Ethics and Behavior 18 (2 & 3):161 – 181 (2008)
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)|
References found in this work BETA
No references found.
Citations of this work BETA
No citations found.
Similar books and articles
Adolescent Psychological Development, Parenting Styles, and Pediatric Decision Making.B. C. Partridge - 2010 - Journal of Medicine and Philosophy 35 (5):518-525.
Toward a Coherent Account of Pediatric Decision Making.A. S. Iltis - 2010 - Journal of Medicine and Philosophy 35 (5):526-552.
Adolescent and Parental Perceptions of Medical Decision-Making in Hong Kong.H. U. I. Edwin - 2011 - Bioethics 25 (9):516-526.
Parental Refusals of Medical Treatment: The Harm Principle as Threshold for State Intervention.Douglas Diekema - 2004 - Theoretical Medicine and Bioethics 25 (4):243-264.
Deep Brain Stimulation in Children: Parental Authority Versus Shared Decision-Making.Farah Focquaert - 2013 - Neuroethics 6 (3):447-455.
Protection of Children's Rights to Self-Determination in Research.Cheryl M. Sterling & Gary A. Walco - 2003 - Ethics and Behavior 13 (3):237 – 247.
A Goodness-of-Fit Approach to Informed Consent for Pediatric Intervention Research.Jessica Masty & Celia Fisher - 2008 - Ethics and Behavior 18 (2 & 3):139 – 160.
Parental Discretion and Children's Rights: Background and Implications for Medical Decision-Making.Ferdinand Schoeman - 1985 - Journal of Medicine and Philosophy 10 (1):45-62.
Added to index2009-01-28
Total downloads24 ( #212,979 of 2,177,973 )
Recent downloads (6 months)3 ( #112,892 of 2,177,973 )
How can I increase my downloads?