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Author Notes:

Email: diana.ross@emory.edu

SC, SZ, DB were responsible for the study design and development. SC enrolled the participants, performed the qualitative interviews, and collected the data, and SC and DR performed the qualitative data analysis. SC prepared the first draft of the manuscript, although all of the authors (SZ, DR, LK, and DB) helped to prepare the final draft of this manuscript. All authors read and approved the final manuscript.

The authors would like to thank Lionola Juste, MS for assistance in data collection and table preparation and Melissa Byrne, MPH, RN for protocol development and data monitoring.

Competing interests The authors declare that they have no competing interests.

Subjects:

Research Funding:

T32HP22240 HRSA NRSA for Primary Medical Care Research. National Institutes of Health UL1 RR024153 and UL1TR000005 Grant.

Keywords:

  • Hydroxyurea
  • Sickle cell
  • Decision making
  • Qualitative research

Hydroxyurea therapy for children with sickle cell disease: describing how caregivers make this decision.

Tools:

Journal Title:

BMC Research Notes

Volume:

Volume 8, Number 1

Publisher:

, Pages 372-372

Type of Work:

Article | Final Publisher PDF

Abstract:

BACKGROUND: Hydroxyurea (HU) is underutilized in children with sickle cell disease (SCD) because caregivers frequently decline HU when it is offered. This study explores what impacts this decision. RESULTS: Caregivers of children with clinically severe SCD whose children were offered HU previously were interviewed. We used a qualitative analytical approach to analyze their telephone interview transcripts. Caregivers who chose HU (n = 9) reported their children had severe SCD, sought detailed information about HU, and accepted HU as a preventative therapy. In contrast, caregivers who did not choose HU (n = 10) did not perceive their children as having severe SCD and did not question their child's provider about HU. CONCLUSIONS: This study identifies specific areas that providers should address to when they discuss HU with families so that they can make informed decisions. Our study also uncovered factors that are important to consider when designing future interventions to improve hydroxyurea acceptance and when developing decision-aid tools to assist caregivers of children with SCD who are considering disease modifying therapies.

Copyright information:

© Creary et al. 2015

This is an Open Access article distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits distribution, public display, and publicly performance, distribution of derivative works, making multiple copies, provided the original work is properly cited. This license requires copyright and license notices be kept intact, credit be given to copyright holder and/or author.

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