Understanding Ethical Issues of Research Participation From the Perspective of Participating Children and Adolescents

2.50
Hdl Handle:
http://hdl.handle.net/10755/616424
Title:
Understanding Ethical Issues of Research Participation From the Perspective of Participating Children and Adolescents
Author(s):
Crane, Stacey; Broome, Marion E.
Lead Author STTI Affiliation:
Alpha
Author Details:
Stacey Crane, RN, CPON, cranes@iupui.edu; Marion E. Broome, RN, FAAN
Abstract:
Session presented on Thursday, July 21, 2016 and Friday, July 22, 2016: Background: The past twenty years have seen distinct shifts in the way the participation of children and adolescents in research is viewed. This has been emphasized by the growing pediatric research enterprise. Additional information on children?s and adolescents? experiences during research participation is needed to better inform researchers on the ethical conduct of research with this vulnerable population. Aims: The objective of this analysis was to examine ethical issues in research with children and adolescents from their perspective as participants, including: assent, parental consent, risk perception, impact of research participation, and incentives. Methods: This systematic review was conducted per the Long et al. framework by means of an iterative searching process. Using the key words ?research ethics? and ?child or pediatric or adolescent?, PubMed, CINAHL, and EBSCOhost databases were searched to identify articles. Limitations placed on the original searches were: English language, year of publication between 2003?2014, humans, abstract available, and age birth?18 years. Findings: Twenty-three empiric studies were identified and formed the sample. Included studies represented a diverse range of areas of research, methods, settings, sample demographics, authors, and journals. Discussion: Even young children demonstrated the ability to understand essential elements of research, although there is variability in children?s level of understanding. Trust was a significant contributing factor to children?s and adolescents? participation in research, and also shaped their assessments of risk. Research participation was mainly beneficial for children and adolescents. Incentives were mainly viewed positively, although concerns of possible undue influence were expressed. Conclusions: This systematic review highlights the importance of including the perspectives of children and adolescents and provides researchers and nurse clinicians with best practices for involving children in research. ' Key conclusions included that: Assent processes and instruments need to be created with the assistance of child development specialists and piloted with children before being used. A priori consultation with representative adolescents and parents can provide guidance for developing consent and assent procedures within challenging contexts. All research with children and adolescents could benefit from inclusion of a short, formative, off-study interview or survey with participants to gauge their experience in the study. An important gap in the literature is consideration of whether children and adolescents, beyond simply understanding their research rights, are capable of applying this knowledge and of actually exerting their research rights.
Keywords:
Research Ethics; Children and Adolescents; Participant Perspective
Repository Posting Date:
13-Jul-2016
Date of Publication:
13-Jul-2016 ; 13-Jul-2016
Other Identifiers:
INRC16PST90
Conference Date:
2016
Conference Name:
27th International Nursing Research Congress
Conference Host:
Sigma Theta Tau International, the Honor Society of Nursing
Conference Location:
Cape Town, South Africa
Description:
Theme: Leading Global Research: Advancing Practice, Advocacy, and Policy

Full metadata record

DC FieldValue Language
dc.language.isoenen
dc.titleUnderstanding Ethical Issues of Research Participation From the Perspective of Participating Children and Adolescentsen
dc.contributor.authorCrane, Staceyen
dc.contributor.authorBroome, Marion E.en
dc.contributor.departmentAlphaen
dc.author.detailsStacey Crane, RN, CPON, cranes@iupui.edu; Marion E. Broome, RN, FAANen
dc.identifier.urihttp://hdl.handle.net/10755/616424-
dc.description.abstractSession presented on Thursday, July 21, 2016 and Friday, July 22, 2016: Background: The past twenty years have seen distinct shifts in the way the participation of children and adolescents in research is viewed. This has been emphasized by the growing pediatric research enterprise. Additional information on children?s and adolescents? experiences during research participation is needed to better inform researchers on the ethical conduct of research with this vulnerable population. Aims: The objective of this analysis was to examine ethical issues in research with children and adolescents from their perspective as participants, including: assent, parental consent, risk perception, impact of research participation, and incentives. Methods: This systematic review was conducted per the Long et al. framework by means of an iterative searching process. Using the key words ?research ethics? and ?child or pediatric or adolescent?, PubMed, CINAHL, and EBSCOhost databases were searched to identify articles. Limitations placed on the original searches were: English language, year of publication between 2003?2014, humans, abstract available, and age birth?18 years. Findings: Twenty-three empiric studies were identified and formed the sample. Included studies represented a diverse range of areas of research, methods, settings, sample demographics, authors, and journals. Discussion: Even young children demonstrated the ability to understand essential elements of research, although there is variability in children?s level of understanding. Trust was a significant contributing factor to children?s and adolescents? participation in research, and also shaped their assessments of risk. Research participation was mainly beneficial for children and adolescents. Incentives were mainly viewed positively, although concerns of possible undue influence were expressed. Conclusions: This systematic review highlights the importance of including the perspectives of children and adolescents and provides researchers and nurse clinicians with best practices for involving children in research. ' Key conclusions included that: Assent processes and instruments need to be created with the assistance of child development specialists and piloted with children before being used. A priori consultation with representative adolescents and parents can provide guidance for developing consent and assent procedures within challenging contexts. All research with children and adolescents could benefit from inclusion of a short, formative, off-study interview or survey with participants to gauge their experience in the study. An important gap in the literature is consideration of whether children and adolescents, beyond simply understanding their research rights, are capable of applying this knowledge and of actually exerting their research rights.en
dc.subjectResearch Ethicsen
dc.subjectChildren and Adolescentsen
dc.subjectParticipant Perspectiveen
dc.date.available2016-07-13T11:12:14Z-
dc.date.issued2016-07-13-
dc.date.issued2016-07-13en
dc.date.accessioned2016-07-13T11:12:14Z-
dc.conference.date2016en
dc.conference.name27th International Nursing Research Congressen
dc.conference.hostSigma Theta Tau International, the Honor Society of Nursingen
dc.conference.locationCape Town, South Africaen
dc.descriptionTheme: Leading Global Research: Advancing Practice, Advocacy, and Policyen
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