Children in health research: a matter of trust

Woodgate, Roberta L.; Edwards, Marie

doi:10.1136/jme.2009.031609

Cited by 22 publications

(19 citation statements)

References 34 publications

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“…The presence or absence of trust was perceived by children as a contributing factor to being involved in research, and also shaped their assessments of risk (Brawner et al, 2013; Traube et al, 2013; Woodgate & Edwards, 2010). Findings in the sample of articles suggested that children and adolescents are most willing to participate in research when they feel safe (Brawner et al, 2013; O’Reilly, Karim, Taylor, & Dogra, 2012; Swartling et al, 2011; Traube et al, 2013).…”

Section: Resultsmentioning

confidence: 99%

“…Findings in the sample of articles suggested that children and adolescents are most willing to participate in research when they feel safe (Brawner et al, 2013; O’Reilly, Karim, Taylor, & Dogra, 2012; Swartling et al, 2011; Traube et al, 2013). Most children and adolescents expected that researchers and their parents would protect them during their research participation (Brawner et al, 2013; Woodgate & Edwards, 2010). Children tended to believe that if a researcher behaved unethically or caused harm, the researcher would suffer consequences professionally and personally (Traube et al, 2013).…”

Section: Resultsmentioning

confidence: 99%

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Understanding Ethical Issues of Research Participation From the Perspective of Participating Children and Adolescents: A Systematic Review

Crane

Broome

2017

Worldviews Ev Based Nurs

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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. Linking Evidence to Action 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.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Understanding Ethical Issues of Research Participation From the Perspective of Participating Children and Adolescents: A Systematic Review

Crane

Broome

2017

Worldviews Ev Based Nurs

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“…Also, since parental consent is usually required by law for survey researchers operating outside schools, health care delivery organizations may be in a better position to obtain this consent. Parents are more likely to consent to their child to participating in a survey conducted by an organization they trust than by an entity unknown to them (12). …”

Section: Introductionmentioning

confidence: 99%

Surveying Adolescents Enrolled in a Regional Health Care Delivery Organization: Mail and Phone Follow-up--What Works at What Cost?

Richards

Wiese

Katon

et al. 2010

The Journal of the American Board of Family Medicine

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PURPOSE To describe the differential completion rates and cost of sequential methods for a survey of adolescent regional healthcare delivery organization enrollees. METHODS 4000 randomly selected enrollees were invited to complete a mailed health survey. Techniques used to boost response included: 1) a follow-up mailing 2) varying the appearance of the survey 3) reminder calls 4) phone calls to obtain parent and child consent and administer the survey. We evaluated the outcome and costs of these methods. RESULTS 783 (20%) enrollees completed the 1st mailed survey, and 521 completed the 2nd, increasing the overall response rate to 33%. Completion was significantly higher for respondents who received only the plain survey than those receiving only the color (p<.001). Reminder calls boosted response by 8%. Switching to phone survey administration boosted response by 20% to 61%. The cost per completed survey was $29 for the first mailing, $26 after both mailings, $42 for mailings and reminder calls, and $48 for adding phone surveys. CONCLUSIONS The response to mailings and reminder calls was low and the cost high, with decreasing yield at each step, though some low cost techniques helpful. Results suggest phone surveys may be most effective among similar samples of adolescents.

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“…The presence or absence of trust in the research enterprise, in fact, may be a contributing factor to parents' willingness to allow children to participate in research, particularly as it relates to their perception and assessment of a risk-benefit ratio. 17 When the validity of data is questionable or flawed, the integrity of science is compromised and the principles that are essential to practicing ethical science are violated or tainted. In addition, it becomes a time-consuming and resource-intensive endeavor for members of the scientific community to attempt to replicate the findings and thus, ultimately, to advance knowledge within a discipline.…”

Section: When Integrity Of Science Is Compromisedmentioning

confidence: 99%

“…Including children in research can be a challenging endeavor, yet is essential to advancing knowledge, improving the communicative health of children, and identifying effective interventions and best practices. 17 Investigators who include children as research participants have an obligation to ensure that children receive appropriate protection and that the research is conducted within an ethical framework. An assessment should be made of the scientific rationale for the inclusion of children vis-à-vis the focus of the study.…”

Section: Promoting An Ethical Research Environment: Opportunities Andmentioning

confidence: 99%

Promoting Ethical Research Practices: Perspectives from Pediatric Populations

Moss

2011

Semin Speech Lang

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Engaging in research activities can be an enriching aspect of one's professional career. Research serves to advance the knowledge base from which clinical decisions are founded and is the responsibility of all who provide clinical services. That is, developing and advancing this knowledge base is everyone's responsibility, whether as consumers of research or as direct contributors of research. Understanding the ethical issues that embrace the research enterprise is a complementary responsibility of professionals. Conducting research within an ethical framework is essential to maintaining integrity and credibility in science. Opportunities to promote scientific integrity are particularly relevant when conducting or examining research involving children. Therefore, the purpose of this article is to provide an overview of the role of research in clinical practice, particularly in an environment with pediatric populations. The article will unfold with three major themes: (1) understanding the value of research in the clinical environment, (2) describing factors that contribute to sound ethical practices, and (3) promoting integrity in research conducted with pediatric populations.

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Children in health research: a matter of trust

Cited by 22 publications

References 34 publications

Understanding Ethical Issues of Research Participation From the Perspective of Participating Children and Adolescents: A Systematic Review

Understanding Ethical Issues of Research Participation From the Perspective of Participating Children and Adolescents: A Systematic Review

Surveying Adolescents Enrolled in a Regional Health Care Delivery Organization: Mail and Phone Follow-up--What Works at What Cost?

Promoting Ethical Research Practices: Perspectives from Pediatric Populations

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