Lived Experiences of Clinical Depression Among Adolescents With Sickle Cell Anemia in Dar-es-salaam, Tanzania: A Qualitative Study

Lived Experiences of Clinical Depression Among Adolescents With Sickle Cell Anemia in Dar-es-salaam, Tanzania: A Qualitative Study | 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 Lived Experiences of Clinical Depression Among Adolescents With Sickle Cell Anemia in Dar-es-salaam, Tanzania: A Qualitative Study Linda Paul Athman, Agnes Jonathan, Fatima Mussa, Honesta John Kipasika, and 4 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-7293105/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 Anemia (SCA) has been associated with an increased likelihood of neuropsychiatric complications, including depression, and reduced quality of life due to the chronicity of the disease and the occurrence of painful crisis. This study aims to explore the lived experiences of clinical depression among adolescents with SCA in Dar-es-salaam, Tanzania. Methodology: A qualitative phenomenological study was conducted on adolescents aged 11-19 years clinically diagnosed to have depression who attended sickle cell clinics from October 2023 to March 2024. Experiences of adolescents with depression were obtained through in-depth interviews which were recorded through audio and hand written notes. Themes that were studied and analyzed to ascertain the experience of these adolescents included; health related stigma, acceptance of living with SCA, coping mechanisms to deal with depression and social support. Results : A total of 6 participants with SCA and depression were interviewed. Majority of adolescents experienced loneliness and isolation and had not fully accepted the reality of living with SCA. Adaptive and maladaptive behaviors were observed as the coping mechanisms when depressed. Social challenges experienced included bullying, name calling and fears of betrayal. Their main sources of support were parents, friends and teachers. Conclusion : Feelings of loneliness and isolation were commonly experienced by depressed adolescents. Social support, coping mechanisms, and acceptance play pivotal roles in their well-being. Understanding these experiences can inform targeted interventions and support systems for this vulnerable population. Depression experiences adolescents sickle cell anemia Tanzania BACKGROUND Sickle cell disease (SCD) is a genetic disorder due to a point mutation that results in formation of abnormal hemoglobin molecules which easily polymerize when deoxidized. SCD is a global disease with multisystem effects and various clinical manifestations. 1 , 2 Sickle cell Anemia (SCA), which is the commonest genotype with homozygous autosomal recessive hemoglobin S mutation (HbSS), has been linked to the more severe phenotype with significant mortality and morbidity in individuals with African and Mediterranean ancestry. 3 Tanzania, among other countries, has the highest burden of SCD in East Africa with the estimated prevalence of 8000-11,000 births per year. Approximately half of SCA patients (47.4%) in Tanzania were in the age group of 5–17 years . 4 Depression is a mood disorder that affects how a person feels, thinks, and conducts daily activities. It has been estimated that 1 in every 7 adolescents experience mental health conditions globally. 5 The prevalence of depression is estimated to rise with time, increasing disease burden in low and middle income countries. 6 Majority of depressive disorders arise in adolescents who have experienced long-standing psychosocial difficulties including physical or sexual abuse, emotional abuse, neglect, chronic illness, school difficulties (bullying, academic failure), social isolation, parental psychopathology, family or marital disharmony, and domestic violence. 7 , 8 SCA has been associated with an increased likelihood of neuropsychiatric complications, including depression, and reduced quality of life due to the chronicity of the disease and the occurrence of painful crisis. Other factors such as delayed puberty, recurrent hospital admissions and blood transfusions, transition of care to adult clinics and socio economic burden also greatly contribute to depression. 9 – 10 Adolescence with both SCA and depression face various challenges in the society including stigma, loneliness, fears of dying, struggles in acceptance and coping with the disease and unavailability of strong social support systems. 11 , 12 The huge burden of SCA in Sub-Saharan African countries like Tanzania calls for studies to explore the lived experiences of depressed adolescents with SCA with the goal to inform targeted interventions. METHODOLOGY Study design and setting This was a qualitative phenomenological study aimed to explore the lived experiences of clinical depression among adolescents with SCA in Dar-es-salaam, Tanzania. The city is home to four referral hospitals, including Muhimbili National Hospital (MNH) and three Regional Referral Hospitals (RRHs): Mwananyamala RRH, Amana RRH, and Temeke RRH. These hospitals hold weekly sickle cell clinics that provide a range of services, including routine health assessments, pain management, hydroxyurea therapy, vaccinations, infection prevention, complication monitoring, patient and family education, and coordination of specialized care. Study participants and sampling Adolescents aged 11–19 years with moderate to severe depression were obtained through purposive sampling from a database of depressed adolescents with SCA attending sickle cell clinics at Amana, Mwananyamala, Temeke and Muhimbili referral hospitals. Recruited adolescents were previously screened for depression using PHQ-9 tool and channeled to psychologist for further evaluation and management. Data collection methods Subjects were contacted and invited for interviews and prior to interviews consent and assents were obtained. No invited participants declined to participate. In-depth interviews were conducted in convenient places to ensure confidentiality. Interviews lasted 30–45 minutes and were conducted by a pediatric resident trained in qualitative methods. To minimize bias, reflexivity was practiced and themes were reviewed by multiple investigators. Pre-structured open-ended questions were asked in Kiswahili language and enough time was given for the responses. Interviews were conducted until data saturation was achieved. The researcher recorded the interviews using an audio recorder and also took hand written notes. Data analysis Data was transcribed in Swahili language and later translated to English language. Transcribed and translated data were reviewed by the 2 other investigators and thematic analysis was conducted using NVivo II pro (2015). Transcripts were not returned to participants for comment. A three-phase coding process was used: initial open coding, grouping codes into categories, and identifying overarching themes. The coding framework was reviewed by two independent investigators to enhance credibility and ensure consistency. Themes that were studied to ascertain the experience of adolescents living with SCA and depression included; health related stigma, acceptance of living with SCA, coping mechanisms to deal with depression and social support. Interpretation and final write up was made. RESULTS Qualitative study respondent characteristics. A total of 6 adolescents (3 males, 3 females) were recruited from those with moderate to severe depression. Those aged 10–14 years accounted for 33.3% while 15–19 years were 66.6% of the study participants. Majority of the participants 83.4% had moderate depression (Table 1 ). Table 1 Characteristics of the study participants Adolescents interviewed n (%) Age in years 10–14 2 (33.3) 15–19 4 (66.6) Gender Male 3 (50) Female 3 (50) Depression status Moderate depression 5 (83.4) Severe depression 1 (16.6) Emerging themes The study uncovered four major themes namely health related stigma, acceptance, copying mechanism and social support systems with subthemes as indicated in Table 2 and discussed hereunder. Table 2 Summary of themes and subthemes studied THEMES SUBTHEMES Health related stigma 1) Isolation 2) Loneliness Acceptance Coping mechanisms 1) Adaptive coping mechanism 2) Maladaptive coping Social support system 1) Sources of social support 2) Social challenges Health related stigma Isolation Participants demonstrated a sense of isolation which often arouse when individuals were excluded from tasks that others assumed they cannot perform due to their illness. This exclusion was particularly prevalent in school settings and occasionally at home. Such experiences led to strong negative emotions and feelings of inadequacy from the constraints imposed by their illnesses including inability to participate in strenuous sports and chores, which in turn hindered their full participation. “They engage in activities without informing me, presuming that perhaps I am incapable of participating.” (Interviewee no 4) “..People look down on you; seeing that you can't do anything and they can do everything.” (Interviewee no 3) Interestingly, a minority denied experiencing isolation. This could be explained by how their communities perceive their illness and so they neither felt different nor excluded. It may also be because SCA is quite a common disease in this setting, with well-known phenotypic features, so they don’t feel out-casted or singled-out in the community. “Where I live, sickle cell is considered just like any other disease, so I don't feel isolated.” (Interviewee no 3) Loneliness Loneliness stemming from a lack of connection with others has been closely associated with symptoms of depression. In interviews with adolescents, those who responded expressed individual feelings of loneliness. Some described this experience as being accompanied by unhappiness, worthlessness, and invisibility, often exacerbated by societal judgment. “ Currently, I experience a sense of worthlessness and unhappiness, which contrasts with how I felt initially. The reason behind this emotional shift lies in the impact of my illness or problem…” (Interviewee no 1) As a result of experiencing loneliness, significant impact is seen on their emotional well-being. Some reported resultant feelings of being different from others and sometimes absent from their environment, leading to a sense of disconnection and preferably staying in isolated environments. “….I am not comfortable being around people. I see myself so different from others……I'm just on my own; I don't have a permanent friend.” (Interviewee no 5) “I just like to stay by myself; where I could listen to my music. Most of the times I really like staying alone” (Interviewee no 4) Acceptance The majority of adolescents interviewed haven’t fully embraced the reality that they may live with SCA throughout their lives. One interviewee expressed occasional discomfort due to the condition. She continually questions her existence, wondering why she was born with this illness, and imagined an alternate life without it. “Yes, sometimes it bothers me a lot, for example, I keep asking myself questions like, “Why was I born this way? ‘What would life be like if I were someone else?” (Interviewee no 4) Some adolescents struggle to understand what they are experiencing and have yet to fully come to terms with the possibility that they may live with their illness for the duration of their lives. They explore various possibilities, contemplating whether they may access a curative treatment or when they might cease taking medications and achieve full recovery. Despite struggling to comprehend why recurrent painful episodes persist even after treatment, they demonstrate resilience in their efforts to accept this reality. “I always fail to understand why, even after being discharged from the hospital, you find that the pain returns” (Interviewee no 1) “I wonder if this illness will end; I wonder if I will recover or not.” (Interviewee no 2) Attitudes toward accepting an illness varied, and this could be influenced by factors such as knowledge on the disease or severity of the disease. During interviews, two adolescents expressed acceptance of their condition and had adapted to living with SCA. Interviewee no. 3 specifically acknowledged her awareness that she would experience periodic painful episodes, which she attributes to the inherent nature of her illness. “I comprehend that any pain I experience due to sickle cell, whether in my legs, back, or head, is directly linked to the condition. So as a result, it doesn’t significantly trouble me.” (Interviewee no 3). Coping mechanisms Adaptive coping mechanisms Majority of adolescents had developed some effective coping mechanisms which were helpful to them based on individual experiences and based on the level of depressive symptoms that they encountered. Some of the repeatedly mentioned coping mechanisms included chatting with friends, watching television or listening to music, staying alone in quiet environment, and meditation. Other coping mechanisms mentioned included ignorance of offending statements, engaging in sports, and avoiding triggering environments. “ I always feel hurt; I would just go home, sit and meditate” (Interviewee no 1) “If I feel sad, there is a TV in our house; I will turn on the TV, and watch….if I don't feel like watching TV, I will go chat with my friends. If not, then I am a tailor; I will take clothes and start sewing.” (Interviewee no 3) Maladaptive coping mechanism Adolescents were interviewed to explore their experiences of depressive symptoms and various types of coping mechanisms they have in place when faced with these symptoms. Some adolescents had maladaptive coping strategies following their initial experiences of depressive symptoms. Some adolescents demonstrated anger outbursts and tears while others experienced sadness and low self-esteem. Approximately one-third had developed suicidal thoughts and even attempted self-harm to escape their emotional suffering. “I said I better die, I told them not to take me to the hospital anymore; I am going to be just fine. I didn't tell my mother, I stopped taking medicine.” (Interviewee no 4) “I wanted to overdose myself. I just found myself in the state of wanting to die……“I took a knife and wanted to cut myself. Another day I took a pen and wanted to pierce myself. Yes, I mean, I take sharp things, the ones that are dangerous and I try to kill myself”…….. (Interviewee no 5) Social support system Sources of social support Experiences of adolescents with depression and their social support systems were explored. Most of them had reliable social support networks when dealing with depressive symptoms. These networks included parents, friends, and teachers at school. Among the six adolescents interviewed, four mentioned their families, primarily parents, as their primary social support system. Despite overall care, parents served as a source of encouragement. Additionally, one adolescent highlighted a friend who provided social support due to shared experience of having a chronic illness. “I have one friend who gives me advice. She suffers from epilepsy, and sometimes losses consciousness or falls. She encouraged me to take my medications again.” (Interviewee no 4) “I get a lot of comfort from my mother…..I can boldly say that my mother is my pillar of support.” (Interviewee no 1) Social challenges Fascinatingly, certain individuals expressed a lack of trust in their friends, fearing potential betrayal and the exposure of their secrets. Some friends even engaged in teasing and bullying behavior. Notably, one adolescent shared that when feeling distressed due to teasing, they confide in their parents or a teacher at school. Only two of the interviewed adolescents had no effective support system “I can't stay with one person. You find that today you have this friend, and tomorrow she has another friend. I think she will be sharing your information with other people” (Interviewee no 5) When I went back to school, people kept saying, "She has already lost blood, and she was given blood again. When the blood runs out, she will be given cow's blood". (Interviewee no 3) DISCUSSION This study aimed to explore lived experiences of adolescents with SCA and depression. Majority of adolescents with SCA and depression reported to go through health related stigma. They reported to feel isolated and lonely as they were excluded in tasks due to disease limitations. Acceptance of the disease, adaptive copying mechanisms and support from family, friends and teachers were major sources of comfort. Employing strategies to alleviate loneliness and social isolation could improve the mental health of adolescents with SCA who have depression. In our study, loneliness and isolation were the most common depressive symptoms among adolescents with SCA. This is similar to a cross-sectional study done in the Denmark by Christiansen in 2021 which demonstrated that feelings of loneliness and social isolation were strongly associated with mental illness and depressive symptoms among adolescents and young adults. 12 Results also reveal that majority of adolescents have not fully accepted the fact that they may have to live with SCA for the rest of their lives. This was similar to findings from Christiansen where adolescents were struggling to understand the pain they go through due to their illness. 12 Attitudes toward accepting an illness could be influenced by factors such as the knowledge on the disease or severity of the disease. Acceptance of living with an illness has a protective role in improving mental health outcomes for people living with a chronic illness like SCA. 13 Furthermore, this study revealed that adolescents try to cope with challenges of living with the disease through meditation and distractions such as watching television and music and chatting with friends. Some adolescents were found to develop maladaptive coping strategies like trying to attempt suicide, stop taking their medications and self-harm. A descriptive qualitative study done in Jamaica by Forrester also reported that prayer and spiritual activities were among the major coping mechanism in dealing with the illness, alongside other diversion activities such as watching television, surfing the internet and talking to others. 11 Good coping behaviors can reduce the chances of developing depression and anxiety disorders in adolescents. Adolescents with SCA who have developed depressive symptoms experience various challenges in their day-to-day lives. Challenges arising from the society included bullying and name calling among others halting them from developing sincere and comforting relationships. Social support provided by individuals within a close social network significantly improves the overall sense of well-being and aid in coping with chronic illnesses. Main sources of support for adolescents in this study were parents, friends and teachers. Similarly, Forrester reported that strong family, school, and peer support made adolescents with SCA in Jamaica feel accepted in their communities despite their illness. 11 Having a good social support system could be beneficial to these adolescents who are not only battling this lifelong illness but also going through puberty and hormonal changes that could make them vulnerable to feelings of hopelessness and depression. CONCLUSION Our study has uncovered emotional complexities faced by depressed adolescents living with SCA in Tanzania. Loneliness and isolation were commonly experienced. Social support, coping mechanisms, and acceptance played pivotal roles in their well-being. Understanding these experiences can inform targeted interventions and support systems for this vulnerable population. We recommend routine screening for depression among adolescents with SCA and interventions which should focus on good coping strategies, acceptance of living with SCA and strengthening social support systems. Declarations ETHICAL CONSIDERATION AND APPROVAL Ethical approval for the study was obtained from the Muhimbili University of Health and Allied Sciences (MUHAS) Research Ethics Committee (MUHAS-REC-06-2023-1770). Informed consent was obtained from parents and guardians of adolescents and assent was obtained accordingly from adolescents. Participants with moderate to severe depression were referred to a clinical psychologist for further evaluation and management. The data collected did not interfere with the routine care provided at the clinics. CONSENT FOR PUBLICATION Written informed consent for publication was obtained from parents or legal guardians of participants younger than 18 years and from participants older than 18 years. DISCLOSURE The authors report no conflicts of interest in this work. FUNDING Research reported in this publication was supported by the National Heart, Lung, and Blood Institute (NHLBI) of the US National Institutes of Health (NIH) under Award Number U01 HL156853 (Sickle Pan-African Research Consortium—SPARCO Tanzania). The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH. Author Contribution Linda Paul Athman participated in proposal formulation, data collection, data analysis, and manuscript writing.Agnes Jonathan, Fatima Mussa, Honesta John Kipasika, Florence Urio, Ritha Mutagonda, and Emmanuel Balandya provided input on proposal formulation and reviewed the final manuscript. ACKNOWLEDGMENTS Authors would like to appreciate parents/guardians and adolescents for their participation and members of staff at sickle cell clinics at Muhimbili National Hospital, Temeke, and Amana Regional Referral Hospitals for their support during data collection. References Sedrak A, Kondamudi NP, Sickle Cell D. 2022 Aug 29. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2023 Jan –. PMID: 29494006. Published online 2023:29494006. Inusa BPD, Hsu LL, Kohli N, et al. Sickle cell disease—genetics, pathophysiology, clinical presentation and treatment. Int J Neonatal Screen. 2019;5(2). 10.3390/ijns5020020 . Mangla A, Ehsan M, Agarwal N et al. Sickle Cell Anemia. [Updated 2022 May 14]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2022 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK482164/ . Published online 2022:482164. Makani J, Tluway F, Makubi A, et al. A ten year review of the sickle cell program in Muhimbili National Hospital, Tanzania. BMC Hematol. 2018;18(1):1–13. 10.1186/s12878-018-0125-0 . WHO Fact Sheet.pdf. Accessed December 30. 2022. https://www.who.int/news-room/fact-sheets/detail/adolescent-mental-health Rathod S, Pinninti N, Irfan M, et al. Mental Health Service Provision in Low- and Middle-Income Countries. Heal Serv Insights. 2017;10. 10.1177/1178632917694350 . Asnani MR, Fraser R, Lewis NA, Reid ME. Depression and loneliness in Jamaicans with sickle cell disease. BMC Psychiatry . 2010;10(1997). 10.1186/1471-244X-10-40 Petito A, Pop TL, Namazova-Baranova L, et al. The Burden of Depression in Adolescents and the Importance of Early Recognition. J Pediatr. 2020;218:265–e2671. 10.1016/j.jpeds.2019.12.003 . Benton TD, Boyd R, Ifeagwu J, Feldtmose E, Smith-Whitley K. Psychiatric diagnosis in adolescents with sickle cell disease: A preliminary report. Curr Psychiatry Rep. 2011;13(2):111–5. 10.1007/s11920-011-0177-3 . Saulsberry AC, Porter JS, Hankins JS. A program of transition to adult care for sickle cell disease. 2017;(Fig 1):496–504. Forrester AB, Barton-Gooden A, Pitter C, Lindo JLM. The lived experiences of adolescents with sickle cell disease in Kingston, Jamaica. Int J Qual Stud Health Well-being. 2015;10:1–9. 10.3402/qhw.v10.28104 . Christiansen J, Qualter P, Friis K, et al. Associations of loneliness and social isolation with physical and mental health among adolescents and young adults. Perspect Public Health. 2021;141(4):226–36. 10.1177/17579139211016077 . Casier A, Goubert L, Gebhardt WA, et al. Acceptance, well-being and goals in adolescents with chronic illness: a daily process analysis. Psychol Health. 2013;28(11):1337–51. 10.1080/08870446.2013.809083 . Additional Declarations No competing interests reported. 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-7293105","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":517404475,"identity":"d8aad99c-fe12-42f4-8c50-2ed4db77ae2d","order_by":0,"name":"Linda Paul Athman","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA4ElEQVRIiWNgGAWjYHACxgMPDBgYG5gZGx8wMBwgTs+BBJAW9ubDBiRoAVrVwHMsTYIoLebsZwwOJBTcke2fkWNWzVNzR46fgfnhoxt4tFj25AC1GDwznnEjx+w2z7FnxpINbMbGOXi0GBwAazmc2ADWwnY4ccMBHjZpvFrOv4FomQ/UUszzjxgtN6C2bDhzLI2Zt40ILZYznhWAtBhvPN58WHJu32FjyWYCfjHnT9744MOfw7LzDjM2fnjz7bAcP3vzw8d4HYbMYeIBkcx4lGNoYfxBQPUoGAWjYBSMTAAAjV1aEVVcPqMAAAAASUVORK5CYII=","orcid":"","institution":"Muhimbili University of Health and Allied Sciences","correspondingAuthor":true,"prefix":"","firstName":"Linda","middleName":"Paul","lastName":"Athman","suffix":""},{"id":517404476,"identity":"3f6ab16e-2174-4973-b768-bce6b1ee3323","order_by":1,"name":"Agnes Jonathan","email":"","orcid":"","institution":"Muhimbili University of Health and Allied Sciences","correspondingAuthor":false,"prefix":"","firstName":"Agnes","middleName":"","lastName":"Jonathan","suffix":""},{"id":517404477,"identity":"7f939886-171b-4801-bbb6-5d813c03a67c","order_by":2,"name":"Fatima Mussa","email":"","orcid":"","institution":"Muhimbili University of Health and Allied Sciences","correspondingAuthor":false,"prefix":"","firstName":"Fatima","middleName":"","lastName":"Mussa","suffix":""},{"id":517404478,"identity":"ce07fa31-6902-4f81-b05e-3824e269dbb5","order_by":3,"name":"Honesta John Kipasika","email":"","orcid":"","institution":"Muhimbili University of Health and Allied Sciences","correspondingAuthor":false,"prefix":"","firstName":"Honesta","middleName":"John","lastName":"Kipasika","suffix":""},{"id":517404479,"identity":"471e532f-74c5-4e1f-a18f-4387bb44d5da","order_by":4,"name":"Florence Urio","email":"","orcid":"","institution":"Muhimbili University of Health and Allied Sciences","correspondingAuthor":false,"prefix":"","firstName":"Florence","middleName":"","lastName":"Urio","suffix":""},{"id":517404480,"identity":"e7d94b35-3ef5-4606-9724-276cd2c895da","order_by":5,"name":"Mwashungi Ally","email":"","orcid":"","institution":"Muhimbili University of Health and Allied Sciences","correspondingAuthor":false,"prefix":"","firstName":"Mwashungi","middleName":"","lastName":"Ally","suffix":""},{"id":517404481,"identity":"35103769-c97e-4d8a-a3cb-30fe9123d438","order_by":6,"name":"Ritha Mutagonda","email":"","orcid":"","institution":"Muhimbili University of Health and Allied Sciences","correspondingAuthor":false,"prefix":"","firstName":"Ritha","middleName":"","lastName":"Mutagonda","suffix":""},{"id":517404482,"identity":"c099ffda-8233-421d-b823-8f03248c3941","order_by":7,"name":"Emmanuel Balandya","email":"","orcid":"","institution":"Muhimbili University of Health and Allied Sciences","correspondingAuthor":false,"prefix":"","firstName":"Emmanuel","middleName":"","lastName":"Balandya","suffix":""}],"badges":[],"createdAt":"2025-08-04 16:24:04","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-7293105/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-7293105/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":91814762,"identity":"0849ebe5-b740-4660-8c32-962297fb9c32","added_by":"auto","created_at":"2025-09-22 06:15:44","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":609322,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-7293105/v1/64dd09bd-1a45-444c-8a22-f48de95d42af.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"\u003cp\u003eLived Experiences of Clinical Depression Among Adolescents With Sickle Cell Anemia in Dar-es-salaam, Tanzania: A Qualitative Study\u003c/p\u003e","fulltext":[{"header":"BACKGROUND","content":"\u003cp\u003eSickle cell disease (SCD) is a genetic disorder due to a point mutation that results in formation of abnormal hemoglobin molecules which easily polymerize when deoxidized. SCD is a global disease with multisystem effects and various clinical manifestations.\u003csup\u003e\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e,\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e\u003c/sup\u003e Sickle cell Anemia (SCA), which is the commonest genotype with homozygous autosomal recessive hemoglobin S mutation (HbSS), has been linked to the more severe phenotype with significant mortality and morbidity in individuals with African and Mediterranean ancestry.\u003csup\u003e\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e\u003c/sup\u003e Tanzania, among other countries, has the highest burden of SCD in East Africa with the estimated prevalence of 8000-11,000 births per year. Approximately half of SCA patients (47.4%) in Tanzania were in the age group of 5\u0026ndash;17 years .\u003csup\u003e\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e\u003c/sup\u003e\u003c/p\u003e\u003cp\u003eDepression is a mood disorder that affects how a person feels, thinks, and conducts daily activities. It has been estimated that 1 in every 7 adolescents experience mental health conditions globally.\u003csup\u003e\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e\u003c/sup\u003e The prevalence of depression is estimated to rise with time, increasing disease burden in low and middle income countries.\u003csup\u003e\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e\u003c/sup\u003e Majority of depressive disorders arise in adolescents who have experienced long-standing psychosocial difficulties including physical or sexual abuse, emotional abuse, neglect, chronic illness, school difficulties (bullying, academic failure), social isolation, parental psychopathology, family or marital disharmony, and domestic violence.\u003csup\u003e\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e,\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e\u003c/sup\u003e\u003c/p\u003e\u003cp\u003eSCA has been associated with an increased likelihood of neuropsychiatric complications, including depression, and reduced quality of life due to the chronicity of the disease and the occurrence of painful crisis. Other factors such as delayed puberty, recurrent hospital admissions and blood transfusions, transition of care to adult clinics and socio economic burden also greatly contribute to depression.\u003csup\u003e\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e\u003c/sup\u003e\u003c/p\u003e\u003cp\u003eAdolescence with both SCA and depression face various challenges in the society including stigma, loneliness, fears of dying, struggles in acceptance and coping with the disease and unavailability of strong social support systems.\u003csup\u003e\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e,\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e\u003c/sup\u003e The huge burden of SCA in Sub-Saharan African countries like Tanzania calls for studies to explore the lived experiences of depressed adolescents with SCA with the goal to inform targeted interventions.\u003c/p\u003e"},{"header":"METHODOLOGY","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e\u003ch2\u003eStudy design and setting\u003c/h2\u003e\u003cp\u003eThis was a qualitative phenomenological study aimed to explore the lived experiences of clinical depression among adolescents with SCA in Dar-es-salaam, Tanzania. The city is home to four referral hospitals, including Muhimbili National Hospital (MNH) and three Regional Referral Hospitals (RRHs): Mwananyamala RRH, Amana RRH, and Temeke RRH. These hospitals hold weekly sickle cell clinics that provide a range of services, including routine health assessments, pain management, hydroxyurea therapy, vaccinations, infection prevention, complication monitoring, patient and family education, and coordination of specialized care.\u003c/p\u003e\u003c/div\u003e\n\u003ch3\u003eStudy participants and sampling\u003c/h3\u003e\n\u003cp\u003eAdolescents aged 11\u0026ndash;19 years with moderate to severe depression were obtained through purposive sampling from a database of depressed adolescents with SCA attending sickle cell clinics at Amana, Mwananyamala, Temeke and Muhimbili referral hospitals. Recruited adolescents were previously screened for depression using PHQ-9 tool and channeled to psychologist for further evaluation and management.\u003c/p\u003e\n\u003ch3\u003eData collection methods\u003c/h3\u003e\n\u003cp\u003eSubjects were contacted and invited for interviews and prior to interviews consent and assents were obtained. No invited participants declined to participate. In-depth interviews were conducted in convenient places to ensure confidentiality. Interviews lasted 30\u0026ndash;45 minutes and were conducted by a pediatric resident trained in qualitative methods. To minimize bias, reflexivity was practiced and themes were reviewed by multiple investigators. Pre-structured open-ended questions were asked in Kiswahili language and enough time was given for the responses. Interviews were conducted until data saturation was achieved. The researcher recorded the interviews using an audio recorder and also took hand written notes.\u003c/p\u003e\u003cdiv id=\"Sec6\" class=\"Section2\"\u003e\u003ch2\u003eData analysis\u003c/h2\u003e\u003cp\u003eData was transcribed in Swahili language and later translated to English language. Transcribed and translated data were reviewed by the 2 other investigators and thematic analysis was conducted using NVivo II pro (2015). Transcripts were not returned to participants for comment. A three-phase coding process was used: initial open coding, grouping codes into categories, and identifying overarching themes. The coding framework was reviewed by two independent investigators to enhance credibility and ensure consistency. Themes that were studied to ascertain the experience of adolescents living with SCA and depression included; health related stigma, acceptance of living with SCA, coping mechanisms to deal with depression and social support. Interpretation and final write up was made.\u003c/p\u003e\u003c/div\u003e"},{"header":"RESULTS","content":"\u003cp\u003e\u003cb\u003eQualitative study respondent characteristics.\u003c/b\u003e\u003c/p\u003e\u003cp\u003eA total of 6 adolescents (3 males, 3 females) were recruited from those with moderate to severe depression. Those aged 10\u0026ndash;14 years accounted for 33.3% while 15\u0026ndash;19 years were 66.6% of the study participants. Majority of the participants 83.4% had moderate depression (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\u003eCharacteristics of the study participants\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"2\"\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\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eAdolescents interviewed\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003en (%)\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e\u003cp\u003eAge in years\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e10\u0026ndash;14\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e2 (33.3)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e15\u0026ndash;19\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e4 (66.6)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e\u003cp\u003eGender\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eMale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e3 (50)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eFemale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e3 (50)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e\u003cp\u003eDepression status\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eModerate depression\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e5 (83.4)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eSevere depression\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1 (16.6)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003cdiv id=\"Sec8\" class=\"Section2\"\u003e\u003ch2\u003eEmerging themes\u003c/h2\u003e\u003cp\u003eThe study uncovered four major themes namely health related stigma, acceptance, copying mechanism and social support systems with subthemes as indicated in Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e and discussed hereunder.\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eSummary of themes and subthemes studied\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"2\"\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\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eTHEMES\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eSUBTHEMES\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eHealth related stigma\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1) Isolation\u003c/p\u003e\u003cp\u003e2) Loneliness\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eAcceptance\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eCoping mechanisms\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1) Adaptive coping mechanism\u003c/p\u003e\u003cp\u003e2) Maladaptive coping\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eSocial support system\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1) Sources of social support\u003c/p\u003e\u003cp\u003e2) Social challenges\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003c/div\u003e\n\u003ch3\u003eHealth related stigma\u003c/h3\u003e\n\u003cdiv id=\"Sec10\" class=\"Section2\"\u003e\u003ch2\u003eIsolation\u003c/h2\u003e\u003cp\u003e Participants demonstrated a sense of isolation which often arouse when individuals were excluded from tasks that others assumed they cannot perform due to their illness. This exclusion was particularly prevalent in school settings and occasionally at home. Such experiences led to strong negative emotions and feelings of inadequacy from the constraints imposed by their illnesses including inability to participate in strenuous sports and chores, which in turn hindered their full participation.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;They engage in activities without informing me, presuming that perhaps I am incapable of participating.\u0026rdquo; (Interviewee no 4)\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;..People look down on you; seeing that you can't do anything and they can do everything.\u0026rdquo; (Interviewee no 3)\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eInterestingly, a minority denied experiencing isolation. This could be explained by how their communities perceive their illness and so they neither felt different nor excluded. It may also be because SCA is quite a common disease in this setting, with well-known phenotypic features, so they don\u0026rsquo;t feel out-casted or singled-out in the community.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;Where I live, sickle cell is considered just like any other disease, so I don't feel isolated.\u0026rdquo; (Interviewee no 3)\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec11\" class=\"Section2\"\u003e\u003ch2\u003eLoneliness\u003c/h2\u003e\u003cp\u003eLoneliness stemming from a lack of connection with others has been closely associated with symptoms of depression. In interviews with adolescents, those who responded expressed individual feelings of loneliness. Some described this experience as being accompanied by unhappiness, worthlessness, and invisibility, often exacerbated by societal judgment.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;\u003cem\u003eCurrently, I experience a sense of worthlessness and unhappiness, which contrasts with how I felt initially. The reason behind this emotional shift lies in the impact of my illness or problem\u0026hellip;\u0026rdquo; (Interviewee no 1)\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eAs a result of experiencing loneliness, significant impact is seen on their emotional well-being. Some reported resultant feelings of being different from others and sometimes absent from their environment, leading to a sense of disconnection and preferably staying in isolated environments.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;\u0026hellip;.I am not comfortable being around people. I see myself so different from others\u0026hellip;\u0026hellip;I'm just on my own; I don't have a permanent friend.\u0026rdquo; (Interviewee no 5)\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;I just like to stay by myself; where I could listen to my music. Most of the times I really like staying alone\u0026rdquo; (Interviewee no 4)\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec12\" class=\"Section2\"\u003e\u003ch2\u003eAcceptance\u003c/h2\u003e\u003cp\u003eThe majority of adolescents interviewed haven\u0026rsquo;t fully embraced the reality that they may live with SCA throughout their lives. One interviewee expressed occasional discomfort due to the condition. She continually questions her existence, wondering why she was born with this illness, and imagined an alternate life without it.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;Yes, sometimes it bothers me a lot, for example, I keep asking myself questions like, \u0026ldquo;Why was I born this way? \u0026lsquo;What would life be like if I were someone else?\u0026rdquo; (Interviewee no 4)\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eSome adolescents struggle to understand what they are experiencing and have yet to fully come to terms with the possibility that they may live with their illness for the duration of their lives. They explore various possibilities, contemplating whether they may access a curative treatment or when they might cease taking medications and achieve full recovery. Despite struggling to comprehend why recurrent painful episodes persist even after treatment, they demonstrate resilience in their efforts to accept this reality.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;I always fail to understand why, even after being discharged from the hospital, you find that the pain returns\u0026rdquo; (Interviewee no 1)\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;I wonder if this illness will end; I wonder if I will recover or not.\u0026rdquo; (Interviewee no 2)\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eAttitudes toward accepting an illness varied, and this could be influenced by factors such as knowledge on the disease or severity of the disease. During interviews, two adolescents expressed acceptance of their condition and had adapted to living with SCA. Interviewee no. 3 specifically acknowledged her awareness that she would experience periodic painful episodes, which she attributes to the inherent nature of her illness.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;I comprehend that any pain I experience due to sickle cell, whether in my legs, back, or head, is directly linked to the condition. So as a result, it doesn\u0026rsquo;t significantly trouble me.\u0026rdquo; (Interviewee no 3).\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec13\" class=\"Section2\"\u003e\u003ch2\u003eCoping mechanisms\u003c/h2\u003e\u003cdiv id=\"Sec14\" class=\"Section3\"\u003e\u003ch2\u003eAdaptive coping mechanisms\u003c/h2\u003e\u003cp\u003eMajority of adolescents had developed some effective coping mechanisms which were helpful to them based on individual experiences and based on the level of depressive symptoms that they encountered. Some of the repeatedly mentioned coping mechanisms included chatting with friends, watching television or listening to music, staying alone in quiet environment, and meditation. Other coping mechanisms mentioned included ignorance of offending statements, engaging in sports, and avoiding triggering environments.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;\u003cem\u003eI always feel hurt; I would just go home, sit and meditate\u0026rdquo; (Interviewee no 1)\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;If I feel sad, there is a TV in our house; I will turn on the TV, and watch\u0026hellip;.if I don't feel like watching TV, I will go chat with my friends. If not, then I am a tailor; I will take clothes and start sewing.\u0026rdquo; (Interviewee no 3)\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv id=\"Sec15\" class=\"Section2\"\u003e\u003ch2\u003eMaladaptive coping mechanism\u003c/h2\u003e\u003cp\u003eAdolescents were interviewed to explore their experiences of depressive symptoms and various types of coping mechanisms they have in place when faced with these symptoms. Some adolescents had maladaptive coping strategies following their initial experiences of depressive symptoms. Some adolescents demonstrated anger outbursts and tears while others experienced sadness and low self-esteem. Approximately one-third had developed suicidal thoughts and even attempted self-harm to escape their emotional suffering.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;I said I better die, I told them not to take me to the hospital anymore; I am going to be just fine. I didn't tell my mother, I stopped taking medicine.\u0026rdquo; (Interviewee no 4)\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;I wanted to overdose myself. I just found myself in the state of wanting to die\u0026hellip;\u0026hellip;\u0026ldquo;I took a knife and wanted to cut myself. Another day I took a pen and wanted to pierce myself. Yes, I mean, I take sharp things, the ones that are dangerous and I try to kill myself\u0026rdquo;\u0026hellip;\u0026hellip;.. (Interviewee no 5)\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec16\" class=\"Section2\"\u003e\u003ch2\u003eSocial support system\u003c/h2\u003e\u003cdiv id=\"Sec17\" class=\"Section3\"\u003e\u003ch2\u003eSources of social support\u003c/h2\u003e\u003cp\u003eExperiences of adolescents with depression and their social support systems were explored. Most of them had reliable social support networks when dealing with depressive symptoms. These networks included parents, friends, and teachers at school. Among the six adolescents interviewed, four mentioned their families, primarily parents, as their primary social support system. Despite overall care, parents served as a source of encouragement. Additionally, one adolescent highlighted a friend who provided social support due to shared experience of having a chronic illness.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;I have one friend who gives me advice. She suffers from epilepsy, and sometimes losses consciousness or falls. She encouraged me to take my medications again.\u0026rdquo; (Interviewee no 4)\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;I get a lot of comfort from my mother\u0026hellip;..I can boldly say that my mother is my pillar of support.\u0026rdquo; (Interviewee no 1)\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv id=\"Sec18\" class=\"Section2\"\u003e\u003ch2\u003eSocial challenges\u003c/h2\u003e\u003cp\u003eFascinatingly, certain individuals expressed a lack of trust in their friends, fearing potential betrayal and the exposure of their secrets. Some friends even engaged in teasing and bullying behavior. Notably, one adolescent shared that when feeling distressed due to teasing, they confide in their parents or a teacher at school. Only two of the interviewed adolescents had no effective support system\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;I can't stay with one person. You find that today you have this friend, and tomorrow she has another friend. I think she will be sharing your information with other people\u0026rdquo; (Interviewee no 5)\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003eWhen I went back to school, people kept saying, \"She has already lost blood, and she was given blood again. When the blood runs out, she will be given cow's blood\". (Interviewee no 3)\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003c/div\u003e"},{"header":"DISCUSSION","content":"\u003cp\u003eThis study aimed to explore lived experiences of adolescents with SCA and depression. Majority of adolescents with SCA and depression reported to go through health related stigma. They reported to feel isolated and lonely as they were excluded in tasks due to disease limitations. Acceptance of the disease, adaptive copying mechanisms and support from family, friends and teachers were major sources of comfort. Employing strategies to alleviate loneliness and social isolation could improve the mental health of adolescents with SCA who have depression.\u003c/p\u003e\u003cp\u003eIn our study, loneliness and isolation were the most common depressive symptoms among adolescents with SCA. This is similar to a cross-sectional study done in the Denmark by Christiansen in 2021 which demonstrated that feelings of loneliness and social isolation were strongly associated with mental illness and depressive symptoms among adolescents and young adults.\u003csup\u003e\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e\u003c/sup\u003e\u003c/p\u003e\u003cp\u003eResults also reveal that majority of adolescents have not fully accepted the fact that they may have to live with SCA for the rest of their lives. This was similar to findings from Christiansen where adolescents were struggling to understand the pain they go through due to their illness.\u003csup\u003e\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e\u003c/sup\u003e Attitudes toward accepting an illness could be influenced by factors such as the knowledge on the disease or severity of the disease. Acceptance of living with an illness has a protective role in improving mental health outcomes for people living with a chronic illness like SCA.\u003csup\u003e\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e\u003c/sup\u003e\u003c/p\u003e\u003cp\u003eFurthermore, this study revealed that adolescents try to cope with challenges of living with the disease through meditation and distractions such as watching television and music and chatting with friends. Some adolescents were found to develop maladaptive coping strategies like trying to attempt suicide, stop taking their medications and self-harm. A descriptive qualitative study done in Jamaica by Forrester also reported that prayer and spiritual activities were among the major coping mechanism in dealing with the illness, alongside other diversion activities such as watching television, surfing the internet and talking to others.\u003csup\u003e\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e\u003c/sup\u003e Good coping behaviors can reduce the chances of developing depression and anxiety disorders in adolescents.\u003c/p\u003e\u003cp\u003eAdolescents with SCA who have developed depressive symptoms experience various challenges in their day-to-day lives. Challenges arising from the society included bullying and name calling among others halting them from developing sincere and comforting relationships. Social support provided by individuals within a close social network significantly improves the overall sense of well-being and aid in coping with chronic illnesses. Main sources of support for adolescents in this study were parents, friends and teachers. Similarly, Forrester reported that strong family, school, and peer support made adolescents with SCA in Jamaica feel accepted in their communities despite their illness. \u003csup\u003e\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e\u003c/sup\u003e Having a good social support system could be beneficial to these adolescents who are not only battling this lifelong illness but also going through puberty and hormonal changes that could make them vulnerable to feelings of hopelessness and depression.\u003c/p\u003e"},{"header":"CONCLUSION","content":"\u003cp\u003eOur study has uncovered emotional complexities faced by depressed adolescents living with SCA in Tanzania. Loneliness and isolation were commonly experienced. Social support, coping mechanisms, and acceptance played pivotal roles in their well-being. Understanding these experiences can inform targeted interventions and support systems for this vulnerable population. We recommend routine screening for depression among adolescents with SCA and interventions which should focus on good coping strategies, acceptance of living with SCA and strengthening social support systems.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cdiv id=\"Sec21\" class=\"Section2\"\u003e\n\u003ch2\u003eETHICAL CONSIDERATION AND APPROVAL\u003c/h2\u003e\n\u003cp\u003eEthical approval\u0026nbsp;for the study was obtained from the Muhimbili University of Health and Allied Sciences (MUHAS) Research Ethics Committee (MUHAS-REC-06-2023-1770). Informed consent was obtained from parents and guardians of adolescents and assent was obtained accordingly from adolescents. Participants with moderate to severe depression were referred to a clinical psychologist for further evaluation and management. The data collected did not interfere with the routine care provided at the clinics.\u003c/p\u003e\n\u003c/div\u003e\u003ch2\u003eCONSENT FOR PUBLICATION\u003c/h2\u003e\n\u003cp\u003eWritten informed consent for publication was obtained from parents or legal guardians of participants younger than 18 years and from participants older than 18 years.\u003c/p\u003e\n\u003ch2\u003eDISCLOSURE\u003c/h2\u003e\n\u003cp\u003eThe authors report no conflicts of interest in this work.\u003c/p\u003e\n\u003ch2\u003eFUNDING\u003c/h2\u003e\n\u003cp\u003eResearch reported in this publication was supported by the National Heart, Lung, and Blood Institute (NHLBI) of the US National Institutes of Health (NIH) under Award Number U01 HL156853 (Sickle Pan-African Research Consortium\u0026mdash;SPARCO Tanzania). The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.\u003c/p\u003e\n\u003ch2\u003eAuthor Contribution\u003c/h2\u003e\n\u003cp\u003eLinda Paul Athman participated in proposal formulation, data collection, data analysis, and manuscript writing.Agnes Jonathan, Fatima Mussa, Honesta John Kipasika, Florence Urio, Ritha Mutagonda, and Emmanuel Balandya provided input on proposal formulation and reviewed the final manuscript.\u003c/p\u003e\n\u003ch2\u003eACKNOWLEDGMENTS\u003c/h2\u003e\n\u003cp\u003eAuthors would like to appreciate parents/guardians and adolescents for their participation and members of staff at sickle cell clinics at Muhimbili National Hospital, Temeke, and Amana Regional Referral Hospitals for their support during data collection.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eSedrak A, Kondamudi NP, Sickle Cell D. 2022 Aug 29. In: StatPearls [Internet]. 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Acceptance, well-being and goals in adolescents with chronic illness: a daily process analysis. Psychol Health. 2013;28(11):1337\u0026ndash;51. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1080/08870446.2013.809083\u003c/span\u003e\u003cspan address=\"10.1080/08870446.2013.809083\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e\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":false,"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":"Depression, experiences, adolescents, sickle cell anemia, Tanzania","lastPublishedDoi":"10.21203/rs.3.rs-7293105/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-7293105/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground:\u003c/strong\u003e Sickle Cell Anemia (SCA) has been associated with an increased likelihood of neuropsychiatric complications, including depression, and reduced quality of life due to the chronicity of the disease and the occurrence of painful crisis. This study aims to explore the lived experiences of clinical depression among adolescents with SCA in Dar-es-salaam, Tanzania.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethodology:\u003c/strong\u003e A qualitative phenomenological study was conducted on adolescents aged 11-19 years clinically diagnosed to have depression who attended sickle cell clinics from October 2023 to March 2024. Experiences of adolescents with depression were obtained through in-depth interviews which were recorded through audio and hand written notes. Themes that were studied and analyzed to ascertain the experience of these adolescents included; health related stigma, acceptance of living with SCA, coping mechanisms to deal with depression and social support.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults\u003c/strong\u003e: A total of 6 participants with SCA and depression were interviewed. Majority of adolescents experienced loneliness and isolation and had not fully accepted the reality of living with SCA. Adaptive and maladaptive behaviors were observed as the coping mechanisms when depressed. Social challenges experienced included bullying, name calling and fears of betrayal. Their main sources of support were parents, friends and teachers.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusion\u003c/strong\u003e: Feelings of loneliness and isolation were commonly experienced by depressed adolescents. Social support, coping mechanisms, and acceptance play pivotal roles in their well-being. Understanding these experiences can inform targeted interventions and support systems for this vulnerable population.\u003c/p\u003e","manuscriptTitle":"Lived Experiences of Clinical Depression Among Adolescents With Sickle Cell Anemia in Dar-es-salaam, Tanzania: A Qualitative Study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-09-22 06:07:37","doi":"10.21203/rs.3.rs-7293105/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":"c8e3e7e4-91fe-46f4-96a9-29f19de92233","owner":[],"postedDate":"September 22nd, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2025-09-22T06:07:37+00:00","versionOfRecord":[],"versionCreatedAt":"2025-09-22 06:07:37","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-7293105","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-7293105","identity":"rs-7293105","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}