaped by the responses and insights gathered during the study. While some findings aligned with prior research, others revealed new perspectives on adolescent sickle cell disease care.
Socio-demographic characteristics of the study participants
The study included a total of 14 adolescents, 11 parents, and five health workers. Adolescents were aged between 10 and 19 years, with a majority being female (n=9). Most were in primary school (n=8), while others were in secondary school (n=6). Half of the adolescents (n=7) were actively receiving care, whereas the other half had been out of care for more than six months. The majority (n=10) lived with their biological parents, and more than half (n=8) resided in Wakiso district (Table 5).
Among the 11 parents interviewed, ages ranged from 28 to 58 years, with most being females (n=8). Their education levels varied, with three having primary education, two having secondary education, and 6 having tertiary education. Most resided in Wakiso district (n=7), while the rest (n=4 lived in Kampala. The study also involved five health workers, comprising two doctors, one clinician, and two nurses aged between 30 and 55 years, with two being female and three male. The study identified both facilitators and barriers influencing adolescents’ SCD care, some of which confirmed existing knowledge while others provided new insights.
Facilitators to sickle cell disease care
Comprehensive, high-quality care
Several factors emerged as key facilitators of care-seeking among adolescents with SCD. Those who were in care, 8/10 (80%) at the time of the study, reported receiving appropriate treatment from experienced health workers at the sickle cell clinic. They mentioned that the primary reason for staying in care was the doctor’s experience in managing their pain at the sickle cell clinic in Mulago, which they found superior to other facilities they had visited before.
“The doctors treat me well; I even wonder where they get the medicine from because every time I come with pain, and they give me that medicine, it cures my pain immediately. They are really kind to me, sometimes they even remember my name and ask how I have been feeling. It makes me feel like they actually care. When I am here, I don’t feel scared. I know they will help me feel better” (17-year-old girl).
Similarly, parents 10/11 (90.9%) mentioned that their motivation to continue bringing their adolescents to the clinic was largely due to the proper medical care provided free of charge. They also emphasized that the doctors’ expertise in managing sickle cell disease gives them confidence.
“The doctors at Mulago are specialized in handling children with sickle cell; this is why I prefer this clinic.” Mother of a 14-year-old from Wakiso District.
Almost all the adolescents interviewed, 11 out of 14 (79%), mentioned that sickle cell disease used to interfere with their school program. However, due to the care provided at the clinic, pain was no longer a hindrance to their school attendance.
“My experience with sickle cell disease has been the worst. I had stopped going to school for 2 years because I was too ill, would get a lot of pain in the legs and all other joints. But because of the medicines I have been receiving from this facility, I feel better, and I no longer miss school. I am happy.” (14-year-old girl from Wakiso district)
Beyond these well-documented facilitators, this study revealed new insights regarding adolescents’ experiences with care. While previous research has largely focused on access to medication and clinical treatment, our findings highlight the importance of compassionate health worker interactions. Adolescents felt that healthcare providers’ empathy and understanding played a significant role in their overall well-being, reinforcing the idea that effective care extends beyond medical treatment.
Knowledgeable, caring health providers, and feeling better
Respondents consistently shared their experiences of receiving care from healthcare providers who not only possessed a high degree of knowledge but also demonstrated a compassionate and genuine approach to their well-being. Knowledgeable and caring providers were major facilitators. This was emphasized by all adolescents, 14/14 (100%), describing health workers as both technically skilled and emotionally supportive. Adolescents expressed that they felt remarkably better as a direct result of this care, highlighting the profound impact knowledgeable and dedicated healthcare professionals can have on their health.
“As someone navigating the challenges of sickle cell disease, I have been fortunate to encounter health workers who do not just treat my symptoms but truly understand my condition. They are not only knowledgeable but also caring, showing empathy and compassion every step of the way. It’s like having a support system that goes beyond medicine.” (19-year-old boy)
Adolescents reported significant improvements in their health, noting relief from pain, fewer sick episodes, and increased hope for the future.
“My pain has reduced to the extent of healing because I had developed some lameness, but now, I walk well.” (13-year-old from Kampala district)
“Mulago has handled my health so well to the extent that I don’t get sick nowadays. They always check if I have blood, and when I don’t, they give me.” (15-year-old boy from Wakiso district)
Supportive family
This study also reinforced findings from other studies on the role of family support in sustaining adherence to care. 9 out of 14 adolescents (64%) reported that the presence of supportive family members, particularly in terms of emotional support, emerged as a prevailing and pivotal theme. They consistently conveyed the profound impact of having a loving and empathetic family network. Emotional support from family members such as parents, siblings, and extended family played a significant role in helping them navigate the challenges associated with sickle cell disease.
Caretakers specifically highlighted the role of timely access to free medication and the expertise of health workers in managing pain as key contributors to improved outcomes. Parents noted that their children experienced fewer pain episodes and were able to return to school more consistently after receiving care at the clinic. This unwavering support fostered a sense of security and well-being, which, in turn, bolstered their resilience in the face of health-related hurdles. Family members who offered understanding, comfort, and a shoulder to lean on created an environment where these adolescents felt safe to express their emotions and concerns.
“My mummy always tells me that she will never leave me alone; she keeps assuring me that I will go through everything with her. She gives me the reason to continue seeking care here at the clinic”. (14-year-old boy)
Having my family’s emotional support has been my anchor in this journey with SCD, their love and understanding make the tough days bearable and the good days even brighter. Knowing they are there for me empowers me to face this condition with strength and optimism. (15-year-old boy)
Barriers to seeking care
Shortage of staffing and medical supplies
The responses from all participants, adolescents 10/14 (71%), parents 8/11(73%) and health workers 5/5 (100%), revealed that the clinic has few staff, leading to significant delays in service delivery. 8/11 (73%) parents suggested that the number of doctors needs to be increased because they acknowledged that the delays are mainly due to the large number of patients. They mentioned that doctors worked hard to ensure everyone was served.
“Despite the big numbers of patients, doctors are always willing to work on all patients without complaining; they are good,” said a parent of a 19-year-old.”
The adolescents, 7/14 (50%), further indicated that there are usually drug stock-outs of essential medicines.
Usually, there are no drugs; most of the time, the doctors prescribe and tell you to go and buy them. The clinic has only folic acid and Panadol” (Parent of a 13-year-old girl from Wakiso district). In fact, 8/11 (73%) mentioned being told to buy some medicines from the pharmacies. The absence of sufficient healthcare resources can have severe consequences for affected children. SCD management requires a multi-disciplinary approach involving hematologists, pediatricians, nurses, social workers, and other specialists. Understaffing means that there are not enough of these experts to provide the comprehensive care needed, resulting in longer waiting times and fragmented services. Additionally, a shortage of essential drugs, often due to supply chain issues, can directly impact a child’s ability to manage pain, prevent complications, and improve overall well-being.
“Oftentimes, they tell my mother to go and buy some drugs in a pharmacy, yet there are days when she has no money for drugs.” (14-year-old boy from Wakiso district)
“I feel like I’m caught in this never-ending maze of uncertainty. There are days when the pain is unbearable, and I need those essential drugs to make it through, but they’re just not there. And when I do get to the hospital, there’s this endless waiting, like no one really understands what I’m going through. It’s like they’re just not enough of the right people to help us, and every minute counts when you’re in pain. We deserve better.” (17-year-old girl from Kampala district)
Despite the challenges, 14/14(100%) adolescents mentioned that they had benefited from the services offered to them at the sickle cell clinic.
Limited working days
One significant barrier for adolescents with sickle cell disease is the limited operating days of the specialized clinic at Mulago National Referral Hospital. Since the clinic is open only from Monday to Friday, adolescents and their parents have few options during weekends and often must seek care at other potentially less specialized centers.
“Living with sickle cell disease is a daily battle, and we can’t afford to wait until Monday when our pain or health takes a hit on a Saturday night. We deserve a healthcare system that recognizes our unique needs and operates, 24/7 if needed.” (15-year-old boy).
Long wait times
The most frequently mentioned barrier by adolescents, 10/14 (71 %) was long waiting time between arrival and receiving a service, which they attributed to the large patient load and limited availability of doctors. Long waiting times can be particularly problematic for adolescents, as this is a critical phase of their development. Delays in accessing care may affect their academic performance, social interactions, and emotional stability, potentially exacerbating their health condition. Adolescents require timely and appropriate medical attention to ensure they can lead healthy and fulfilling lives.
“We wait for long, I sit for close to 3 hours before I see the doctor and thereafter the rest of the process may take 6 hours, especially when I have laboratory tests because there are so many at the cancer institute where we do tests from.” (18-year-old male from Wakiso district).
“Every minute spent waiting for the care I need is a minute my health deteriorates, and my future remains uncertain.” (12-year-old female from Kampala).
Similarly, 7/11 (64%) parents also concurred with adolescents that long waiting times were a challenge faced when seeking care for their children. One parent explained that “Doctors and nurses come very late; those who try to come early do not begin work straight away.” 8/11 (73%) parents suggested that the number of doctors needs to be increased because they acknowledged that the delays are mainly due to the large number of patients. They mentioned that doctors worked hard to ensure everyone was served.
“Despite the big numbers of patients, doctors are always willing to work on all patients without complaining; they are good,” said a parent of a 19-year-old.”
Inadequate space:
The study further revealed that the sickle cell clinic space is inadequate, particularly in the temporary admission room and waiting area. Half of the participants, 7/14 (50%) indicated that overcrowding is an issue, with some patients having to share a bed during drug administration and other emergencies.
“When we are many who are in pain and cannot stand nor walk, some sleep down on the floor and others share a bed because the room is very small” (13-year-old boy from Kampala district). The participants, 9/14 (64%) added that the clinic has only one consultation room, which is used by all the doctors and clinicians during consultations. This lack of space hinders the provision of private services and limits thorough physical examinations. Additionally, healthcare workers noted that recruiting more staff without expanding the available space would not effectively address the issue of understaffing.
“One room is shared by all our doctors. Sometimes you fear to say personal matters because if you do, the people with the next doctor will hear what you are saying. So I simply keep silent, and can you imagine that the clinic has only one toilet for all the patients? Sometimes we have to line up.” (17 year old boy from Wakiso district).
Health workers also confirmed the concern of limited space at the clinic, as rightly pointed out by the adolescents:
“The space is so limited and one may not exhaustively attend to their needs arising from issues such as lack of privacy for both audio and visual discussions with them; in addition, most staff have not had recent trainings in adolescent-friendly services,” said a health worker at Mulago sickle cell clinic”.
One toilet facility
Adolescents reported 9/14 (64%) that the sickle cell clinic has only one toilet facility, which presents a significant barrier when seeking care and treatment. The availability and accessibility of restroom facilities are essential in healthcare settings, and having just one toilet can lead to various challenges and discomfort for both the adolescents and their caregivers.
“Having just one restroom at the clinic can be really tough for us sometimes. We need more than one restroom so that both boys and girls can have some privacy and so we don’t have to line up and wait our turn just to use the toilet.” (16-year-old female from Wakiso district).
High costs of essential medication
Parents 7/11 (64%) reported that maintaining the health of adolescents living with sickle cell disease was costly because they often fall sick and require regular healthcare visits. They expressed concern over the lack of knowledge and information related to SCD treatment options and limited disease awareness at the community level. Nevertheless, they appreciated the free medical care provided at this facility by health workers experienced in managing sickle cell disease, which motivated them to continue bringing adolescents to the clinic. However, they requested the government to make hydroxyurea free for all eligible patients, similar to the provision of ART for HIV-positive individuals.
“Sometimes my daughter develops pain in the middle of the night, and I am not sure what to do at such an hour. Our clinic here in Mulago is outpatient; I end up getting confused, and sometimes I go to the nearest clinic for first aid.” (Father of a 13-year-old girl)
“My humble appeal to the government is to give this new drug called hydroxyurea to our children because HIV-positive people get ARVs for free in this country. They told us that it has been reported to be effective in improving survival and reducing morbidity in some SCD patients.” (Parent of a 12-year-old boy)
The clinic receives an average of 50-80 patients a day, yet it is understaffed. Parents were also concerned about long waiting times and the cost of buying medicine, as previously mentioned by adolescents. They cited these issues as major challenges when seeking care for their adolescent children.
Parents 8/11(73%) asked the government to increase the number of doctors, address the staffing inadequacy, and ensure that essential drugs are always available. Key informant interviews provided insight into the health system situation and challenges at the clinic. Health workers 3/5 (60%) mentioned the common practices used in the management of sickle cell disease, which include routine drugs such as folic acid and fansidar, among others;
“Here we provide but also emphasize sickle cell chronic care, folic acid supplementation, disease preventive practices, including malaria prophylaxis with fansidar/ insecticide-treated bed nets, pneumonia with penV, pneumococcal vaccination, growth assessment and counseling, screening for and management of acute complications, genetic counseling and awareness on healthy living, including proper hydration, having personal awareness and care, and good nutrition.” (Key Informant Interview, Mulago sickle cell clinic)
Interpretation of the interview data revealed that health care providers perceived an important unmet need for the provision of adolescent-friendly services at the sickle cell clinic in Mulago. There was evidence of significant gaps in knowledge about the unique problems faced by adolescents. “The clinic does not have special services for adolescents, and I attribute this to a congested environment and under staffing , Other than the routine care and management of complications, there is little time for appreciation of adolescent’ peculiar issues and providing counselling ( Key informant interview)
Data from health workers still revealed that they acknowledged the challenges experienced by adolescents and their parents when trying to receive services at the clinic. They indicated that they are aware of these challenges and are doing their best to find possible solutions through Ministry of Health and other partners.
“We need to look into the facility barriers so that all adolescents can come for regular care; otherwise, they may get complications related to the disease and either present when they are sick and not easy to manage, or ultimately die from these complications” (Health worker)
“To reduce crowding, decentralization of diagnosis of sickle cell disease and other services should be at all regional referral hospitals in the country, so that Mulago handles only complicated cases. I also think that staff needs training/ orientation in offering friendly adolescent care services, using age-appropriate counseling on the disease, to create and improve self-awareness and esteem, and to actively reach out to adolescents by way of putting aside a specific day for their review.” But currently, counseling on an individual basis and giving appointments are used to ensure that adolescents regularly attend the clinic.
The clinic has no follow-up mechanism in place for adolescents. All 5/5 (100%) health workers said there are no funds to facilitate this. “We source out for them when they endeavour to come for their clinic appointments. Otherwise, we appreciate a lot of gaps in reaching and retaining the adolescents” (Key Informant, Mulago sickle cell clinic)
In terms of receiving comprehensive, high-quality care, the majority of participants reported that the provision of free and safe care from experts treating SCD at the clinic was a key facilitator. This is in line with a study that reported appropriate quality care as the major facilitator of care for patients with chronic conditions [26, 27]. However, a study conducted in the Democratic Republic of the Congo showed that for 93.6% of the participants, the cost of medical care related to sickle cell anemia was unaffordable [28]. In other studies, this has been attributed to the fact that nearly 70% of sickle cell patients are from poor families [29]. These findings underscore the need for sustained efforts to ensure accessibility and affordability of care, particularly for vulnerable populations.
This study reveals that healthcare providers were knowledgeable and caring, a factor that facilitated care-seeking for sickle cell by adolescents. In some other studies, researchers found that the majority of respondents lacked confidence in caring for individuals with SCD [30]. Furthermore, participants in this study added that, as a result of receiving care from experts, their health had improved, and they no longer missed school due to pain. Some studies affirm that school absenteeism among adolescents is significantly associated with health-related variables [31-33]. However, participants also reported financial barriers that could still deter patients from receiving timely care at the clinic, such as travel costs and the need to purchase some medications. The costliness referred to by families primarily stemmed from the frequent need to purchase medications during stock-outs at the clinic, transportation to and from the hospital, and managing complications that required emergency care [34]. While the clinic provides free services, parents reported being asked to buy essential drugs like antibiotics and pain relievers from private pharmacies. Additionally, some mentioned the financial burden of missing work to care for their children [35]. Although hydroxyurea was not widely mentioned, a few parents expressed a desire for it to be made freely available, similar to ART for HIV, indicating that disease-modifying therapy (DMT) costs may also be a concern [36-38]. This finding is similar to that of [6], who also revealed that families of children with sickle cell disease face significant financial burdens due to frequent hospital visits, medication costs, and caregiving responsibilities. This highlights the importance of addressing financial barriers as a critical factor in ensuring continued access to care.
Supportive family members emerged as a cornerstone for participants in this study, reinforcing the significance of familial ties in maintaining healthcare engagement [39]. The parallels drawn with a study conducted in Kingston, Jamaica [40, 41], adolescents emphasized the pivotal role of strong family support in fostering a sense of acceptance, underscoring the universal nature of this theme. These findings resonate across different cultural contexts, highlighting the fundamental importance of a nurturing family environment in adolescents’ healthcare journeys [18]. This emphasizes the need for healthcare interventions that incorporate family-centered approaches to optimize adolescent SCD care.
All participants in this study highlighted the need to reduce wait times for consultations. Adolescents and caregivers reported that long wait times between arrival and receiving care hindered timely treatment and regular healthcare seeking [42]. This finding is consistent with other studies, which have reported that sickle cell patients frequently have long wait times when seeking treatment for pain despite the serious consequences of treatment delays [28, 43, 44]. Reducing wait times through increased staffing and improved clinic efficiency may enhance timely access to care and patient satisfaction.
Health workers concurred with adolescents on the issue of waiting time, attributing it to understaffing and congestion [45]. In addition, findings from patient satisfaction studies have reported long waiting times as unacceptable, with patients consistently rating them poorly [46]. Furthermore, patients with chronic illness need to access health care and other essential services without experiencing financial hardships, and they should be able to physically access the services they need [47]. Addressing staffing shortages and improving service flow may help alleviate congestion and improve patient experiences.
Health facilities that lack proper treatment options and physical infrastructure, such as space that ensures privacy, confidentiality, and a high level of comfort, struggle to retain patients [48]. Our study revealed that although some patients could travel to the clinic using public transport, issues such as inadequate physical space, drug shortages, and a lack of medical staff still prevented adolescents from receiving timely care [49]. Furthermore, specialized SCD healthcare providers with comprehensive expertise are scarce, particularly in low-income and rural communities with limited resources [50, 51]. Investment in infrastructure and workforce development is crucial for enhancing care quality and patient retention.
To deliver safe and quality care, the government must make efforts to improve infrastructure and ensure the availability of essential drugs because based on the study findings, infrastructure improvements should focus on expanding physical space to reduce overcrowding at triage, more clinical rooms, and within the temporary admission area [52]. Additionally, addressing basic facility limitations such as the reliance on a single toilet was highlighted by both staff and families as essential. These challenges were seen as critical barriers to efficient patient flow and timely service delivery, particularly for adolescents who require regular, respectful, and uninterrupted access to care. This aligns with findings from other studies that emphasize the importance of adequate physical space and basic amenities in improving patient experience and retention in chronic care settings [52]
Some studies have established that reaching patients with chronic conditions who do not seek care can be challenging and have suggested that collaborations with other healthcare providers could help in following up with such patients [47, 53, 54]. This was affirmed in our study through interviews with healthcare providers at the clinic in Mulago, who also recommended that the government should decentralize diagnosis and treatment of SCD to increase access to care and decongest the national clinic [55]. This calls for a policy shift towards decentralized SCD services to enhance access and reduce patient burdens. This study also proposes the need to equip patients with self-care skills to help reduce patient load.
A key barrier that adolescents face in obtaining health services is a lack of specific adolescent-friendly services. One common reason for this is that they must wait in a place where they could be seen by people they know which may discourage them from seeking care [56]. These barriers relate to the availability, accessibility, acceptability and equity of health services. Additionally, services may be delivered in a way that adolescents do not find suitable, even if they are accessible [57, 58]. Ensuring adolescent-friendly services can improve healthcare utilization and patient confidence. Therefore, it is essential to consider facilitators and address the barriers to scaling up care for sickle cell disease among adolescents.
Our findings highlighted the challenge of compromising confidentiality due to shared space in the consultation room and the lack of adolescent-friendly services. This is partly because health workers have not received training in providing such specialized care. Adolescents, however, want to be treated with respect and to have confidence that their confidentiality is protected. There is a need for targeted training for healthcare providers and the establishment of adolescent-friendly spaces to promote trust and engagement in care.
Study strengths and limitations
The study involved in-depth interviews with adolescents, parents, and health workers, allowing for triangulation of responses and enhancing the validity of the findings.
Respondents were selected from only two districts of Uganda; therefore, while the results may be applicable to similar settings, they may not be generalizable to the entire country. Additionally, variables were measured through self-report, making the study susceptible to recall bias.
One other limitation of this study is the relatively small number of respondents, which may affect the generalizability of the findings. Also, most survey participants appeared to come from supportive family environments, which could have introduced a positive bias in the reported experiences and outcomes. This may have led to an underrepresentation of challenges faced by adolescents from less supportive households, potentially skewing conclusions about the role of family support in care retention.
Furthermore, the data collection tool was not piloted, which may have limited the opportunity to identify potential ambiguities, refine questions for better clarity, or assess participant comprehension before full implementation. Future studies may focus on the quality of care and health outcomes for this special group.
Our findings indicate that the most reported facilitator was receiving comprehensive, quality care from knowledgeable and caring providers, with 8/10 (80%) of adolescents mentioning this theme and parents 10/11(99%) emphasizing the same as the reason for keeping their adolescents in care.
The most frequently cited barrier was long waiting times, reported by 10/14 (71%) adolescents. Parents reported that they often chose alternative clinics because they needed to engage in other activities, particularly income-generating ones. In addition, inadequate space and staff shortages hindered timely access to services, potentially affecting treatment adherence and health outcomes. These highlight the urgent need to improve clinic staffing and efficiency.
Research implications for healthcare practice
This study highlights key areas for improving sickle cell care among adolescents. Strengthening community sensitization can enhance adherence to clinic appointments. The Ministry of Health should ensure a continuous supply of essential medicines and clinical supplies to prevent treatment interruptions. Expanding clinic space and decentralizing services to lower-level health centers would reduce congestion and waiting times. Integrating counseling services can further support adolescents in managing both the physical and psychosocial aspects of their condition.
Recommendations for future research
Future research should assess the impact of waiting times on adolescent retention in sickle cell care. Studies should quantify service delays and identify strategies for improving efficiency. Research is also needed to evaluate the effectiveness of decentralizing sickle cell services in increasing access and reducing patient burden at referral hospitals. Additionally, exploring the role of psychosocial support in treatment adherence could inform interventions for better patient outcomes.
What is already known about the topic
What this study adds
Angela Kisakye is an Associate Editor at the Journal of Interventional Epidemiology and Public Health (JIEPH) and a co-author of this manuscript. In line with the journal’s conflict-of-interest policy, he was fully recused from the peer-review process and had no involvement in the editorial handling or decision-making for this submission. An independent editor oversaw the review and decision-making process. All other authors declare that they have no competing interests.
The authors acknowledge the Makerere University School of Public Health Resident Mentors and staff who provided technical guidance, follow-up, and support throughout the process. We thank Mulago National Referral Hospital, especially the sickle cell clinic and its staff. We acknowledge all the study participants and research assistants.
PB conceived and led the design of the study protocol, data collection, data analysis, and initial interpretation of the data. She wrote the first draft of the paper and took part in the subsequent revisions. AM and PK made substantial contributions to the conception and design of the study. PK and FXK contributed to the data collection process by reviewing the data collection tool. FXK, ANK, and JK worked on data interpretation and were involved in the drafting of the manuscript. All authors revised the paper for important intellectual content and read and approved the final version.
Table 1: Operational Definitions
| Theme | Sub-theme | Operational definition |
|---|---|---|
| Facilitators to SCD care | Comprehensive, high quality care Pain Management | This was care related to treating and alleviating sickle cell-related pain through medication and other interventions reported as effective by adolescents and parents. |
| Out of care | Adolescents living with sickle cell disease who were registered clients at Mulago National Referral Hospital and had missed their scheduled clinic appointments for a period of six months or more without returning for follow-up care during the study period. | |
| Health Worker Expertise | This is where healthcare professionals were perceived to have specialized knowledge in managing sickle cell disease compared to other facilities. | |
| Knowledgeable & Caring Providers | This referred to where adolescents described health workers as both technically skilled, for example, understanding SCD, prescribing appropriate medication, and managing pain effectively and emotionally supportive by showing empathy. | |
| Feeling better | This was expressed through reduced pain, increased mobility, improved school attendance, and emotional reassurance. | |
| Supportive family Emotional support & practical assistance | These were descriptions of caregivers reassuring adolescents, expressing love, or committing to their treatment journey including help from family members with transportation, financial support and navigating health decisions. | |
| Barriers to SCD care | Long Wait Times | Referred to extended delays experienced by adolescents at various points of service (e.g., consultation, lab tests, medication), which limited timely access to care and reduced motivation to attend clinic appointments. |
| Inadequate Clinic Space and one toilet facility | This represented the physical limitations of the sickle cell clinic including overcrowded waiting area, insufficient consultation space, and lack of separate emergency beds that impaired comfort, privacy, and quality of care. | |
| Restricted Working Days | Referred to the clinic’s limited operating schedule (Monday to Friday only), which prevents adolescents from accessing specialized SCD services during weekends, especially in emergencies. | |
| Drug Stock-Outs and high costs | This was unavailability of essential medications at the clinic, resulting in treatment interruptions and financial strain due to out-of-pocket purchases by caregivers. | |
| Understaffing | Referred to a shortage of qualified health professionals, leading to long service queues, rushed consultations and limited provision of adolescent-centered care. | |
| Lack of Adolescent-Friendly Services | The absence of tailored healthcare services that address the specific developmental, psychological, and communication needs of adolescents, including counseling and age-appropriate engagement. | |
| Compromised Confidentiality | Described the inability to maintain private interactions between adolescents and health workers due to shared consultation spaces, which discouraged disclosure of sensitive health concerns. |
| Theme Category | Theme | Code Name | When to Apply |
|---|---|---|---|
| Facilitators to care | Appropriate Care | FC1: Pain Management | When a participant describes relief from pain, improved mobility, or successful medication. |
| Health Worker Expertise | FC2: Skilled Providers | When participants describe providers as experienced and trained more than others. | |
| Knowledgeable & Caring Providers | FC3: Empathy & Support | When participants describe feeling cared for, supported, or emotionally reassured by providers. | |
| Feeling Better | FC4: Improved Well-being | Apply when participants describe improved quality of life because of clinic services. | |
| Supportive Family | FC5: Family Support | Apply when a participant talks about transport help, money for drugs, or encouragement to continue care. | |
| Barriers to care | Long Waiting Times | BC1: Long Queues | When any waiting time or service delays are described. |
| Inadequate Clinic Space | BC2: Overcrowding | When participants describe uncomfortable, shared, or insufficient physical space. | |
| Restricted Working Days | BC3: Limited Access Days | When participants mention needing care on weekends or when clinic is closed. | |
| One Toilet Facility | BC4: Limited Toilet Facilities | When participants describe restroom problems at the clinic. | |
| Understaffing | BC5: Staffing Shortage | When participants mention delays due to lack of staff or staff fatigue. | |
| Drug Stock-Outs | BC6: Drug Shortage | When participants say they have to find or buy drugs elsewhere. | |
| Lack of Adolescent-Friendly Services & Confidentiality | BC7: No Adolescent Privacy | When participants talk about shared consultation rooms or lack of privacy. |
| Theme Category | Theme | Sub-Theme | Category/Description |
|---|---|---|---|
| Facilitators into SCD care | Theme 1: Appropriate care | Health workers’ expertise | Specialized knowledge in SCD management |
| Pain management | Pain relief and symptom control | ||
| Lifestyle adjustment | Support for adapting daily life to SCD management | ||
| Assistance with healthcare system navigation | Guidance in accessing healthcare services and support systems | ||
| Theme 2: Knowledgeable and Caring Providers | Enhanced Emotional Well-being (Feeling Well) | Patients report significant improvement in overall health and well-being (e.g., relief from pain and symptoms, renewed hope). | |
| Patient-Centered Communication and Empathy | Effective, respectful communication. Demonstrated empathy and supportive interactions. Encouragement that enhances patient trust. | ||
| Understanding Adolescent-Specific Needs and Empowerment | Tailored care addressing the unique challenges of adolescents. Empowerment through individualized support and education. | ||
| Theme 3: Social and Peer Support | Support Networks | Emotional and physical support from family. Peer support and connection with other adolescents. | |
| Health System Barriers to SCD Care | Theme 4: Waiting Time | Long Wait Times | Prolonged waiting during clinic visits. |
| Theme 5: Clinic Infrastructure | Overcrowding and Space Constraints | Insufficient seating in waiting areas. Overcrowding in waiting areas. Lack of privacy during consultations. Inadequate number of toilets. Unsanitary conditions. | |
| Theme 6: Staffing and Medical Supplies | Personnel and Supply Shortages | Inadequate number of healthcare professionals. Overworked staff leading to care delays. Absence of necessary medications. Delays in medication restocking. | |
| Individual Barriers to SCD Care | Theme 7: Adolescent-Specific Barriers | Confidentiality and Tailored Care | Concerns over compromised confidentiality (e.g., shared consultation spaces). Limited understanding of adolescent-specific healthcare needs. Limited awareness of potential complications. |
| Theme 8: Communication Barriers | Provider-Patient Communication | Lack of empathy and understanding. Ineffective communication. Limited time for counseling and education. Insensitivity to cultural needs. | |
| Theme 9: Financial and Physical Accessibility Barriers | Accessibility Challenges | Unavailable drugs. Inability to afford medicines. Lack of insurance coverage. Absence of financial support programs. Distance to clinic, transportation issues. | |
| Theme 10: Knowledge and Awareness Barriers | Disease and Treatment Knowledge | Lack of understanding about SCD. Limited knowledge about treatment options. |
| Category | Theme | Participant Group | Frequency | Quotes |
|---|---|---|---|---|
| Facilitator | Appropriate Care | Adolescents | 8/10 (80%) | “The doctors treat me well… every time I come with pain, they give me that medicine and it cures my pain immediately.” |
| Parents | 10/11 (90.9%) | “The doctors at Mulago are specialized in handling children with sickle cell; this is why I prefer this clinic.” | ||
| Knowledgeable, Caring Providers & Feeling Better | Adolescents | 14/14 (100%) | “They are not only knowledgeable but also caring, showing empathy and compassion every step of the way. My pain has reduced… I don’t miss school anymore.” | |
| Parents | 10/11 (90.9%) | “Despite the big numbers, doctors are always willing to work on all patients without complaining. They are good.” | ||
| Supportive Family | Adolescents | 9/14 (64%) | “My mummy always tells me she will never leave me alone… she gives me the reason to continue seeking care.” | |
| Barrier | Long Waiting Time | Adolescents | 10/14 (71%) | “We wait for long, I sit for close to 3 hours before I see the doctor and then the rest of the process may take 6 hours…” |
| Parents | 7/11 (67%) | “Doctors and nurses come very late. Those who come early don’t begin work straight away.” | ||
| Understaffing | Adolescents | 10/14 (71%) | “There are so many patients yet few doctors that’s why we spend the whole day here.” | |
| Parents | 8/11 (73%) | “The clinic receives many patients a day yet it is understaffed.” | ||
| Health Workers | 5/5 (100%) | “Work overload and fewer clinicians limit time spent on each person.” | ||
| Drug Stock-Outs | Adolescents | 7/14 (50%) | “They tell my mother to go and buy some drugs in a pharmacy yet there are days when she has no money.” | |
| Parents | 8/11 (73%) | “Usually there are no drugs… they only have folic acid and Panadol.” | ||
| Health Workers | 4/5 (80%) | “Medical supplies should be made available all the time to ensure efficient delivery.” | ||
| Inadequate Clinic Space | Adolescents | 7/14 (50%) | “When we are many who are in pain, some sleep on the floor and others share a bed because the room is very small.” | |
| Health Workers | 5/5 (100%) | “The space is so limited you cannot exhaustively attend to all their needs there is no privacy.” | ||
| Limited Toilet Facilities | Adolescents | 9/14 (64%) | “We need more than one restroom so that both boys and girls can have some privacy.” | |
| Restricted Working Days | Adolescents | “We can’t afford to wait until Monday when our pain or health takes a hit on a Saturday night.” | ||
| Lack of Adolescent-Friendly Services & Confidentiality | Adolescents | 7/14 (50%) | “One room is shared by all our doctors… you fear to say personal matters because other people can hear you.” | |
| Health Workers | 5/5 (100%) | “Other than routine care, there is little time for appreciating adolescents’ peculiar issues and providing counselling.” | ||
| High Cost of Maintaining Adolescents in Care | Parents | 7/11 (64%) | “Keeping an adolescent in good health is costly because they often fall sick and need regular care.” |
| Participant Group | Characteristics | Frequency |
|---|---|---|
| Adolescents | Age range | 10–19 years |
| Sex | ||
| Females | 9 | |
| Males | 5 | |
| Education | ||
| Primary | 8 | |
| Secondary | 6 | |
| Care status | ||
| In-care | 7 | |
| Out of care | 7 | |
| Lived with | ||
| Biological parents | 10 | |
| Guardian | 4 | |
| District of residence | ||
| Wakiso | 8 | |
| Kampala | 6 | |
| Parents | Age range | 28–58 years |
| Females | 8 | |
| Males | 3 | |
| Education | ||
| Primary | 3 | |
| Secondary | 2 | |
| Tertiary | 6 | |
| District of residence | ||
| Wakiso | 7 | |
| Kampala | 4 | |
| Health Workers | Age range | 30–55 years |
| Sex | ||
| Females | 2 | |
| Males | 3 | |
| Occupation | ||
| Doctors | 2 | |
| Clinician | 1 | |
| Nurses | 2 |