{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,5]],"date-time":"2026-09-05T02:40:03Z","timestamp":1788576003219,"version":"build-2803163510"},"reference-count":47,"publisher":"Springer Science and Business Media LLC","issue":"2","license":[{"start":{"date-parts":[[2023,10,27]],"date-time":"2023-10-27T00:00:00Z","timestamp":1698364800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2023,10,27]],"date-time":"2023-10-27T00:00:00Z","timestamp":1698364800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/100000051","name":"National Human Genome Research Institute","doi-asserted-by":"publisher","award":["U01HG007459"],"award-info":[{"award-number":["U01HG007459"]}],"id":[{"id":"10.13039\/100000051","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000050","name":"National Heart, Lung, and Blood Institute","doi-asserted-by":"publisher","award":["U24HL135600"],"award-info":[{"award-number":["U24HL135600"]}],"id":[{"id":"10.13039\/100000050","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000052","name":"NIH Office of the Director","doi-asserted-by":"publisher","award":["1U01MH127692\u201301"],"award-info":[{"award-number":["1U01MH127692\u201301"]}],"id":[{"id":"10.13039\/100000052","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100007112","name":"University of Cape Town","doi-asserted-by":"crossref","id":[{"id":"10.13039\/501100007112","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Qual Life Res"],"published-print":{"date-parts":[[2024,2]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n                <jats:title>Purpose<\/jats:title>\n                <jats:p>Sickle cell disease (SCD) is an inherited blood disorder characterized by unpredictable episodes of acute pain and numerous health complications. Individuals with SCD often face stigma from the public, including perceptions that they are lazy or weak tending to exaggerate their pain crisis, which can profoundly impact their quality of life (QoL).<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>In a qualitative phenomenological study conducted in Cameroon, Ghana, and Tanzania, we explored stakeholders\u2019 perceptions of SCD-related stigma using three analytical frameworks: <jats:italic>Bronfenbrenner\u2019s Ecological Systems Theory<\/jats:italic>; <jats:italic>The Health Stigma and Discriminatory Framework;<\/jats:italic> and <jats:italic>A Public Health Framework for Reducing Stigma.<\/jats:italic><\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>The study reveals that SCD-related stigma is marked by prejudice, negative labelling and social discrimination, with derogatory terms such as sickler, <jats:italic>ogbanje<\/jats:italic> (one who comes and goes), <jats:italic>sika besa<\/jats:italic> (money will finish), <jats:italic>ene mewu<\/jats:italic> (I can die today, I can die tomorrow), <jats:italic>vampire<\/jats:italic> (one who consumes human blood), and Efiewura (landlord-<jats:italic>of the hospital<\/jats:italic>), commonly used to refer to individuals living with SCD. Drivers of stigma include frequent crises and hospitalizations, distinct physical features of individuals living with SCD, cultural misconceptions about SCD and its association with early mortality. Proposed\u00a0strategies for mitigating stigma include public health education campaigns\u00a0about SCD, integrating SCD into school curricula, healthcare worker training and community engagement.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusion<\/jats:title>\n                <jats:p>The results highlight the importance of challenging stigmatizing narratives on SCD and recognizing that stigmatization represents a social injustice that significantly diminishes the QoL of individuals living with SCD.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1007\/s11136-023-03533-8","type":"journal-article","created":{"date-parts":[[2023,10,27]],"date-time":"2023-10-27T14:02:11Z","timestamp":1698415331000},"page":"423-432","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":23,"title":["Caught between pity, explicit bias, and discrimination: a qualitative study on the impact of stigma on the quality of life of persons living with sickle cell disease in three African countries"],"prefix":"10.1007","volume":"33","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-1498-3602","authenticated-orcid":false,"given":"Nchangwi Syntia","family":"Munung","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marsha","family":"Treadwell","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Karen Kengne","family":"Kamga","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jemima","family":"Dennis-Antwi","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kofi","family":"Anie","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Daima","family":"Bukini","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Julie","family":"Makani","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ambroise","family":"Wonkam","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2023,10,27]]},"reference":[{"issue":"9757","key":"3533_CR1","doi-asserted-by":"publisher","first-page":"2018","DOI":"10.1016\/S0140-6736(10)61029-X","volume":"376","author":"DC Rees","year":"2010","unstructured":"Rees, D. C., Williams, T. N., & Gladwin, M. T. (2010). Sickle-cell disease. Lancet (London, England), 376(9757), 2018\u20132031.","journal-title":"Lancet (London, England)"},{"issue":"6 Suppl 4","key":"3533_CR2","doi-asserted-by":"publisher","first-page":"S398","DOI":"10.1016\/j.amepre.2011.09.013","volume":"41","author":"SD Grosse","year":"2011","unstructured":"Grosse, S. D., Odame, I., Atrash, H. K., Amendah, D. D., Piel, F. B., & Williams, T. N. (2011). Sickle cell disease in Africa: A neglected cause of early childhood mortality. American Journal of Preventive Medicine, 41(6 Suppl 4), S398-405.","journal-title":"American Journal of Preventive Medicine"},{"issue":"9861","key":"3533_CR3","doi-asserted-by":"publisher","first-page":"142","DOI":"10.1016\/S0140-6736(12)61229-X","volume":"381","author":"FB Piel","year":"2013","unstructured":"Piel, F. B., Patil, A. P., Howes, R. E., Nyangiri, O. A., Gething, P. W., Dewi, M., Temperley, W. H., Williams, T. N., Weatherall, D. J., & Hay, S. I. (2013). Global epidemiology of sickle haemoglobin in neonates: A contemporary geostatistical model-based map and population estimates. Lancet (London, England), 381(9861), 142\u2013151.","journal-title":"Lancet (London, England)"},{"key":"3533_CR4","unstructured":"Thomson AM, McHugh TA, Oron AP, Teply C, Lonberg N, Vilchis Tella V, Wilner LB, Fuller K, Hagins H, Aboagye RG et al: Global, regional, and national prevalence and mortality burden of sickle cell disease, 2000\u20132021: A systematic analysis from the Global Burden of Disease Study 2021 The Lancet Haematology 2023."},{"issue":"2","key":"3533_CR5","doi-asserted-by":"publisher","first-page":"e14699","DOI":"10.1371\/journal.pone.0014699","volume":"6","author":"J Makani","year":"2011","unstructured":"Makani, J., Cox, S. E., Soka, D., Komba, A. N., Oruo, J., Mwamtemi, H., Magesa, P., Rwezaula, S., Meda, E., Mgaya, J., et al. (2011). Mortality in sickle cell Anemia in Africa: A prospective cohort study in Tanzania. PLoS ONE, 6(2), e14699.","journal-title":"PLoS ONE"},{"issue":"1","key":"3533_CR6","doi-asserted-by":"publisher","first-page":"104","DOI":"10.1038\/ncomms1104","volume":"1","author":"FB Piel","year":"2010","unstructured":"Piel, F. B., Patil, A. P., Howes, R. E., Nyangiri, O. A., Gething, P. W., Williams, T. N., Weatherall, D. J., & Hay, S. I. (2010). Global distribution of the sickle cell gene and geographical confirmation of the malaria hypothesis. Nature Communications, 1(1), 104.","journal-title":"Nature Communications"},{"issue":"9757","key":"3533_CR7","doi-asserted-by":"publisher","first-page":"2018","DOI":"10.1016\/S0140-6736(10)61029-X","volume":"376","author":"DC Rees","year":"2010","unstructured":"Rees, D. C., Williams, T. N., & Gladwin, M. T. (2010). Sickle-cell disease. The Lancet, 376(9757), 2018\u20132031.","journal-title":"The Lancet"},{"issue":"1","key":"3533_CR8","doi-asserted-by":"publisher","first-page":"e2013001","DOI":"10.4084\/mjhid.2013.001","volume":"5","author":"S Akodu","year":"2013","unstructured":"Akodu, S., Diaku-Akinwumi, I., & Njokanma, O. (2013). Age at diagnosis of sickle cell anaemia in lagos, Nigeria. Mediterr J Hematol Infect Dis, 5(1), e2013001.","journal-title":"Mediterr J Hematol Infect Dis"},{"issue":"6","key":"3533_CR9","doi-asserted-by":"publisher","first-page":"881","DOI":"10.1016\/S0022-3476(85)80230-4","volume":"106","author":"R Bainbridge","year":"1985","unstructured":"Bainbridge, R., Higgs, D. R., Maude, G. H., & Serjeant, G. R. (1985). Clinical presentation of homozygous sickle cell disease. Journal of Pediatrics, 106(6), 881\u2013885.","journal-title":"Journal of Pediatrics"},{"issue":"6","key":"3533_CR10","doi-asserted-by":"publisher","first-page":"26","DOI":"10.1097\/01.NAJ.0000559779.40570.2c","volume":"119","author":"P Tanabe","year":"2019","unstructured":"Tanabe, P., Spratling, R., Smith, D., Grissom, P., & Hulihan, M. (2019). CE: understanding the complications of sickle cell disease. AJN The American Journal of Nursing, 119(6), 26.","journal-title":"AJN The American Journal of Nursing"},{"issue":"6","key":"3533_CR11","doi-asserted-by":"publisher","first-page":"723","DOI":"10.1111\/j.1365-2141.2005.05500.x","volume":"129","author":"KA Anie","year":"2005","unstructured":"Anie, K. A. (2005). Psychological complications in sickle cell disease. British Journal of Haematology, 129(6), 723\u2013729.","journal-title":"British Journal of Haematology"},{"issue":"8","key":"3533_CR12","doi-asserted-by":"publisher","first-page":"675","DOI":"10.1080\/01612840.2018.1443530","volume":"39","author":"D Bulgin","year":"2018","unstructured":"Bulgin, D., Tanabe, P., & Jenerette, C. (2018). Stigma of sickle cell disease: A systematic review. Issues in Mental Health Nursing, 39(8), 675\u2013686.","journal-title":"Issues in Mental Health Nursing"},{"issue":"2","key":"3533_CR13","doi-asserted-by":"publisher","first-page":"192","DOI":"10.1007\/s10897-013-9630-2","volume":"23","author":"A Wonkam","year":"2014","unstructured":"Wonkam, A., Mba, C. Z., Mbanya, D., Ngogang, J., Ramesar, R., & Angwafo, F. F., 3rd. (2014). Psychosocial burden of sickle cell disease on parents with an affected child in Cameroon. Journal of Genetic Counseling, 23(2), 192\u2013201.","journal-title":"Journal of Genetic Counseling"},{"issue":"5","key":"3533_CR14","doi-asserted-by":"publisher","first-page":"655","DOI":"10.1177\/1049732313480048","volume":"23","author":"M Anderson","year":"2013","unstructured":"Anderson, M., & Asnani, M. (2013). You just have to live with it: Coping with sickle cell disease in Jamaica. Qualitative Health Research, 23(5), 655\u2013664.","journal-title":"Qualitative Health Research"},{"issue":"4\u20135","key":"3533_CR15","doi-asserted-by":"publisher","first-page":"465","DOI":"10.1080\/13557858.2010.531249","volume":"16","author":"JA Dennis-Antwi","year":"2011","unstructured":"Dennis-Antwi, J. A., Culley, L., Hiles, D. R., & Dyson, S. M. (2011). \u2018I can die today, I can die tomorrow\u2019: Lay perceptions of sickle cell disease in Kumasi, Ghana at a point of transition. Ethnicity & Health, 16(4\u20135), 465\u2013481.","journal-title":"Ethnicity & Health"},{"key":"3533_CR16","unstructured":"Goffman E., (2009) Stigma: Notes on the management of spoiled identity: Simon and schuster"},{"issue":"3","key":"3533_CR17","doi-asserted-by":"publisher","first-page":"341","DOI":"10.2105\/AJPH.92.3.341","volume":"92","author":"RO Valdiserri","year":"2002","unstructured":"Valdiserri, R. O. (2002). HIV\/AIDS stigma: An impediment to public health. American Journal of Public Health, 92(3), 341\u2013342.","journal-title":"American Journal of Public Health"},{"issue":"9509","key":"3533_CR18","doi-asserted-by":"publisher","first-page":"528","DOI":"10.1016\/S0140-6736(06)68184-1","volume":"367","author":"BG Link","year":"2006","unstructured":"Link, B. G., & Phelan, J. C. (2006). Stigma and its public health implications. The Lancet, 367(9509), 528\u2013529.","journal-title":"The Lancet"},{"key":"3533_CR19","unstructured":"WHO: (2012) The world health organization quality of life (WHOQOL). In. Edited by Use MHaS, vol. WHO\/MNH\/MHP\/98.4.Rev.1. https:\/\/www.who.int\/publications\/i\/item\/WHO-HIS-HSI-Rev.2012.03: WHO; pp 106."},{"key":"3533_CR20","unstructured":"Mayo N.E., Ahmed S., Andrich D. (2015) Research ISfQoL: Dictionary of quality of life and health outcomes measurement: International society for quality of life research (ISOQOL)."},{"issue":"7","key":"3533_CR21","doi-asserted-by":"publisher","first-page":"1245","DOI":"10.1002\/pbc.25503","volume":"62","author":"TA Adeyemo","year":"2015","unstructured":"Adeyemo, T. A., Ojewunmi, O. O., Diaku-Akinwumi, I. N., Ayinde, O. C., & Akanmu, A. S. (2015). Health related quality of life and perception of stigmatisation in adolescents living with sickle cell disease in Nigeria: A cross sectional study. Pediatric Blood & Cancer, 62(7), 1245\u20131251.","journal-title":"Pediatric Blood & Cancer"},{"issue":"5","key":"3533_CR22","doi-asserted-by":"publisher","first-page":"1133","DOI":"10.1080\/13548506.2021.2019808","volume":"28","author":"D Bulgin","year":"2023","unstructured":"Bulgin, D., Asnani, M., Vorderstrasse, A., Royal, C., Pan, W., & Tanabe, P. (2023). Stigma and quality of life in adults with sickle cell disease in Jamaica and the United States. Psychology, Health & Medicine, 28(5), 1133\u20131147.","journal-title":"Psychology, Health & Medicine"},{"issue":"1","key":"3533_CR23","doi-asserted-by":"publisher","first-page":"42","DOI":"10.1177\/160940690400300104","volume":"3","author":"T Groenewald","year":"2004","unstructured":"Groenewald, T. (2004). A Phenomenological Research Design Illustrated. International Journal of Qualitative Methods, 3(1), 42\u201355.","journal-title":"International Journal of Qualitative Methods"},{"key":"3533_CR24","doi-asserted-by":"publisher","first-page":"56","DOI":"10.1016\/j.ijans.2015.08.002","volume":"3","author":"LL Mulumba","year":"2015","unstructured":"Mulumba, L. L., & Wilson, L. (2015). Sickle cell disease among children in Africa: An integrative literature review and global recommendations. International Journal of Africa Nursing Sciences, 3, 56\u201364.","journal-title":"International Journal of Africa Nursing Sciences"},{"key":"3533_CR25","unstructured":"WHO: Sickle cell anaemia. In.: WHO; 2006: 5."},{"issue":"6","key":"3533_CR26","doi-asserted-by":"publisher","first-page":"323","DOI":"10.1089\/omi.2017.0047","volume":"21","author":"MJ Treadwell","year":"2017","unstructured":"Treadwell, M. J., Makani, J., Ohene-Frempong, K., Ofori-Acquah, S., McCurdy, S., de Vries, J., Bukini, D., Dennis-Antwi, J., Kamga, K. K., Mbekenga, C., et al. (2017). Stakeholder perspectives on public health genomics applications for sickle cell disease: A methodology for a human heredity and health in Africa (H3Africa) qualitative research study: OMICS. A Journal of Integrative Biology., 21(6), 323\u201332. https:\/\/doi.org\/10.1089\/omi.2017.0047","journal-title":"A Journal of Integrative Biology."},{"key":"3533_CR27","doi-asserted-by":"publisher","first-page":"33","DOI":"10.4135\/9781473913882.n3","volume":"2013","author":"N Emmel","year":"2013","unstructured":"Emmel, N. (2013). Purposeful sampling. Sampling and Choosing Cases in Qualitative Research: A Realist Approach, 2013, 33\u201345.","journal-title":"Sampling and Choosing Cases in Qualitative Research: A Realist Approach"},{"issue":"4","key":"3533_CR28","doi-asserted-by":"publisher","first-page":"327","DOI":"10.1080\/13645570701401305","volume":"11","author":"C Noy","year":"2008","unstructured":"Noy, C. (2008). Sampling knowledge: The hermeneutics of snowball sampling in qualitative research. International Journal of Social Research Methodology, 11(4), 327\u2013344.","journal-title":"International Journal of Social Research Methodology"},{"issue":"1","key":"3533_CR29","doi-asserted-by":"publisher","first-page":"130","DOI":"10.1186\/s12910-022-00843-3","volume":"23","author":"NS Munung","year":"2022","unstructured":"Munung, N. S., Nembaware, V., Osei-Tutu, L., Treadwell, M., Chide, O. E., Bukini, D., Tutuba, H., Nkanyemka, M., Anie, K., Royale, C., et al. (2022). Assent, parental consent and reconsent for health research in Africa: Thematic analysis of national guidelines and lessons from the SickleInAfrica registry. BMC Medical Ethics, 23(1), 130.","journal-title":"BMC Medical Ethics"},{"issue":"10","key":"3533_CR30","doi-asserted-by":"publisher","first-page":"1483","DOI":"10.1177\/1049732318821692","volume":"29","author":"MM Hennink","year":"2019","unstructured":"Hennink, M. M., Kaiser, B. N., & Weber, M. B. (2019). What influences saturation? Estimating sample sizes in focus group research. Qualitative Health Research, 29(10), 1483\u20131496.","journal-title":"Qualitative Health Research"},{"key":"3533_CR31","unstructured":"QSR International: (2018) NVivo Qualitative Data Analysis Software. In.: https:\/\/www.qsrinternational.com\/nvivo-qualitative-data-analysis-software\/home\/."},{"issue":"2","key":"3533_CR32","doi-asserted-by":"publisher","first-page":"267","DOI":"10.1007\/s10897-014-9759-7","volume":"24","author":"MJ Treadwell","year":"2015","unstructured":"Treadwell, M. J., Anie, K. A., Grant, A. M., Ofori-Acquah, S. F., & Ohene-Frempong, K. (2015). Using formative research to develop a counselor training program for newborn screening in Ghana. Journal of Genetic Counseling, 24(2), 267\u2013277.","journal-title":"Journal of Genetic Counseling"},{"key":"3533_CR33","first-page":"187","volume":"6","author":"U Bronfenbrenner","year":"1989","unstructured":"Bronfenbrenner, U. (1989). Ecological system theory. Annals of Child Development, 6, 187\u2013249.","journal-title":"Annals of Child Development"},{"issue":"1","key":"3533_CR34","doi-asserted-by":"publisher","first-page":"31","DOI":"10.1186\/s12916-019-1271-3","volume":"17","author":"AL Stangl","year":"2019","unstructured":"Stangl, A. L., Earnshaw, V. A., Logie, C. H., van Brakel, W. C., Simbayi, L., Barr\u00e9, I., & Dovidio, J. F. (2019). The health stigma and discrimination framework: a global, crosscutting framework to inform research, intervention development, and policy on health-related stigmas. BMC Medicine, 17(1), 31.","journal-title":"BMC Medicine"},{"issue":"3","key":"3533_CR35","doi-asserted-by":"publisher","first-page":"511","DOI":"10.1007\/s11673-022-10199-3","volume":"19","author":"A Harwood","year":"2022","unstructured":"Harwood, A., Carter, D., & Eliott, J. (2022). A public health framework for reducing stigma: The example of weight stigma. Journal of Bioethical Inquiry, 19(3), 511\u2013520.","journal-title":"Journal of Bioethical Inquiry"},{"issue":"4","key":"3533_CR36","doi-asserted-by":"publisher","first-page":"282","DOI":"10.4278\/0890-1171-10.4.282","volume":"10","author":"D Stokols","year":"1996","unstructured":"Stokols, D. (1996). Translating social ecological theory into guidelines for community health promotion. American Journal of Health Promotion, 10(4), 282\u2013298.","journal-title":"American Journal of Health Promotion"},{"issue":"1","key":"3533_CR37","doi-asserted-by":"publisher","first-page":"84","DOI":"10.1016\/j.pedhc.2020.08.002","volume":"35","author":"JM Buser","year":"2021","unstructured":"Buser, J. M., Bakari, A., Seidu, A.-A., Osei-Akoto, A., Paintsil, V., Amoah, R., Otoo, B., & Moyer, C. A. (2021). Caregiver perception of sickle cell disease stigma in Ghana: An ecological approach. Journal of Pediatric Health Care, 35(1), 84\u201390.","journal-title":"Journal of Pediatric Health Care"},{"issue":"3","key":"3533_CR38","doi-asserted-by":"publisher","first-page":"239","DOI":"10.1080\/13694670600621795","volume":"10","author":"STC Ilechukwu","year":"2007","unstructured":"Ilechukwu, S. T. C. (2007). Ogbanje\/abiku and cultural conceptualizations of psychopathology in Nigeria. Mental Health, Religion & Culture, 10(3), 239\u2013255.","journal-title":"Mental Health, Religion & Culture"},{"issue":"9","key":"3533_CR39","doi-asserted-by":"publisher","first-page":"1403","DOI":"10.1016\/S0277-9536(00)00245-8","volume":"52","author":"E Nzewi","year":"2001","unstructured":"Nzewi, E. (2001). Malevolent Ogbanje: Recurrent reincarnation or sickle cell disease? Social Science & Medicine, 52(9), 1403\u20131416.","journal-title":"Social Science & Medicine"},{"key":"3533_CR40","doi-asserted-by":"crossref","unstructured":"Okoibhole L.O., Ebenso B., A qualitative study on stigma experienced by young adults living with sickle cell disease in Accra, Ghana. International Health 2023.","DOI":"10.1093\/inthealth\/ihac087"},{"key":"3533_CR41","doi-asserted-by":"publisher","first-page":"18","DOI":"10.1590\/0034-7167-2020-0831","volume":"74","author":"ESDS Carvalho","year":"2021","unstructured":"Carvalho, E. S. D. S., Carneiro, J. M., Gomes, A. S., Freitas, K. S., & Jenerette, C. M. (2021). Why does your pain never get better? Stigma and coping mechanism in people with sickle cell disease. Revista Brasileira de Enfermagem, 74, 18.","journal-title":"Revista Brasileira de Enfermagem"},{"issue":"3","key":"3533_CR42","first-page":"24","volume":"3","author":"K Al-Nasseri","year":"2019","unstructured":"Al-Nasseri, K., Joseph, J., Al Nasiri, Y., Al Mawali, A., & Jacob, E. (2019). Do Young Omani adults with sickle cell disease experience stigma from having the disease? Iraq Medical Journal, 3(3), 24.","journal-title":"Iraq Medical Journal"},{"key":"3533_CR43","first-page":"1","volume":"27","author":"D Bulgin","year":"2021","unstructured":"Bulgin, D., Asnani, M., Vorderstrasse, A., Royal, C., Pan, W., & Tanabe, P. (2021). Stigma and quality of life in adults with sickle cell disease in Jamaica and the United States. Psychology, Health and Medicine, 27, 1\u201315.","journal-title":"Psychology, Health and Medicine"},{"issue":"6","key":"3533_CR44","doi-asserted-by":"publisher","first-page":"532","DOI":"10.1002\/ajh.23441","volume":"88","author":"J Glassberg","year":"2013","unstructured":"Glassberg, J., Tanabe, P., Richardson, L., & Debaun, M. (2013). Among emergency physicians, use of the term \u201cSickler\u201d is associated with negative attitudes toward people with sickle cell disease. American Journal of Hematology, 88(6), 532\u2013533.","journal-title":"American Journal of Hematology"},{"issue":"4","key":"3533_CR45","doi-asserted-by":"publisher","first-page":"237","DOI":"10.1159\/000431020","volume":"18","author":"A Wonkam","year":"2015","unstructured":"Wonkam, A., Ngo Bitoungui, V. J., & Ngogang, J. (2015). Perspectives in genetics and sickle cell disease prevention in Africa: Beyond the preliminary data from Cameroon. Public Health Genomics, 18(4), 237\u2013241.","journal-title":"Public Health Genomics"},{"issue":"2","key":"3533_CR46","doi-asserted-by":"publisher","first-page":"e98","DOI":"10.1016\/S2352-3026(20)30006-5","volume":"7","author":"J Makani","year":"2020","unstructured":"Makani, J., Sangeda, R. Z., Nnodu, O., Nembaware, V., Osei-Akoto, A., Paintsil, V., Balandya, E., Kent, J., Luzzatto, L., Ofori-Acquah, S., et al. (2020). SickleInAfrica. The Lancet Haematology, 7(2), e98\u2013e99.","journal-title":"The Lancet Haematology"},{"key":"3533_CR47","doi-asserted-by":"publisher","first-page":"943","DOI":"10.3389\/fgene.2019.00943","volume":"10","author":"NS Munung","year":"2019","unstructured":"Munung, N. S., Nembaware, V., de Vries, J., Bukini, D., Tluway, F., Treadwell, M., Sangeda, R. Z., Mazandu, G., Jonas, M., Paintsil, V., et al. (2019). Establishing a multi-country sickle cell disease registry in Africa: Ethical considerations. Frontiers in Genetics, 10, 943.","journal-title":"Frontiers in Genetics"}],"container-title":["Quality of Life Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s11136-023-03533-8.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s11136-023-03533-8\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s11136-023-03533-8.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,2,7]],"date-time":"2024-02-07T10:25:17Z","timestamp":1707301517000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s11136-023-03533-8"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,10,27]]},"references-count":47,"journal-issue":{"issue":"2","published-print":{"date-parts":[[2024,2]]}},"alternative-id":["3533"],"URL":"https:\/\/doi.org\/10.1007\/s11136-023-03533-8","relation":{},"ISSN":["0962-9343","1573-2649"],"issn-type":[{"value":"0962-9343","type":"print"},{"value":"1573-2649","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,10,27]]},"assertion":[{"value":"28 September 2023","order":1,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"27 October 2023","order":2,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflict of interest"}}]}}