Toward understanding family-related characteristics of young adults with sickle-cell disease or sickle-cell trait in the USA

Patricia E. Hershberger*, Agatha M. Gallo, Robert Molokie, Alexis A Thompson, Marie L. Suarez, Yingwei Yao, Constance M. Dallas, Diana J. Wilkie

*Corresponding author for this work

Research output: Contribution to journalArticle

Abstract

Aims and objectives: To describe the family-related characteristics of young adults with sickle-cell disease or sickle-cell trait prior to taking part in a randomised controlled trial on sickle-cell reproductive health education. Background: There is a critical need for educational programmes that target the reproductive needs of young adults with sickle-cell disease or trait. However, little is known about the family-related characteristics (i.e., demographic attributes and reproductive health behaviours) in which these young adults live. Design: A descriptive cross-sectional analysis. Method: At study enrolment, 234 young adults (mean age = 25·9 years, 65% female) completed the SCKnowIQ questionnaire. Descriptive statistics depict the demographic attributes and reproductive health behaviours of young adults with sickle-cell disease (n = 138) or trait (n = 96). For group comparisons, independent t tests or Fisher's tests were used, as appropriate. Results: Young adults with sickle-cell trait had significantly higher education, income and health insurance than those with sickle-cell disease. Both groups believed that sickle-cell disease was a severe condition. A majority of young adults with sickle-cell disease (65%) had no children compared to 42% of those with sickle-cell trait. Most young adults (85% sickle-cell disease, 82% sickle-cell trait) were not planning a pregnancy in the next six months, and many used condoms, withdrawal or oral contraceptives. Conclusions: Socioeconomic disparities exist between young adults with sickle-cell disease and sickle-cell 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-cell trait would be beneficial. Relevance to clinical practice: Awareness of the similarities and differences in the family-related characteristics among young adults with sickle-cell disease or trait can allow for more tailored reproductive education.

Original languageEnglish (US)
Pages (from-to)1587-1597
Number of pages11
JournalJournal of Clinical Nursing
Volume25
Issue number11-12
DOIs
StatePublished - Jun 1 2016

Fingerprint

Sickle Cell Trait
Sickle Cell Anemia
Young Adult
Reproductive Health
Reproductive Behavior
Health Behavior
Education
Demography
Condoms
Health Insurance
Oral Contraceptives
Health Education
Randomized Controlled Trials

Keywords

  • Family characteristics
  • Family planning education
  • Family research
  • Genetic counselling
  • Reproductive health behaviours
  • Sickle-cell disorders

ASJC Scopus subject areas

  • Nursing(all)

Cite this

Hershberger, Patricia E. ; Gallo, Agatha M. ; Molokie, Robert ; Thompson, Alexis A ; Suarez, Marie L. ; Yao, Yingwei ; Dallas, Constance M. ; Wilkie, Diana J. / Toward understanding family-related characteristics of young adults with sickle-cell disease or sickle-cell trait in the USA. In: Journal of Clinical Nursing. 2016 ; Vol. 25, No. 11-12. pp. 1587-1597.
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abstract = "Aims and objectives: To describe the family-related characteristics of young adults with sickle-cell disease or sickle-cell trait prior to taking part in a randomised controlled trial on sickle-cell reproductive health education. Background: There is a critical need for educational programmes that target the reproductive needs of young adults with sickle-cell disease or trait. However, little is known about the family-related characteristics (i.e., demographic attributes and reproductive health behaviours) in which these young adults live. Design: A descriptive cross-sectional analysis. Method: At study enrolment, 234 young adults (mean age = 25·9 years, 65{\%} female) completed the SCKnowIQ questionnaire. Descriptive statistics depict the demographic attributes and reproductive health behaviours of young adults with sickle-cell disease (n = 138) or trait (n = 96). For group comparisons, independent t tests or Fisher's tests were used, as appropriate. Results: Young adults with sickle-cell trait had significantly higher education, income and health insurance than those with sickle-cell disease. Both groups believed that sickle-cell disease was a severe condition. A majority of young adults with sickle-cell disease (65{\%}) had no children compared to 42{\%} of those with sickle-cell trait. Most young adults (85{\%} sickle-cell disease, 82{\%} sickle-cell trait) were not planning a pregnancy in the next six months, and many used condoms, withdrawal or oral contraceptives. Conclusions: Socioeconomic disparities exist between young adults with sickle-cell disease and sickle-cell 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-cell trait would be beneficial. Relevance to clinical practice: Awareness of the similarities and differences in the family-related characteristics among young adults with sickle-cell disease or trait can allow for more tailored reproductive education.",
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Toward understanding family-related characteristics of young adults with sickle-cell disease or sickle-cell trait in the USA. / Hershberger, Patricia E.; Gallo, Agatha M.; Molokie, Robert; Thompson, Alexis A; Suarez, Marie L.; Yao, Yingwei; Dallas, Constance M.; Wilkie, Diana J.

In: Journal of Clinical Nursing, Vol. 25, No. 11-12, 01.06.2016, p. 1587-1597.

Research output: Contribution to journalArticle

TY - JOUR

T1 - Toward understanding family-related characteristics of young adults with sickle-cell disease or sickle-cell trait in the USA

AU - Hershberger, Patricia E.

AU - Gallo, Agatha M.

AU - Molokie, Robert

AU - Thompson, Alexis A

AU - Suarez, Marie L.

AU - Yao, Yingwei

AU - Dallas, Constance M.

AU - Wilkie, Diana J.

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N2 - Aims and objectives: To describe the family-related characteristics of young adults with sickle-cell disease or sickle-cell trait prior to taking part in a randomised controlled trial on sickle-cell reproductive health education. Background: There is a critical need for educational programmes that target the reproductive needs of young adults with sickle-cell disease or trait. However, little is known about the family-related characteristics (i.e., demographic attributes and reproductive health behaviours) in which these young adults live. Design: A descriptive cross-sectional analysis. Method: At study enrolment, 234 young adults (mean age = 25·9 years, 65% female) completed the SCKnowIQ questionnaire. Descriptive statistics depict the demographic attributes and reproductive health behaviours of young adults with sickle-cell disease (n = 138) or trait (n = 96). For group comparisons, independent t tests or Fisher's tests were used, as appropriate. Results: Young adults with sickle-cell trait had significantly higher education, income and health insurance than those with sickle-cell disease. Both groups believed that sickle-cell disease was a severe condition. A majority of young adults with sickle-cell disease (65%) had no children compared to 42% of those with sickle-cell trait. Most young adults (85% sickle-cell disease, 82% sickle-cell trait) were not planning a pregnancy in the next six months, and many used condoms, withdrawal or oral contraceptives. Conclusions: Socioeconomic disparities exist between young adults with sickle-cell disease and sickle-cell 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-cell trait would be beneficial. Relevance to clinical practice: Awareness of the similarities and differences in the family-related characteristics among young adults with sickle-cell disease or trait can allow for more tailored reproductive education.

AB - Aims and objectives: To describe the family-related characteristics of young adults with sickle-cell disease or sickle-cell trait prior to taking part in a randomised controlled trial on sickle-cell reproductive health education. Background: There is a critical need for educational programmes that target the reproductive needs of young adults with sickle-cell disease or trait. However, little is known about the family-related characteristics (i.e., demographic attributes and reproductive health behaviours) in which these young adults live. Design: A descriptive cross-sectional analysis. Method: At study enrolment, 234 young adults (mean age = 25·9 years, 65% female) completed the SCKnowIQ questionnaire. Descriptive statistics depict the demographic attributes and reproductive health behaviours of young adults with sickle-cell disease (n = 138) or trait (n = 96). For group comparisons, independent t tests or Fisher's tests were used, as appropriate. Results: Young adults with sickle-cell trait had significantly higher education, income and health insurance than those with sickle-cell disease. Both groups believed that sickle-cell disease was a severe condition. A majority of young adults with sickle-cell disease (65%) had no children compared to 42% of those with sickle-cell trait. Most young adults (85% sickle-cell disease, 82% sickle-cell trait) were not planning a pregnancy in the next six months, and many used condoms, withdrawal or oral contraceptives. Conclusions: Socioeconomic disparities exist between young adults with sickle-cell disease and sickle-cell 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-cell trait would be beneficial. Relevance to clinical practice: Awareness of the similarities and differences in the family-related characteristics among young adults with sickle-cell disease or trait can allow for more tailored reproductive education.

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