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Full-Text Articles in Medicine and Health Sciences
Providing Research Results To Participants: Attitudes And Needs Of Adolescents And Parents Of Children With Cancer, Conrad Fernandez, Jun Gao, Caron Strahlendorf, Albert Moghrabi, Rebecca Pentz, Raymond Barfield, Justin Baker, Darcy Santor, Charles Weijer, Eric Kodish
Providing Research Results To Participants: Attitudes And Needs Of Adolescents And Parents Of Children With Cancer, Conrad Fernandez, Jun Gao, Caron Strahlendorf, Albert Moghrabi, Rebecca Pentz, Raymond Barfield, Justin Baker, Darcy Santor, Charles Weijer, Eric Kodish
Charles Weijer
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 providing results; and barriers to providing results.
RESULTS: Four hundred nine parents (including 19 of deceased children) and 86 …