Qualitative study of participants' perceptions and preferences regarding research dissemination

AJOB Empirical Bioethics

Volumn 8, Issue 2, 2017, Pages 69-74

  Purvis, Rachel S ^a   Abraham, Traci H ^b   Long, Christopher R ^c   Stewart, M Kathryn ^a   Warmack, T Scott ^a   McElfish, Pearl Anna ^c  

^a UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES   (United States)

^b CENTRAL ARKANSAS VETERANS HEALTHCARE SYSTEM   (United States)

^c University of Arkansas for Medical Sciences ^*  (United States)

Author keywords

biomedical research; human subjects research; professional ethics; public health; research ethics

Indexed keywords

ADOLESCENT; ADULT; ADVISORY COMMITTEE; AGED; ARKANSAS; ATTITUDE; COMMUNITY PARTICIPATION; ETHICS; FEMALE; HUMAN; INFORMATION DISSEMINATION; INFORMATION PROCESSING; MALE; MEDICAL RESEARCH; MIDDLE AGED; PERSONNEL; QUALITATIVE RESEARCH; RESEARCH ETHICS; RESEARCH SUBJECT; TRUST; YOUNG ADULT;

ADOLESCENT; ADULT; ADVISORY COMMITTEES; AGED; ARKANSAS; ATTITUDE; BIOMEDICAL RESEARCH; COMMUNITY PARTICIPATION; ETHICS, RESEARCH; FEMALE; FOCUS GROUPS; HUMANS; INFORMATION DISSEMINATION; MALE; MIDDLE AGED; QUALITATIVE RESEARCH; RESEARCH PERSONNEL; RESEARCH SUBJECTS; TRUST; YOUNG ADULT;

EID: 85017599756     PISSN: 23294515     EISSN: 23294523     Source Type: Journal    
DOI: 10.1080/23294515.2017.1310146     Document Type: Article

References (27)

1. Baylor, A., C., Muzoora, M., Bwana, et al. 2013. Dissemination of research findings to research participants living with HIV in rural Uganda:Challenges and rewards. PLoS Medicine 10(3):4. doi:10.1371/journal.pmed.1001397
2. Brownson, R., J., Jacobs, R., Tabak, C., Hoehner, and K., Stamatakis. 2013. Designing for dissemination among public health researchers:Findings from a national survey in the United States. American Journal of Public Health 103(9):1693–99.
3. Chen, P. G., N., Diaz, G., Lucas, and M. S., Rosenthal. 2010. Dissemination of results in community-based participatory research. American Journal of Preventative Medicine 39(4):372–78. doi:10.1016/j.amepre.2010.05.021
4. Cox, K., N., Moghaddam, L., Bird, and R., Elkan. 2011. Feedback of trial results to participants:A survey of clinicians' and patients' attitudes and experiences. European Journal of Oncology Nursing 15(2):124–29. doi:10.1016/j.ejon.2010.06.009
5. Dixon-Woods, M., C., Jackson, K. C., Windridge, and S., Kenyon. 2006. Receiving a summary of the results of a trial:Qualitative study of participants' views. British Medical Journal 332(7535):206–10. doi:10.1136/bmj.38675.677963.3A
6. Fernandez, C. V., J., Gao, C., Strahlendorf, et al. 2009. Providing research results to participants:Attitudes and needs of adolescents and parents of children with cancer. Journal of Clinical Oncology 27(6):878–83. doi:10.1200/jco.2008.18.5223
7. Fernandez, C. V., E., Kodish, S., Shurin, and C., Weijer. 2003. Offering to return results to research participants:Attitudes and needs of principal investigators in the Children's Oncology Group. Journal of Pediatric Hematology/Oncology 25(9):704–8.
8. Fernandez, C. V., D., Santor, C., Weijer, et al. 2007. The return of research results to participants:Pilot questionnaire of adolescents and parents of children with cancer. Pediatric Blood & Cancer 48(4):441–46. doi:10.1002/pbc.20766
9. Fernandez, C. V., C., Skedgel, and C., Weijer. 2004. Considerations and costs of disclosing study findings to research participants. Canadian Medical Association Journal 170(9):1417–19.
10. Glasgow, R., C., Vinson, D., Chambers, M., Khoury, R., Kaplan, and C., Hunter. 2012. National Institutes of Health approaches to dissemination and implementation science:Current and future directions. American Journal of Public Health 102(7):1274–81.
11. King, N., C., Cassell, and G., Symon. 2004. Using templates in the thematic analysis of text. In Essential guide to qualitative methods in organizational research, ed. C., Cassell and G., Symon, 113–34. Thousand Oaks, CA:Sage.
12. Long, C., M., Stewart, T., Cunningham, T., Warmack, and P., McElfish. 2016. Health research participants' preferences for receiving research results. Clinical Trials 12(6):582–91. doi:10.1177/1740774516665598.
13. Lorimer, K., C. M., Gray, K., Hunt, S., Wyke, A., Anderson, and M., Benzeval. 2011. Response to written feedback of clinical data within a longitudinal study:A qualitative study exploring the ethical implications. BMC Medical Research Methodology 11:10. doi:10.1186/1471-2288-11-10
14. Markman, M., 2006. Providing research participants with findings from completed cancer‐related clinical trials. Cancer 106(7):1421–24.
15. Miller, F. A., R., Christensen, M., Giacomini, and J. S., Robert. 2008. Duty to disclose what? Querying the putative obligation to return research results to participants. Journal of Medical Ethics 34(3):210–13. doi:10.1136/jme.2006.020289
16. Minkler, M., and A., Salvatore. 2012. Participatory approaches for study design and analysis in dissemination and implementation research. In Dissemination and implementation research in health:Translating science to practice, ed. R., Brownson, G., Colditz, and E., Proctor, 192–212. New York, NY:Oxford University Press.
17. Murphy, J., J., Scott, D., Kaufman, G., Geller, L., LeRoy, and K., Hudson. 2008. Public expectations for return of results from large-cohort genetic research. American Journal of Bioethics 8(11):36–43. doi:10.1080/15265160802513093
18. Nadin, S., and C., Cassell. 2004. Using data matrices. In Essential guide to qualitative methods in organizational research, ed. C., Cassell and G., Symon, 271–87. Thousand Oaks, CA:Sage.
19. Partridge, A. H., H. J., Burstein, R. S., Gelman, P. K., Marcom, and E. P., Winer. 2003. Do patients participating in clinical trials want to know study results? Journal of the National Cancer Institute 95(6):491–92.
20. Partridge, A. H., N., Hackett, E., Blood, E., et al. 2004. Oncology physician and nurse practices and attitudes regarding offering clinical trial results to study participants. Journal of the National Cancer Institute 96(8):629–32.
21. Partridge, A. H., J. S., Wong, K., Knudsen, et al. 2005. Offering participants results of a clinical trial:Sharing results of a negative study. Lancet 365(9463):963–64. doi:10.1016/s0140-6736(05)71085-0
22. Rigby, H., and C. V., Fernandez. 2005. Providing research results to study participants:Support versus practice of researchers presenting at the American Society of Hematology annual meeting. Blood 106(4):1199–202. doi:10.1182/blood-2005-02-0556
23. Shalowitz, D. I., and F. G., Miller. 2008. Communicating the results of clinical research to participants:Attitudes, practices, and future directions. PLoS Medicine 5(5):e91. doi:10.1371/journal.pmed.0050091
24. Shalowitz, D. I., and F. G., Miller. 2008. The search for clarity in communicating research results to study participants. Journal of Medical Ethics 34(9):2. doi:10.1136/jme.2008.025122
25. Sinha, M., 2011. Rousseau at the roundtable—The social contract and the physician's responsibility to society. Virtual Mentor. AMA Journal of Ethics 13(10):703–6.
26. Snowdon, C., J., Garcia, and D., Elbourne. 1998. Reactions of participants to the results of a randomised controlled trial:Exploratory study. British Medical Journal 317(7150):21–26.
27. Trinidad, S. B., E. J., Ludman, S., Hopkins, et al. 2015. Community dissemination and genetic research:Moving beyond results reporting. American Journal of Medical Genetics Part A 167(7):1542–50. doi:10.1002/ajmg.a.37028