2.50
Hdl Handle:
http://hdl.handle.net/10755/163188
Category:
Abstract
Type:
Presentation
Title:
Reasons Parents Enroll Their Child in Non-Therapeutic Research Trials
Author(s):
Twomey, John G.
Author Details:
John G. Twomey, PNP, PhD, MGH, MGH Institute of Health Professions, Boston, Massachusetts, USA, email: jtwomey@mghihp.edu
Abstract:
Purpose: Knowledge about what factors affect the enrollment of children in clinical research studies is crucial to increasing the amount of pediatric health data available. This study reports parental responses regarding the effect of requests to enroll their child in a clinical research project. Background: Recent U.S. government directives mandate increases in the amount of pediatric research data investigators will have to collect and should increase the numbers of children between birth and 18 years enrolled in their studies. Specifically, numbers of children in pediatric research should increase. Methods (Design, Participants, Setting, Data Collection, Analytic approach): The population for this study was drawn from approximately 500 families whose children, who were enrolled in a study that recently concluded at the University of Iowa, entitled Predicting Children's Response to Distraction from Pain (DIG Study). Twenty-six parents signed consent forms and twenty parents were interviewed by phone by the PI. A semi-structured interview guide was used to interview 18 parents who had enrolled their children in the DIG Study and two that had refused enrollment. The interviews were audio tape-recorded and then transcribed into written text. Each interview was examined by separating the specific questions into 20 representative topics and noting how the respondents interpreted the questions and then characterized the meaning of the question. Finally, the 20 topics were collapsed into three themes. Results: Three specific themes were identified: 1) Support of Research; 2) Effect of Experience with Research - Past and Present; and 3) Nature of the Decision to Enroll or Not. These themes and individual topics will be reported and discussed. Conclusions and Implications: This pilot study has displayed the feasibility of eliciting data from parents who have enrolled and declined to enroll their children in non-therapeutic research studies about enrollment decisions. Continued inquiry about such decisions in different study types may provide data that will allow for better informed consent processes.
Repository Posting Date:
27-Oct-2011
Date of Publication:
27-Oct-2011
Conference Date:
2007
Conference Name:
19th Annual Scientific Sessions
Conference Host:
Eastern Nursing Research Society
Conference Location:
Providence, Rhode Island, USA
Description:
Conference theme: Building Communities of Scholarship and Research, held April 12-14, 2007 at The Westin Providence.
Note:
This is an abstract-only submission. If the author has submitted a full-text item based on this abstract, you may find it by browsing the Virginia Henderson Global Nursing e-Repository by author. If author contact information is available in this abstract, please feel free to contact him or her with your queries regarding this submission. Alternatively, please contact the conference host, journal, or publisher (according to the circumstance) for further details regarding this item. If a citation is listed in this record, the item has been published and is available via open-access avenues or a journal/database subscription. Contact your library for assistance in obtaining the as-published article.

Full metadata record

DC FieldValue Language
dc.type.categoryAbstracten_US
dc.typePresentationen_GB
dc.titleReasons Parents Enroll Their Child in Non-Therapeutic Research Trialsen_GB
dc.contributor.authorTwomey, John G.en_US
dc.author.detailsJohn G. Twomey, PNP, PhD, MGH, MGH Institute of Health Professions, Boston, Massachusetts, USA, email: jtwomey@mghihp.eduen_US
dc.identifier.urihttp://hdl.handle.net/10755/163188-
dc.description.abstractPurpose: Knowledge about what factors affect the enrollment of children in clinical research studies is crucial to increasing the amount of pediatric health data available. This study reports parental responses regarding the effect of requests to enroll their child in a clinical research project. Background: Recent U.S. government directives mandate increases in the amount of pediatric research data investigators will have to collect and should increase the numbers of children between birth and 18 years enrolled in their studies. Specifically, numbers of children in pediatric research should increase. Methods (Design, Participants, Setting, Data Collection, Analytic approach): The population for this study was drawn from approximately 500 families whose children, who were enrolled in a study that recently concluded at the University of Iowa, entitled Predicting Children's Response to Distraction from Pain (DIG Study). Twenty-six parents signed consent forms and twenty parents were interviewed by phone by the PI. A semi-structured interview guide was used to interview 18 parents who had enrolled their children in the DIG Study and two that had refused enrollment. The interviews were audio tape-recorded and then transcribed into written text. Each interview was examined by separating the specific questions into 20 representative topics and noting how the respondents interpreted the questions and then characterized the meaning of the question. Finally, the 20 topics were collapsed into three themes. Results: Three specific themes were identified: 1) Support of Research; 2) Effect of Experience with Research - Past and Present; and 3) Nature of the Decision to Enroll or Not. These themes and individual topics will be reported and discussed. Conclusions and Implications: This pilot study has displayed the feasibility of eliciting data from parents who have enrolled and declined to enroll their children in non-therapeutic research studies about enrollment decisions. Continued inquiry about such decisions in different study types may provide data that will allow for better informed consent processes.en_GB
dc.date.available2011-10-27T11:02:58Z-
dc.date.issued2011-10-27en_GB
dc.date.accessioned2011-10-27T11:02:58Z-
dc.conference.date2007en_US
dc.conference.name19th Annual Scientific Sessionsen_US
dc.conference.hostEastern Nursing Research Societyen_US
dc.conference.locationProvidence, Rhode Island, USAen_US
dc.descriptionConference theme: Building Communities of Scholarship and Research, held April 12-14, 2007 at The Westin Providence.en_US
dc.description.noteThis is an abstract-only submission. If the author has submitted a full-text item based on this abstract, you may find it by browsing the Virginia Henderson Global Nursing e-Repository by author. If author contact information is available in this abstract, please feel free to contact him or her with your queries regarding this submission. Alternatively, please contact the conference host, journal, or publisher (according to the circumstance) for further details regarding this item. If a citation is listed in this record, the item has been published and is available via open-access avenues or a journal/database subscription. Contact your library for assistance in obtaining the as-published article.-
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