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  1.  17
    Providing Research Results to Participants: Attitudes and Needs of Adolescents and Parents of Children with Cancer.Conrad Vincent Fernandez, Jun Gao, Caron Strahlendorf, Albert Moghrabi, Rebecca Davis Pentz, Raymond Carlton Barfield, Justin Nathaniel Baker, Darcy Santor, Charles Weijer & Eric Kodish - unknown
    PURPOSE: There is an increasing demand for researchers to provide research results to participants. Our aim was to define an appropriate process for this, based on needs and attitudes of participants. METHODS: A multicenter survey in five sites in the United States and Canada was offered to parents of children with cancer and adolescents with cancer. Respondents indicated their preferred mode of communication of research results with respect to implications; timing, provider, and content of the results; reasons for and against (...)
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  2.  29
    The Return of Research Results to Participants: Pilot Questionnaire of Adolescents and Parents of Children with Cancer.Conrad V. Fernandez, Darcy Santor, Charles Weijer, Caron Strahlendorf, Albert Moghrabi, Rebecca Pentz, Jun Gao & Eric Kodish - unknown
    PURPOSE: The offer to return research results to participants is increasingly recognized as an ethical obligation, although few researchers routinely return results. We examined the needs and attitudes of parents of children with cancer and of adolescents with cancer to the return of research results. METHODS: Seven experts in research ethics scored content validity on parent and adolescent questionnaires previously developed through focus group and phone interviews. The questionnaires were revised and provided to 30 parents and 10 adolescents in a (...)
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  3.  14
    Decision-Making by Adolescents and Parents of Children with Cancer Regarding Health Research Participation.Kate Read, Conrad Vincent Fernandez, Jun Gao, Caron Strahlendorf, Albert Moghrabi, Rebecca Davis Pentz, Raymond Carlton Barfield, Justin Nathaniel Baker, Darcy Santor, Charles Weijer & Eric Kodish - unknown
    Background: Low rates of participation of adolescents and young adults (AYAs) in clinical oncology trials may contribute to poorer outcomes. Factors that influence the decision of AYAs to participate in health research and whether these factors are different from those that affect the participation of parents of children with cancer. Methods: This is a secondary analysis of data from validated questionnaires provided to adolescents (>12 years old) diagnosed with cancer and parents of children with cancer at 3 sites in Canada (...)
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