Parents’ Perspectives on Decisions to Participate in Pediatric Clinical Research: Results From a Focus Group Study With Laypeople

Tromp, Krista; Vathorst, Suzanne van de

doi:10.1177/1556264619845599

Cited by 11 publications

(13 citation statements)

References 28 publications

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“…This may be related to the total number of individuals from a family that need to be engaged, a parental drive to be protective, or a fear of their own child being a -guinea pig‖ for clinical testing. 14 GMFCS level did have a significant impact on the willingness to participate in an NDB study, where Level IV or Level V groups who are more likely to have severe comorbidities 15,16 were the most conservative in their approach. In contrast, GMFCS level did not have an impact on TRP-DB, and the type of CP diagnosis did not impact TRP in either type of study.…”

Section: Discussionmentioning

confidence: 99%

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Stakeholder Perspectives on Engaging With Cerebral Palsy Research Studies After Onset of COVID-19 in the United States

Joshi

Hill

Hruby

et al. 2021

Archives of Physical Medicine and Rehabilitation

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This is a PDF file of an article that has undergone enhancements after acceptance, such as the addition of a cover page and metadata, and formatting for readability, but it is not yet the definitive version of record. This version will undergo additional copyediting, typesetting and review before it is published in its final form, but we are providing this version to give early visibility of the article. Please note that, during the production process, errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.

show abstract

Section: Discussionmentioning

confidence: 99%

“…This may be related to the total number of individuals from a family that need to be engaged, a parental drive to be protective, or a fear of their own child being a “guinea pig” for clinical testing. 17 …”

Section: Discussionmentioning

confidence: 99%

Stakeholder Perspectives on Engaging With Cerebral Palsy Research Studies After Onset of COVID-19 in the United States

Joshi

Hill

Hruby

et al. 2021

Archives of Physical Medicine and Rehabilitation

View full text Add to dashboard Cite

show abstract

“…Respondents were asked to respond to attitudinal items for hypothetical scenarios rather than make actual decisions regarding their own lives. It is possible that as research participants experience life situations or changes in health, their attitudes concerning research will change over time (Tromp & van de Vathorst, 2019; Tsevat et al, 2018; Ward, 2010). Finally, we did not include questions regarding prior exposure to or engagement in research, prior exposure to the various procedures queried, socioeconomic status, the physical health condition of mothers, or questions regarding children’s health other than chronic medical conditions.…”

Section: Discussionmentioning

confidence: 99%

Attitudes of Mothers Regarding Willingness to Enroll Their Children in Research

Kim

Rostami

2020

Journal of Empirical Research on Human Research Ethics

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This study assessed mothers’ perspectives regarding research involvement by their children, factors that might affect perceptions of research risks, and attitudes regarding willingness to enroll children in research. Participants completed a survey on Amazon Mechanical Turk. Mothers were less inclined to enroll children in research involving procedures posing higher risk (regression coefficient = −0.51). Mothers without mental health issues with children without health issues were more sensitive to risk than mothers without mental health issues with children with health issues (estimated difference = 0.49). Mothers with mental health issues were more willing than mothers without mental health issues to enroll children in research (regression coefficient = −0.90). Among mothers with mental health issues, having a child with a health issue was associated with increased willingness to enroll in research, compared with having children without health issues (estimated difference = 0.65).

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“…to engage their child in clinical research is because it is beneficial for the child (52). However, therapeutic misconception also occurs in researchers and in regulatory bodies.…”

Section: Vulnerability In Childrenmentioning

confidence: 99%

Paediatric biobanking for health: The ethical, legal, and societal landscape

Casati

Ellul²,

Mayrhofer³

et al. 2022

Front. Public Health

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Biobanks play a central role in pediatric translational research, which deals primarily with genetic data from sample-based research. However, participation of children in biobanking has received only limited attention in the literature, even though research in general and in clinical trials in particular have a long history in involving minors. So, we resolved to explore specific challenging ethical, legal, and societal issues (ELSI) in the current pediatric biobanking landscape to propose a way forward for biobanking with children as partners in research. Methodologically, we first established the accessibility and utilization of pediatric biobanks, mainly in Europe. This was supported by a literature review related to children's participation, taking into account not only academic papers but also relevant guidelines and best-practices. Our findings are discussed under five themes: general vulnerability; ethical issues—balancing risks and benefits, right to an open future, return of results including secondary findings; legal issues—capacity and legal majority; societal issues—public awareness and empowerment; and responsible research with children. Ultimately, we observed an on-going shift from the parents'/guardians' consent being a sine-qua-non condition to the positive minor's agreement: confirming that the minor is the participant, not the parent(s)/guardian(s). This ethical rethinking is paving the way toward age-appropriate, dynamic and participatory models of involving minors in decision-making. However, we identified a requirement for dynamic tools to assess maturity, a lack of co-produced engagement tools and paucity of shared best practices. We highlight the need to provide empowerment and capability settings to support researchers and biobankers, and back this with practical examples. In conclusion, equipping children and adults with appropriate tools, and ensuring children's participation is at the forefront of responsible pediatric biobanking, is an ethical obligation, and a cornerstone for research integrity.

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Parents’ Perspectives on Decisions to Participate in Pediatric Clinical Research: Results From a Focus Group Study With Laypeople

Cited by 11 publications

References 28 publications

Stakeholder Perspectives on Engaging With Cerebral Palsy Research Studies After Onset of COVID-19 in the United States

Stakeholder Perspectives on Engaging With Cerebral Palsy Research Studies After Onset of COVID-19 in the United States

Attitudes of Mothers Regarding Willingness to Enroll Their Children in Research

Paediatric biobanking for health: The ethical, legal, and societal landscape

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