{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,8,20]],"date-time":"2025-08-20T13:16:38Z","timestamp":1755695798932},"reference-count":35,"publisher":"Wiley","issue":"11-12","license":[{"start":{"date-parts":[[2016,3,11]],"date-time":"2016-03-11T00:00:00Z","timestamp":1457654400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100000002","name":"National Institutes of Health","doi-asserted-by":"publisher","award":["U54HL090513","R01HL114404"],"award-info":[{"award-number":["U54HL090513","R01HL114404"]}],"id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000050","name":"National Heart, Lung, and Blood Institute","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100000050","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Journal of Clinical Nursing"],"published-print":{"date-parts":[[2016,6]]},"abstract":"<jats:sec><jats:title>Aims and objectives<\/jats:title><jats:p>To describe the family\u2010related characteristics of young adults with sickle\u2010cell disease or sickle\u2010cell trait prior to taking part in a randomised controlled trial on sickle\u2010cell reproductive health education.<\/jats:p><\/jats:sec><jats:sec><jats:title>Background<\/jats:title><jats:p>There is a critical need for educational programmes that target the reproductive needs of young adults with sickle\u2010cell disease or trait. However, little is known about the family\u2010related characteristics (i.e., demographic attributes and reproductive health behaviours) in which these young adults live.<\/jats:p><\/jats:sec><jats:sec><jats:title>Design<\/jats:title><jats:p>A descriptive cross\u2010sectional analysis.<\/jats:p><\/jats:sec><jats:sec><jats:title>Method<\/jats:title><jats:p>At study enrolment, 234 young adults (mean age\u00a0=\u00a025\u00b79\u00a0years, 65% female) completed the SCKnowIQ questionnaire. Descriptive statistics depict the demographic attributes and reproductive health behaviours of young adults with sickle\u2010cell disease (<jats:italic>n\u00a0<\/jats:italic>=<jats:italic>\u00a0<\/jats:italic>138) or trait (<jats:italic>n\u00a0<\/jats:italic>=<jats:italic>\u00a0<\/jats:italic>96). For group comparisons, independent <jats:italic>t<\/jats:italic> tests or Fisher's tests were used, as appropriate.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Young adults with sickle\u2010cell trait had significantly higher education, income and health insurance than those with sickle\u2010cell disease. Both groups believed that sickle\u2010cell disease was a severe condition. A majority of young adults with sickle\u2010cell disease (65%) had no children compared to 42% of those with sickle\u2010cell trait. Most young adults (85% sickle\u2010cell disease, 82% sickle\u2010cell trait) were not planning a pregnancy in the next six months, and many used condoms, withdrawal or oral contraceptives.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Socioeconomic disparities exist between young adults with sickle\u2010cell disease and sickle\u2010cell trait. Future research that advances education about how and when to communicate appropriate genetic risk information to partners and children especially for young adults with sickle\u2010cell trait would be beneficial.<\/jats:p><\/jats:sec><jats:sec><jats:title>Relevance to clinical practice<\/jats:title><jats:p>Awareness of the similarities and differences in the family\u2010related characteristics among young adults with sickle\u2010cell disease or trait can allow for more tailored reproductive education.<\/jats:p><\/jats:sec>","DOI":"10.1111\/jocn.13144","type":"journal-article","created":{"date-parts":[[2016,3,13]],"date-time":"2016-03-13T00:29:37Z","timestamp":1457828977000},"page":"1587-1597","source":"Crossref","is-referenced-by-count":6,"title":["Toward understanding family\u2010related characteristics of young adults with sickle\u2010cell disease or sickle\u2010cell trait in the USA"],"prefix":"10.1111","volume":"25","author":[{"given":"Patricia E","family":"Hershberger","sequence":"first","affiliation":[{"name":"College of Nursing University of Illinois at Chicago Chicago IL USA"},{"name":"College of Medicine University of Illinois at Chicago Chicago IL USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Agatha M","family":"Gallo","sequence":"additional","affiliation":[{"name":"College of Nursing University of Illinois at Chicago Chicago IL USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Robert","family":"Molokie","sequence":"additional","affiliation":[{"name":"College of Medicine University of Illinois at Chicago Chicago IL USA"},{"name":"College of Pharmacy University of Illinois at Chicago Chicago IL USA"},{"name":"Jesse Brown VA Medical Center Chicago IL USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Alexis A","family":"Thompson","sequence":"additional","affiliation":[{"name":"Feinberg School of Medicine Northwestern University Chicago IL USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Marie L","family":"Suarez","sequence":"additional","affiliation":[{"name":"College of Nursing University of Illinois at Chicago Chicago IL USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Yingwei","family":"Yao","sequence":"additional","affiliation":[{"name":"College of Nursing University of Florida Gainesville FL USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Constance M","family":"Dallas","sequence":"additional","affiliation":[{"name":"College of Nursing University of Illinois at Chicago Chicago IL USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Diana J","family":"Wilkie","sequence":"additional","affiliation":[{"name":"College of Nursing University of Florida Gainesville FL USA"},{"name":"Prairieview Trust College of Nursing University of Florida Gainesville FL USA"},{"name":"Center of Excellence in Palliative Care Research College of Nursing University of Florida Gainesville FL USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2016,3,11]]},"reference":[{"key":"e_1_2_12_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0027-9684(15)31113-5"},{"key":"e_1_2_12_3_1","doi-asserted-by":"publisher","DOI":"10.1080\/0264683021000060057"},{"key":"e_1_2_12_4_1","unstructured":"BernsteinS HansenCJ&ProjectUNM(2006)Public Choices Private Decisions: Sexual and Reproductive Health and the Millennium Development Goals. 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