Each year 15-20 infants with sickle cell disease and 600 infants with trait are born in western Pennsylvania with no significant decrease in annual incidence. A 2006 study by Childrens Hospital of Pittsburghs Comprehensive Hemoglobinopathy Program surveying African-American women in the prenatal setting found that these women have a high perception of the severity of sickle cell disease and the importance of sickle cell trait screening but a low perceived susceptibility to sickle cell disease. The current research was designed as a qualitative follow-up study to assess African-American community members attitudes and knowledge of sickle cell, prenatal testing, and newborn screening, to characterize barriers to education and awareness of newborn screening and sickle cell, and to determine if a community-based intervention could be developed to improve awareness of these topics. Four focus groups were conducted with 35 participants at the Kingsley Association in a predominantly African-American community of Pittsburgh. Participants were recruited from the Healthy Black Family Project. Transcripts were analyzed using thematic analysis and demographic information was compiled from a pre-discussion survey. Qualitative analysis has demonstrated that participants fall into one of three knowledge categories: the unaware, those with accurate but incomplete information, and those with misinformation. Participants have an understanding of sickle cell disease course. However, inheritance of sickle cell and the personal risk to have children or family members with the condition is not well understood. Participants have knowledge of the methods and indications for prenatal testing and value prenatal testing for the opportunities for choice and awareness. Risks of prenatal testing were identified as miscarriage as well as personal and family stress. Newborn screening was believed to be beneficial for preparation and treatment. Barriers to education and awareness of sickle cell and newborn screening were classified as personal, familial, and societal. The public health significance of this work is the identification of community members who are eager to decrease the prevalence of sickle cell in their community and the potential to design community discussion groups which address genetics topics and provide African-Americans with the tools to communicate with family and physicians about risk for sickle cell.
| Identifer | oai:union.ndltd.org:PITT/oai:PITTETD:etd-04122007-193029 |
| Date | 26 June 2007 |
| Creators | Hoffman, Katie Anne |
| Contributors | Elizabeth Gettig, MS, CGC, Robin E. Grubs, PhD, CGC, Stephen B. Thomas, PhD, Lakshmanan Krishnamurti, MD |
| Publisher | University of Pittsburgh |
| Source Sets | University of Pittsburgh |
| Language | English |
| Detected Language | English |
| Type | text |
| Format | application/pdf |
| Source | http://etd.library.pitt.edu/ETD/available/etd-04122007-193029/ |
| Rights | unrestricted, I hereby certify that, if appropriate, I have obtained and attached hereto a written permission statement from the owner(s) of each third party copyrighted matter to be included in my thesis, dissertation, or project report, allowing distribution as specified below. I certify that the version I submitted is the same as that approved by my advisory committee. I hereby grant to University of Pittsburgh or its agents the non-exclusive license to archive and make accessible, under the conditions specified below, my thesis, dissertation, or project report in whole or in part in all forms of media, now or hereafter known. I retain all other ownership rights to the copyright of the thesis, dissertation or project report. I also retain the right to use in future works (such as articles or books) all or part of this thesis, dissertation, or project report. |
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