Disclosure of research results to research participants: A pilot study of the needs and attitudes of adolescents and parents.

BACKGROUND

Researchers have a moral responsibility to offer to return research results to participants, but the needs and attitudes of parents and adolescents with cancer in paediatric oncology regarding the issue are relatively unknown.

OBJECTIVES

To explore the needs of potential research participants or their guardians with respect to the offer of a return of research results.

METHODS

A questionnaire was used in a focus group and in telephone interviews with eight adolescents and 12 parents of children with cancer. The participants were asked to respond to the questions and to comment on the inclusiveness of the questionnaire.

RESULTS

The majority of participants (18 of 20) wished to receive research results. Two somewhat unexpected findings are described. First, all participants in the present study felt that it was the primary responsibility of the participant to retain contact with the researchers for the purpose of obtaining research results. Second, few participants (n=2) indicated that the Internet would be a satisfactory way of transmitting these results. One-half of the participants wished to have face-to-face communication of results.

CONCLUSIONS

These results provide preliminary guidance for the return of research results to participants and validate the use of the questionnaire in a larger study of this issue.