Understanding ethical issues of research participation from the perspective of participating children and adolescents
View File(s)
- Author(s)
- Details
-
Stacey Crane, RN, CPON and Marion E. Broome, RN, FAAN
- Sigma Affiliation
- Alpha
- Contributor Affiliation(s)
- Indiana University, Indianapolis, Indiana, USA
- Duke University, Durham, North Carolina, USA
Visitor Statistics
Visits vs Downloads
Visitors - World Map
Top Visiting Countries
Country | Visits |
---|
Top Visiting Cities
City | Visits |
---|
Visits (last 6 months)
Downloads (last 6 months)
Popular Works for Crane, Stacey by View
Title | Page Views |
---|
Popular Works for Crane, Stacey by Download
Title | Downloads |
---|
View Citations
Citations
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.
Theme: Leading Global Research: Advancing Practice, Advocacy, and Policy
Items submitted to a conference/event were evaluated/peer-reviewed at the time of abstract submission to the event. No other peer-review was provided prior to submission to the Henderson Repository.
Type | Poster |
Acquisition | Proxy-submission |
Review Type | None: Event Material, Invited Presentation |
Format | Text-based Document |
Evidence Level | N/A |
Research Approach | N/A |
Keywords | Research Ethics; Children and Adolescents; Participant Perspective |
Name | 27th international Nursing Research Congress |
Host | Sigma Theta Tau International |
Location | Cape Town, South Africa |
Date | 2016 |
All rights reserved by the author(s) and/or publisher(s) listed in this item record unless relinquished in whole or part by a rights notation or a Creative Commons License present in this item record.
All permission requests should be directed accordingly and not to the Sigma Repository.
All submitting authors or publishers have affirmed that when using material in their work where they do not own copyright, they have obtained permission of the copyright holder prior to submission and the rights holder has been acknowledged as necessary.
Related items
Showing items related by title, author, creator and subjects.
-
Participant experiences in phase I pediatric oncology clinical trials
Crane, Stacey M.Phase I clinical trials (P1Ts) are the first step in testing new medical therapies in humans, and are essential for developing new and innovative therapies for children with cancer. P1Ts are ethically controversial as they ... -
Everyday ethics in the 21st century: Creating and sustaining a culture of ethical practice
Rushton, Cynda Hylton; Broome, Marion E. (2016-03-21)Session presented on Monday, November 9, 2015: Ethical issues in nursing are not new; ask any practicing nurse what keeps them up at night. Nurses in all roles and specialties confront myriad ethical issues in their ... -
Everyday ethics in the 21st century: Creating and sustaining a culture of ethical practice
Rushton, Cynda Hylton; Broome, Marion E. (2016-03-17)Session presented on Saturday, July 25, 2015: Ethical issues in nursing are not new; ask any practicing nurse what keeps them up at night. Nurses in all roles and specialties confront myriad ethical issues in their everyday ... -
Inclusive leadership to guide nursing’s response to improving health equity
Nikpour, Jacqueline; Hickman, Ronald L.; Clayton-Jones, Dora; Gonzalez-Guarda, Rosa M.; Broome, Marion E. (Elsevier, 2022-11)The vision laid out in the Future of Nursing 2020-2030: Charting a Path to Achieve Health Equity (National Academy of Medicine [NAM], 2021) report made it clear that nurses must be at the forefront of changes designed to ... -
Changes in nursing and women's leadership across six countries
Im, Eun-Ok; Sakashita, Reiko; Oh, Eui Geum; Lin, Chia-Chin; Tsai, Hsiu-Min; Wang, Hsiu-Hung; Huang, Lian-Hua; Inouye, Jillian; Kunaviktikul, Wipada; Broome, Marion E.The Asian and Asian American Study Group for Nursing Leadership (AAANL) has made collaborative efforts to promote nursing leadership in Asian culture. The purpose of this presentation is to showcase one of the group's ...