Literature DB >> 26711142

Educating Parents About Pediatric Research: Children and Clinical Studies Website Qualitative Evaluation.

Lisa D Marceau1, Lisa C Welch2, Victoria L Pemberton3, Gail D Pearson3.   

Abstract

A gap in information about pediatric clinical trials exists, and parents remain uncertain about what is involved in research studies involving children. We aimed to understand parent perspectives about pediatric clinical research after viewing the online Children and Clinical Studies (CaCS) program. Using a qualitative descriptive study design, we conducted focus groups with parents and phone interviews with physicians. Three themes emerged providing approaches to improve parent's understanding of clinical research by including strategies where parents (a) hear from parents like themselves to learn about pediatric research, (b) receive general clinical research information to complement study-specific details, and (c) are provided more information about the role of healthy child volunteers. Parents found the website a valuable tool that would help them make a decision about what it means to participate in research. This tool can assist parents, providers, and researchers by connecting general information with study-specific information.
© The Author(s) 2015.

Entities:  

Keywords:  New England region; children; education, patient; health information seeking; qualitative analysis; research, qualitative methods; technology, use in research

Mesh:

Year:  2015        PMID: 26711142      PMCID: PMC5527330          DOI: 10.1177/1049732315616620

Source DB:  PubMed          Journal:  Qual Health Res        ISSN: 1049-7323


  28 in total

1.  Parents' perceptions of research with newborns.

Authors:  Nalini Singhal; Kathleen Oberle; Ellen Burgess; Joelene Huber-Okrainec
Journal:  J Perinatol       Date:  2002-01       Impact factor: 2.521

2.  What do parents think about enrolling their premature babies in several research studies?

Authors:  C J Morley; R Lau; P G Davis; C Morse
Journal:  Arch Dis Child Fetal Neonatal Ed       Date:  2005-05       Impact factor: 5.747

3.  What factors are important to parents making decisions about neonatal research?

Authors:  K S Hoehn; G Wernovsky; J Rychik; J W Gaynor; T L Spray; C Feudtner; R M Nelson
Journal:  Arch Dis Child Fetal Neonatal Ed       Date:  2005-05       Impact factor: 5.747

4.  Adolescents' understanding of research concepts: a focus group study.

Authors:  Diane R Blake; Celeste A Lemay; Margaret H Kearney; Kathleen M Mazor
Journal:  Arch Pediatr Adolesc Med       Date:  2011-06

5.  Factors that influence parental decisions to participate in clinical research: consenters vs nonconsenters.

Authors:  Alejandro Hoberman; Nader Shaikh; Sonika Bhatnagar; Mary Ann Haralam; Diana H Kearney; D Kathleen Colborn; Michelle L Kienholz; Li Wang; Clareann H Bunker; Ron Keren; Myra A Carpenter; Saul P Greenfield; Hans G Pohl; Ranjiv Mathews; Marva Moxey-Mims; Russell W Chesney
Journal:  JAMA Pediatr       Date:  2013-06       Impact factor: 16.193

6.  Improving informed consent: suggestions from parents of children with leukemia.

Authors:  Michelle L Eder; Amy D Yamokoski; Peter W Wittmann; Eric D Kodish
Journal:  Pediatrics       Date:  2007-04       Impact factor: 7.124

7.  Race, medical researcher distrust, perceived harm, and willingness to participate in cardiovascular prevention trials.

Authors:  Joel B Braunstein; Noëlle S Sherber; Steven P Schulman; Eric L Ding; Neil R Powe
Journal:  Medicine (Baltimore)       Date:  2008-01       Impact factor: 1.889

8.  Parental opinions about clinical research.

Authors:  Marilyn C Morris; Deborah Besner; Hector Vazquez; Robert M Nelson; Ruth L Fischbach
Journal:  J Pediatr       Date:  2007-08-23       Impact factor: 4.406

9.  Racial/ethnic diversity in children's oncology clinical trials: ten years later.

Authors:  Mary Jo Lund; Mark T Eliason; Ann E Haight; Kevin C Ward; John L Young; Rebecca D Pentz
Journal:  Cancer       Date:  2009-08-15       Impact factor: 6.860

10.  Motivations of mothers to enroll their newborn infants in general clinical research on well-infant care and development.

Authors:  Ayala Maayan-Metzger; Peri Kedem-Friedrich; Jacob Kuint
Journal:  Pediatrics       Date:  2008-03       Impact factor: 7.124

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  3 in total

1.  The Voice of Parents of Children With a Congenital Anomaly - A EUROlinkCAT Study.

Authors:  Kristina Garne Holm; Amanda Julie Neville; Anna Pierini; Anna Latos Bielenska; Anna Jamry-Dziurla; Clara Cavero-Carbonell; Ester Garne; Jane Clemensen
Journal:  Front Pediatr       Date:  2021-11-29       Impact factor: 3.418

2.  Keep Calm and Carry on: Parental Opinions on Improving Clinical Dietary Trials for Young Children.

Authors:  Analise Nicholl; Therese A O'Sullivan
Journal:  Nutrients       Date:  2018-08-25       Impact factor: 5.717

3.  Understanding parents' decision-making on participation in clinical trials in children's heart surgery: a qualitative study.

Authors:  Nigel E Drury; Julie C Menzies; Clare J Taylor; Timothy J Jones; Anna C Lavis
Journal:  BMJ Open       Date:  2021-02-23       Impact factor: 2.692

  3 in total

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