{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,15]],"date-time":"2026-10-15T17:51:52Z","timestamp":1792086712066,"version":"4.4.0"},"reference-count":40,"publisher":"Public Library of Science (PLoS)","issue":"10","license":[{"start":{"date-parts":[[2026,10,15]],"date-time":"2026-10-15T00:00:00Z","timestamp":1792022400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["www.plosone.org"],"crossmark-restriction":false},"short-container-title":["PLoS One"],"abstract":"<jats:sec id=\"sec001\">\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>To explore\u00a0parents\u00a0experiences following receipt of positive newborn screening for sickle cell disease (SCD) test results at a teaching hospital in Ghana.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"sec002\">\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Using purposive sampling, data were collected using semi-structured individual guides to interview parents of children attending the\u00a0Paediatric\u00a0SCD clinic at Korle Bu Teaching Hospital (KBTH), a major referral health facility in Ghana. Questions were\u00a0categorized\u00a0into 3 main areas: parents\u2019 reactions to initial positive results, parents\u2019 responses to in-clinic counselling, and parents\u2019 attitudes towards follow-up clinic care. The Socio-Ecological Model of Health was used to underpin this study. Interviews were conducted face-to-face either in English or a local dialect (Twi), after which they were transcribed verbatim. Data were\u00a0analyzed\u00a0using NVivo software and Microsoft Word to identify relevant codes, which were then\u00a0organized\u00a0into themes and sub-themes.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"sec003\">\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Twenty-four mothers and one father were interviewed between 2nd November 2021 and 28th January 2022. The ages of their children ranged from 7 months to 3 years 9 months. Seventeen (68%) of the parents were married, 5 (20%) had more than one child enrolled in the clinic, and 10 (40%) reported that they or their partners had SCD. The 7 themes identified were: (i) emotional response after disclosure, (ii) decision to share results, (iii) care and management of newborns at home, (iv) knowledge of genetics of SCD, (v) adherence to routine follow-up, (vi) cost, and (vii) Culture. Positive test results elicited worry, surprise, or shock in the majority, especially those with no previous knowledge of or experience with SCD. Most parents had received counselling and educational information on caring for their positive SCD children at home and the danger signs of SCD. The decision to share test results with others was influenced by fear of stigmatization. While desiring to see their children remain healthy, parents defaulted on clinic visits due to financial difficulties and the COVID-19 pandemic.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"sec004\">\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Knowledge of SCD and personal experience influenced parents\u2019 reaction to initial positive newborn screening for SCD test results. Culture and Cost were structural barriers to care. There is a need for more education about SCD among the general population and institutions, and there is a need to provide psychological and socioeconomic support for families attending the KBTH clinic.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1371\/journal.pone.0336204","type":"journal-article","created":{"date-parts":[[2026,10,15]],"date-time":"2026-10-15T17:35:18Z","timestamp":1792085718000},"page":"e0336204","update-policy":"https:\/\/doi.org\/10.1371\/journal.pone.corrections_policy","source":"Crossref","is-referenced-by-count":0,"title":["Sickle cell disease screening: Experiences of parents with positive newborns at Korle Bu TeachingHospital"],"prefix":"10.1371","volume":"21","author":[{"given":"Irene","family":"Kanyoke","sequence":"first","affiliation":[{"name":"School of Public Health, University of Ghana","place":["Legon, Ghana"],"department":["Department of Social and Behavioral Sciences"]},{"name":"Korle Bu Teaching Hospital","place":["Accra, Ghana"],"department":["Department of Child Health"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0006-8012-4098","authenticated-orcid":true,"given":"Faustina Hayford","family":"Blankson","sequence":"additional","affiliation":[{"name":"School of Public Health, University of Ghana","place":["Legon, Ghana"],"department":["Department of Social and Behavioral Sciences"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Diana","family":"Dwuma-Badu","sequence":"additional","affiliation":[{"name":"Korle Bu Teaching Hospital","place":["Accra, Ghana"],"department":["Department of Child Health"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Catherine","family":"Segbefia","sequence":"additional","affiliation":[{"name":"University of Ghana Medical School","place":["Accra, Ghana"],"department":["Department of Child Health"]}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"340","published-online":{"date-parts":[[2026,10,15]]},"reference":[{"key":"pone.0336204.ref001","doi-asserted-by":"crossref","first-page":"6161270","DOI":"10.1155\/2018\/6161270","article-title":"Burden of sickle cell disease in Ghana: The Korle-Bu experience","volume":"2018","author":"EV Asare","year":"2018","journal-title":"Adv Hematol"},{"issue":"23","key":"pone.0336204.ref002","article-title":"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","volume":"3026","author":"AM Thomson","year":"2023","journal-title":"Lancet Haematol"},{"issue":"1","key":"pone.0336204.ref003","doi-asserted-by":"crossref","first-page":"3","DOI":"10.1179\/136485907X154638","article-title":"Sickle cell disease in Africa: Burden and research priorities","volume":"101","author":"J Makani","year":"2007","journal-title":"Ann Trop Med Parasitol"},{"issue":"1","key":"pone.0336204.ref004","doi-asserted-by":"crossref","first-page":"120","DOI":"10.1186\/s13023-019-1099-0","article-title":"Current challenges in the management of patients with sickle cell disease - 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