Teens with and without Genetic Conditions: Focus Group Findings About Appropriateness and Feasibility of Data Collection Methods

2.50
Hdl Handle:
http://hdl.handle.net/10755/158362
Type:
Presentation
Title:
Teens with and without Genetic Conditions: Focus Group Findings About Appropriateness and Feasibility of Data Collection Methods
Abstract:
Teens with and without Genetic Conditions: Focus Group Findings About Appropriateness and Feasibility of Data Collection Methods
Conference Sponsor:Midwest Nursing Research Society
Conference Year:2010
Author:Gallo, Agatha, PhD, RN, FAAN
P.I. Institution Name:University of Illinois at Chicago
Title:Women, Children and Family
Contact Address:College of Nursing (mc 802), 845 S. Damen Avenue, Chicago, IL, 60612, USA
Contact Telephone:312-996-1868
Co-Authors:A.M. Gallo, E. Madeck, Women, Children and Family Health Science, University of Illinois at Chicago, Chicago, IL; D.B. Angst, Advocate Center for Pediatric Research, Advocate Health Care , Oak Brook, IL; K.A. Knafl, School of Nursing, University of North
Federal agencies and national organizations continue to emphasize the importance of gathering data directly from adolescents and young adults, both to inform interventions and to guide public policy. Nonetheless, there remains little research that includes adolescents and young adults as informants and there are few guidelines for how best to recruit and retain them in research. The purpose of this qualitative study was to elicit input directly from adolescents and young adults on their views about participation in a future study on what they understand about the genetics and their perceptions of risk, illness and information management, and related decision making. Specific aims of this study were to assess the feasibility and appropriateness of the proposed interview guides and data collection methods. The sample included 20 teens and young adults who either had a genetic condition or were a sibling of someone who did. All subjects were recruited from families who gave prior consent to be contacted about future research. Subjects participated in a cognitive interview to assess their interpretation of the proposed interview guide. Based on cognitive theory, cognitive interviewing encompasses a family of techniques for eliciting data on how future respondents will interpret a questionnaire or interview question. Subjects also answered open-ended questions regarding their views about research participation, proposed data collection techniques, and the interview guide. Audio recorded interviews were transcribed verbatim, processed, and coded using thematic analysis. Participants represented a variety of genetic conditions and were between 14 to 22 years of age. Interview themes included: motivation to participate in research, perspectives on approaches and options to data collection, and clarity of interview guide questions. Results provide new information about how adolescents and young adults view research, and give direction for designing a study that will best examine their perspectives in the context of genetic conditions.
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.titleTeens with and without Genetic Conditions: Focus Group Findings About Appropriateness and Feasibility of Data Collection Methodsen_GB
dc.identifier.urihttp://hdl.handle.net/10755/158362-
dc.description.abstract<table><tr><td colspan="2" class="item-title">Teens with and without Genetic Conditions: Focus Group Findings About Appropriateness and Feasibility of Data Collection Methods</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">Gallo, Agatha, PhD, RN, FAAN</td></tr><tr class="item-institute"><td class="label">P.I. Institution Name:</td><td class="value">University of Illinois at Chicago</td></tr><tr class="item-author-title"><td class="label">Title:</td><td class="value">Women, Children and Family</td></tr><tr class="item-address"><td class="label">Contact Address:</td><td class="value">College of Nursing (mc 802), 845 S. Damen Avenue, Chicago, IL, 60612, USA</td></tr><tr class="item-phone"><td class="label">Contact Telephone:</td><td class="value">312-996-1868</td></tr><tr class="item-email"><td class="label">Email:</td><td class="value">agallo@uic.edu</td></tr><tr class="item-co-authors"><td class="label">Co-Authors:</td><td class="value">A.M. Gallo, E. Madeck, Women, Children and Family Health Science, University of Illinois at Chicago, Chicago, IL; D.B. Angst, Advocate Center for Pediatric Research, Advocate Health Care , Oak Brook, IL; K.A. Knafl, School of Nursing, University of North </td></tr><tr><td colspan="2" class="item-abstract">Federal agencies and national organizations continue to emphasize the importance of gathering data directly from adolescents and young adults, both to inform interventions and to guide public policy. Nonetheless, there remains little research that includes adolescents and young adults as informants and there are few guidelines for how best to recruit and retain them in research. The purpose of this qualitative study was to elicit input directly from adolescents and young adults on their views about participation in a future study on what they understand about the genetics and their perceptions of risk, illness and information management, and related decision making. Specific aims of this study were to assess the feasibility and appropriateness of the proposed interview guides and data collection methods. The sample included 20 teens and young adults who either had a genetic condition or were a sibling of someone who did. All subjects were recruited from families who gave prior consent to be contacted about future research. Subjects participated in a cognitive interview to assess their interpretation of the proposed interview guide. Based on cognitive theory, cognitive interviewing encompasses a family of techniques for eliciting data on how future respondents will interpret a questionnaire or interview question. Subjects also answered open-ended questions regarding their views about research participation, proposed data collection techniques, and the interview guide. Audio recorded interviews were transcribed verbatim, processed, and coded using thematic analysis. Participants represented a variety of genetic conditions and were between 14 to 22 years of age. Interview themes included: motivation to participate in research, perspectives on approaches and options to data collection, and clarity of interview guide questions. Results provide new information about how adolescents and young adults view research, and give direction for designing a study that will best examine their perspectives in the context of genetic conditions.</td></tr></table>en_GB
dc.date.available2011-10-26T20:58:28Z-
dc.date.issued2011-10-17en_GB
dc.date.accessioned2011-10-26T20:58:28Z-
dc.description.sponsorshipMidwest Nursing Research Societyen_GB
All Items in this repository are protected by copyright, with all rights reserved, unless otherwise indicated.