Trusted Resources: Evidence & Education
Scientific literature and patient education texts
Mistrust of Pediatric Sickle Cell Disease Clinical Trials Research
source: American Journal of Preventive Medicine
year: 2016
authors: Stevens EM, Patterson CA, Li YB, Smith-Whitley K, Barakat LP
summary/abstract:INTRODUCTION:
Sickle cell disease (SCD) research is hampered by disparities in participation due in part to mistrust of research among racial/ethnic minorities. Beyond the historic context of research misconduct, little is known about the associations of social ecologic factors with mistrust and of mistrust with SCD clinical trials enrollment. This study evaluated proximal (age, gender, disease severity, perceived stress, SES) and distal (religious beliefs, social support, instrumental support) factors related to mistrust of research among caregivers of children with SCD and adolescents and young adults (AYAs) with SCD.
METHODS:
Over an 18-month period (2009-2010), participants completed questionnaires of perceived barriers and benefits to clinical trials enrollment, perceived stress, and self-reported demographic and disease-related information. Analyses (January-June 2015) used multivariable linear regressions to evaluate predictors of mistrust.
RESULTS:
Data were analyzed for 154 caregivers (mean age, 38.75 years; SD=9.56 years; 90.30% female) and 88 AYAs (mean age, 24.76 years; SD=7.25 years; 46.40% female). Among caregivers (full model, R(2)=0.14, p≤0.001), greater mistrust was explained by higher perceived stress (β=0.04, p=0.052); religious beliefs (β=0.61, p≤0.001); and greater instrumental support (β=0.07, p=0.044). Among AYAs (full model, R(2)=0.18, p≤0.001), higher mistrust was explained by being male (β=-0.56, p≤0.001) and lower instrumental support (β=-0.11, p=0.016). Mistrust was significantly greater among caregivers that reported no prior involvement in medical research (p=0.003).
CONCLUSIONS:
By understanding the complexity through which social ecologic factors contribute to mistrust, researchers may create targeted strategies to address mistrust and increase engagement in SCD research for caregivers and AYAs.
DOI: 10.1016/j.amepre.2016.01.024
read more full text
Related Content
-
PROFILE: Asiata, 90-year-old sickler who has 5 children and has gone to Mecca 13 timesAsiata Onikoyi-Laguda, the woman believe...
-
Peer-to-Peer Mentoring Program – SCDAAThe goal of the program is to support th...
-
Podcast: How New Gene Therapies for SCD May Impact Women’s FertilityAs we closed 2023, the Food and Drug Ad...
-
Successful utilization of an electronic pain diary in a multinational phase 3 interventional study in pediatric sick...Background: Patients with sickle cell a...
-
Melissa S. CrearyI was working on Gilberto’s narrative ...
-
World Sickle Cell Dayhttps://www.youtube.com/watch?v=cj-WTIDi...
-
Today’s Faces of Sickle Cell Disease: Linda Thomas WadeLinda Thomas is a health care educator, ...
To improve your experience on this site, we use cookies. This includes cookies essential for the basic functioning of our website, cookies for analytics purposes, and cookies enabling us to personalize site content. By clicking on 'Accept' or any content on this site, you agree that cookies can be placed. You may adjust your browser's cookie settings to suit your preferences. More Information
The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.