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

Creary S, Zickmund S, Ross D, Krishnamurti L, Bogen DL - BMC Res Notes (2015)

Bottom Line: 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.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.

View Article: PubMed Central - PubMed

Affiliation: Division of Hematology-Oncology, Nationwide Children's Hospital, The Ohio State University, 700 Children's Drive Columbus, Columbus, OH, 43205, USA. susan.creary@nationwidechildrens.org.

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.

No MeSH data available.


Related in: MedlinePlus

The semi-structured interview guide
© Copyright Policy - OpenAccess
Related In: Results  -  Collection

License 1 - License 2
getmorefigures.php?uid=PMC4548690&req=5

Fig1: The semi-structured interview guide

Mentions: The qualitative interviews followed a semi-structured interview guide. (Fig. 1) The interview guide was multidimensional, allowing the interviewer to explore different topical pathways, depending on how respondents answered prior questions. The specific categories that were chosen were based on a literature review of both HU and medical decision making [7–9, 11]. The initial interview guide was pilot tested on volunteers without SCD and the study’s qualitative expert (SZ) and then adjusted to improve the clarity and flow of the questions. The interviewer (SC) conducted all of the interviews over the telephone from March to October 2012. SZ trained SC to listen carefully to each interviewee’s responses to guide the interview spontaneously, avoid repetition, and probe interesting comments to investigate how caregivers made their decision to choose or not choose HU therapy when their child’s provider offered it. At the end of the interview, caregivers completed a short, verbal, demographic survey. A medical transcriptionist transcribed the digitally recorded interviews verbatim for analysis. SC reviewed these transcripts prior to the analysis for transcription accuracy.Fig. 1


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

Creary S, Zickmund S, Ross D, Krishnamurti L, Bogen DL - BMC Res Notes (2015)

The semi-structured interview guide
© Copyright Policy - OpenAccess
Related In: Results  -  Collection

License 1 - License 2
Show All Figures
getmorefigures.php?uid=PMC4548690&req=5

Fig1: The semi-structured interview guide
Mentions: The qualitative interviews followed a semi-structured interview guide. (Fig. 1) The interview guide was multidimensional, allowing the interviewer to explore different topical pathways, depending on how respondents answered prior questions. The specific categories that were chosen were based on a literature review of both HU and medical decision making [7–9, 11]. The initial interview guide was pilot tested on volunteers without SCD and the study’s qualitative expert (SZ) and then adjusted to improve the clarity and flow of the questions. The interviewer (SC) conducted all of the interviews over the telephone from March to October 2012. SZ trained SC to listen carefully to each interviewee’s responses to guide the interview spontaneously, avoid repetition, and probe interesting comments to investigate how caregivers made their decision to choose or not choose HU therapy when their child’s provider offered it. At the end of the interview, caregivers completed a short, verbal, demographic survey. A medical transcriptionist transcribed the digitally recorded interviews verbatim for analysis. SC reviewed these transcripts prior to the analysis for transcription accuracy.Fig. 1

Bottom Line: 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.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.

View Article: PubMed Central - PubMed

Affiliation: Division of Hematology-Oncology, Nationwide Children's Hospital, The Ohio State University, 700 Children's Drive Columbus, Columbus, OH, 43205, USA. susan.creary@nationwidechildrens.org.

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.

No MeSH data available.


Related in: MedlinePlus