Ethics and Behavior 18 (2-3):161 – 181 (2008)

Abstract
Our objective is to understand how parents and children perceive their roles in decision making about research participation. Forty-five children (ages 4-15 years) with or without a chronic condition and 21 parents were the participants. A semistructured interview assessed perceptions of up to 4 hypothetical research scenarios with varying levels of risk, benefit, and complexity. Children were also administered the Peabody Picture Vocabulary Test, Third Edition, to assess verbal ability, as a proxy for the child's cognitive development. The audiotaped interviews were transcribed and analyzed for themes related to parent and child decision-making roles. Both parents and children varied in their perceptions of decision-making roles. Child perceptions of parental influence on decision making as knowledge-based increased with cognitive development, whereas perceptions of parental influence as power-based decreased. Both children and parents commented that they would collaborate with each other when making decisions. Collaborative decision making appeared to increase with cognitive development. These findings suggest that approaches to child assent and parent permission should consider the parent-child relationship and how children and families typically make decisions. Future research is necessary to explain variation in the process of research decision making across children and families, explore the role of collaboration on children's decision-making skills, and understand developmental trajectories and mechanisms related to research decision making.
Keywords No keywords specified (fix it)
Categories (categorize this paper)
ISBN(s)
DOI 10.1080/10508420802063947
Options
Edit this record
Mark as duplicate
Export citation
Find it on Scholar
Request removal from index
Revision history

Download options

PhilArchive copy


Upload a copy of this paper     Check publisher's policy     Papers currently archived: 53,634
External links

Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
Through your library

References found in this work BETA

Rethink "Affirmative Agreement," but Abandon "Assent".Steven Joffe - 2003 - American Journal of Bioethics 3 (4):9 – 11.

Add more references

Citations of this work BETA

Add more citations

Similar books and articles

Analytics

Added to PP index
2009-01-28

Total views
41 ( #235,875 of 2,348,958 )

Recent downloads (6 months)
1 ( #512,628 of 2,348,958 )

How can I increase my downloads?

Downloads

My notes