{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,15]],"date-time":"2026-09-15T10:46:58Z","timestamp":1789469218747,"version":"build-2803163510"},"reference-count":29,"publisher":"MDPI AG","issue":"11","license":[{"start":{"date-parts":[[2022,6,4]],"date-time":"2022-06-04T00:00:00Z","timestamp":1654300800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"National Heart, Lung and Blood Institute of the National Institutes of Health","award":["U24 HL135881"],"award-info":[{"award-number":["U24 HL135881"]}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["IJERPH"],"abstract":"<jats:p>Tanzania is among the top five countries with a high burden of sickle cell disease (SCD) in the world. Even though the effects of SCD on quality of life have been documented in other countries including Nigeria and the United States of America, few are known from Tanzania. Therefore, this study focused on evaluating the effects of SCD on the quality of life among children living with SCD and their parents. The study employed a qualitative approach to interview purposively selected parents of children who have lived with SCD and have used hydroxyurea (HU) for more than 3 years. The in-depth interviews were conducted with 11 parents of children with SCD at the Muhimbili University of Health and Allied Sciences (MUHAS) in Dar-es-salaam, Tanzania. A semi-structured interview guide was used. Interviews were audio-recorded, transcribed, and thematically analyzed. Three themes were generated including psycho-social effects: family conflicts and divorce, limited access to education, stress and fear; financial effects: Employment limitation, reduced efficiency and productivity, loss of job and lack of self-keeping expenses; and physical effects: physical disability and dependence, and burden of the frequent crisis. Children living with SCD and their parents suffer psycho-social, financial, and physical impacts of the disease. Appropriate interventions should be introduced to minimize the observed effects as ways of improving the quality of life of the individuals living with SCD and their caregivers.<\/jats:p>","DOI":"10.3390\/ijerph19116871","type":"journal-article","created":{"date-parts":[[2022,6,4]],"date-time":"2022-06-04T09:42:32Z","timestamp":1654335752000},"page":"6871","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":21,"title":["The Effects of Sickle Cell Disease on the Quality of Life: A Focus on the Untold Experiences of Parents in Tanzania"],"prefix":"10.3390","volume":"19","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-5355-8353","authenticated-orcid":false,"given":"Manase","family":"Kilonzi","sequence":"first","affiliation":[{"name":"School of Pharmacy, The Muhimbili University of Health and Allied Sciences, Dar es Salaam P.O. Box 65013, Tanzania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dorkasi L.","family":"Mwakawanga","sequence":"additional","affiliation":[{"name":"School of Nursing, The Muhimbili University of Health and Allied Sciences, Dar es Salaam P.O. Box 65013, Tanzania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1380-1694","authenticated-orcid":false,"given":"Fatuma Felix","family":"Felician","sequence":"additional","affiliation":[{"name":"School of Pharmacy, The Muhimbili University of Health and Allied Sciences, Dar es Salaam P.O. Box 65013, Tanzania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hamu J.","family":"Mlyuka","sequence":"additional","affiliation":[{"name":"School of Pharmacy, The Muhimbili University of Health and Allied Sciences, Dar es Salaam P.O. Box 65013, Tanzania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lulu","family":"Chirande","sequence":"additional","affiliation":[{"name":"School of Medicine, The Muhimbili University of Health and Allied Sciences, Dar es Salaam P.O. Box 65001, Tanzania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0200-8121","authenticated-orcid":false,"given":"David T.","family":"Myemba","sequence":"additional","affiliation":[{"name":"School of Pharmacy, The Muhimbili University of Health and Allied Sciences, Dar es Salaam P.O. Box 65013, Tanzania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7785-829X","authenticated-orcid":false,"given":"Godfrey","family":"Sambayi","sequence":"additional","affiliation":[{"name":"School of Pharmacy, The Muhimbili University of Health and Allied Sciences, Dar es Salaam P.O. Box 65013, Tanzania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8963-4920","authenticated-orcid":false,"given":"Ritah F.","family":"Mutagonda","sequence":"additional","affiliation":[{"name":"School of Pharmacy, The Muhimbili University of Health and Allied Sciences, Dar es Salaam P.O. Box 65013, Tanzania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Wigilya P.","family":"Mikomangwa","sequence":"additional","affiliation":[{"name":"School of Pharmacy, The Muhimbili University of Health and Allied Sciences, Dar es Salaam P.O. Box 65013, Tanzania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joyce","family":"Ndunguru","sequence":"additional","affiliation":[{"name":"School of Medicine, The Muhimbili University of Health and Allied Sciences, Dar es Salaam P.O. Box 65001, Tanzania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9928-0732","authenticated-orcid":false,"given":"Agnes","family":"Jonathan","sequence":"additional","affiliation":[{"name":"School of Medicine, The Muhimbili University of Health and Allied Sciences, Dar es Salaam P.O. Box 65001, Tanzania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Paschal","family":"Ruggajo","sequence":"additional","affiliation":[{"name":"School of Medicine, The Muhimbili University of Health and Allied Sciences, Dar es Salaam P.O. Box 65001, Tanzania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5508-119X","authenticated-orcid":false,"given":"Irene Kida","family":"Minja","sequence":"additional","affiliation":[{"name":"School of Dentistry, The Muhimbili University of Health and Allied Sciences, Dar es Salaam P.O. Box 65013, Tanzania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3707-9985","authenticated-orcid":false,"given":"Emmanuel","family":"Balandya","sequence":"additional","affiliation":[{"name":"School of Medicine, The Muhimbili University of Health and Allied Sciences, Dar es Salaam P.O. Box 65001, Tanzania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4801-6250","authenticated-orcid":false,"given":"Julie","family":"Makani","sequence":"additional","affiliation":[{"name":"School of Medicine, The Muhimbili University of Health and Allied Sciences, Dar es Salaam P.O. Box 65001, Tanzania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5205-624X","authenticated-orcid":false,"given":"Nathanael","family":"Sirili","sequence":"additional","affiliation":[{"name":"Department of Development Studies, School of Public Health and Social Sciences, Muhimbili University of Health and Allied Sciences, Dar es Salaam P.O. Box 65013, Tanzania"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2022,6,4]]},"reference":[{"key":"ref_1","first-page":"139","article-title":"Pathophysiology of Sickle Cell Disease","volume":"176","author":"Sundd","year":"2019","journal-title":"Annu Rev. 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