Quality of life among patients with Sickle Cell Disease and their parents in Democratic Republic of Congo, qualitative study

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In Democratic Republic of Congo (DRC) Sickle cell disease is a serious public health issue aggravated by a limited access to health and social support. health and social support. SCD has an effect on individual overall well-being and quality of life. It has a negative impact on a patient's social life, schoolwork, physical and mental health, and career. In some cases, those who are impacted may have mental health conditions including grief, fear about dying, and denial of their illness. Method This qualitative study set out to assess the quality of life of children with SCD and their parents attending clinic ‘’Petite Clinique amis des enfants’’. For this study, we used in-depth interview. Results 12 in-depth interviews were conducted including 7 parents of children with SCD and 5 teenagers’ patients. Five major interview themes emerged: ( 1 ) discovery circumstances, ( 2 ) Experience of sickle cell patients and/or their parents, ( 3 ) Repercussions of the disease in the lives of sickle cell patients, ( 4 ) Perceptions in relation to the disease, ( 5 ) cares issues and needs. Conclusion The findings point out the significance of creating culturally and locally relevant interventions to enhance access to healthcare, lower social and cultural barriers, foster better understanding of the disease, and integrate a model of routine follow-up for sickle cell patients, either in other secondary structures, which implies its integration within the DRC's health system. sickle cell disease quality of life Democratic Republic of Congo BACKGROUND Sickle cells disease (SCD) is one of the most prevalent hemoglobinopathies. It’s brought on by mutation in the hemoglobin gene, which causes the red blood cells to become rigid and sticky, plugging the tiny blood vessels ( 1 ). It leads to several issues including anemia, painful episodes, and an increased risk of infections. It is associated to acute sickness episodes and gradual organ damage ( 2 ). It estimated that around 300,000 children are born with SCD annually worldwide, with the highest percentage of cases in sub-Saharan countries (75%) ( 1 , 3 , 4 ). In Uganda, 15,000 babies are born with sickle cell disease, while in Tanzania, 11,000 newborns are reported to have SCD at birth (the 5th most prevalent country worldwide). In Democratic Republic of Congo (DRC), SCD national program has been established in 2001(PNLCD in French) and estimates suggest that 25 to 30% of the Congolese population in the AS heterozygous form and 2 to 3% of SS homozygous newborns( 6 )( 7 ), In addition, studies report that almost 75% of SS children with SCD die before celebrating their 5th birthday ( 8 ). SCD has an effect on individual overall well-being and quality of life. It has a negative impact on a patient's social life, schoolwork, physical and mental health, and career. In some cases, those who are impacted may have mental health conditions including grief, fear about dying, and denial of their illness. Also, people with SCD frequently experience issues with self-esteem and anxieties about their bodies as a result of poor development and other anomalies, which limits their ability to communicate with their healthy peers ( 9 , 10 ). Furthermore, poor or no self-esteem has restricted the capacity of people with SCD to build meaningful relationships. Several studies reported frequent hospitalization interferes with children's attendance at school, which negatively affects their academic achievement and educational standing ( 5 , 10 ). In DRC Sickle cell disease is a serious public health issue, Despite the setting up of a national SCD prevention program and the severity of this fatal and severely debilitating disorder few have been done leading to a lack of knowledge among caregivers, families and community. It is a serious, long-term issue with serious effects for families and overcrowded communities ( 11 , 12 ). This severe stress puts into question the social structure as well as the cohesiveness of families ( 13 ). There is a paucity of data in the DRC regarding the effect of SCD on the quality of life of children and their parents. This aims to assess quality of life among children with SCD and their parents in DRC. METHODS Study setting The study was performed at the ‘’Petite Clinique Amis des Enfants ‘’in Bukavu, South-Kivu, East of DRC. The "Petite Clinique Amis des Enfants», medical institution in South Kivu to implement SCD treatment into its program of activities and deliver free medical care to sickle cell disease patients since it was founded in June 2018. La Petite Clinique Ami des Enfants, a facility with a capacity of 10 beds, has been integrated into the DRC's national health policy with approval from the provincial ministry in charge of health and the provincial health division of South Kivu. The facility is a day hospital which organizes the follow-up of children with sickle cell anemia. Besides from disease episodes, children undergo screening weekly or bimonthly, depending on their health. The center admits annually an average of 180 children with SCD, mainly from the city of Bukavu and secondarily from other regions around the province of South Kivu. The structure was chosen because it integrates this frequent monitoring approach, which is not done in several other structures in the province or around the country. Furthermore, conducting the study within this structure allowed us to get insight into patients' perspectives and experiences before and after beginning to be monitored inside the Petite Clinique. Study design, period, and participants We conducted and explorative qualitative approach to assess the quality of life of children with SCD and their parents between December 2022 and March 2023. During this period, a total of 12 persons, including 7 parents of children with SCD and 5 teenagers was included. Inclusion criteria Sickle cell patient attending clinic ‘’Petite Clinique Amis des Enfants’’ Sickle cell patient benefits from therapy at ‘’Petite Clinique Amis des Enfants’’ Parent with SCD children followed at ‘’Petite Clinique Amis des Enfants’’ Parent of SCD children who agreed to participate in the research Adult SCD patient who agreed to participate in the research EXCLUSION CRITERIA Parents of SCD children who refused to participate in the research Adult SCD patient who refused to participate in the research Data collection Children and parents were asked to come to the clinic for an in-depth interview. Based on literature review and investigators’ experiences, we created a French interview guide to help us conduct individual interviews that are semi-structured with teenagers with sickle cell disease or their parents in order to gather qualitative data. These in-depth interviews were done in Swahili, the interviewees' native tongue, while attempting to maintain as much of the original questions' meaning as possible. These interviews, which lasted an average of 40 minutes, were performed by an investigator with a master's degree in public health and prior experience with qualitative research techniques. Sony-type dictaphones were used to record qualitative data as audio files. Two individuals—a third-year medical student and a person with a bachelor's degree or BAC + 5 in public health—then converted these audio recordings into Word documents. Data analysis To lessen the impact of subjectivity and adhere to the requirement of consistency (inter-evaluator reliability, inter rater reliability, or IRR), these data were analyzed by two specialists in qualitative techniques. Following a qualitative, deductive, and inductive analysis, we added two more themes (the second and fourth, respectively; see the list below) by grouping various texts that were transcribed into axial codes, sub-themes, and themes. This was done by starting with the thematic framework, which was made up of four main themes related to our research objective. we ended up with the following 5 main themes: ( 1 ) Circumstances of discovery, ( 2 ) Experience of sickle cell patients and/or their parents, ( 3 ) Repercussions of the disease in the lives of sickle cell patients, ( 4 ) Perceptions in relation to the disease, ( 5 ) Needs and problems related to management In order to illustrate certain sub-themes in the presentation of the results and the conversation, verbatims or phrase fragments from the respondents' papers have been chosen. We used two elements to codify the verbatims and ensure the anonymity of the interviewees, based on the consolidated criteria for the reporting of qualitative research (COREQ) (Ref), in order to guarantee the confidentiality of the interviewees when quoting these verbatims: i) the first letter only indicates whether it is a teenager or a parent, either A or P, and ii) the two other following digits indicate the respondent's number according to the order of the interviewed, for example A01 for Teenager number 01, etc. Rigor and Trustworthiness The criteria of credibility, reliability, transferability and consistency were applied to ensure the rigor of this study. We utilized referential validity to see whether the findings are consistent with previous published studies or ideas, and phenomenological validity to evaluate whether the respondents' responses actually corresponded to the questions posed. Due to the fact that the majority of responders were able to understand Swahili, we made an effort to phrase the question exactly as intended in order to minimize any potential misunderstandings. Consistency or internal validity was ensured by the fact that we looked through a variety of data sources and conducted multiple interviews until the same questions and answers repeatedly released, as guided by the saturation principle. The inter-rater reliability (IRR) criterion, which can be used to ensure that the results are independent of the researcher's beliefs or to lessen subjectivity, was observed in the sense that the analysis of these data was carried out by two experts in qualitative methods, to lessen the effect of subjectivity and respect this IRR. In light of this, the analytic team's consensus allowed for the creation of pertinent codes, sub-themes, and themes. Due to the fact that our analyses clearly showed the connection between the context and the problem under study. By using the verbatims of the participants, we were able to respect two aspects of transferability: the transferability of the contexts (because our analyses clearly showed how the context and the problem under study are related), and the transferability of the sample (because the sample was carefully chosen, targeted, and representative of the problem and/or the reality under study). Thus, it is now clear from our verbatims that each participant in the research is either a sickle cell patient or a close family of a sickle cell patient, and as such, has access to reliable information. Thus, these findings could be applicable to how other sickle cell patients from different areas see them. ETHICAL CONSIDERATIONS Before initiating data collection, the study received institutional approval, ethics committee approval, and informed consent from the participants. None of the 12 persons refused to participate. RESULTS Table1. Sociodemographic characteristics Variables n (%) Med (Min-Max) Status of the interviewee (n=12) Teenager 5 (41,7) Parent 7 (58,3) Age of teenagers (year, n=5) 19(18-23) Age of Parents (year, n=7) 39(29-72) Sex of teenagers (n=5) Female 3 (60) Male 2 (40) Sex of Parents (n=7) Female 5 (71,4)) Male 2 (28,6) Teenager’s degree of studies (n=5) Pupils 2 (40) Students 3 (60) Nombre frères et sœurs (n=10) 7(3-10) Parents’ Profession (n=7) Household/trader 5 (71,4) Humanitarian 1 (14,3) Retirement 1 (14,3)) Parents’ degree of studies (n=6) Primary 1 (16,7) Secondary 3 (50) Higher/university 2 (33,3) We conducted in-depth interviews with 12 participants, including 7 parents of children with SCD and 5 teenagers. These parents had not previously had the opportunity to express their thoughts about SCD. The teenagers interviewed, comprising two pupils and three students, had an average age of 20 years. The parents were 42 years old on average, and the majority were housewives and/or traders with a secondary education. The 20 teenagers examined were a mix of males and girls, with two schoolchildren and three students among them(table 1). The parents were 42 years old on average, and the majority were housewives and/or traders with a secondary education. From the analysis of interviews, five themes of the impacts of SCD on the quality of life of the children with SCD and the parents were revealed, these were: (1) discovery circumstances, (2) Experience of sickle cell patients and/or their parents, (3) Repercussions of the disease in the lives of sickle cell patients, (4) Perceptions in relation to the disease, (5) cares issues and needs. 2. Discovery circumstances 2.1. Notions of recurrent crises and repeated transfusion in early childhood The respondents in this survey described having had a recurrent crisis or frequent hospitalization in their early years. Two participants said: ‘’… Due to the fact that I fell ill frequently, the parents eventually found out that I had sickle cell disease. They told me when I was 10 after I asked them why I was regularly sick.’’adolescent 02 and 05 2.2. Concept of family history Parents claimed to have seen this illness in their young kid, but some also had a parent who had the condition or a prior child. ''…Because his mother also had sickle cell illness, you know... I dated without realizing it was a chronic illness. I began dating his mother after she gave birth to the first child, a girl, who was unaffected. The second child, also unaffected, followed by the third kid, a male, who was born with this condition and passed away six months ago. '' and ''..., we found out he also had sickle cell disease when he was two, and we started treating him.’’ Parent 01 3. Experience of sickle cell patients and/or their parents 3.1. Denying and minimizing his disease Given social pressures, some patients with sickle cell disease might hide or deny their condition. They face difficulty because they refuse to embrace their illness. 3.2. Using traditional practitioners Some sickle cell patients have occasionally turned to traditional Practitioners as part of their treatment plans: ‘’…Traditional practitioners visited us when I was younger and gave us medications, but they had no impact.’’ 4. Repercussions of the disease in the lives of sickle cell patients 4.1. School dropout or delay In contrast to children without sickle cell disease, the patient with sickle cell disease has a history of frequent absences from school, which delays his completion of his education: ''... I was studying, but this sort of issue hindered me from finishing the year. (Reference: Adolescent 02). ‘’ I truly enjoy learning, but if there are crises, I may skip two or three weeks of classes, which can lead to failures. In my third year of primary school, there were too many crises, so I had to drop out and restart the next year’’ (reference: Adolescent 03) What contributes to human development to be delayed or academic failure to occur in sickle cell patients. 4.2. Financial difficulties Families lack the resources to get their children treated due to the abrupt development of symptoms (crises)."...You see this disease is sudden; I can get sick, but I don't have the money to pay for either medicine or hospital care; that was before we came here. » (Reference Parent 02) 4.3. Spouse’s discouragement or employment difficulties Teenagers with sickle cell disease are concerned about their sickness, particularly the chronicity of the disease. Similarly, ladies are terrified when they project themselves into the lives of the marriage, focusing on the responses of their husbands as well as the health of their future children. ''There are a lot of anxieties, we worry if one day we will get married and have to inform our spouse or how, or how the children will be if they will also be SS or how''. (Reference Adolescent02) Teenage females with sickle cell illness fear that their prospective spouses may become disappointed by the frequent episodes. ‘’…Because of the frequent crises, he may get depressed and lose motivation, which prevents him from working and/or causes him to spend a lot of time in the hospital’’. (Reference Adolescent 03) 4.4. Discrimination Subjects with sickle cell illness would face humiliation and discrimination in society, in addition to the difficulties of finishing education and repeated school failures. "...people laugh at me because I look like I have HIV; at school, when I have crises, they say it's epilepsy." (Reference Adolescent 04). They are also marginalized and discriminated a in society ''...yes, often among young people when they have to go for a walk or make visits, they say that I can't go there because I'm not that strong, but I also want to go there because they're afraid that I might have a crisis halfway through stuff like that’’. (Reference Adolescent01) 5. Perceptions in relation to the disease 5.1. Misunderstanding In this perspective, we have the patient who, when the disease was first announced, was unaware that it even existed. However, as she grew older and became aware of the disease's meaning, she became stressed and frustrated because, while other children her age were in good health, she was required to take medication and visit the hospital frequently. "...a little stressed, especially when you think you have this disease and the others don't," so I could comprehend that it was normal and there was nothing to do thanks to the encouragement and counsel we received. (Reference: Adolescent 02) 6. Care issues and needs 6.1. Global care The aspect of holistic treatment, according to the experiences of sickle cell patients and their parents, is dependent on the structures. The quality of treatment therefore depends on the structures since they observed that patients benefit from psychological support and frequent check-ups in particular health structures, which might improve their quality of life. The clinic « la petite Clinique amis des enfants » is use of a regular follow-up plan for sickle cell patients has significantly improved their quality of life. There were various issues that had remained to be addressed before they joined the « la petite Clinique amis des enfants ». He received just emergency care, with no medical follow-up. ''…The level of treatment varies according to the facility since in certain hospitals, The standard of care varies depending on the hospital, as some allow for frequent check-ups (every two months) and psychosocial assistance for the subjects. I perform the check-up here at the children's clinic, but I can always go to the hospital if there are emergencies before this date.’’ (Reference: parent 03) 6.2. Frequency of consultations and medical follow-up The majority of parents stated that they had previously visited health institutions for consultation but had not gotten medical follow-up care. Most of the time, they just provided emergency care with little follow-up, leaving their kids vulnerable to recurring crisis. They said that the follow-up and routine check-ups they had gotten at the « la petite Clinique amis des enfants » had improved the health status of their kids. 6.3. Care quality In terms of care quality, the experience of sickle cell patients treated in the « la petite Clinique amis des enfants » indicates satisfaction with the infrastructure; yet, some parents are insisting on the provision of specific vaccines and drugs to enhance the situation. According to a parent, they include the availability of Pneumo-23 vaccinations as well as the background therapy Oxbryta®. “…I also recommended the doctors here to bring...we parents may even purchase this vaccination. Pneumovax-23 makes a significant contribution to the youngster’’. (Reference Parent 02) DISCUSSION We aimed to assess quality of life among children with SCD and their parents in Democratic Republic of Congo, particularly in the one referral clinic of SCD, located in the BUKAVU city-South kivu. Although DRC is one of the major countries with the highest number of newborns with sickle cell disease (42,000)( 14 , 15 ), SCD is still poorly understood compare to infectious diseases or malnutrition by caregivers more over its impact on quality of life of patients and their relatives it’s often not explored. This study unveils five themes, which are discovery circumstances; parents and /or sickle cell sufferers’ life; effects of the illness on sickle cell suffers’ life; illness perceptions; care issues and needs. Children with SCD suffer frequent infections and vaso-occlusive crises that require recurrent hospitalization and transfusions, which has been also reported in this study. Parents and adolescents reported that it was by this circumstance that they discovered the condition. These findings were reported in previous studies in which among discovery circumstances vaso-occlusive crises, infections episodes and severe anemia( 16 ). Acceptance of the disease by the family and patients helped to increase prognostic of SCD and quality of life, many reported that they used to either minimize or denying the disease, while they prefer herbal medicines as a part of their treatment plans. Other studies done in Uganda and in DRC found the same results, this may be correlated by the fact that most of families faced diffiulties to pay hospital bills ( 1 )( 17 ) Around the world, it was reported that children with SCD faced school dropout, absenteism which may delay their school completion or leading to poor performance, furthermore, some experienced rejection from other children during social activities. This humiliation and stigimatization have been found in previous studies done in the regions and in another continent. ( 5 , 11 , 16 , 18 – 20 ) Adolescents, particularly girls, were terrified when they project themselves into the lives of the marriage, focusing on the responses of their husbands as well as the health of their future children ; these findings were also reported in other studies where their low level of education and perceptions reduce, comparing SCD with a curse their understanding of the disease( 1 ) ; which may necessitate community awareness about pre-marital test and transmission methods due to the risk of divorce and rejection when couple have a children with SCD.( 5 , 16 , 17 , 20 – 23 ) Parents and adolescents reported the risk of unemployement or underemployement due to frequent episodes of hospital admissions or to stigmatization, in country like DRC where people pay out of pocket for healthcare, this may lead to inability to access and afford quality of care, resulting in an increased risk of complications and decreased quality of life for patients with SCD, as reported by other studies( 24 , 25 ). Parents reported that the level of treatment varies according to the facility since in certain hospitals, the standard of care varies depending on the hospital, as some allow for frequent check-ups (every two months) and psychosocial assistance for the subjects .While the universal health coverage initiative is already in place in the majority of developed countries, allowing for better monitoring of chronic pathologies like sickle cell disease, it is not yet in place in developing countries like the Democratic Republic of the Congo, resulting in a significant financial burden for families as well as patients and those in need despite the establishement of a national program. The study limitations include referral bias, small sample size from a single area interviewed which may affect our ability to generalize the findings. Also, the interview was conducted in Swahili, which may include a selection bias. We recommend future research on larger sample size unable to validate the findings of this study. This study could include several social groups in order to reduce risk of selection bias. CONCLUSION The study’s conclusion emphasizes the significance of considering a number of criteria in order to enhance the treatment and quality of life for teenagers with sickle cell disease. The findings point out the significance of creating culturally and locally relevant interventions to enhance access to healthcare, lower social and cultural barriers, foster better understanding of the disease, and integrate a model of routine follow-up for sickle cell patients, either in other secondary structures, which implies its integration within the DRC's health system. Abbreviations BAC Baccalauréat DRC Democratic Republic of Congo PNLCD Programme National de Lutte contre la Drépanocytose SCD Sickle cells disease Declarations Acknowledgments We are thankful to the entire team of doctors and nurses who participated in the management of those children at clinic ‘’Petite clinique Amis des enfants’’. We also express our gratitude to the parents who agreed to participate and for the publication of this article. Finally, we extend our utmost thanks to Dr FEZA BIANGA for her support. Funding N/A Availability of data and materials All data generated or analyzed during this study are included in this article. Contributors ABZ, ELO produced the original concept of the article, executed the field study (subject recruitment and data collection), and had primary responsibility for the first draft of the manuscript. NMN contributed to the enrichment the manuscript. RKM validated statistical data analysis, contributed to the intellectual content of the discussion. SWO contributed to the intellectual content of the discussion. All authors read and approved the final manuscript. Ethics approval and consent to participate The parents provided signed informed consent for participation in the study by written signature. All procedures performed in this study were approved by the Institutional Ethics Committee of the Université Officielle de Bukavu and were in accordance with the 1964 Helsinki declaration and its later amendments. Consent for publication The parents provided an informed consent for publication of this study by written signature. Competing interests The authors declare that they have no competing interests. References Tusuubira SK, Nakayinga R, Mwambi B, Odda J, Kiconco S, Komuhangi A. Knowledge, perception and practices towards sickle cell disease: A community survey among adults in Lubaga division, Kampala Uganda. BMC Public Health. 2018;18(1). Sickle Cell Disease. - What Is Sickle Cell Disease? | NHLBI, NIH. 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J Adv Nurs. 2016;72(6):1441–51. Kambasu DM, Rujumba J, Lekuya HM, Munube D, Mupere E. Health-related quality of life of adolescents with sickle cell disease in sub-Saharan Africa: A cross-sectional study. BMC Hematol [Internet]. 2019;19(1):1–9. Available from: https://bmchematol.biomedcentral.com/articles/ 10.1186/s12878-019-0141-8 . Wesley KM, Zhao M, Carroll Y, Porter JS. Caregiver Perspectives of Stigma Associated With Sickle Cell Disease in Adolescents. J Pediatr Nurs. 2016;31(1):55–63. Available from: https://pubmed.ncbi.nlm.nih.gov/26534838/ . Bulgin D, Tanabe P, Jenerette C. Stigma of Sickle Cell Disease: A Systematic Review. Issues Ment Health Nurs [Internet]. 2018 Aug 3 [cited 2023 May 30];39(8):675–86. Available from: https://pubmed.ncbi.nlm.nih.gov/29652215/ . Dampier C, Lieff S, LeBeau P, Rhee S, McMurray M, Rogers Z, et al. Health-related quality of life in children with sickle cell disease: a report from the comprehensive sickle cell centers clinical trial consortium. Pediatr Blood Cancer. 2010;55(3):485–94. Amaeshi L, Kalejaiye OO, Ogamba CF, Adelekan Popoola F, Adelabu YA, Ikwuegbuenyi CA et al. Health-Related Quality of Life Among Patients with Sickle Cell Disease in an Adult Hematology Clinic in a Tertiary Hospital in Lagos, Nigeria. Cureus. 2022. 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-3715654","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":260764119,"identity":"9bc68f76-b22d-41a5-a3c1-839674a346c2","order_by":0,"name":"Adrien BURUME ZIGASHANE","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA6UlEQVRIiWNgGAWjYFCCBIYDDCAEAh+AmI2dFC2MM0BamInQwgDTwswDJglo4G/PfXjg4447idtnZCc+tvm1TZ6PmYHxw8cc3Fokzjw3ODjzzLPEOTdyNxvn9t02bGNmYJacuQ2PNTfSGA7zth1OnCGRu006t+c2I1ALGzMvHi3yIC1/IVq2/7bsuW1PUIsBSAsj1BZmhh+3EwlqMTzzjOFgb9sz4xk8bzdL9jbcTm5jZmzG6xe542nMH3623ZGdwZ678cOPP7dt57c3H/zwEZ/3UQBjG5hsIFY9CPwhRfEoGAWjYBSMFAAAS/ZZ5C+WP9sAAAAASUVORK5CYII=","orcid":"","institution":"Hopital Provincial Général de Référence de Bukavu","correspondingAuthor":true,"submittingAuthor":false,"prefix":"","firstName":"Adrien","middleName":"BURUME","lastName":"ZIGASHANE","suffix":""},{"id":260764120,"identity":"1494dbab-f0d8-42ea-964f-dd34669a4c12","order_by":1,"name":"Emmanuel LURHANGIRHE ONGEZI","email":"","orcid":"","institution":"Ecole Régionale de Santé Publique","correspondingAuthor":false,"submittingAuthor":false,"prefix":"","firstName":"Emmanuel","middleName":"LURHANGIRHE","lastName":"ONGEZI","suffix":""},{"id":260764121,"identity":"2f0b93d5-1784-49d2-b230-22dfaf7d348c","order_by":2,"name":"Nash MWANZA NYANGUNIA","email":"","orcid":"","institution":"Petite clinique Amis des Enfants","correspondingAuthor":false,"submittingAuthor":false,"prefix":"","firstName":"Nash","middleName":"MWANZA","lastName":"NYANGUNIA","suffix":""},{"id":260764122,"identity":"6c20c290-b08e-4d35-bf49-2eb4d100e180","order_by":3,"name":"Stanislas WEMBONYAMA OKITOTSHO","email":"","orcid":"","institution":"University of Lubumbashi","correspondingAuthor":false,"submittingAuthor":false,"prefix":"","firstName":"Stanislas","middleName":"WEMBONYAMA","lastName":"OKITOTSHO","suffix":""},{"id":260764123,"identity":"6a9c639d-1290-45c3-91ca-f7274178ad48","order_by":4,"name":"Richard MBUSA KAMBALE","email":"","orcid":"","institution":"Université Catholique de Bukavu","correspondingAuthor":false,"submittingAuthor":false,"prefix":"","firstName":"Richard","middleName":"MBUSA","lastName":"KAMBALE","suffix":""}],"badges":[],"createdAt":"2023-12-06 14:59:20","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-3715654/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-3715654/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":59000265,"identity":"5729db16-4169-4c8a-8d11-fc4c7d974d87","added_by":"auto","created_at":"2024-06-25 07:04:41","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":495684,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-3715654/v1/fc39121b-0363-4fed-8b3d-4cbb23af29e8.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"\u003cp\u003eQuality of life among patients with Sickle Cell Disease and their parents in Democratic Republic of Congo, qualitative study\u003c/p\u003e","fulltext":[{"header":"BACKGROUND","content":"\u003cp\u003eSickle cells disease (SCD) is one of the most prevalent hemoglobinopathies. It\u0026rsquo;s brought on by mutation in the hemoglobin gene, which causes the red blood cells to become rigid and sticky, plugging the tiny blood vessels (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eIt leads to several issues including anemia, painful episodes, and an increased risk of infections. It is associated to acute sickness episodes and gradual organ damage (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eIt estimated that around 300,000 children are born with SCD annually worldwide, with the highest percentage of cases in sub-Saharan countries (75%) (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e, \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eIn Uganda, 15,000 babies are born with sickle cell disease, while in Tanzania, 11,000 newborns are reported to have SCD at birth (the 5th most prevalent country worldwide).\u003c/p\u003e \u003cp\u003eIn Democratic Republic of Congo (DRC), SCD national program has been established in 2001(PNLCD in French) and estimates suggest that 25 to 30% of the Congolese population in the AS heterozygous form and 2 to 3% of SS homozygous newborns(\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e)(\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e), In addition, studies report that almost 75% of SS children with SCD die before celebrating their 5th birthday (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eSCD has an effect on individual overall well-being and quality of life. It has a negative impact on a patient's social life, schoolwork, physical and mental health, and career. In some cases, those who are impacted may have mental health conditions including grief, fear about dying, and denial of their illness. Also, people with SCD frequently experience issues with self-esteem and anxieties about their bodies as a result of poor development and other anomalies, which limits their ability to communicate with their healthy peers (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e). Furthermore, poor or no self-esteem has restricted the capacity of people with SCD to build meaningful relationships. Several studies reported frequent hospitalization interferes with children's attendance at school, which negatively affects their academic achievement and educational standing (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eIn DRC Sickle cell disease is a serious public health issue, Despite the setting up of a national SCD prevention program and the severity of this fatal and severely debilitating disorder few have been done leading to a lack of knowledge among caregivers, families and community. It is a serious, long-term issue with serious effects for families and overcrowded communities (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e, \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e). This severe stress puts into question the social structure as well as the cohesiveness of families (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThere is a paucity of data in the DRC regarding the effect of SCD on the quality of life of children and their parents. This aims to assess quality of life among children with SCD and their parents in DRC.\u003c/p\u003e"},{"header":"METHODS","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eStudy setting\u003c/h2\u003e \u003cp\u003eThe study was performed at the \u0026lsquo;\u0026rsquo;Petite Clinique Amis des Enfants \u0026lsquo;\u0026rsquo;in Bukavu, South-Kivu, East of DRC. The \"Petite Clinique Amis des Enfants\u0026raquo;, medical institution in South Kivu to implement SCD treatment into its program of activities and deliver free medical care to sickle cell disease patients since it was founded in June 2018. La Petite Clinique Ami des Enfants, a facility with a capacity of 10 beds, has been integrated into the DRC's national health policy with approval from the provincial ministry in charge of health and the provincial health division of South Kivu. The facility is a day hospital which organizes the follow-up of children with sickle cell anemia. Besides from disease episodes, children undergo screening weekly or bimonthly, depending on their health. The center admits annually an average of 180 children with SCD, mainly from the city of Bukavu and secondarily from other regions around the province of South Kivu.\u003c/p\u003e \u003cp\u003eThe structure was chosen because it integrates this frequent monitoring approach, which is not done in several other structures in the province or around the country. Furthermore, conducting the study within this structure allowed us to get insight into patients' perspectives and experiences before and after beginning to be monitored inside the Petite Clinique.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003eStudy design, period, and participants\u003c/h2\u003e \u003cp\u003e We conducted and explorative qualitative approach to assess the quality of life of children with SCD and their parents between December 2022 and March 2023. During this period, a total of 12 persons, including 7 parents of children with SCD and 5 teenagers was included.\u003c/p\u003e \u003cp\u003e \u003cb\u003eInclusion criteria\u003c/b\u003e \u003c/p\u003e \u003cp\u003e\u003cul\u003e\u003cli\u003e\u003cp\u003eSickle cell patient attending clinic \u0026lsquo;\u0026rsquo;Petite Clinique Amis des Enfants\u0026rsquo;\u0026rsquo;\u003c/p\u003e\u003c/li\u003e\u003cli\u003e\u003cp\u003eSickle cell patient benefits from therapy at \u0026lsquo;\u0026rsquo;Petite Clinique Amis des Enfants\u0026rsquo;\u0026rsquo;\u003c/p\u003e\u003c/li\u003e\u003cli\u003e\u003cp\u003eParent with SCD children followed at \u0026lsquo;\u0026rsquo;Petite Clinique Amis des Enfants\u0026rsquo;\u0026rsquo;\u003c/p\u003e\u003c/li\u003e\u003cli\u003e\u003cp\u003e Parent of SCD children who agreed to participate in the research\u003c/p\u003e\u003c/li\u003e\u003cli\u003e\u003cp\u003eAdult SCD patient who agreed to participate in the research\u003c/p\u003e\u003c/li\u003e\u003c/ul\u003e\u003c/p\u003e \u003cp\u003e \u003cb\u003eEXCLUSION CRITERIA\u003c/b\u003e \u003c/p\u003e \u003cp\u003e\u003cul\u003e\u003cli\u003e\u003cp\u003eParents of SCD children who refused to participate in the research\u003c/p\u003e\u003c/li\u003e\u003cli\u003e\u003cp\u003eAdult SCD patient who refused to participate in the research\u003c/p\u003e\u003c/li\u003e\u003c/ul\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eData collection\u003c/h2\u003e \u003cp\u003eChildren and parents were asked to come to the clinic for an in-depth interview. Based on literature review and investigators\u0026rsquo; experiences, we created a French interview guide to help us conduct individual interviews that are semi-structured with teenagers with sickle cell disease or their parents in order to gather qualitative data. These in-depth interviews were done in Swahili, the interviewees' native tongue, while attempting to maintain as much of the original questions' meaning as possible. These interviews, which lasted an average of 40 minutes, were performed by an investigator with a master's degree in public health and prior experience with qualitative research techniques.\u003c/p\u003e \u003cp\u003eSony-type dictaphones were used to record qualitative data as audio files. Two individuals\u0026mdash;a third-year medical student and a person with a bachelor's degree or BAC\u0026thinsp;+\u0026thinsp;5 in public health\u0026mdash;then converted these audio recordings into Word documents.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003eData analysis\u003c/h2\u003e \u003cp\u003eTo lessen the impact of subjectivity and adhere to the requirement of consistency (inter-evaluator reliability, inter rater reliability, or IRR), these data were analyzed by two specialists in qualitative techniques. Following a qualitative, deductive, and inductive analysis, we added two more themes (the second and fourth, respectively; see the list below) by grouping various texts that were transcribed into axial codes, sub-themes, and themes. This was done by starting with the thematic framework, which was made up of four main themes related to our research objective.\u003c/p\u003e \u003cp\u003ewe ended up with the following 5 main themes: (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e) Circumstances of discovery, (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e) Experience of sickle cell patients and/or their parents, (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e) Repercussions of the disease in the lives of sickle cell patients, (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e) Perceptions in relation to the disease, (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e) Needs and problems related to management\u003c/p\u003e \u003cp\u003eIn order to illustrate certain sub-themes in the presentation of the results and the conversation, verbatims or phrase fragments from the respondents' papers have been chosen. We used two elements to codify the verbatims and ensure the anonymity of the interviewees, based on the consolidated criteria for the reporting of qualitative research (COREQ) (Ref), in order to guarantee the confidentiality of the interviewees when quoting these verbatims: i) the first letter only indicates whether it is a teenager or a parent, either A or P, and ii) the two other following digits indicate the respondent's number according to the order of the interviewed, for example A01 for Teenager number 01, etc.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec7\" class=\"Section2\"\u003e \u003ch2\u003eRigor and Trustworthiness\u003c/h2\u003e \u003cp\u003eThe criteria of credibility, reliability, transferability and consistency were applied to ensure the rigor of this study. We utilized referential validity to see whether the findings are consistent with previous published studies or ideas, and phenomenological validity to evaluate whether the respondents' responses actually corresponded to the questions posed. Due to the fact that the majority of responders were able to understand Swahili, we made an effort to phrase the question exactly as intended in order to minimize any potential misunderstandings. Consistency or internal validity was ensured by the fact that we looked through a variety of data sources and conducted multiple interviews until the same questions and answers repeatedly released, as guided by the saturation principle. The inter-rater reliability (IRR) criterion, which can be used to ensure that the results are independent of the researcher's beliefs or to lessen subjectivity, was observed in the sense that the analysis of these data was carried out by two experts in qualitative methods, to lessen the effect of subjectivity and respect this IRR. In light of this, the analytic team's consensus allowed for the creation of pertinent codes, sub-themes, and themes. Due to the fact that our analyses clearly showed the connection between the context and the problem under study. By using the verbatims of the participants, we were able to respect two aspects of transferability: the transferability of the contexts (because our analyses clearly showed how the context and the problem under study are related), and the transferability of the sample (because the sample was carefully chosen, targeted, and representative of the problem and/or the reality under study). Thus, it is now clear from our verbatims that each participant in the research is either a sickle cell patient or a close family of a sickle cell patient, and as such, has access to reliable information. Thus, these findings could be applicable to how other sickle cell patients from different areas see them.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eETHICAL CONSIDERATIONS\u003c/h2\u003e \u003cp\u003eBefore initiating data collection, the study received institutional approval, ethics committee approval, and informed consent from the participants. None of the 12 persons refused to participate.\u003c/p\u003e \u003c/div\u003e"},{"header":"RESULTS","content":"\u003cp\u003eTable1. Sociodemographic characteristics\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd width=\"45.21072796934866%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eVariables\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.92337164750958%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003en (%)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"34.86590038314176%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;Med (Min-Max)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"45.21072796934866%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eStatus of the interviewee (n=12)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.92337164750958%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"34.86590038314176%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"45.21072796934866%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp;Teenager\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.92337164750958%\" valign=\"top\"\u003e\n \u003cp\u003e5 (41,7)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"34.86590038314176%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"45.21072796934866%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp;Parent\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.92337164750958%\" valign=\"top\"\u003e\n \u003cp\u003e7 (58,3)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"34.86590038314176%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"45.21072796934866%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.92337164750958%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"34.86590038314176%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"45.21072796934866%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eAge of teenagers (year, n=5)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.92337164750958%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"34.86590038314176%\" valign=\"top\"\u003e\n \u003cp\u003e19(18-23)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"45.21072796934866%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.92337164750958%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"34.86590038314176%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"45.21072796934866%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eAge of Parents (year, n=7)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.92337164750958%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"34.86590038314176%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;39(29-72)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"45.21072796934866%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.92337164750958%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"34.86590038314176%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"45.21072796934866%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eSex of teenagers (n=5)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.92337164750958%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"34.86590038314176%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"45.21072796934866%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp;Female\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.92337164750958%\" valign=\"top\"\u003e\n \u003cp\u003e3 (60)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"34.86590038314176%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"45.21072796934866%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp;Male\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.92337164750958%\" valign=\"top\"\u003e\n \u003cp\u003e2 (40)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"34.86590038314176%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"45.21072796934866%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.92337164750958%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"34.86590038314176%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"45.21072796934866%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eSex of Parents (n=7)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.92337164750958%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"34.86590038314176%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"45.21072796934866%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp;Female\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.92337164750958%\" valign=\"top\"\u003e\n \u003cp\u003e5 (71,4))\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"34.86590038314176%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"45.21072796934866%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp;Male\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.92337164750958%\" valign=\"top\"\u003e\n \u003cp\u003e2 (28,6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"34.86590038314176%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"45.21072796934866%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.92337164750958%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"34.86590038314176%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"45.21072796934866%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eTeenager\u0026rsquo;s degree of studies (n=5)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.92337164750958%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"34.86590038314176%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"45.21072796934866%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp;Pupils\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.92337164750958%\" valign=\"top\"\u003e\n \u003cp\u003e2 (40)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"34.86590038314176%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"45.21072796934866%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp;Students\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.92337164750958%\" valign=\"top\"\u003e\n \u003cp\u003e3 (60)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"34.86590038314176%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"45.21072796934866%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.92337164750958%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"34.86590038314176%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"45.21072796934866%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eNombre fr\u0026egrave;res et s\u0026oelig;urs (n=10)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.92337164750958%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"34.86590038314176%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp; 7(3-10)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"45.21072796934866%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.92337164750958%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"34.86590038314176%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"45.21072796934866%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eParents\u0026rsquo; Profession (n=7)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.92337164750958%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"34.86590038314176%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"45.21072796934866%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp; Household/trader\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.92337164750958%\" valign=\"top\"\u003e\n \u003cp\u003e5 (71,4)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"34.86590038314176%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"45.21072796934866%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp;Humanitarian\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.92337164750958%\" valign=\"top\"\u003e\n \u003cp\u003e1 (14,3)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"34.86590038314176%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"45.21072796934866%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp;Retirement\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.92337164750958%\" valign=\"top\"\u003e\n \u003cp\u003e1 (14,3))\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"34.86590038314176%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"45.21072796934866%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.92337164750958%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"34.86590038314176%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"45.21072796934866%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;Parents\u0026rsquo; degree of studies (n=6)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.92337164750958%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"34.86590038314176%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"45.21072796934866%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp;Primary\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.92337164750958%\" valign=\"top\"\u003e\n \u003cp\u003e1 (16,7)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"34.86590038314176%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"45.21072796934866%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp;Secondary\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.92337164750958%\" valign=\"top\"\u003e\n \u003cp\u003e3 (50)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"34.86590038314176%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"45.21072796934866%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp;Higher/university\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.92337164750958%\" valign=\"top\"\u003e\n \u003cp\u003e2 (33,3)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"34.86590038314176%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003eWe conducted in-depth interviews with 12 participants, including 7 parents of children with SCD and 5 teenagers. These parents had not previously had the opportunity to express their thoughts about SCD.\u003c/p\u003e\n\u003cp\u003eThe teenagers interviewed, comprising two pupils and three students, had an average age of 20 years. The parents were 42 years old on average, and the majority were housewives and/or traders with a secondary education.\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe 20 teenagers examined were a mix of males and girls, with two schoolchildren and three students among them(table 1). The parents were 42 years old on average, and the majority were housewives and/or traders with a secondary education.\u003c/p\u003e\n\u003cp\u003eFrom the analysis of interviews, five themes of the impacts of SCD on the quality of life of the children with SCD and the parents were revealed, these were: (1) discovery circumstances, (2) Experience of sickle cell patients and/or their parents, (3) Repercussions of the disease in the lives of sickle cell patients, (4) Perceptions in relation to the disease, (5) cares issues and needs.\u003c/p\u003e\n\u003cp\u003e2. Discovery circumstances\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e2.1. Notions of recurrent crises and repeated transfusion in early childhood\u003c/p\u003e\n\u003cp\u003eThe respondents in this survey described having had a recurrent crisis or frequent hospitalization in their early years. Two participants said: \u0026lsquo;\u0026rsquo;\u0026hellip; Due to the fact that I fell ill frequently, the parents eventually found out that I had sickle cell disease. They told me when I was 10 after I asked them why I was regularly sick.\u0026rsquo;\u0026rsquo;adolescent 02 and 05\u003c/p\u003e\n\u003cp\u003e2.2. Concept of family history\u003c/p\u003e\n\u003cp\u003eParents claimed to have seen this illness in their young kid, but some also had a parent who had the condition or a prior child. \u0026apos;\u0026apos;\u0026hellip;Because his mother also had sickle cell illness, you know... I dated without realizing it was a chronic illness. I began dating his mother after she gave birth to the first child, a girl, who was unaffected. The second child, also unaffected, followed by the third kid, a male, who was born with this condition and passed away six months ago. \u0026apos;\u0026apos; and \u0026apos;\u0026apos;..., we found out he also had sickle cell disease when he was two, and we started treating him.\u0026rsquo;\u0026rsquo; Parent 01\u003c/p\u003e\n\u003cp\u003e3. \u0026nbsp; Experience of sickle cell patients and/or their parents\u003c/p\u003e\n\u003cp\u003e3.1. Denying and minimizing his disease\u003c/p\u003e\n\u003cp\u003eGiven social pressures, some patients with sickle cell disease might hide or deny their condition. They face difficulty because they refuse to embrace their illness.\u003c/p\u003e\n\u003cp\u003e3.2. Using traditional practitioners\u003c/p\u003e\n\u003cp\u003eSome sickle cell patients have occasionally turned to traditional Practitioners as part of their treatment plans: \u0026lsquo;\u0026rsquo;\u0026hellip;Traditional practitioners visited us when I was younger and gave us medications, but they had no impact.\u0026rsquo;\u0026rsquo;\u003c/p\u003e\n\u003cp\u003e4. Repercussions of the disease in the lives of sickle cell patients\u003c/p\u003e\n\u003cp\u003e4.1. School dropout or delay\u003c/p\u003e\n\u003cp\u003eIn contrast to children without sickle cell disease, the patient with sickle cell disease has a history of frequent absences from school, which delays his completion of his education: \u0026apos;\u0026apos;... I was studying, but this sort of issue hindered me from finishing the year. (Reference: Adolescent 02).\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u0026rsquo; I truly enjoy learning, but if there are crises, I may skip two or three weeks of classes, which can lead to failures. In my third year of primary school, there were too many crises, so I had to drop out and restart the next year\u0026rsquo;\u0026rsquo; (reference: Adolescent 03)\u003c/p\u003e\n\u003cp\u003eWhat contributes to human development to be delayed or academic failure to occur in sickle cell patients.\u003c/p\u003e\n\u003cp\u003e4.2. Financial difficulties\u003c/p\u003e\n\u003cp\u003eFamilies lack the resources to get their children treated due to the abrupt development of symptoms (crises).\u0026quot;...You see this disease is sudden; I can get sick, but I don\u0026apos;t have the money to pay for either medicine or hospital care; that was before we came here. \u0026raquo; (Reference Parent 02)\u003c/p\u003e\n\u003cp\u003e4.3. Spouse\u0026rsquo;s discouragement or employment difficulties\u003c/p\u003e\n\u003cp\u003eTeenagers with sickle cell disease are concerned about their sickness, particularly the chronicity of the disease. Similarly, ladies are terrified when they project themselves into the lives of the marriage, focusing on the responses of their husbands as well as the health of their future children. \u0026apos;\u0026apos;There are a lot of anxieties, we worry if one day we will get married and have to inform our spouse or how, or how the children will be if they will also be SS or how\u0026apos;\u0026apos;. \u0026nbsp; (Reference Adolescent02)\u003c/p\u003e\n\u003cp\u003eTeenage females with sickle cell illness fear that their prospective spouses may become disappointed by the frequent episodes. \u0026lsquo;\u0026rsquo;\u0026hellip;Because of the frequent crises, he may get depressed and lose motivation, which prevents him from working and/or causes him to spend a lot of time in the hospital\u0026rsquo;\u0026rsquo;. (Reference Adolescent 03)\u003c/p\u003e\n\u003cp\u003e4.4. Discrimination\u003c/p\u003e\n\u003cp\u003eSubjects with sickle cell illness would face humiliation and discrimination in society, in addition to the difficulties of finishing education and repeated school failures. \u0026quot;...people laugh at me because I look like I have HIV; at school, when I have crises, they say it\u0026apos;s epilepsy.\u0026quot; (Reference Adolescent 04). They are also marginalized and discriminated a in society \u0026apos;\u0026apos;...yes, often among young people when they have to go for a walk or make visits, they say that I can\u0026apos;t go there because I\u0026apos;m not that strong, but I also want to go there because they\u0026apos;re afraid that I might have a crisis halfway through stuff like that\u0026rsquo;\u0026rsquo;. (Reference Adolescent01)\u003c/p\u003e\n\u003cp\u003e5. \u0026nbsp;Perceptions in relation to the disease\u003c/p\u003e\n\u003cp\u003e5.1. Misunderstanding\u003c/p\u003e\n\u003cp\u003eIn this perspective, we have the patient who, when the disease was first announced, was unaware that it even existed. However, as she grew older and became aware of the disease\u0026apos;s meaning, she became stressed and frustrated because, while other children her age were in good health, she was required to take medication and visit the hospital frequently. \u0026quot;...a little stressed, especially when you think you have this disease and the others don\u0026apos;t,\u0026quot; so I could \u0026nbsp; \u0026nbsp;comprehend that it was normal and there was nothing to do thanks to the encouragement and \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; counsel we received. (Reference: Adolescent 02)\u003c/p\u003e\n\u003cp\u003e6. Care issues and needs\u003c/p\u003e\n\u003cp\u003e6.1. Global care\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe aspect of holistic treatment, according to the experiences of sickle cell patients and their parents, is dependent on the structures. The quality of treatment therefore depends on the structures since they observed that patients benefit from psychological support and frequent check-ups in particular health structures, which might improve their quality of life. The clinic \u0026laquo;\u0026nbsp;la petite Clinique amis des enfants\u0026nbsp;\u0026raquo; is use of a regular follow-up plan for sickle cell patients has significantly improved their quality of life. There were various issues that had remained to be addressed before they joined the \u0026laquo; la petite Clinique amis des enfants \u0026raquo;. He received just emergency care, with no medical follow-up. \u0026apos;\u0026apos;\u0026hellip;The level of treatment varies according to the facility since in certain hospitals, The standard of care varies depending on the hospital, as some allow for frequent check-ups (every two months) and psychosocial assistance for the subjects. I perform the check-up here at the children\u0026apos;s clinic, but I can always go to the hospital if there are emergencies before this date.\u0026rsquo;\u0026rsquo; (Reference: parent 03)\u003c/p\u003e\n\u003cp\u003e6.2. Frequency of consultations and medical follow-up\u003c/p\u003e\n\u003cp\u003eThe majority of parents stated that they had previously visited health institutions for consultation but had not gotten medical follow-up care. Most of the time, they just provided emergency care with little follow-up, leaving their kids vulnerable to recurring crisis. They said that the follow-up and routine check-ups they had gotten at the\u0026nbsp;\u0026laquo;\u0026nbsp;la petite Clinique amis des enfants\u0026nbsp;\u0026raquo;\u0026nbsp;had improved the health status of their kids.\u003c/p\u003e\n\u003cp\u003e6.3. Care quality\u003c/p\u003e\n\u003cp\u003eIn terms of care quality, the experience of sickle cell patients treated in the\u0026nbsp;\u0026laquo;\u0026nbsp;la petite Clinique amis des enfants\u0026nbsp;\u0026raquo;\u0026nbsp;indicates satisfaction with the infrastructure; yet, some parents are insisting on the provision of specific vaccines and drugs to enhance the situation.\u003c/p\u003e\n\u003cp\u003eAccording to a parent, they include the availability of Pneumo-23 vaccinations as well as the background therapy Oxbryta\u0026reg;. \u0026ldquo;\u0026hellip;I also recommended the doctors here to bring...we parents may even purchase this vaccination. Pneumovax-23 makes a significant contribution to the youngster\u0026rsquo;\u0026rsquo;. (Reference Parent 02)\u003c/p\u003e"},{"header":"DISCUSSION","content":"\u003cp\u003e We aimed to assess quality of life among children with SCD and their parents in Democratic Republic of Congo, particularly in the one referral clinic of SCD, located in the BUKAVU city-South kivu.\u003c/p\u003e \u003cp\u003eAlthough DRC is one of the major countries with the highest number of newborns with sickle cell disease (42,000)(\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e, \u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e), SCD is still poorly understood compare to infectious diseases or malnutrition by caregivers more over its impact on quality of life of patients and their relatives it\u0026rsquo;s often not explored.\u003c/p\u003e \u003cp\u003eThis study unveils five themes, which are discovery circumstances; parents and /or sickle cell sufferers\u0026rsquo; life; effects of the illness on sickle cell suffers\u0026rsquo; life; illness perceptions; care issues and needs.\u003c/p\u003e \u003cp\u003eChildren with SCD suffer frequent infections and vaso-occlusive crises that require recurrent hospitalization and transfusions, which has been also reported in this study. Parents and adolescents reported that it was by this circumstance that they discovered the condition. These findings were reported in previous studies in which among discovery circumstances vaso-occlusive crises, infections episodes and severe anemia(\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eAcceptance of the disease by the family and patients helped to increase prognostic of SCD and quality of life, many reported that they used to either minimize or denying the disease, while they prefer herbal medicines as a part of their treatment plans. Other studies done in Uganda and in DRC found the same results, this may be correlated by the fact that most of families faced diffiulties to pay hospital bills (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e)(\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e)\u003c/p\u003e \u003cp\u003eAround the world, it was reported that children with SCD faced school dropout, absenteism which may delay their school completion or leading to poor performance, furthermore, some experienced rejection from other children during social activities. This humiliation and stigimatization have been found in previous studies done in the regions and in another continent. (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e, \u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e, \u003cspan additionalcitationids=\"CR19\" citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e)\u003c/p\u003e \u003cp\u003eAdolescents, particularly girls, were terrified when they project themselves into the lives of the marriage, focusing on the responses of their husbands as well as the health of their future children ; these findings were also reported in other studies where their low level of education and perceptions reduce, comparing SCD with a curse their understanding of the disease(\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e) ; which may necessitate community awareness about pre-marital test and transmission methods due to the risk of divorce and rejection when couple have a children with SCD.(\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e, \u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e, \u003cspan additionalcitationids=\"CR21 CR22\" citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e)\u003c/p\u003e \u003cp\u003eParents and adolescents reported the risk of unemployement or underemployement due to frequent episodes of hospital admissions or to stigmatization, in country like DRC where people pay out of pocket for healthcare, this may lead to inability to access and afford quality of care, resulting in an increased risk of complications and decreased quality of life for patients with SCD, as reported by other studies(\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e, \u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eParents reported that the level of treatment varies according to the facility since in certain hospitals, the standard of care varies depending on the hospital, as some allow for frequent check-ups (every two months) and psychosocial assistance for the subjects .While the universal health coverage initiative is already in place in the majority of developed countries, allowing for better monitoring of chronic pathologies like sickle cell disease, it is not yet in place in developing countries like the Democratic Republic of the Congo, resulting in a significant financial burden for families as well as patients and those in need despite the establishement of a national program.\u003c/p\u003e \u003cp\u003eThe study limitations include referral bias, small sample size from a single area interviewed which may affect our ability to generalize the findings. Also, the interview was conducted in Swahili, which may include a selection bias. We recommend future research on larger sample size unable to validate the findings of this study. This study could include several social groups in order to reduce risk of selection bias.\u003c/p\u003e"},{"header":"CONCLUSION","content":"\u003cp\u003eThe study\u0026rsquo;s conclusion emphasizes the significance of considering a number of criteria in order to enhance the treatment and quality of life for teenagers with sickle cell disease. The findings point out the significance of creating culturally and locally relevant interventions to enhance access to healthcare, lower social and cultural barriers, foster better understanding of the disease, and integrate a model of routine follow-up for sickle cell patients, either in other secondary structures, which implies its integration within the DRC's health system.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cdiv class=\"DefinitionList\"\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eBAC\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eBaccalaur\u0026eacute;at\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eDRC\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eDemocratic Republic of Congo\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003ePNLCD\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eProgramme National de Lutte contre la Dr\u0026eacute;panocytose\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eSCD\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eSickle cells disease\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eAcknowledgments\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe are thankful to the entire team of doctors and nurses who participated in the management of those children at clinic \u0026lsquo;\u0026rsquo;Petite clinique Amis des enfants\u0026rsquo;\u0026rsquo;. We also express our gratitude to the parents who agreed to participate and for the publication of this article. Finally, we extend our utmost thanks to Dr FEZA BIANGA for her support.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eN/A\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAll data generated or analyzed during this study are included in this article.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eContributors\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eABZ, ELO produced the original concept of the article, executed the field study (subject recruitment and data collection), and had primary responsibility for the first draft of the manuscript. NMN contributed to the enrichment the manuscript. RKM validated statistical data analysis, contributed to the intellectual content of the discussion. SWO contributed to the intellectual content of the discussion. All authors read and approved the final manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe parents provided signed informed consent for participation in the study by written signature. All procedures performed in this study were approved by the Institutional\u003c/p\u003e\n\u003cp\u003eEthics Committee of the Universit\u0026eacute; Officielle de Bukavu and were in accordance with the 1964 Helsinki declaration and its later amendments.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe parents provided an informed consent for publication of this study by written signature.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no competing interests.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eTusuubira SK, Nakayinga R, Mwambi B, Odda J, Kiconco S, Komuhangi A. Knowledge, perception and practices towards sickle cell disease: A community survey among adults in Lubaga division, Kampala Uganda. 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Health-related quality of life in children with sickle cell disease: a report from the comprehensive sickle cell centers clinical trial consortium. Pediatr Blood Cancer. 2010;55(3):485\u0026ndash;94.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eAmaeshi L, Kalejaiye OO, Ogamba CF, Adelekan Popoola F, Adelabu YA, Ikwuegbuenyi CA et al. Health-Related Quality of Life Among Patients with Sickle Cell Disease in an Adult Hematology Clinic in a Tertiary Hospital in Lagos, Nigeria. Cureus. 2022.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"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":"sickle cell disease, quality of life, Democratic Republic of Congo","lastPublishedDoi":"10.21203/rs.3.rs-3715654/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-3715654/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003eSickle cells disease (SCD) is one of the most prevalent hemoglobinopathies. In Democratic Republic of Congo (DRC) Sickle cell disease is a serious public health issue aggravated by a limited access to health and social support. health and social support. SCD has an effect on individual overall well-being and quality of life. It has a negative impact on a patient's social life, schoolwork, physical and mental health, and career. In some cases, those who are impacted may have mental health conditions including grief, fear about dying, and denial of their illness.\u003c/p\u003e\u003ch2\u003eMethod\u003c/h2\u003e \u003cp\u003eThis qualitative study set out to assess the quality of life of children with SCD and their parents attending clinic \u0026lsquo;\u0026rsquo;Petite Clinique amis des enfants\u0026rsquo;\u0026rsquo;. For this study, we used in-depth interview.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003e12 in-depth interviews were conducted including 7 parents of children with SCD and 5 teenagers\u0026rsquo; patients. Five major interview themes emerged: (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e) discovery circumstances, (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e) Experience of sickle cell patients and/or their parents, (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e) Repercussions of the disease in the lives of sickle cell patients, (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e) Perceptions in relation to the disease, (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e) cares issues and needs.\u003c/p\u003e\u003ch2\u003eConclusion\u003c/h2\u003e \u003cp\u003eThe findings point out the significance of creating culturally and locally relevant interventions to enhance access to healthcare, lower social and cultural barriers, foster better understanding of the disease, and integrate a model of routine follow-up for sickle cell patients, either in other secondary structures, which implies its integration within the DRC's health system.\u003c/p\u003e","manuscriptTitle":"Quality of life among patients with Sickle Cell Disease and their parents in Democratic Republic of Congo, qualitative study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2023-12-20 04:35:03","doi":"10.21203/rs.3.rs-3715654/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":"4bda12c3-2fdc-42a7-b030-82d58f7a2c74","owner":[],"postedDate":"December 20th, 2023","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2024-06-25T06:56:34+00:00","versionOfRecord":[],"versionCreatedAt":"2023-12-20 04:35:03","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-3715654","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-3715654","identity":"rs-3715654","version":["v1"]},"buildId":"-HB7Z8yhvgn0wM9Nzuekk","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}