{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,21]],"date-time":"2026-05-21T01:49:32Z","timestamp":1779328172551,"version":"3.51.4"},"reference-count":39,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2019,4,10]],"date-time":"2019-04-10T00:00:00Z","timestamp":1554854400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100000097","name":"National Center for Research Resources","doi-asserted-by":"publisher","award":["UL1 RR024975-01"],"award-info":[{"award-number":["UL1 RR024975-01"]}],"id":[{"id":"10.13039\/100000097","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100006108","name":"National Center for Advancing Translational Sciences","doi-asserted-by":"publisher","award":["UL1 TR000445-06"],"award-info":[{"award-number":["UL1 TR000445-06"]}],"id":[{"id":"10.13039\/100006108","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Journal of Genetic Counseling"],"published-print":{"date-parts":[[2019,8]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Benefits of identifying sickle cell disease (SCD) carriers include detection of at\u2010risk couples who may be informed on reproductive choices. Studies consistently report insufficient knowledge about the genetic inheritance pattern of SCD among people with sickle cell trait (SCT). This study explored perspectives of adults with SCT on the information needed to make an informed reproductive decision and the recommendations for communicating SCT information. Five focus groups (<jats:italic>N<\/jats:italic>\u00a0=\u00a025) were conducted with African Americans with SCT ages 18\u201365\u00a0years old. Participants were asked about their knowledge of SCT, methods for finding information on SCT, impact of SCT on daily living, and interactions with healthcare providers. An inductive\u2010deductive qualitative analysis was used to analyze the data for emerging themes. Four themes emerged, highlighting the unmet information needs of African American sickle cell carriers: (a) SCT and SCD Education; (b) information sources; (c) improved communication about SCT and SCD; and (d) increased screening strategies. Future studies are needed to determine effective strategies for communicating SCT information and to identify opportunities for education within community and medical settings. Identifying strategies to facilitate access to SCT resources and education could serve as a model for meeting unmet information needs for carriers of other genetic conditions.<\/jats:p>","DOI":"10.1002\/jgc4.1124","type":"journal-article","created":{"date-parts":[[2019,4,10]],"date-time":"2019-04-10T13:29:50Z","timestamp":1554902990000},"page":"812-821","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":17,"title":["Sickle cell carriers' unmet information needs: Beyond knowing trait status"],"prefix":"10.1002","volume":"28","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-9303-5266","authenticated-orcid":false,"given":"Tilicia L.","family":"Mayo\u2010Gamble","sequence":"first","affiliation":[{"name":"Department of Health Policy and Community Health, Management and Behavior Jiann\u2010Ping Hsu College of Public Health, Georgia Southern University Statesboro Georgia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"David","family":"Schlundt","sequence":"additional","affiliation":[{"name":"Department of Psychology College of Arts and Sciences, Vanderbilt University Nashville Tennessee"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jennifer","family":"Cunningham\u2010Erves","sequence":"additional","affiliation":[{"name":"Department of Internal Medicine Meharry Medical College Nashville Tennessee"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Velma McBride","family":"Murry","sequence":"additional","affiliation":[{"name":"Department of Human and Organizational Development College of Education and Human Development, Vanderbilt University Nashville Tennessee"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kemberlee","family":"Bonnet","sequence":"additional","affiliation":[{"name":"Department of Psychology College of Arts and Sciences, Vanderbilt University Nashville Tennessee"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Delores","family":"Quasie\u2010Woode","sequence":"additional","affiliation":[{"name":"Department of Health Policy and Community Health, Management and Behavior Jiann\u2010Ping Hsu College of Public Health, Georgia Southern University Statesboro Georgia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Charles P.","family":"Mouton","sequence":"additional","affiliation":[{"name":"Department of Family Medicine, Office of Academic Affairs University of Texas Medical Branch Galveston Texas"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2019,4,10]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0027-9684(15)31113-5"},{"key":"e_1_2_9_3_1","doi-asserted-by":"publisher","DOI":"10.1037\/0003-066X.44.9.1175"},{"key":"e_1_2_9_4_1","doi-asserted-by":"publisher","DOI":"10.1146\/annurev.psych.52.1.1"},{"key":"e_1_2_9_5_1","doi-asserted-by":"publisher","DOI":"10.2215\/CJN.08841209"},{"issue":"1","key":"e_1_2_9_6_1","first-page":"62","article-title":"Inadequate community knowledge about sickle cell disease among African\u2010American women","volume":"97","author":"Boyd J. H.","year":"2005","journal-title":"Journal of the National Medical Association"},{"key":"e_1_2_9_7_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2012.03.018"},{"key":"e_1_2_9_8_1","unstructured":"Centers for Disease Control and Prevention [CDC]. (2015).What you should know about sickle cell trait. Retrieved on November 1 2015 fromhttp:\/\/www.cdc.gov\/ncbddd\/sicklecell\/documents\/factsheet_sickle_cell_trait.pdf. Accessed January 21 2019."},{"key":"e_1_2_9_9_1","unstructured":"Centers for Disease Control and Prevention [CDC]. (2017).Sickle cell trait toolkit. Retrieved on January 25 2019 fromhttps:\/\/www.cdc.gov\/ncbddd\/sicklecell\/traits.html. 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A.","year":"2016","journal-title":"Public Library of Science One"},{"key":"e_1_2_9_19_1","unstructured":"Health Resources and Services Administration [HRSA]. (2010).Screening U.S. college athletes for their sickle cell disease carrier status. Secretary\u2019s advisory committee on heritable disorders in newborns and children. Retrieved on January 21 2019 fromhttps:\/\/www.hrsa.gov\/sites\/default\/files\/hrsa\/advisory-committees\/heritable-disorders\/reports-recommendations\/reports\/college-athletes-sickle-cell.pdf. Accessed January 21 2019."},{"issue":"3","key":"e_1_2_9_20_1","first-page":"1","article-title":"Feasibility of a community\u2010based sickle cell trait testing and counseling program","volume":"9","author":"Housten A. 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