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• W2000767690 abstract "This journal, impressively enabled by its authors, reviewers, and publisher, exists to disseminate the highest quality research findings to clinicians and investigators who will critically consume and interpret the findings for their contributions to the oncology nursing knowledge base. From that knowledge base, research findings are translated into clinical practice and used to improve the cancer experience and care outcomes of patients and their families. This form of dissemination is an essential step in the process of applying research, as the critical eyes of others help to estimate its clinical validity and clinical use. Sharing findings via publications in journals is an expected behavior in the healthcare professions, whose publication practices are strictly enforced by federal, institutional, and journal-specific policies and guidelines. Publishing research findings is indeed a regulated and monitored professional behavior. In a startling contrast, we lack guidance on sharing research findings with study participants.1,2 Why do we not have policies, guidelines, or even traditions to guide us in providing our findings to the participating children, adolescents, parents, young adults, adults, and older adults, whose time, effort, opinions, blood, or other body samples contributed to a study's successful achievement of its aims? Why would we, as investigators, commit fully to following federal and discipline- and journal-specific requirements for disseminating research findings to other scientists and clinicians without establishing guidelines or traditions for sharing findings with actual participants? One recently identified majority response from investigators to a survey question about this very issue was that they had not thought of sharing the results with participants.3 This majority response and the responses to several other survey questions indicate support for the idea of sharing research findings with study participants, but this is a qualified support that reflects the investigators' uneasiness with the idea. The uneasiness is evidenced in important cautions posed by investigators, which include the worry that participants (at least some) will not understand or will be disinterested in the research findings or, worse, they will be upset by the findings-particularly findings from a negative study in which participants adhered to a treatment arm that was ultimately found to be of less benefit than another arm or actual harm to a participant resulted. Other cautions include costs of sharing results and uncertainties about what methods (ie, by letter, e-mail, personal sharing by the study team or a particular team member) of sharing the findings might be preferred by participants. In addition, uncertainty about determining the best timing for sharing has been raised as a concern, particularly when the study accrued participants over a number of years during which time the participant/family could have experienced difficulties that are unknown to the study team but which could be aggravated by the sharing of study findings. The logistic challenges associated with maintaining current contact information for each participant in anticipation of the time when results are confirmed and ready to be shared are an issue of practical concern.4,5 Additional questions about sharing research findings include the following: do we return findings to all patients/family members or only to those whose family member is surviving the disease? What kinds of resources are needed in the possible event that a study participant is harmed by the shared findings? If we share only aggregate results, will participants understand the difference between this and their individual contributions? An informative but limited number of studies have begun to pose these questions to groups of study participants. Parents of children being treated for cancer and adolescents receiving cancer treatment indicated in one survey and interview study6 and women treated for breast cancer indicated in a separate study their overwhelming preference to receive the research findings.5 More recently, panel members comprised of survivors of childhood cancer and parents of children who had received cancer treatment spoke against what they considered to be the paternalism of a research system that does not routinely share research findings with participants.7 These opinions are not representative of all cancer patients and their family members, but they direct us, as investigators, to seriously address the issues of sharing research findings with study participants. We are likely not ready for federal regulations in this area of inquiry or even strict institutional guidelines that do not allow for exceptions, but we are ready for more research on the topic. We welcome the submission of articles on this subject to our journal. My very best to you. Pamela S. Hinds PhD, RN, FAAN Editor in Chief, Cancer Nursing™" @default.
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• W2000767690 date "2008-05-01" @default.
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• W2000767690 title "Sharing Our Research Findings With Study Participants" @default.
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• W2000767690 doi "https://doi.org/10.1097/01.ncc.0000305717.52777.30" @default.
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