Document Type

Article

Publication Date

2016

DOI

10.1016/j.pedn.2016.06.006

Publication Title

Journal of Pediatric Nursing- Nursing Care of Children & Families

Volume

31

Issue

6

Pages

E353-E365

Abstract

Purpose- The purpose of this study was to describe the informed consent and assent experience for oncology research from the perspective of the participants: adolescents, their parents, and their physician providers.

Design & Methods- This descriptive mixed-methods study included the pilot use of the Quality of Informed Consent Questionnaire (QuIC) with an adolescent population and semi-structured interviews with adolescents, their parents, and their physician providers within 48-72 hours of the informed consent and assent discussion for a pediatric oncology clinical trial and again 6-9 weeks later. Results: Adolescents and their parents scored considerably lower on part A of the QuIC than part B indicating a lower level of objective understanding of key elements of informed consent and assent. Qualitative interviews highlight participants' self-reported poor memory or recollection of key details of the informed consent and assent discussion paralleling the QuIC findings for objective understanding.

Conclusion- Findings from this pilot descriptive study suggest that adolescents and their parents feel more informed than they actually are. This dichotomy of experience seems to have been mitigated by a strong sense of trust in and connection with their physician provider.

Practice Implications- Further exploration of adolescent and parent viewpoints regarding what they value as important in the content of the informed consent and assent and how that content is delivered is warranted. Additionally, understanding the origin of participants' misunderstanding of the key elements of consent and assent may illuminate areas for future intervention-based research focused on improving the overall quality of informed consent and assent discussions.

Comments

NOTE: This is the author's pre-print version of a work that was published in Journal of Pediatric Nursing- Nursing Care of Children & Families. The final version was published as:

Poston, R. D. (2016). Assent Described: Exploring Perspectives From the Inside. Journal of Pediatric Nursing-Nursing Care of Children & Families, 31(6), E353-E365. doi:10.1016/j.pedn.2016.06.006

Available at: http://dx.doi.org/10.1016/j.pedn.2016.06.006


Original Publication Citation

Poston, R. D. (2016). Assent described: Exploring perspectives from the inside. Journal of Pediatric Nursing-Nursing Care of Children & Families, 31(6), E353-E365. doi:10.1016/j.pedn.2016.06.006

Download

Share

COinS