title: 'It means everyone should know their status': exploring lay conceptions of sickle cell trait and sickle cell trait screening among African Americans within middle reproductive age.
abstract: This study examined the meaning of sickle cell trait and sickle cell trait screening from the lay perspective of African Americans.
  
  
  
  African Americans (N = 300), ages 18-35 and unaware of their sickle cell trait status, completed two open-ended questions from a larger survey. One question asked for their understanding of sickle cell trait; the other asked for their understanding of sickle cell trait screening. Content analysis occurred in two phases: (1) In vivo and holistic coding; and (2) focused coding.
  
  
  
  Four categories emerged illustrating lay conceptions of sickle cell trait; (1) Perceived as an illness; (2) Perceived recognition of the inheritance pattern of sickle cell trait; (3) Perceived lack of knowledge of sickle cell trait; and (4) Perceived importance of sickle cell trait. Five categories emerged illustrating lay conceptions for sickle cell trait screening: (1) Perceived recognition that screening means getting tested for sickle cell trait; (2) Perceived lack of knowledge of sickle cell trait screening; (3) Perceived health benefit of sickle cell trait screening; (4) Perceived importance of sickle cell trait screening; and (5) Perceived barriers to sickle cell trait screening.
  
  
  
  Sickle cell trait and sickle cell trait screening are concepts that are both regarded as important among this high-risk population. However, there is still misunderstanding concerning the hereditary nature and reproductive implications of sickle cell trait. Interventions seeking to improve communication on the need for sickle cell trait screening should begin by identifying what the population at large understands, knows and/or believes to improve their ability to make informed health decisions.
authors.affiliation: a Department of Family and Community Medicine , Meharry Medical College , Nashville , USA.
authors.forename: Tilicia L
authors.identifier: 0000-0002-9303-5266
authors.initials: TL
authors.lastname: Mayo-Gamble
authors.affiliation: b Department of Applied Health Science , Indiana University , Bloomington , USA.
authors.forename: Priscilla A
authors.initials: PA
authors.lastname: Barnes
authors.affiliation: c Department of Internal Medicine , Meharry Medical College , Nashville , USA.
authors.forename: Jennifer
authors.initials: J
authors.lastname: Cunningham Erves
authors.affiliation: b Department of Applied Health Science , Indiana University , Bloomington , USA.
authors.forename: Susan E
authors.initials: SE
authors.lastname: Middlestadt
authors.affiliation: b Department of Applied Health Science , Indiana University , Bloomington , USA.
authors.forename: Hsien-Chang
authors.initials: HC
authors.lastname: Lin
mesh_terms: D000328:Adult; D001741:Black or African American / Q000706:statistics & numerical data*; D000755:Anemia, Sickle Cell / Q000453:epidemiology / Q000208:ethnology*; D003657:Decision Making; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007196:Indiana; D008297:Male; D008403:Mass Screening / Q000379:methods*; D060728:Reproductive Health / Q000208:ethnology*; D012805:Sickle Cell Trait / Q000235:genetics*; D011795:Surveys and Questionnaires
keywords: Screening; content analysis; lay perspective; sickle cell trait