A pilot study to explore knowledge, attitudes, and beliefs about sickle cell trait and disease. 2009

Kruti Acharya, and Colleen Walsh Lang, and Lainie Friedman Ross
Department of Pediatrics, MacLean Center for Clinical Medical Ethics, University of Chicago, Chicago, Illinois 60637, USA. kacharya@peds.bsd.uchicago.edu

BACKGROUND In the United States, newborn screening programs universally identify newborns with sickle cell disease (SCD) and heterozygote carriers (sickle cell trait [SCT]). Although there is a consensus to disclose SCT to parents, there are limited empirical data about whether and how this information is transmitted to the carrier children. METHODS In-person questionnaires were administered to parents with SCT and parents of a child with either SCD or SCT to examine the knowledge, attitudes, beliefs, and disclosure patterns about SCT of parents. RESULTS Fifty-three adults were interviewed, half (27) of whom had a child with SCD. There was significant misunderstanding about sickle cell inheritance (mean score, 68%), but parents who have a child with SCD have better knowledge compared to those without a child with SCD (78% vs 58%, p = .002). Respondents perceive minimal stigma associated with SCT. Unless there is an affected proband, individuals with SCT rarely receive counseling or education outside of the family. CONCLUSIONS There is significant misinformation about what it means to be a carrier and its health and reproductive implications. Formal professional counseling is rare, especially for those families without an affected proband. Strategies to increase the utilization of counseling and improve genetic literacy are necessary.

UI MeSH Term Description Entries
D007722 Health Knowledge, Attitudes, Practice Knowledge, attitudes, and associated behaviors which pertain to health-related topics such as PATHOLOGIC PROCESSES or diseases, their prevention, and treatment. This term refers to non-health workers and health workers (HEALTH PERSONNEL). Knowledge, Attitudes, Practice
D010865 Pilot Projects Small-scale tests of methods and procedures to be used on a larger scale if the pilot study demonstrates that these methods and procedures can work. Pilot Studies,Pilot Study,Pilot Project,Project, Pilot,Projects, Pilot,Studies, Pilot,Study, Pilot
D011795 Surveys and Questionnaires Collections of data obtained from voluntary subjects. The information usually takes the form of answers to questions, or suggestions. Community Survey,Nonrespondent,Questionnaire,Questionnaires,Respondent,Survey,Survey Method,Survey Methods,Surveys,Baseline Survey,Community Surveys,Methodology, Survey,Nonrespondents,Questionnaire Design,Randomized Response Technique,Repeated Rounds of Survey,Respondents,Survey Methodology,Baseline Surveys,Design, Questionnaire,Designs, Questionnaire,Methods, Survey,Questionnaire Designs,Questionnaires and Surveys,Randomized Response Techniques,Response Technique, Randomized,Response Techniques, Randomized,Survey, Baseline,Survey, Community,Surveys, Baseline,Surveys, Community,Techniques, Randomized Response
D003376 Counseling The giving of advice and assistance to individuals with educational or personal problems.
D003469 Culture A collective expression for all behavior patterns acquired and socially transmitted through symbols. Culture includes customs, traditions, and language. Cultural Relativism,Customs,Beliefs,Cultural Background,Background, Cultural,Backgrounds, Cultural,Belief,Cultural Backgrounds,Cultural Relativisms,Cultures,Relativism, Cultural,Relativisms, Cultural
D006579 Heterozygote An individual having different alleles at one or more loci regarding a specific character. Carriers, Genetic,Genetic Carriers,Carrier, Genetic,Genetic Carrier,Heterozygotes
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D000328 Adult A person having attained full growth or maturity. Adults are of 19 through 44 years of age. For a person between 19 and 24 years of age, YOUNG ADULT is available. Adults
D000755 Anemia, Sickle Cell A disease characterized by chronic hemolytic anemia, episodic painful crises, and pathologic involvement of many organs. It is the clinical expression of homozygosity for hemoglobin S. Hemoglobin S Disease,HbS Disease,Sickle Cell Anemia,Sickle Cell Disease,Sickle Cell Disorders,Sickling Disorder Due to Hemoglobin S,Anemias, Sickle Cell,Cell Disease, Sickle,Cell Diseases, Sickle,Cell Disorder, Sickle,Cell Disorders, Sickle,Disease, Hemoglobin S,Hemoglobin S Diseases,Sickle Cell Anemias,Sickle Cell Diseases,Sickle Cell Disorder
D012805 Sickle Cell Trait The condition of being heterozygous for hemoglobin S. Cell Trait, Sickle,Cell Traits, Sickle,Sickle Cell Traits,Trait, Sickle Cell,Traits, Sickle Cell

Related Publications

Kruti Acharya, and Colleen Walsh Lang, and Lainie Friedman Ross
January 1974, JAMA,
Kruti Acharya, and Colleen Walsh Lang, and Lainie Friedman Ross
January 2021, Revista brasileira de enfermagem,
Kruti Acharya, and Colleen Walsh Lang, and Lainie Friedman Ross
January 2018, Social work in public health,
Kruti Acharya, and Colleen Walsh Lang, and Lainie Friedman Ross
May 2006, Journal of the National Medical Association,
Kruti Acharya, and Colleen Walsh Lang, and Lainie Friedman Ross
May 2024, Women's health issues : official publication of the Jacobs Institute of Women's Health,
Kruti Acharya, and Colleen Walsh Lang, and Lainie Friedman Ross
March 2008, The Nursing clinics of North America,
Kruti Acharya, and Colleen Walsh Lang, and Lainie Friedman Ross
November 2011, Clinical journal of sport medicine : official journal of the Canadian Academy of Sport Medicine,
Kruti Acharya, and Colleen Walsh Lang, and Lainie Friedman Ross
April 2002, Journal of transcultural nursing : official journal of the Transcultural Nursing Society,
Kruti Acharya, and Colleen Walsh Lang, and Lainie Friedman Ross
June 2000, Revista medica de Chile,
Kruti Acharya, and Colleen Walsh Lang, and Lainie Friedman Ross
December 2021, Acupuncture in medicine : journal of the British Medical Acupuncture Society,
Copied contents to your clipboard!