The Importance of Engaging Children in Research Decision-Making: A Preliminary Mixed-Methods Study.
Ethics Hum Res
; 42(3): 12-20, 2020 05.
Article
em En
| MEDLINE
| ID: mdl-32421946
ABSTRACT
Studies demonstrate deficiencies in parents' and children's comprehension of research and lack of child engagement in research decision-making. We conducted a cross-sectional and interview-based study of 31 parent-child dyads to describe decision-making preferences, experiences, and comprehension of parents and children participating in research. Parents and children reported that parents played a greater role in decisions about research participation than either parents or children preferred. The likelihood of child participation was associated with the extent of input the parent permitted the child to have in the decision-making process, the child's comprehension, whether the study team asked the child about participation, whether the child read study-related materials, the parent's marital status, and the child's race. Children had lower comprehension than adults. Comprehension was related to age, education, verbal intelligence, and reading of study-related information. Parent understanding was associated with prospect for benefit and illness severity. Child participation may be improved by increasing parent-child communication, emphasizing important relational roles between parent and child, respecting the developing autonomy of the child, increasing engagement with the study team, providing appropriate reading materials, and assessing comprehension.
Palavras-chave
Texto completo:
1
Base de dados:
MEDLINE
Assunto principal:
Relações Pais-Filho
/
Comunicação
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Compreensão
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Consentimento Informado por Menores
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Tomada de Decisão Compartilhada
Limite:
Child
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Female
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Humans
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Male
Idioma:
En
Ano de publicação:
2020
Tipo de documento:
Article