Fernandez Conrad Vincent, Taweel Shaureen, Kodish Eric D, Weijer Charles
Department of Pediatrics, IWK Health Centre and Dalhousie University.
Paediatr Child Health. 2005 Jul;10(6):332-4.
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.
To explore the needs of potential research participants or their guardians with respect to the offer of a return of research results.
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.
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.
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.
研究人员有道德责任向参与者提供研究结果，但儿科肿瘤学中患癌儿童的父母和青少年对于这一问题的需求和态度相对未知。
探讨潜在研究参与者或其监护人对于提供研究结果反馈的需求。
在焦点小组以及对8名青少年和12名患癌儿童的父母进行电话访谈时使用了一份问卷。参与者被要求回答问题并对问卷的包容性发表意见。
大多数参与者（20人中的18人）希望收到研究结果。描述了两个有点意外的发现。第一，本研究中的所有参与者都认为，为了获取研究结果，与研究人员保持联系是参与者的主要责任。第二，很少有参与者（n = 2）表示互联网是传递这些结果的令人满意的方式。一半的参与者希望进行结果的面对面交流。
这些结果为向参与者反馈研究结果提供了初步指导，并验证了该问卷在关于此问题的更大规模研究中的应用。
