“I had to take a ‘dead year’ to undergo surgeries,” the Lived Experiences of University Students with Sickle Cell Disease, an interpretative phenomenological analysis

“I had to take a ‘dead year’ to undergo surgeries,” the Lived Experiences of University Students with Sickle Cell Disease, an interpretative phenomenological analysis | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article “I had to take a ‘dead year’ to undergo surgeries,” the Lived Experiences of University Students with Sickle Cell Disease, an interpretative phenomenological analysis Vivian Nabisere, Active Atukunda, Kevina Tracy Mbabazi, Angella Namujuzi, and 1 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-7300043/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Background Sickle cell disease (SCD) is a hereditary blood disorder characterized by the production of abnormal hemoglobin molecules that cause red blood cells to take on a crescent or sickle shape. SCD causes excruciating pain, leading to hospitalizations and negatively affecting patients' quality of life. In transitioning to university life, students find themselves in a new environment, with demanding new domestic responsibilities and engaging in academic tasks that are perceived as different and are closely related to future success and dealing with their social life. The experiences of university students with SCD in Uganda have not been investigated. This study aimed to explore the lived experiences of university students with sickle cell disease at Makerere University, Uganda. Methods The study employed a qualitative approach. We conducted in-depth interviews with university students living with SCD. A total of 15 individuals were purposively recruited and participated in the study. Interpretative phenomenological analysis was applied to explore the lived experiences of students living with SCD and ascertain important themes. Results The average age of participants was 23 years (range 19–26), and the majority (60%) were male. Patient experiences were captured in six overarching themes: academic disruptions, experience of stigmatization, the feeling of missing out, support systems, effective self-management and coping strategies, and being normal. Conclusions This study highlights the significant challenges faced by university students with SCD in relation to academic interruptions and social integration due to health complications. Despite these challenges, the resilience and coping strategies exhibited by these students underscore their determination to succeed in their academic pursuits. Universities must recognize the unique needs of this population and implement policies that provide adequate support to ensure that students with SCD can thrive both academically and socially. Sickle cell disease sickle cell anaemia coping strategies stigma university students institutional policy disability osteonecrosis Contributions to literature There is limited evidence on the academic and social experiences of university students living with sickle cell disease, especially in low resource settings. Stigma, limited support systems, and barriers to healthcare access contribute to reduced academic participation and social integration among these students. Inclusive university policies and targeted health services are needed to improve quality of life and educational outcomes for young people with sickle cell disease. Background Sickle cell disease describes a group of inherited hemoglobin disorders characterized by a predominance of abnormal sickle hemoglobin in erythrocytes. The most common and severe form of sickle cell disease is sickle cell anaemia, which is caused by the homozygous inheritance of sickle haemoglobin from both parents.( 1 ) The worldwide estimate for neonates born with sickle cell disease each year is 400000, including 300,000 with sickle cell anaemia.( 1 ) The greatest burden is seen in Sub-Saharan Africa, which accounts for more than 75 percent of all sickle cell disease cases, with this proportion expected to rise by 2050.( 2 ) In Africa, sickle cell disease contributes significantly to mortality in children under the age of five,( 3 ) limiting progress toward the United Nations Sustainable Development Goal 3, Good Health and Well-Being, which includes reducing childhood mortality( 4 ). Uganda has the fifth highest sickle cell burden in Africa, with 13.3% of children having sickle cell trait and 5,000–20,000 babies born with SCD every year, of which 80% die before reaching 5 years of age( 5 ). WHO has also challenged countries in Sub-Saharan Africa to develop national strategies for sickle cell disease that address specific goals, targets, and objectives. Despite this, ministries of health face numerous challenges in developing meaningful interventions, including a lack of accurate data on disease burden and distribution within their respective countries.( 6 ) The main clinical manifestation of SCD is the "acute painful crisis," which often requires hospitalization.( 7 ) "Sickle cell crisis" is a term that describes several acute conditions such as the vaso-occlusive crisis (acute painful crisis), aplastic crisis, splenic sequestration crisis, hyperhemolytic crisis, hepatic crisis, dactylitis, and acute chest syndrome. Other acute complications include pneumonia, meningitis, sepsis and osteomyelitis, stroke, avascular necrosis, priapism, and venous thromboembolism.( 8 ) Fuggle et. al., examined the severity and frequency of sickle cell related pain. They found that pain usually occurs once every 14 days, and pain ratings revealed that it was significantly more painful in children with SCD than it was for controls.( 9 ) High rates of disruption are brought on when one is unable to engage in hobbies, play sports, or visit with friends.( 9 ) A study done in Nigeria among students with sickle cell disease informed that absence from school of greater than one week was associated with poor performance, and children with sickle cell anemia had higher rates of school absence.( 10 ) Academic absenteeism may hinder adolescents with SCD from receiving appropriate specialized educational interventions and may result in lower academic attainment.( 11 ) According to a study conducted in Saudi Arabia on university, middle school, and high school children with SCD, 43 percent of the participants missed more than 14 days of school annually, compared to just 11 percent of the healthy participants, during the 2019 academic year.( 12 ) Another study found that 68% of patients with SCD reported missing at least one important exam each year, and 85% of adult SCD patients reported missing school on average once per week.( 13 ) Schwartz and others hypothesized the associates of school absenteeism with sickle cell disease.( 14 ) Their study informs us that demographics, health related and psychosocial variables should be captured in subsequent studies. They found out that health-related and psychosocial variables were related to absenteeism, but demographic variables were not. However, their study did not include students with SCD at tertiary institutions. In transitioning to university life, students find themselves in a new environment, with demanding new domestic responsibilities and engaging in academic tasks that are perceived as different and are closely related to future success and dealing with their social life.( 15 ) The findings of this study shed light on the multifaceted challenges these students face and the tailored interventions to support their well-being and better quality of life. Methods This study aimed to explore the lived experiences of university students with sickle cell disease at Makerere University. A qualitative cross sectional study design was employed. In-depth interviews were done with adult university students living with SCD to explore their experiences within the university setting. Participant Recruitment Purposive sampling was used to recruit participants for the study. Eligibility criteria included being 18 years or older, having a self-reported diagnosis of SCD, and being an undergraduate student at Makerere University. Those with SCD and another non-SCD related chronic disease were excluded. To increase awareness and reach potential participants, flyers were distributed at adult sickle cell clinics, and advertisements were posted on social media platforms. Additionally, sickle cell organizations were contacted to help promote the study and encourage participation. Data Collection Interviews were conducted between 20th August, 2023 and 30th March, 2024, with each session lasting approximately 90 minutes. Two female researchers, V.N. and A.A, who were medical students, conducted the interviews with each participant separately. The qualitative data was gathered using an in-depth, semi-structured interview guide that was grounded in the literature and was pilot tested. The development of the interview schedule was a reflective process, considering the sensitive nature of the questions and their potential impact on participants' lives.( 16 ) Probes were used throughout the interviews to enrich responses, particularly in instances where participants struggled to understand the questions or elaborate on their answers. The questions were open-ended, designed not to elicit right or wrong answers, but rather to encourage a descriptive and reflective discussion. Data saturation was reached at participant 15. To ensure accuracy and prevent data loss or recall bias, the interviews were audio-recorded and notes were taken. This allowed for capturing the exact responses of participants, including the nuances in the researchers' reactions. The recordings also facilitated a more thorough understanding of the responses by allowing for pauses and playback as needed. All interviews were transcribed verbatim for detailed analysis. Data Analysis The transcripts were thoroughly cleaned, followed by an iterative process of reading and re-reading to develop codes and themes. These themes were then discussed and refined during team meetings to ensure a comprehensive understanding of the data (V.N, A.N, K.T,M and A.A). We analyzed data thematically using Interpretative Phenomenological Analysis (IPA). This approach is ideal for small, homogeneous samples where participants are purposely selected for their shared experience of the phenomenon.( 17 ) Each participant provided an in-depth, reflective narrative of their experiences from a personal perspective. We used a two-stage interpretation process known as ‘double hermeneutics,’ where participants first interpret their own experiences, and the researcher then interprets these accounts to gain a deeper understanding of the participants' lived experiences.( 18 ) Results General characteristics A total of 15 individuals participated in the study. The average age of participants was 23 years (range 19–26), and the majority were male, comprising 60% ( 9 ) of the sample. The general characteristics of participants, including age, year of study, sex, and field of study, are summarized in Table 1 . Table 1 Participant characteristics Patient Number Field of study AGE YEAR OF STUDY SEX Student 1 Computer Science and Information Technology 19 1 M Student 2 Veterinary Medicine and Animal Sciences 20 1 M Student 3 Veterinary Medicine and Animal Sciences 24 4 F Student 4 Humanities and Social Sciences 24 3 F Student 5 Natural Sciences 26 4 F Student 6 Health Sciences 24 3 F Student 7 Health Sciences 23 4 M Student 8 Health Sciences 22 3 F Student 9 Law 22 3 M Student 10 Education 24 3 F Student 11 Health Sciences 25 4 M Student 12 Natural Sciences 26 3 M Student 13 Engineering and Technology 24 3 M Student 14 Veterinary Medicine and Animal Sciences 23 3 M Student 15 Natural Sciences 24 3 M This study explored the lived experiences of university students living with Sickle Cell Disease (SCD) using Interpretative Phenomenological Analysis (IPA). The analysis revealed several overarching themes and sub-themes that reflect the complexities of balancing social and academic life and health challenges. Overview of the themes. Six themes were identified as being central to the experiences of university students living with SCD Theme 1: Academic Disruptions Subtheme 1: Educational Setbacks Students experienced significant loss of time in their academic progress due to SCD-related health crises. "I missed exams in my first year and lost a full year because of a crisis. I had to redo everything." (Student 9) "When I got Avascular Necrosis, it got to stage three, and I had to drop out of school because I couldn't do anything. I had to take a “dead year” to undergo surgeries." (Student 7) Subtheme 2: SCD Complications Several students recounted how complications from SCD led to delays and prolonged hospitalizations, further disrupting their studies. “Only with the difficulty caused by the disease, like having to walk long distances from my hall of residence to the college, it all becomes tough for me. Especially with my hip issue.” (Student 2) “ Sometimes the pain is too much and I can't do much. I just have to forgo class. [...] If I get sick within the semester, I can miss like 1–2 weeks of lectures.” (Student 4) "There is a semester where I had bone pain all day and was dizzy. I was hospitalized and had gallstones and leg ulcers." (Student 11) "This was last month, and it was because I had a severe thrombotic crisis that rendered me unable to walk, hence not being able to attend lectures for two weeks. " (Student 12) "It is especially challenging for me in my menstrual periods. I often have crises with hospital admissions during such days. During exam periods, I sometimes miss tests and lectures as a result. It is especially difficult while at school." (Student 6) These complications resulted in significant academic setbacks, with participants missing crucial lectures and exams. Theme 2: Experience of Stigmatization Subtheme 3: Stigma and Its Emotional Impact Participants described how stigmatization by peers added to the emotional burden of living with SCD. "There was a day I came from class, and on returning to the hostel, I found a group of a few girls in the corridor holding my medication and talking about me. They were saying things like, 'You mean she also has sickle cell disease?' and they were busy laughing. It was so stigmatizing and depressing, especially since some of them were my friends and even my roommate." (Student 3) This experience highlights the deep emotional impact of stigma, especially when it comes from people who are expected to be supportive. “Let's say if there was a possibility whereby I didn't have the crutches and I was just a normal sickle cell person, people would not even know. [...] But with the crutch, obviously everyone wonders how a young boy can be walking with a crutch. So everyone can look at the crutch and look at you, but of course, I just.. I just ignore it.“ (Student 1) Subtheme 4: Empowerment Through Disclosure and Advocacy In response to such stigmatization, some participants chose to openly disclose their condition, which led to positive outcomes. "To deal with the stigma, I decided to tell them that I had SCD. Everyone got to know, and I even started a campaign where all the warriors felt free to unveil their status. This helped us live freely with the rest of the students in the school." (Student 3) “ […] I told her I've lived with sickle cell for 26 years. And you know, everyday I take tabs, but you don't ask. But I know you go out and talk about it. So today I'm telling it to you. Not everybody with sickle cell disease has yellow eyes, not all of them, ask me. Some people are healthy, they're doing well because you know, they are following procedures. […] I started talking to my friends, and I started the awareness campaign." (Student 5) This proactive approach not only mitigated the effects of stigma but also fostered a sense of community and support among students with SCD. Theme 3: Support Systems Subtheme 5: Family Support The unwavering support from family members emerged as a vital resource for students coping with SCD. "I get all the support from my family members. My family has really been there for me; I'm so proud of them." (Student 9) “For psychological support my mum has played a big role because she has supported me in all possible ways, and has been there for me.” (Student 2) “So any time in the holidays when I get an attack, [...] they help carry me to the car, because then I am in a lot of pain, I can't even move. They carry me, they be with me in the hospital, they give me company until I am actually discharged.” (Student 1 on support during a painful crisis) The reliability of family support provided students with a crucial safety net, particularly during health crises. Subtheme 6: Friendships and Social Support Friendships also played a critical role in helping students manage the challenges of SCD while away from home. “Specifically my classmates have been good to me, and I know they’ll continue to be good. [...] My discussion group members have as well been really good to me, they adjust their schedules sometimes to accommodate me, and that’s how I get support.” (Student 2) "For me, it's very good to make friends in our area because you know, anything can happen when you're out of home. So you need to involve your friends so that in case anything happens, they know what to do and have one or two contacts of your family members." (Student 10) This sense of preparedness and the involvement of friends provided an additional layer of security for the students. Subtheme 6: Need for Enhanced Health and Support Services Students emphasized the need for improved and accessible health support services, including free sickle cell testing, genetic counseling, and medication specific to their condition. They also advocated for regular medical checks, such as routine CBC tests, and practical accommodations like ground-floor rooms in residence halls to ease mobility. “The university can make arrangements and put up a facility at the university hospital, sensitize the warriors to get their medication from there and for the simple tests like CBC, since we need to have them routinely. They could put in place measures to address some challenges: say in case you are anemic, they could give you at least one unit of blood. For the halls of residence, I am lucky enough to be on the ground floor. But next year we must apply for change of rooms. If they could reserve a few ground floor rooms for students with sickle cells, in order to avoid climbing up and down the stairs.” (Student 2) “Because sickle cell disease can affect many sicklers’ mobility, so they can put, like a way, whereby if I am coming from outside on a boda boda, I don't have to walk.” (Student 1) A boda boda is a bicycle or motorcycle taxi used in East Africa to transport passengers or goods. “Like to have awareness campaigns, and try and advise people to test and to donate blood. Free testing and counseling services should be provided. Then they should also engage in community outreaches for those people living with sickle cell. So if I go missing at school, somebody from campus is able to locate me and you know, try and talk to me and see how I'm doing. Something like that.” (Student 3) “They should try and see how warriors also get free medication. Because I know we have a hospital here, right? But it is not equipped with all the medicine that warriors need.” (Student 6) Subtheme 7: Reliance on the Students’ with Disability Scheme Students with disability from SCD complications such as avascular necrosis benefit from the university’s existing disability support system, which provides them with personal helpers for tasks. “I have a helper, because I'm on the disability scheme. So I have a helper who can sometimes help me carry my bag. When I want to send someone to those long distances, I can send that person. Sometimes if he's with me, I can tell him to help me carry the seat to my class or where I'm going to sit.” (Student 1) Theme 4: Effective Self-Management and Coping Strategies Subtheme 8: Managing Academic Stress and Health Challenges Participants developed various strategies to manage the dual pressures of academics and health. They emphasize self-care routines, such as avoiding stress, taking medication consistently, eating adequately, and preparing for anxiety-inducing situations like exams by using painkillers and staying warm. “As a student, I try to avoid pressure because you know, there is pressure that comes from campus. So I try to avoid that pressure. I also try to stay away from stress factors. Then I tried to eat once in a while. Yes. And take fresh juice, [...] Then they make sure I take my meds every day on time, as I try to communicate with my doctors in case there is something that I'm not seeing right, happening.” (Student 9) "Every morning before I go for practicals or if I had an exam, I would first take a painkiller because I know there's that anxiety. I always have a scarf—some examination halls don't allow sweaters, but at least they accept a scarf. So I made sure I had a scarf around my neck, took my painkillers, and tried to take water." (Student 14) This routine helped the student manage anxiety and prevent health crises during stressful academic periods. Subtheme 9: Stability Through Routine Establishing and adhering to a consistent routine was another coping mechanism. "What helps is taking pain medication three days before and three days after my period(menstrual periods). When I stick to this routine, everything is really okay." (Student 6) This methodical approach to managing health challenges allowed participants to maintain stability in their daily activities and academic responsibilities. Theme 5: Feeling of Missing Out Initial expectations of a lively university social life shifted due to the reality of managing their health condition. "Before joining university, I used to say that the minute I enter university I will party hard, go to clubs but when I reached here, I got a bit challenged as you know living with the disease. I was afraid I would cause a crisis to myself which would take me about a month or more to recover." (Student 2) Theme 6: Being Normal Despite the challenges that come with SCD, participants expressed a strong desire to engage fully in university life and participate in activities alongside their peers. "When I'm in school, I'm doing what every normal person is doing. I always tell myself that I may have sickle cell, but sickle cell doesn't have me. So when I'm in school, I am literally involved in everything." ( Student 15) “ If you live stress free and you avoid the triggers, you can just actually be.. totally normal like.. apart from if your eyes also become yellow, some people can know. but not everyone knows. They'll think you have yellow fever, and what. But you can actually just live a normal life. ” (Student 1) This determination to participate in school life, while managing their condition, underscores the resilience of these students. These findings illustrate the interaction between health challenges and academic life for university students living with SCD. The identified themes and sub-themes offer insights into how these students navigate their educational journeys. They emphasize the importance of support systems, self-management strategies, and the pursuit of normalcy despite the constraints of their condition. Discussion The lived experiences of university students with sickle cell disease (SCD) show the barriers, facilitators, and coping strategies that significantly affect their academic success and social integration. The findings of this study are distinctive in that they explore the lived experiences of university students with SCD across different academic levels in the context of university life which is a more independent educational environment during emerging adulthood.( 19 ) While prior research has examined the impact of the disease and the provider’s perspectives of transitioning adolescents and young adults with SCD,( 5 , 14 , 20 ) our study addresses the experiences of students in this transitional phase within a low-income country. These findings offer recommendations for universities to tailor support systems that better address the needs of students with SCD to facilitate academic and social success during this pivotal stage of their education. Barriers to Academic Success and Social Integration One of the most significant challenges we identified was the need for students with SCD to take breaks of absence from days to weeks and at severity, a "dead year" which is a temporary withdrawal from studies, due to severe health complications. These decisions, though necessary for health recovery, often lead to delays in academic progress and can contribute to feelings of frustration and discouragement. A participant described the onset of Osteonecrosis of the femoral head (ONFH) as a significant turning point in their academic journey. ONFH is a prevalent complication of SCD which occurs in 22% of patients.( 21 ) As the condition progressed further, the physical limitations became overwhelming, forcing the participant to drop out of university. The severity of ONFH necessitated surgical intervention, leading to a "dead year" where they could not continue their studies. The impact of taking a dead year is profound, as it not only disrupts the students' academic trajectory but also affects their sense of belonging and continuity with their peers. The necessity of taking these absences underscores the severity of SCD complications, such as frequent pain crises and hospitalizations, which can make it nearly impossible to maintain regular academic schedules. This interruption highlights the profound impact that serious health complications associated with sickle cell disease can have on educational attainment, requiring students to prioritize their health over academic progression. Participants highlighted that the stress related to exams and academic pressures often triggers painful crises. Many reported that the anxiety they experience during exams can sometimes lead to a painful episode, particularly a vaso-occlusive crisis (VOC). This observation aligns with existing research suggesting that mental stress can induce a VOC in individuals with SCD due to neural-mediated vasoconstriction.( 22 ) The link between psychological stress and physical health in SCD underscores the importance of addressing both the academic and mental health needs of these students. Implementing strategies to reduce stress, especially during exam periods, may help lower the frequency of VOCs and support better academic outcomes for students with SCD. Social Integration and Stigma After joining the university, students with SCD often experience a sense of "missing out" on social activities such as partying and dating. The physical limitations imposed by the disease, such as the need to avoid strenuous activities and late-night events may result in social isolation. Students described fear of triggering pain attacks and the potential need to disclose their sickle cell status often leads these students to withdraw from social interactions. This isolation is further compounded by physical limitations, such as the need to use crutches in cases of common SCD orthopedic complications such as ONFH, which not only hampers mobility but also restricts participation in physical activities. This finding is in line with prior work that explained that children and adults with SCD are at risk of disability which may lead to activity limitations and restricted social participation.( 23 ) Furthermore, the stigma associated with SCD was a recurrent theme, with some students experiencing negative attitudes and misconceptions from their peers. Previous research has documented similar experiences among individuals with SCD( 24 , 25 ) and chronic illnesses.( 26 ) Students recounted encounters with gossip and ridicule from peers, especially when their medication was discovered, which in turn led to feelings of depression and isolation. These experiences highlight the pervasive impact of stigma on both the mental health and social life of university students with SCD. These results were consistent with previous studies that have shown that stigma has psychological and social consequences that can result in concealment as a coping strategy.( 27 ) Visible signs of orthopedic complications of the disease, such as the use of crutches and limping in osteonecrosis of the femoral head, often attract unwanted attention and contribute to stigmatization. Facilitators to Academic Success and Social Integration Despite these challenges, several facilitators were identified that helped students manage their condition and achieve academic success. Self-awareness emerged as a crucial factor; students who understood their triggers, such as cold weather and stress, were better able to manage their disease and minimize attacks. Medication compliance also played a vital role, with students regularly using prescribed medications like folic acid and hydroxyurea to prevent crises. A supportive environment was another key facilitator. Some students with disabilities as a result of ONFH benefited from having a helper (a personal assistant provided by the university under the government scholarship scheme for students with disability), which significantly aided their mobility and allowed them to participate more fully in academic and social activities. Our study also found that seeking assistance from family and university health services, forming close relationships with understanding peers, and utilizing personal resilience helped the students to persevere through difficult times. Coping Mechanisms The study found that students with SCD employ various coping mechanisms to manage their condition while pursuing their education. Avoidance of known triggers was a common strategy among the students. Participants described avoiding triggers such as cold environments and managing stress levels. As a result, they were able to maintain their health and continue their studies with minimal disruptions. The findings suggest that disclosure can be a powerful coping mechanism for students with SCD. A student recounted a moment when a friend, unaware of their condition, made assumptions about what people with SCD should look like—skinny, with yellow eyes, and generally weak. When the student revealed that they had lived with SCD for 26 years without displaying these visible traits, it prompted a conversation that helped dispel common misconceptions. This honest exchange not only corrected the friend's misunderstandings but also motivated the student to start raising awareness more broadly. Through sharing their experience, students found that talking openly about SCD reduced stigma and encouraged others to ask questions which fostered a more supportive environment. Disclosure turns potential stigma into opportunities for education and advocacy. Establishing personalized routines based on self-awareness of individual triggers and needs plays a crucial role in helping students with SCD navigate the less predictable university environment. For instance, students described taking painkillers before exams to manage anxiety-induced pain episodes, along with carrying a scarf to examination halls to stay warm in situations where sweaters were not permitted. This approach not only mitigated potential disruptions to their academic participation and enhanced their overall well-being. Other studies have similarly highlighted the importance of self-management strategies and tailored routines in improving the quality of life for individuals with chronic conditions.( 28 ) Ensuring that students with SCD have the support to develop and maintain these routines could be key in fostering both their academic success and overall well-being in the university setting. Desired Interventions The students’ experiences point to the need for more comprehensive support systems at the university level. Creating awareness about SCD among the university community is crucial in fostering a more supportive environment for affected students. Awareness campaigns could be implemented through workshops, seminars, and social media initiatives, aimed at educating both faculty and students about the challenges faced by those with SCD. One suggested intervention is allowing boda-bodas (motorcycle taxis) to transport students directly to their destinations within the campus, reducing the physical strain of moving around. Establishing specific support groups for students with SCD would also provide a platform for sharing experiences and strategies for managing the condition. Additionally, the availability of free medications, such as hydroxyurea, would significantly alleviate the financial burden associated with managing SCD. These efforts would help reduce stigma and misconceptions, encourage empathy, and promote the development of tailored accommodations. Implications for University Policy Our study suggests that universities need to develop more comprehensive support systems for students with SCD. This includes not only academic accommodations, such as flexible deadlines and attendance policies, but also increased awareness among faculty and peers about the nature of SCD and its impact on students. Universities should consider implementing policies that allow for more seamless reintegration after a dead year, as well as offering counseling services to help students cope with the psychological impact of their health challenges. Addressing these issues could significantly improve the academic and social experiences of students with SCD, enabling them to achieve their educational goals without compromising their health. Limitations and Future Research This study is limited by the small sample size and the fact that participants were recruited from a single university. Future research should aim to include a larger and more diverse sample to capture a broader range of experiences. Additionally, longitudinal studies would be beneficial to track the long-term impact of SCD on academic progression and social integration, particularly in relation to the effects of taking a dead year and managing SCD complications over time. Conclusion In conclusion, this study highlights the significant challenges faced by university students with SCD, particularly in relation to academic interruptions and social integration due to health complications. Despite these challenges, the resilience and coping strategies exhibited by these students underscore their determination to succeed in their academic pursuits. Universities must recognize the unique needs of this population and implement policies that provide adequate support to ensure that students with SCD can thrive both academically and socially. Abbreviations SCD Sickle Cell Disease IPA Interpretative Phenomenological Analysis ONFH Osteonecrosis of the Femoral Head VOC Vaso-Occlusive Crisis CBC Complete Blood Count REC Research Ethics Committee SPH School of Public Health WHO World Health Organization Declarations The study received ethical approval from Makerere University School of Public Health Ethics committee (REC reference number SPH-2023-438). All participants provided written informed consent prior to enrollment in the study. Ethics approval and consent to participate The study received ethical approval from Makerere University School of Public Health Ethics committee (REC reference number SPH-2023-438). All participants provided written informed consent prior to enrollment in the study. Consent for publication Not applicable Availability of data and materials All data generated or analysed during this study are included in this published article and its supplementary information files. Competing interests The authors declare that they have no competing interests Funding Research reported in this publication was supported by the Fogarty International Center of the National Institutes of Health, U.S. Department of State’s Office of the U.S. Global AIDS Coordinator and Health Diplomacy (S/GAC), and President’s Emergency Plan for AIDS Relief (PEPFAR) under Award Number 1R25TW011213. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. Authors' contributions V.N. conceptualized, collected and analyzed the data, and wrote the manuscript. A.A. collected and analyzed the data, and wrote the manuscript. K.T.M. conceptualized, guided the research focus, data analysis, and manuscript review. A.N. guided the research focus, data analysis, and manuscript review. E.K. supervised the research process, contributed to the methodology development, contributed to data analysis, and reviewed the manuscript. All authors read and approved the final manuscript for submission. Acknowledgements We sincerely thank the participants for sharing their lived experiences and contributing to this study. References Piel FB, Patil AP, Howes RE, Nyangiri OA, Gething PW, Dewi M, et al. Global epidemiology of sickle haemoglobin in neonates: a contemporary geostatistical model-based map and population estimates. The Lancet. 2013;381(9861):142–51. Piel FB, Hay SI, Gupta S, Weatherall DJ, Williams TN. Global Burden of Sickle Cell Anaemia in Children under Five, 2010–2050: Modelling Based on Demographics, Excess Mortality, and Interventions. Osrin D, editor. PLoS Med. 2013 Jul 16;10(7):e1001484. 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Fuggle P, Shand PA, Gill LJ, Davies SC. Pain, quality of life, and coping in sickle cell disease. Arch Dis Child. 1996 Sep 1;75(3):199–203. Olatunya OS, Oke OJ, Kuti BP, Ajayi IA, Olajuyin O, Omotosho-Olagoke O, et al. Factors Influencing the Academic Performance of Children with Sickle Cell Anaemia in Ekiti, South West Nigeria. J Trop Pediatr. 2018 Feb 1;64(1):67–74. Nettles AL. Scholastic Performance of Children with Sickle Cell Disease. J Health Soc Policy. 1994 Oct 31;5(3-4):123–40. Alhazmi A, Hakami K, Abusageah F, Jaawna E, Khawaji M, Alhazmi E, et al. The Impact of Sickle Cell Disease on Academic Performance among Affected Students. Children (Basel). 2021 Dec 27;9(1):15. Idowu M, Badejoko S, Rowan P, Juneja HS. Academic Achievement for Adults with Sickle Cell Disease Compared with Healthy Siblings. Blood. 2014 Dec 6;124(21):4936–4936. Schwartz LA, Radcliffe J, Barakat LP. Associates of school absenteeism in adolescents with sickle cell disease. Pediatr Blood Cancer. 2009;52(1):92–6. Thompson M, Pawson C, Evans B. Navigating entry into higher education: the transition to independent learning and living. J Furth High Educ. 2021 Nov 26;45(10):1398–410. Agee J. Developing qualitative research questions: a reflective process. Int J Qual Stud Educ. 2009;22(4):431–47. Tindall L. J.A. Smith, P. Flower and M. Larkin (2009), Interpretative Phenomenological Analysis: Theory, Method and Research : London: Sage. Qual Res Psychol. 2009 Nov 25;6(4):346–7. Tuffour I. A Critical Overview of Interpretative Phenomenological Analysis: A Contemporary Qualitative Research Approach. J Healthc Commun [Internet]. 2017 [cited 2024 Oct 22];02(04). Available from: http://healthcare-communications.imedpub.com/a-critical-overview-of-interpretative-phenomenological-analysis-a-contemporary-qualitative-research-approach.php?aid=20787 Chen H, Cohen P, Kasen S, Gordan K, Dufur R, Smailes E. Construction and validation of a quality of life instrument for young adults. Qual Life Res. 2004;13(4):747–59. Stollon NB, Paine CW, Lucas MS, Brumley LD, Poole ES, Peyton T, et al. Transitioning Adolescents and Young Adults With Sickle Cell Disease From Pediatric to Adult Health Care: Provider Perspectives. J Pediatr Hematol Oncol. 2015 Nov;37(8):577–83. Adesina OO, Brunson AM, Gotlib JR, Keegan T, Wun T. Osteonecrosis of the Femoral Head in Sickle Cell Disease: Prevalence, Comorbidities and Surgical Outcomes in California. Blood. 2016 Dec 2;128(22):2489–2489. Shah P, Khaleel M, Thuptimdang W, Sunwoo J, Veluswamy S, Chalacheva P, et al. Mental stress causes vasoconstriction in subjects with sickle cell disease and in normal controls. Haematologica. 2020;105(1):83–90. Swanson ME, Grosse SD, Kulkarni R. Disability among individuals with sickle cell disease: literature review from a public health perspective. Am J Prev Med. 2011 Dec;41(6 Suppl 4):S390–7. Ahebwe S, Rujumba J, Green NSS, Idro R. Lived experiences and coping strategies of adults with sickle cell disease in Uganda: Implications for improving health and well-being. Blood. 2024 Nov 5;144(Supplement 1):7675–7675. (PDF) Lived Experiences of Adults with Sickle Cell Disease. Available from: https://www.researchgate.net/publication/366755607_Lived_Experiences_of_Adults_with_Sickle_Cell_Disease_A_Qualitative_Study_Dar_es_Salaam_Tanzania Earnshaw VA, Quinn DM, Park CL. Anticipated stigma and quality of life among people living with chronic illnesses. Chronic Illn. 2012;8(2):79–88. Akbari H, Mohammadi M, Hosseini A. Disease-Related Stigma, Stigmatizers, Causes, and Consequences: A Systematic Review. Iran J Public Health [Internet]. 2023 Oct 14 [cited 2024 Aug 31]; Available from: https://publish.kne-publishing.com/index.php/ijph/article/view/13842 Grady PA, Gough LL. Self-Management: A Comprehensive Approach to Management of Chronic Conditions. Am J Public Health. 2014;104(8):e25–31. Additional Declarations No competing interests reported. Supplementary Files TrueInterviewGuidefortheStudy.pdf Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-7300043","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":498615921,"identity":"c9f9aee2-0917-4757-823e-574953e0b9ad","order_by":0,"name":"Vivian Nabisere","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAAzUlEQVRIiWNgGAWjYDACdhBhIMHDD6IfAJmEtTCDiAIbOckGBsaGBOK1fEgzNjhArBaDw8zPHnwwOJy4+XiP+YOEChtjBvbDRzfg18JmbjgDqGXbmTOGDQln0swYeNLSbuDTItnMYCbNA9JyI8ewIbHtsA2DBI8ZAS3s36T/gBw2g1gt/Mw8ZtIMBkDvS0C0mBGjpUyyx8BGTuLMscIZQL8YsxHyCxt7+zaJH3+AUdnevOHDhwobw372w8fwasFiCGnKR8EoGAWjYBRgAwA1hUcfPJx3ygAAAABJRU5ErkJggg==","orcid":"","institution":"Makerere University","correspondingAuthor":true,"prefix":"","firstName":"Vivian","middleName":"","lastName":"Nabisere","suffix":""},{"id":498615922,"identity":"54e7af13-ff4f-4a39-b9de-f3e8ba1ecbc1","order_by":1,"name":"Active Atukunda","email":"","orcid":"","institution":"Makerere University","correspondingAuthor":false,"prefix":"","firstName":"Active","middleName":"","lastName":"Atukunda","suffix":""},{"id":498615923,"identity":"95e1a22d-4ee9-4d7b-95c9-6a19dd03aa23","order_by":2,"name":"Kevina Tracy Mbabazi","email":"","orcid":"","institution":"Makerere University","correspondingAuthor":false,"prefix":"","firstName":"Kevina","middleName":"Tracy","lastName":"Mbabazi","suffix":""},{"id":498615931,"identity":"6ca3269f-2d19-4113-90c3-88cb50ac0625","order_by":3,"name":"Angella Namujuzi","email":"","orcid":"","institution":"Kabale University","correspondingAuthor":false,"prefix":"","firstName":"Angella","middleName":"","lastName":"Namujuzi","suffix":""},{"id":498615934,"identity":"719e6281-06ad-4325-8121-4bc0c03bffff","order_by":4,"name":"Eric Katagirya","email":"","orcid":"","institution":"Makerere University","correspondingAuthor":false,"prefix":"","firstName":"Eric","middleName":"","lastName":"Katagirya","suffix":""}],"badges":[],"createdAt":"2025-08-05 11:23:37","currentVersionCode":1,"declarations":{"humanSubjects":false,"vertebrateSubjects":false,"conflictsOfInterestStatement":false,"humanSubjectEthicalGuidelines":false,"humanSubjectConsent":false,"humanSubjectClinicalTrial":false,"humanSubjectCaseReport":false,"vertebrateSubjectEthicalGuidelines":false},"doi":"10.21203/rs.3.rs-7300043/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-7300043/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":91792069,"identity":"cffba950-bc58-47cc-a9ee-fd576e644c70","added_by":"auto","created_at":"2025-09-21 13:01:54","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":692906,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-7300043/v1/5a1c475a-fe8a-4f2c-ac3f-6055461b2eb2.pdf"},{"id":89877674,"identity":"ac502c7d-ec3d-495b-9206-63d621db2620","added_by":"auto","created_at":"2025-08-26 04:49:21","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"supplement","size":63298,"visible":true,"origin":"","legend":"","description":"","filename":"TrueInterviewGuidefortheStudy.pdf","url":"https://assets-eu.researchsquare.com/files/rs-7300043/v1/661288a7494c82485807381a.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"“I had to take a ‘dead year’ to undergo surgeries,” the Lived Experiences of University Students with Sickle Cell Disease, an interpretative phenomenological analysis","fulltext":[{"header":"Contributions to literature","content":"\u003cul\u003e\n \u003cli\u003eThere is limited evidence on the academic and social experiences of university students living with sickle cell disease, especially in low resource settings.\u003c/li\u003e\n \u003cli\u003eStigma, limited support systems, and barriers to healthcare access contribute to reduced academic participation and social integration among these students.\u003c/li\u003e\n \u003cli\u003eInclusive university policies and targeted health services are needed to improve quality of life and educational outcomes for young people with sickle cell disease.\u003c/li\u003e\n\u003c/ul\u003e"},{"header":"Background","content":"\u003cp\u003eSickle cell disease describes a group of inherited hemoglobin disorders characterized by a predominance of abnormal sickle hemoglobin in erythrocytes. The most common and severe form of sickle cell disease is sickle cell anaemia, which is caused by the homozygous inheritance of sickle haemoglobin from both parents.(\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e)\u003c/p\u003e\u003cp\u003eThe worldwide estimate for neonates born with sickle cell disease each year is 400000, including 300,000 with sickle cell anaemia.(\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e) The greatest burden is seen in Sub-Saharan Africa, which accounts for more than 75 percent of all sickle cell disease cases, with this proportion expected to rise by 2050.(\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e) In Africa, sickle cell disease contributes significantly to mortality in children under the age of five,(\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e) limiting progress toward the United Nations Sustainable Development Goal 3, Good Health and Well-Being, which includes reducing childhood mortality(\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e). Uganda has the fifth highest sickle cell burden in Africa, with 13.3% of children having sickle cell trait and 5,000\u0026ndash;20,000 babies born with SCD every year, of which 80% die before reaching 5 years of age(\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). WHO has also challenged countries in Sub-Saharan Africa to develop national strategies for sickle cell disease that address specific goals, targets, and objectives. Despite this, ministries of health face numerous challenges in developing meaningful interventions, including a lack of accurate data on disease burden and distribution within their respective countries.(\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e)\u003c/p\u003e\u003cp\u003eThe main clinical manifestation of SCD is the \"acute painful crisis,\" which often requires hospitalization.(\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e) \"Sickle cell crisis\" is a term that describes several acute conditions such as the vaso-occlusive crisis (acute painful crisis), aplastic crisis, splenic sequestration crisis, hyperhemolytic crisis, hepatic crisis, dactylitis, and acute chest syndrome. Other acute complications include pneumonia, meningitis, sepsis and osteomyelitis, stroke, avascular necrosis, priapism, and venous thromboembolism.(\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e) Fuggle et. al., examined the severity and frequency of sickle cell related pain. They found that pain usually occurs once every 14 days, and pain ratings revealed that it was significantly more painful in children with SCD than it was for controls.(\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e) High rates of disruption are brought on when one is unable to engage in hobbies, play sports, or visit with friends.(\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e) A study done in Nigeria among students with sickle cell disease informed that absence from school of greater than one week was associated with poor performance, and children with sickle cell anemia had higher rates of school absence.(\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e) Academic absenteeism may hinder adolescents with SCD from receiving appropriate specialized educational interventions and may result in lower academic attainment.(\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e) According to a study conducted in Saudi Arabia on university, middle school, and high school children with SCD, 43 percent of the participants missed more than 14 days of school annually, compared to just 11 percent of the healthy participants, during the 2019 academic year.(\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e) Another study found that 68% of patients with SCD reported missing at least one important exam each year, and 85% of adult SCD patients reported missing school on average once per week.(\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e) Schwartz and others hypothesized the associates of school absenteeism with sickle cell disease.(\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e) Their study informs us that demographics, health related and psychosocial variables should be captured in subsequent studies. They found out that health-related and psychosocial variables were related to absenteeism, but demographic variables were not. However, their study did not include students with SCD at tertiary institutions.\u003c/p\u003e\u003cp\u003eIn transitioning to university life, students find themselves in a new environment, with demanding new domestic responsibilities and engaging in academic tasks that are perceived as different and are closely related to future success and dealing with their social life.(\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e) The findings of this study shed light on the multifaceted challenges these students face and the tailored interventions to support their well-being and better quality of life.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003eThis study aimed to explore the lived experiences of university students with sickle cell disease at Makerere University. A qualitative cross sectional study design was employed. In-depth interviews were done with adult university students living with SCD to explore their experiences within the university setting.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eParticipant Recruitment\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003ePurposive sampling was used to recruit participants for the study. Eligibility criteria included being 18 years or older, having a self-reported diagnosis of SCD, and being an undergraduate student at Makerere University. Those with SCD and another non-SCD related chronic disease were excluded. To increase awareness and reach potential participants, flyers were distributed at adult sickle cell clinics, and advertisements were posted on social media platforms. Additionally, sickle cell organizations were contacted to help promote the study and encourage participation.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eData Collection\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eInterviews were conducted between 20th August, 2023 and 30th March, 2024, with each session lasting approximately 90 minutes. Two female researchers, V.N. and A.A, who were medical students, conducted the interviews with each participant separately. The qualitative data was gathered using an in-depth, semi-structured interview guide that was grounded in the literature and was pilot tested. The development of the interview schedule was a reflective process, considering the sensitive nature of the questions and their potential impact on participants' lives.(\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e) Probes were used throughout the interviews to enrich responses, particularly in instances where participants struggled to understand the questions or elaborate on their answers. The questions were open-ended, designed not to elicit right or wrong answers, but rather to encourage a descriptive and reflective discussion. Data saturation was reached at participant 15.\u003c/p\u003e\u003cp\u003eTo ensure accuracy and prevent data loss or recall bias, the interviews were audio-recorded and notes were taken. This allowed for capturing the exact responses of participants, including the nuances in the researchers' reactions. The recordings also facilitated a more thorough understanding of the responses by allowing for pauses and playback as needed. All interviews were transcribed verbatim for detailed analysis.\u003c/p\u003e\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e\u003ch2\u003eData Analysis\u003c/h2\u003e\u003cp\u003eThe transcripts were thoroughly cleaned, followed by an iterative process of reading and re-reading to develop codes and themes. These themes were then discussed and refined during team meetings to ensure a comprehensive understanding of the data (V.N, A.N, K.T,M and A.A).\u003c/p\u003e\u003cp\u003eWe analyzed data thematically using Interpretative Phenomenological Analysis (IPA). This approach is ideal for small, homogeneous samples where participants are purposely selected for their shared experience of the phenomenon.(\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e) Each participant provided an in-depth, reflective narrative of their experiences from a personal perspective. We used a two-stage interpretation process known as \u0026lsquo;double hermeneutics,\u0026rsquo; where participants first interpret their own experiences, and the researcher then interprets these accounts to gain a deeper understanding of the participants' lived experiences.(\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e)\u003c/p\u003e\u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003e\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eGeneral characteristics\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eA total of 15 individuals participated in the study. The average age of participants was 23 years (range 19\u0026ndash;26), and the majority were male, comprising 60% (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e) of the sample. The general characteristics of participants, including age, year of study, sex, and field of study, are summarized in Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e.\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eParticipant characteristics\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"5\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePatient Number\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eField of study\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u003cp\u003eAGE\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c4\"\u003e\u003cp\u003eYEAR OF STUDY\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c5\"\u003e\u003cp\u003eSEX\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eStudent 1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eComputer Science and Information Technology\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e19\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e\u003cp\u003e1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eM\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eStudent 2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eVeterinary Medicine and Animal Sciences\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e20\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e\u003cp\u003e1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eM\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eStudent 3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eVeterinary Medicine and Animal Sciences\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e24\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e\u003cp\u003e4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eF\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eStudent 4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eHumanities and Social Sciences\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e24\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eF\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eStudent 5\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eNatural Sciences\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e26\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e\u003cp\u003e4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eF\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eStudent 6\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eHealth Sciences\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e24\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eF\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eStudent 7\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eHealth Sciences\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e23\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e\u003cp\u003e4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eM\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eStudent 8\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eHealth Sciences\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e22\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eF\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eStudent 9\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eLaw\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e22\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eM\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eStudent 10\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eEducation\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e24\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eF\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eStudent 11\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eHealth Sciences\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e25\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e\u003cp\u003e4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eM\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eStudent 12\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eNatural Sciences\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e26\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eM\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eStudent 13\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eEngineering and Technology\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e24\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eM\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eStudent 14\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eVeterinary Medicine and Animal Sciences\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e23\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eM\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eStudent 15\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eNatural Sciences\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e24\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eM\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eThis study explored the lived experiences of university students living with Sickle Cell Disease (SCD) using Interpretative Phenomenological Analysis (IPA). The analysis revealed several overarching themes and sub-themes that reflect the complexities of balancing social and academic life and health challenges.\u003c/p\u003e\u003cp\u003eOverview of the themes.\u003c/p\u003e\u003cp\u003eSix themes were identified as being central to the experiences of university students living with SCD\u003c/p\u003e\n\u003ch3\u003eTheme 1: Academic Disruptions\u003c/h3\u003e\n\u003cp\u003eSubtheme 1: Educational Setbacks\u003c/p\u003e\u003cp\u003eStudents experienced significant loss of time in their academic progress due to SCD-related health crises.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\"I missed exams in my first year and lost a full year because of a crisis. I had to redo everything.\"\u003c/em\u003e (Student 9)\u003c/p\u003e\u003cp\u003e\u003cem\u003e\"When I got Avascular Necrosis, it got to stage three, and I had to drop out of school because I couldn't do anything. I had to take a \u0026ldquo;dead year\u0026rdquo; to undergo surgeries.\"\u003c/em\u003e (Student 7)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eSubtheme 2: SCD Complications\u003c/p\u003e\u003cp\u003eSeveral students recounted how complications from SCD led to delays and prolonged hospitalizations, further disrupting their studies.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;Only with the difficulty caused by the disease, like having to walk long distances from my hall of residence to the college, it all becomes tough for me. Especially with my hip issue.\u0026rdquo;\u003c/em\u003e (Student 2)\u003c/p\u003e\u003cp\u003e\u0026ldquo;\u003cem\u003eSometimes the pain is too much and I can't do much. I just have to forgo class. [...] If I get sick within the semester, I can miss like 1\u0026ndash;2 weeks of lectures.\u0026rdquo;\u003c/em\u003e (Student 4)\u003c/p\u003e\u003cp\u003e\u003cem\u003e\"There is a semester where I had bone pain all day and was dizzy. I was hospitalized and had gallstones and leg ulcers.\"\u003c/em\u003e (Student 11)\u003c/p\u003e\u003cp\u003e\u003cem\u003e\"This was last month, and it was because I had a severe thrombotic crisis that rendered me unable to walk, hence not being able to attend lectures for two weeks.\u003c/em\u003e\" (Student 12)\u003c/p\u003e\u003cp\u003e\u003cem\u003e\"It is especially challenging for me in my menstrual periods. I often have crises with hospital admissions during such days. During exam periods, I sometimes miss tests and lectures as a result. It is especially difficult while at school.\"\u003c/em\u003e (Student 6)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eThese complications resulted in significant academic setbacks, with participants missing crucial lectures and exams.\u003c/p\u003e\n\u003ch3\u003eTheme 2: Experience of Stigmatization\u003c/h3\u003e\n\u003cp\u003eSubtheme 3: Stigma and Its Emotional Impact\u003c/p\u003e\u003cp\u003eParticipants described how stigmatization by peers added to the emotional burden of living with SCD.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\"There was a day I came from class, and on returning to the hostel, I found a group of a few girls in the corridor holding my medication and talking about me. They were saying things like, 'You mean she also has sickle cell disease?' and they were busy laughing. It was so stigmatizing and depressing, especially since some of them were my friends and even my roommate.\"\u003c/em\u003e (Student 3)\u003c/p\u003e\u003cp\u003eThis experience highlights the deep emotional impact of stigma, especially when it comes from people who are expected to be supportive.\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;Let's say if there was a possibility whereby I didn't have the crutches and I was just a normal sickle cell person, people would not even know. [...] But with the crutch, obviously everyone wonders how a young boy can be walking with a crutch. So everyone can look at the crutch and look at you, but of course, I just.. I just ignore it.\u0026ldquo;\u003c/em\u003e (Student 1)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eSubtheme 4: Empowerment Through Disclosure and Advocacy\u003c/p\u003e\u003cp\u003eIn response to such stigmatization, some participants chose to openly disclose their condition, which led to positive outcomes.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\"To deal with the stigma, I decided to tell them that I had SCD. Everyone got to know, and I even started a campaign where all the warriors felt free to unveil their status. This helped us live freely with the rest of the students in the school.\"\u003c/em\u003e (Student 3)\u003c/p\u003e\u003cp\u003e\u0026ldquo;\u003cem\u003e[\u0026hellip;] I told her I've lived with sickle cell for 26 years. And you know, everyday I take tabs, but you don't ask. But I know you go out and talk about it. So today I'm telling it to you. Not everybody with sickle cell disease has yellow eyes, not all of them, ask me. Some people are healthy, they're doing well because you know, they are following procedures. [\u0026hellip;] I started talking to my friends, and I started the awareness campaign.\"\u003c/em\u003e (Student 5)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eThis proactive approach not only mitigated the effects of stigma but also fostered a sense of community and support among students with SCD.\u003c/p\u003e\n\u003ch3\u003eTheme 3: Support Systems\u003c/h3\u003e\n\u003cp\u003eSubtheme 5: Family Support\u003c/p\u003e\u003cp\u003eThe unwavering support from family members emerged as a vital resource for students coping with SCD.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\"I get all the support from my family members. My family has really been there for me; I'm so proud of them.\"\u003c/em\u003e (Student 9)\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;For psychological support my mum has played a big role because she has supported me in all possible ways, and has been there for me.\u0026rdquo;\u003c/em\u003e (Student 2)\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;So any time in the holidays when I get an attack, [...] they help carry me to the car, because then I am in a lot of pain, I can't even move. They carry me, they be with me in the hospital, they give me company until I am actually discharged.\u0026rdquo;\u003c/em\u003e (Student 1 on support during a painful crisis)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eThe reliability of family support provided students with a crucial safety net, particularly during health crises.\u003c/p\u003e\u003cp\u003eSubtheme 6: Friendships and Social Support\u003c/p\u003e\u003cp\u003eFriendships also played a critical role in helping students manage the challenges of SCD while away from home.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;Specifically my classmates have been good to me, and I know they\u0026rsquo;ll continue to be good. [...] My discussion group members have as well been really good to me, they adjust their schedules sometimes to accommodate me, and that\u0026rsquo;s how I get support.\u0026rdquo;\u003c/em\u003e (Student 2)\u003c/p\u003e\u003cp\u003e\u003cem\u003e\"For me, it's very good to make friends in our area because you know, anything can happen when you're out of home. So you need to involve your friends so that in case anything happens, they know what to do and have one or two contacts of your family members.\"\u003c/em\u003e (Student 10)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eThis sense of preparedness and the involvement of friends provided an additional layer of security for the students.\u003c/p\u003e\u003cp\u003eSubtheme 6: Need for Enhanced Health and Support Services\u003c/p\u003e\u003cp\u003eStudents emphasized the need for improved and accessible health support services, including free sickle cell testing, genetic counseling, and medication specific to their condition. They also advocated for regular medical checks, such as routine CBC tests, and practical accommodations like ground-floor rooms in residence halls to ease mobility.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;The university can make arrangements and put up a facility at the university hospital, sensitize the warriors to get their medication from there and for the simple tests like CBC, since we need to have them routinely. They could put in place measures to address some challenges: say in case you are anemic, they could give you at least one unit of blood. For the halls of residence, I am lucky enough to be on the ground floor. But next year we must apply for change of rooms. If they could reserve a few ground floor rooms for students with sickle cells, in order to avoid climbing up and down the stairs.\u0026rdquo;\u003c/em\u003e (Student 2)\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;Because sickle cell disease can affect many sicklers\u0026rsquo; mobility, so they can put, like a way, whereby if I am coming from outside on a boda boda, I don't have to walk.\u0026rdquo;\u003c/em\u003e (Student 1)\u003c/p\u003e\u003cp\u003eA \u003cem\u003eboda boda\u003c/em\u003e is a bicycle or motorcycle taxi used in East Africa to transport passengers or goods.\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;Like to have awareness campaigns, and try and advise people to test and to donate blood. Free testing and counseling services should be provided. Then they should also engage in community outreaches for those people living with sickle cell. So if I go missing at school, somebody from campus is able to locate me and you know, try and talk to me and see how I'm doing. Something like that.\u0026rdquo;\u003c/em\u003e (Student 3)\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;They should try and see how warriors also get free medication. Because I know we have a hospital here, right? But it is not equipped with all the medicine that warriors need.\u0026rdquo;\u003c/em\u003e (Student 6)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eSubtheme 7: Reliance on the Students\u0026rsquo; with Disability Scheme\u003c/p\u003e\u003cp\u003eStudents with disability from SCD complications such as avascular necrosis benefit from the university\u0026rsquo;s existing disability support system, which provides them with personal helpers for tasks.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;I have a helper, because I'm on the disability scheme. So I have a helper who can sometimes help me carry my bag. When I want to send someone to those long distances, I can send that person. Sometimes if he's with me, I can tell him to help me carry the seat to my class or where I'm going to sit.\u0026rdquo;\u003c/em\u003e (Student 1)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cdiv id=\"Sec8\" class=\"Section2\"\u003e\u003ch2\u003eTheme 4: Effective Self-Management and Coping Strategies\u003c/h2\u003e\u003cp\u003eSubtheme 8: Managing Academic Stress and Health Challenges\u003c/p\u003e\u003cp\u003eParticipants developed various strategies to manage the dual pressures of academics and health. They emphasize self-care routines, such as avoiding stress, taking medication consistently, eating adequately, and preparing for anxiety-inducing situations like exams by using painkillers and staying warm.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;As a student, I try to avoid pressure because you know, there is pressure that comes from campus. So I try to avoid that pressure. I also try to stay away from stress factors. Then I tried to eat once in a while. Yes. And take fresh juice, [...] Then they make sure I take my meds every day on time, as I try to communicate with my doctors in case there is something that I'm not seeing right, happening.\u0026rdquo;\u003c/em\u003e (Student 9)\u003c/p\u003e\u003cp\u003e\u003cem\u003e\"Every morning before I go for practicals or if I had an exam, I would first take a painkiller because I know there's that anxiety. I always have a scarf\u0026mdash;some examination halls don't allow sweaters, but at least they accept a scarf. So I made sure I had a scarf around my neck, took my painkillers, and tried to take water.\"\u003c/em\u003e (Student 14)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eThis routine helped the student manage anxiety and prevent health crises during stressful academic periods.\u003c/p\u003e\u003cp\u003eSubtheme 9: Stability Through Routine\u003c/p\u003e\u003cp\u003eEstablishing and adhering to a consistent routine was another coping mechanism.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\"What helps is taking pain medication three days before and three days after my period(menstrual periods). When I stick to this routine, everything is really okay.\"\u003c/em\u003e (Student 6)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eThis methodical approach to managing health challenges allowed participants to maintain stability in their daily activities and academic responsibilities.\u003c/p\u003e\u003c/div\u003e\n\u003ch3\u003eTheme 5: Feeling of Missing Out\u003c/h3\u003e\n\u003cp\u003eInitial expectations of a lively university social life shifted due to the reality of managing their health condition.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\"Before joining university, I used to say that the minute I enter university I will party hard, go to clubs but when I reached here, I got a bit challenged as you know living with the disease. I was afraid I would cause a crisis to myself which would take me about a month or more to recover.\"\u003c/em\u003e (Student 2)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\n\u003ch3\u003eTheme 6: Being Normal\u003c/h3\u003e\n\u003cp\u003eDespite the challenges that come with SCD, participants expressed a strong desire to engage fully in university life and participate in activities alongside their peers.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\"When I'm in school, I'm doing what every normal person is doing. I always tell myself that I may have sickle cell, but sickle cell doesn't have me. So when I'm in school, I am literally involved in everything.\" (\u003c/em\u003eStudent 15)\u003c/p\u003e\u003cp\u003e\u0026ldquo;\u003cem\u003eIf you live stress free and you avoid the triggers, you can just actually be.. totally normal like.. apart from if your eyes also become yellow, some people can know. but not everyone knows. They'll think you have yellow fever, and what. But you can actually just live a normal life.\u003c/em\u003e\u0026rdquo; (Student 1)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eThis determination to participate in school life, while managing their condition, underscores the resilience of these students.\u003c/p\u003e\u003cp\u003eThese findings illustrate the interaction between health challenges and academic life for university students living with SCD. The identified themes and sub-themes offer insights into how these students navigate their educational journeys. They emphasize the importance of support systems, self-management strategies, and the pursuit of normalcy despite the constraints of their condition.\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eThe lived experiences of university students with sickle cell disease (SCD) show the barriers, facilitators, and coping strategies that significantly affect their academic success and social integration.\u003c/p\u003e\u003cp\u003eThe findings of this study are distinctive in that they explore the lived experiences of university students with SCD across different academic levels in the context of university life which is a more independent educational environment during emerging adulthood.(\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e) While prior research has examined the impact of the disease and the provider\u0026rsquo;s perspectives of transitioning adolescents and young adults with SCD,(\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e, \u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e) our study addresses the experiences of students in this transitional phase within a low-income country. These findings offer recommendations for universities to tailor support systems that better address the needs of students with SCD to facilitate academic and social success during this pivotal stage of their education.\u003c/p\u003e\u003cp\u003eBarriers to Academic Success and Social Integration\u003c/p\u003e\u003cp\u003eOne of the most significant challenges we identified was the need for students with SCD to take breaks of absence from days to weeks and at severity, a \"dead year\" which is a temporary withdrawal from studies, due to severe health complications. These decisions, though necessary for health recovery, often lead to delays in academic progress and can contribute to feelings of frustration and discouragement. A participant described the onset of Osteonecrosis of the femoral head (ONFH) as a significant turning point in their academic journey. ONFH is a prevalent complication of SCD which occurs in 22% of patients.(\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e) As the condition progressed further, the physical limitations became overwhelming, forcing the participant to drop out of university. The severity of ONFH necessitated surgical intervention, leading to a \"dead year\" where they could not continue their studies. The impact of taking a dead year is profound, as it not only disrupts the students' academic trajectory but also affects their sense of belonging and continuity with their peers. The necessity of taking these absences underscores the severity of SCD complications, such as frequent pain crises and hospitalizations, which can make it nearly impossible to maintain regular academic schedules. This interruption highlights the profound impact that serious health complications associated with sickle cell disease can have on educational attainment, requiring students to prioritize their health over academic progression.\u003c/p\u003e\u003cp\u003eParticipants highlighted that the stress related to exams and academic pressures often triggers painful crises. Many reported that the anxiety they experience during exams can sometimes lead to a painful episode, particularly a vaso-occlusive crisis (VOC). This observation aligns with existing research suggesting that mental stress can induce a VOC in individuals with SCD due to neural-mediated vasoconstriction.(\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e) The link between psychological stress and physical health in SCD underscores the importance of addressing both the academic and mental health needs of these students. Implementing strategies to reduce stress, especially during exam periods, may help lower the frequency of VOCs and support better academic outcomes for students with SCD.\u003c/p\u003e\u003cp\u003eSocial Integration and Stigma\u003c/p\u003e\u003cp\u003eAfter joining the university, students with SCD often experience a sense of \"missing out\" on social activities such as partying and dating. The physical limitations imposed by the disease, such as the need to avoid strenuous activities and late-night events may result in social isolation. Students described fear of triggering pain attacks and the potential need to disclose their sickle cell status often leads these students to withdraw from social interactions. This isolation is further compounded by physical limitations, such as the need to use crutches in cases of common SCD orthopedic complications such as ONFH, which not only hampers mobility but also restricts participation in physical activities. This finding is in line with prior work that explained that children and adults with SCD are at risk of disability which may lead to activity limitations and restricted social participation.(\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e)\u003c/p\u003e\u003cp\u003eFurthermore, the stigma associated with SCD was a recurrent theme, with some students experiencing negative attitudes and misconceptions from their peers. Previous research has documented similar experiences among individuals with SCD(\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e, \u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e) and chronic illnesses.(\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e) Students recounted encounters with gossip and ridicule from peers, especially when their medication was discovered, which in turn led to feelings of depression and isolation. These experiences highlight the pervasive impact of stigma on both the mental health and social life of university students with SCD. These results were consistent with previous studies that have shown that stigma has psychological and social consequences that can result in concealment as a coping strategy.(\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e) Visible signs of orthopedic complications of the disease, such as the use of crutches and limping in osteonecrosis of the femoral head, often attract unwanted attention and contribute to stigmatization.\u003c/p\u003e\u003cp\u003eFacilitators to Academic Success and Social Integration\u003c/p\u003e\u003cp\u003eDespite these challenges, several facilitators were identified that helped students manage their condition and achieve academic success. Self-awareness emerged as a crucial factor; students who understood their triggers, such as cold weather and stress, were better able to manage their disease and minimize attacks. Medication compliance also played a vital role, with students regularly using prescribed medications like folic acid and hydroxyurea to prevent crises.\u003c/p\u003e\u003cp\u003eA supportive environment was another key facilitator. Some students with disabilities as a result of ONFH benefited from having a helper (a personal assistant provided by the university under the government scholarship scheme for students with disability), which significantly aided their mobility and allowed them to participate more fully in academic and social activities. Our study also found that seeking assistance from family and university health services, forming close relationships with understanding peers, and utilizing personal resilience helped the students to persevere through difficult times.\u003c/p\u003e\u003cp\u003eCoping Mechanisms\u003c/p\u003e\u003cp\u003eThe study found that students with SCD employ various coping mechanisms to manage their condition while pursuing their education. Avoidance of known triggers was a common strategy among the students. Participants described avoiding triggers such as cold environments and managing stress levels. As a result, they were able to maintain their health and continue their studies with minimal disruptions.\u003c/p\u003e\u003cp\u003eThe findings suggest that disclosure can be a powerful coping mechanism for students with SCD. A student recounted a moment when a friend, unaware of their condition, made assumptions about what people with SCD should look like\u0026mdash;skinny, with yellow eyes, and generally weak. When the student revealed that they had lived with SCD for 26 years without displaying these visible traits, it prompted a conversation that helped dispel common misconceptions. This honest exchange not only corrected the friend's misunderstandings but also motivated the student to start raising awareness more broadly. Through sharing their experience, students found that talking openly about SCD reduced stigma and encouraged others to ask questions which fostered a more supportive environment. Disclosure turns potential stigma into opportunities for education and advocacy.\u003c/p\u003e\u003cp\u003eEstablishing personalized routines based on self-awareness of individual triggers and needs plays a crucial role in helping students with SCD navigate the less predictable university environment. For instance, students described taking painkillers before exams to manage anxiety-induced pain episodes, along with carrying a scarf to examination halls to stay warm in situations where sweaters were not permitted. This approach not only mitigated potential disruptions to their academic participation and enhanced their overall well-being. Other studies have similarly highlighted the importance of self-management strategies and tailored routines in improving the quality of life for individuals with chronic conditions.(\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e) Ensuring that students with SCD have the support to develop and maintain these routines could be key in fostering both their academic success and overall well-being in the university setting.\u003c/p\u003e\u003cdiv id=\"Sec12\" class=\"Section2\"\u003e\u003ch2\u003eDesired Interventions\u003c/h2\u003e\u003cp\u003eThe students\u0026rsquo; experiences point to the need for more comprehensive support systems at the university level. Creating awareness about SCD among the university community is crucial in fostering a more supportive environment for affected students. Awareness campaigns could be implemented through workshops, seminars, and social media initiatives, aimed at educating both faculty and students about the challenges faced by those with SCD. One suggested intervention is allowing boda-bodas (motorcycle taxis) to transport students directly to their destinations within the campus, reducing the physical strain of moving around. Establishing specific support groups for students with SCD would also provide a platform for sharing experiences and strategies for managing the condition. Additionally, the availability of free medications, such as hydroxyurea, would significantly alleviate the financial burden associated with managing SCD. These efforts would help reduce stigma and misconceptions, encourage empathy, and promote the development of tailored accommodations.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec13\" class=\"Section2\"\u003e\u003ch2\u003eImplications for University Policy\u003c/h2\u003e\u003cp\u003eOur study suggests that universities need to develop more comprehensive support systems for students with SCD. This includes not only academic accommodations, such as flexible deadlines and attendance policies, but also increased awareness among faculty and peers about the nature of SCD and its impact on students. Universities should consider implementing policies that allow for more seamless reintegration after a dead year, as well as offering counseling services to help students cope with the psychological impact of their health challenges. Addressing these issues could significantly improve the academic and social experiences of students with SCD, enabling them to achieve their educational goals without compromising their health.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec14\" class=\"Section2\"\u003e\u003ch2\u003eLimitations and Future Research\u003c/h2\u003e\u003cp\u003eThis study is limited by the small sample size and the fact that participants were recruited from a single university. Future research should aim to include a larger and more diverse sample to capture a broader range of experiences. Additionally, longitudinal studies would be beneficial to track the long-term impact of SCD on academic progression and social integration, particularly in relation to the effects of taking a dead year and managing SCD complications over time.\u003c/p\u003e\u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003eIn conclusion, this study highlights the significant challenges faced by university students with SCD, particularly in relation to academic interruptions and social integration due to health complications. Despite these challenges, the resilience and coping strategies exhibited by these students underscore their determination to succeed in their academic pursuits. Universities must recognize the unique needs of this population and implement policies that provide adequate support to ensure that students with SCD can thrive both academically and socially.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 50%;\"\u003e\n \u003cp\u003eSCD\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 50%;\"\u003e\n \u003cp\u003eSickle Cell Disease\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 50%;\"\u003e\n \u003cp\u003eIPA\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 50%;\"\u003e\n \u003cp\u003eInterpretative Phenomenological Analysis\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 50%;\"\u003e\n \u003cp\u003eONFH\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 50%;\"\u003e\n \u003cp\u003eOsteonecrosis of the Femoral Head\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 50%;\"\u003e\n \u003cp\u003eVOC\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 50%;\"\u003e\n \u003cp\u003eVaso-Occlusive Crisis\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 50%;\"\u003e\n \u003cp\u003eCBC\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 50%;\"\u003e\n \u003cp\u003eComplete Blood Count\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 50%;\"\u003e\n \u003cp\u003eREC\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 50%;\"\u003e\n \u003cp\u003eResearch Ethics Committee\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 50%;\"\u003e\n \u003cp\u003eSPH\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 50%;\"\u003e\n \u003cp\u003eSchool of Public Health\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 50%;\"\u003e\n \u003cp\u003eWHO\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 50%;\"\u003e\n \u003cp\u003eWorld Health Organization\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e"},{"header":"Declarations","content":"\u003cp\u003eThe study received ethical approval from Makerere University School of Public Health Ethics committee (REC reference number SPH-2023-438). All participants provided written informed consent prior to enrollment in the study.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eEthics approval and consent to participate\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe study received ethical approval from Makerere University School of Public Health Ethics committee (REC reference number SPH-2023-438). All participants provided written informed consent prior to enrollment in the study.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eConsent for publication\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eAvailability of data and materials\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAll data generated or analysed during this study are included in this published article and its supplementary information files.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eCompeting interests\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no competing interests\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eFunding\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eResearch reported in this publication was supported by the Fogarty International Center of the National Institutes of Health, U.S. Department of State\u0026rsquo;s Office of the U.S. Global AIDS Coordinator and Health Diplomacy (S/GAC), and President\u0026rsquo;s Emergency Plan for AIDS Relief (PEPFAR) under Award Number 1R25TW011213. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eAuthors\u0026apos; contributions\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eV.N. conceptualized, collected and analyzed the data, and wrote the manuscript. A.A. collected and analyzed the data, and wrote the manuscript.\u0026nbsp;K.T.M. conceptualized, guided the research focus, data analysis, and manuscript review. A.N. guided the research focus, data analysis, and manuscript review. E.K. supervised the research process, contributed to the methodology development, contributed to data analysis, and reviewed the manuscript. All authors read and approved the final manuscript for submission.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eAcknowledgements\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe sincerely thank the participants for sharing their lived experiences and contributing to this study.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003ePiel FB, Patil AP, Howes RE, Nyangiri OA, Gething PW, Dewi M, et al. Global epidemiology of sickle haemoglobin in neonates: a contemporary geostatistical model-based map and population estimates. The Lancet. 2013;381(9861):142\u0026ndash;51.\u003c/li\u003e\n\u003cli\u003ePiel FB, Hay SI, Gupta S, Weatherall DJ, Williams TN. Global Burden of Sickle Cell Anaemia in Children under Five, 2010\u0026ndash;2050: Modelling Based on Demographics, Excess Mortality, and Interventions. Osrin D, editor. 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Abnormal haemoglobin variants, ABO and Rh blood groups among student of African descent in Port Harcourt, Nigeria. Afr Health Sci. 2006 Sep;6(3):177\u0026ndash;81.\u003c/li\u003e\n\u003cli\u003eHiran S. Multiorgan dysfunction syndrome in sickle cell disease. J Assoc Physicians India. 2005 Jan;53:19\u0026ndash;22.\u003c/li\u003e\n\u003cli\u003eFuggle P, Shand PA, Gill LJ, Davies SC. Pain, quality of life, and coping in sickle cell disease. Arch Dis Child. 1996 Sep 1;75(3):199\u0026ndash;203.\u003c/li\u003e\n\u003cli\u003eOlatunya OS, Oke OJ, Kuti BP, Ajayi IA, Olajuyin O, Omotosho-Olagoke O, et al. Factors Influencing the Academic Performance of Children with Sickle Cell Anaemia in Ekiti, South West Nigeria. J Trop Pediatr. 2018 Feb 1;64(1):67\u0026ndash;74.\u003c/li\u003e\n\u003cli\u003eNettles AL. Scholastic Performance of Children with Sickle Cell Disease. J Health Soc Policy. 1994 Oct 31;5(3-4):123\u0026ndash;40.\u003c/li\u003e\n\u003cli\u003eAlhazmi A, Hakami K, Abusageah F, Jaawna E, Khawaji M, Alhazmi E, et al. The Impact of Sickle Cell Disease on Academic Performance among Affected Students. Children (Basel). 2021 Dec 27;9(1):15.\u003c/li\u003e\n\u003cli\u003eIdowu M, Badejoko S, Rowan P, Juneja HS. Academic Achievement for Adults with Sickle Cell Disease Compared with Healthy Siblings. Blood. 2014 Dec 6;124(21):4936\u0026ndash;4936.\u003c/li\u003e\n\u003cli\u003eSchwartz LA, Radcliffe J, Barakat LP. Associates of school absenteeism in adolescents with sickle cell disease. Pediatr Blood Cancer. 2009;52(1):92\u0026ndash;6.\u003c/li\u003e\n\u003cli\u003eThompson M, Pawson C, Evans B. Navigating entry into higher education: the transition to independent learning and living. J Furth High Educ. 2021 Nov 26;45(10):1398\u0026ndash;410.\u003c/li\u003e\n\u003cli\u003eAgee J. Developing qualitative research questions: a reflective process. Int J Qual Stud Educ. 2009;22(4):431\u0026ndash;47.\u003c/li\u003e\n\u003cli\u003eTindall L. J.A. Smith, P. Flower and M. Larkin (2009), \u003cem\u003eInterpretative Phenomenological Analysis: Theory, Method and \u003c/em\u003e\u003cem\u003eResearch\u003c/em\u003e: London: Sage. Qual Res Psychol. 2009 Nov 25;6(4):346\u0026ndash;7.\u003c/li\u003e\n\u003cli\u003eTuffour I. A Critical Overview of Interpretative Phenomenological Analysis: A Contemporary Qualitative Research Approach. J Healthc Commun [Internet]. 2017 [cited 2024 Oct 22];02(04). Available from: http://healthcare-communications.imedpub.com/a-critical-overview-of-interpretative-phenomenological-analysis-a-contemporary-qualitative-research-approach.php?aid=20787\u003c/li\u003e\n\u003cli\u003eChen H, Cohen P, Kasen S, Gordan K, Dufur R, Smailes E. Construction and validation of a quality of life instrument for young adults. Qual Life Res. 2004;13(4):747\u0026ndash;59.\u003c/li\u003e\n\u003cli\u003eStollon NB, Paine CW, Lucas MS, Brumley LD, Poole ES, Peyton T, et al. Transitioning Adolescents and Young Adults With Sickle Cell Disease From Pediatric to Adult Health Care: Provider Perspectives. J Pediatr Hematol Oncol. 2015 Nov;37(8):577\u0026ndash;83.\u003c/li\u003e\n\u003cli\u003eAdesina OO, Brunson AM, Gotlib JR, Keegan T, Wun T. Osteonecrosis of the Femoral Head in Sickle Cell Disease: Prevalence, Comorbidities and Surgical Outcomes in California. Blood. 2016 Dec 2;128(22):2489\u0026ndash;2489.\u003c/li\u003e\n\u003cli\u003eShah P, Khaleel M, Thuptimdang W, Sunwoo J, Veluswamy S, Chalacheva P, et al. Mental stress causes vasoconstriction in subjects with sickle cell disease and in normal controls. Haematologica. 2020;105(1):83\u0026ndash;90.\u003c/li\u003e\n\u003cli\u003eSwanson ME, Grosse SD, Kulkarni R. Disability among individuals with sickle cell disease: literature review from a public health perspective. Am J Prev Med. 2011 Dec;41(6 Suppl 4):S390\u0026ndash;7.\u003c/li\u003e\n\u003cli\u003eAhebwe S, Rujumba J, Green NSS, Idro R. Lived experiences and coping strategies of adults with sickle cell disease in Uganda: Implications for improving health and well-being. Blood. 2024 Nov 5;144(Supplement 1):7675\u0026ndash;7675.\u003c/li\u003e\n\u003cli\u003e(PDF) Lived Experiences of Adults with Sickle Cell Disease. Available from: https://www.researchgate.net/publication/366755607_Lived_Experiences_of_Adults_with_Sickle_Cell_Disease_A_Qualitative_Study_Dar_es_Salaam_Tanzania\u003c/li\u003e\n\u003cli\u003eEarnshaw VA, Quinn DM, Park CL. Anticipated stigma and quality of life among people living with chronic illnesses. Chronic Illn. 2012;8(2):79\u0026ndash;88.\u003c/li\u003e\n\u003cli\u003eAkbari H, Mohammadi M, Hosseini A. Disease-Related Stigma, Stigmatizers, Causes, and Consequences: A Systematic Review. Iran J Public Health [Internet]. 2023 Oct 14 [cited 2024 Aug 31]; Available from: https://publish.kne-publishing.com/index.php/ijph/article/view/13842\u003c/li\u003e\n\u003cli\u003eGrady PA, Gough LL. Self-Management: A Comprehensive Approach to Management of Chronic Conditions. Am J Public Health. 2014;104(8):e25\u0026ndash;31.\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":true,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":true,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"Sickle cell disease, sickle cell anaemia, coping strategies, stigma, university students, institutional policy, disability, osteonecrosis","lastPublishedDoi":"10.21203/rs.3.rs-7300043/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-7300043/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cb\u003eBackground\u003c/b\u003e\u003c/p\u003e\u003cp\u003eSickle cell disease (SCD) is a hereditary blood disorder characterized by the production of abnormal hemoglobin molecules that cause red blood cells to take on a crescent or sickle shape. SCD causes excruciating pain, leading to hospitalizations and negatively affecting patients' quality of life. In transitioning to university life, students find themselves in a new environment, with demanding new domestic responsibilities and engaging in academic tasks that are perceived as different and are closely related to future success and dealing with their social life. The experiences of university students with SCD in Uganda have not been investigated. This study aimed to explore the lived experiences of university students with sickle cell disease at Makerere University, Uganda.\u003c/p\u003e\u003cp\u003e\u003cb\u003eMethods\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe study employed a qualitative approach. We conducted in-depth interviews with university students living with SCD. A total of 15 individuals were purposively recruited and participated in the study. Interpretative phenomenological analysis was applied to explore the lived experiences of students living with SCD and ascertain important themes.\u003c/p\u003e\u003cp\u003e\u003cb\u003eResults\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe average age of participants was 23 years (range 19\u0026ndash;26), and the majority (60%) were male. Patient experiences were captured in six overarching themes: academic disruptions, experience of stigmatization, the feeling of missing out, support systems, effective self-management and coping strategies, and being normal.\u003c/p\u003e\u003cp\u003e\u003cb\u003eConclusions\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThis study highlights the significant challenges faced by university students with SCD in relation to academic interruptions and social integration due to health complications. Despite these challenges, the resilience and coping strategies exhibited by these students underscore their determination to succeed in their academic pursuits. Universities must recognize the unique needs of this population and implement policies that provide adequate support to ensure that students with SCD can thrive both academically and socially.\u003c/p\u003e","manuscriptTitle":"“I had to take a ‘dead year’ to undergo surgeries,” the Lived Experiences of University Students with Sickle Cell Disease, an interpretative phenomenological analysis","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-08-26 04:49:16","doi":"10.21203/rs.3.rs-7300043/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"e23d55d5-2e5f-4a77-b25f-14ce3335430d","owner":[],"postedDate":"August 26th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2025-09-21T12:53:47+00:00","versionOfRecord":[],"versionCreatedAt":"2025-08-26 04:49:16","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-7300043","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-7300043","identity":"rs-7300043","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}