2.50
Hdl Handle:
http://hdl.handle.net/10755/158840
Type:
Presentation
Title:
Parent Decision Making in Pediatric Research
Abstract:
Parent Decision Making in Pediatric Research
Conference Sponsor:Midwest Nursing Research Society
Conference Year:2010
Author:Angst, Denise, PhD
P.I. Institution Name:Advocate Center for Pediatric Research
Title:Dept. of Pediatrics, 2 South
Contact Address:Lutheran General Children's Hospital, 1775 Dempster St., Park Ridge, IL, 60068, USA
Contact Telephone:847-723-5180
Co-Authors:B. Coyle, Institutional Review Board, Advocate Health Care, Oak Brook, IL; E. Hadley, D.B. Angst, , Advocate Center for Pediatric Research, Oak Brook, IL;
Participation of children in research raises complex social, psychological, ethical, and regulatory concerns for children, their families, and the health professionals involved. These issues are especially true of children's participation in clinical research when their conditions are life-threatening or when there is little time to make this decision. Much of the previous research related to parents' decision making around children's participation in research has been conducted in the context of pediatric cancer or surgical research. We know little about parents' decision making regarding children's participation in clinical research outside of these areas, and how this decision making varies across illness and other contexts. The purpose of this study was to develop and pilot test a survey to examine parent decision making regarding pediatric research in a number of different clinical areas. Parents at two children's hospitals were invited to participate within eight weeks of being approached to enroll their child in a clinical research study. To date, 34 surveys have been received, representing children involved in both inpatient and outpatient research in neonatology, cardiology, neurology, and oncology. Eight (24%) parents declined to have their child participate in the original study; 26 (76%) chose to participate. Although, the majority (77%) made their decision within 24 hours, parents were satisfied with how the study was explained to them (88%) and their final decision regarding participation (91%). Most parents who declined participation noted that they were focused on their child's care or saw the risks of the research outweighing the benefits (67%). Although 71% of parents noted that they were worried about their children's health at the time of approach, few parents identified that they were confused (6%) or overwhelmed (15%) by the research, and most (94%) believed that participating in the research would help other children in the future. As more children are being included in clinical research as a result of recent initiatives, these and other findings will be valuable to nurses and other health care professionals in better understanding the experience of parents and in providing guidance to improve our practices in this area.
Repository Posting Date:
26-Oct-2011
Date of Publication:
17-Oct-2011
Sponsors:
Midwest Nursing Research Society

Full metadata record

DC FieldValue Language
dc.typePresentationen_GB
dc.titleParent Decision Making in Pediatric Researchen_GB
dc.identifier.urihttp://hdl.handle.net/10755/158840-
dc.description.abstract<table><tr><td colspan="2" class="item-title">Parent Decision Making in Pediatric Research</td></tr><tr class="item-sponsor"><td class="label">Conference Sponsor:</td><td class="value">Midwest Nursing Research Society</td></tr><tr class="item-year"><td class="label">Conference Year:</td><td class="value">2010</td></tr><tr class="item-author"><td class="label">Author:</td><td class="value">Angst, Denise, PhD</td></tr><tr class="item-institute"><td class="label">P.I. Institution Name:</td><td class="value">Advocate Center for Pediatric Research</td></tr><tr class="item-author-title"><td class="label">Title:</td><td class="value">Dept. of Pediatrics, 2 South</td></tr><tr class="item-address"><td class="label">Contact Address:</td><td class="value">Lutheran General Children's Hospital, 1775 Dempster St., Park Ridge, IL, 60068, USA</td></tr><tr class="item-phone"><td class="label">Contact Telephone:</td><td class="value">847-723-5180</td></tr><tr class="item-email"><td class="label">Email:</td><td class="value">denise.angst@advocatehealth.com</td></tr><tr class="item-co-authors"><td class="label">Co-Authors:</td><td class="value">B. Coyle, Institutional Review Board, Advocate Health Care, Oak Brook, IL; E. Hadley, D.B. Angst, , Advocate Center for Pediatric Research, Oak Brook, IL;</td></tr><tr><td colspan="2" class="item-abstract">Participation of children in research raises complex social, psychological, ethical, and regulatory concerns for children, their families, and the health professionals involved. These issues are especially true of children's participation in clinical research when their conditions are life-threatening or when there is little time to make this decision. Much of the previous research related to parents' decision making around children's participation in research has been conducted in the context of pediatric cancer or surgical research. We know little about parents' decision making regarding children's participation in clinical research outside of these areas, and how this decision making varies across illness and other contexts. The purpose of this study was to develop and pilot test a survey to examine parent decision making regarding pediatric research in a number of different clinical areas. Parents at two children's hospitals were invited to participate within eight weeks of being approached to enroll their child in a clinical research study. To date, 34 surveys have been received, representing children involved in both inpatient and outpatient research in neonatology, cardiology, neurology, and oncology. Eight (24%) parents declined to have their child participate in the original study; 26 (76%) chose to participate. Although, the majority (77%) made their decision within 24 hours, parents were satisfied with how the study was explained to them (88%) and their final decision regarding participation (91%). Most parents who declined participation noted that they were focused on their child's care or saw the risks of the research outweighing the benefits (67%). Although 71% of parents noted that they were worried about their children's health at the time of approach, few parents identified that they were confused (6%) or overwhelmed (15%) by the research, and most (94%) believed that participating in the research would help other children in the future. As more children are being included in clinical research as a result of recent initiatives, these and other findings will be valuable to nurses and other health care professionals in better understanding the experience of parents and in providing guidance to improve our practices in this area.</td></tr></table>en_GB
dc.date.available2011-10-26T21:26:53Z-
dc.date.issued2011-10-17en_GB
dc.date.accessioned2011-10-26T21:26:53Z-
dc.description.sponsorshipMidwest Nursing Research Societyen_GB
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