Decision-making by adolescents and parents of children with cancer regarding health research participation.

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 (Halifax, Vancouver, and Montreal) and 2 in the United States (Atlanta, GA, and Memphis, TN).

Providing research results to participants: attitudes and needs of adolescents and parents of children with cancer.

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.