Obtaining meaningful informed consent: preliminary results of a study to develop visual informed consent forms with children

References

• Ahsan, Monira. 2009. “The Potential and Challenges of Rights-Based Research with Children and Young People: Experiences from Bangladesh.” Children's Geographies 7 (4): 391–403. doi:10.1080/14733280903234451.
   Web of Science ®Google Scholar
• Alderson, Priscilla. 2007. “Competent Children? Minors’ Consent to Health Care Treatment and Research.” Social Science & Medicine 65 (11): 2272–2283. doi:10.1016/j.socscimed.2007.08.005.
   PubMed Web of Science ®Google Scholar
• Allen, Quaylan. 2012. “Photographs and Stories: Ethics, Benefits and Dilemmas of Using Participant Photography with Black Middle-Class Male Youth.” Qualitative Research 12 (4): 443–458. doi:10.1177/1468794111433088.
   Web of Science ®Google Scholar
• Bhansali, S., N. Shafiq, S. Malhotra, P. Pandhi, Inderjeet Singh, S. P. Venkateshan, S. Siddhu, Y. P. Sharma, and K. K. Talwar. 2009. “Evaluation of the Ability of Clinical Research Participants to Comprehend Informed Consent Form.” Contemporary Clinical Trials 30 (5): 427–430. doi:10.1016/j.cct.2009.03.005.
   PubMed Web of Science ®Google Scholar
• Bull, Susan, Bobbie Farsides, and Fasil Tekola Ayele. 2012. “Tailoring Information Provision and Consent Processes to Research Contexts: The Value of Rapid Assessments.” Journal of Empirical Research on Human Research Ethics: An International Journal 7 (1): 37–52. doi:10.1525/jer.2012.7.1.37.
   PubMed Web of Science ®Google Scholar
• Burgess, Michael M. 2007. “Proposing Modesty for Informed Consent.” Social Science & Medicine 65 (11): 2284–2295. doi:10.1016/j.socscimed.2007.08.006.
   PubMed Web of Science ®Google Scholar
• Chambers, R. 1994. “The Origins and Practice of Participatory Rural Appraisal.” World Development 22 (7): 953–969. doi:10.1016/0305-750X(94)90141-4.
   Web of Science ®Google Scholar
• Clark-Ibáñez, Marisol. 2004. “Framing the Social World with Photo-Elicitation Interviews.” American Behavioral Scientist 47 (12): 1507–1527. doi:10.1177/0002764204266236.
   Web of Science ®Google Scholar
• Clough, Bonnie A., Megan M. Campbell, Turana A. Aliyeva, Niño Jose Mateo, Mostafa Zarean, and Analise O'Donovan. 2013. “Protocols for Protection of Human Participants.” Journal of Empirical Research on Human Research Ethics: An International Journal 8 (3): 2–11. doi:10.1525/jer.2013.8.3.2.
   PubMed Web of Science ®Google Scholar
• Cohn, Elizabeth, and Elaine Larson. 2007. “Improving Participant Comprehension in the Informed Consent Process.” Journal of Nursing Scholarship 39 (3): 273–280. doi:10.1111/j.1547-5069.2007.00180.x.
   PubMed Web of Science ®Google Scholar
• Dixon-Woods, Mary, Richard E. Ashcroft, Clare J. Jackson, Martin D. Tobin, Joelle Kivits, Paul R. Burton, and Nilesh J. Samani. 2007. “Beyond ‘Misunderstanding’: Written Information and Decisions about Taking Part in a Genetic Epidemiology Study.” Social Science & Medicine 65 (11): 2212–2222. doi:10.1016/j.socscimed.2007.08.010.
   PubMed Web of Science ®Google Scholar
• Eisner, Elliot. 2008. “Art and Knowledge.” In Handbook of the Arts in Qualitative Research: Perspectives, Methodologies, Examples, and Issues, edited by Gary J. Knowles and Ardra L. Cole, 3–12. Thousand Oaks, CA: Sage.
   Google Scholar
• Ewald, Wendy. 1985. Portraits and Dreams: Photographs and Stories by Children of the Appalachians. London: Writers and Readers.
   Google Scholar
• Fisher, Celia B. 2003. “A Goodness-of-Fit Ethic for Child Assent to Nonbeneficial Research.” The American Journal of Bioethics 3 (4): 27–28. doi:10.1162/152651603322614490.
   PubMed Web of Science ®Google Scholar
• Flory, J., and E. Emanuel. 2004. “Interventions to Improve Research Participants’ Understanding in Informed Consent for Research: A Systematic Review.” JAMA 292 (13): 1593–1601. doi:10.1001/jama.292.13.1593.
   PubMed Web of Science ®Google Scholar
• Ghandour, Lilian, Rola Yasmine, and Faysal El-Kak. 2013. “Giving Consent Without Getting Informed.” Journal of Empirical Research on Human Research Ethics: An International Journal 8 (3): 12–21. doi:10.1525/jer.2013.8.3.12.
   PubMed Web of Science ®Google Scholar
• Graham, Anne, and Robyn Fitzgerald. 2010. “Progressing Children's Participation: Exploring the Potential of a Dialogical Turn.” Childhood 17 (3): 343–359. doi:10.1177/0907568210369219.
   Web of Science ®Google Scholar
• Graham, A., M. Powell, N. Taylor, D. Anderson, and R. Fitzgerald. 2013. Ethical Research Involving Children. Florence, Italy: UNICEF Office of Research – Innocenti.
   Google Scholar
• Harper, Douglas. 2002. “Talking about Pictures: A Case for Photo Elicitation.” Visual Studies 17 (1): 13–26. doi:10.1080/14725860220137345.
   Google Scholar
• Hart, Roger A. 1992. Children's Participation: From Tokenism to Citizenship. Inocenti Essays, 4. Florence, Italy: UNICEF International Child Development Centre.
   Google Scholar
• Ho, Wing-Chung, Tina Louisa Rochelle, and Wing-Kan Yuen. 2011. “‘We Are Not Sad At All’: Adolescents Talk about Their ‘City of Sadness’ Through Photovoice.” Journal of Adolescent Research 26 (6): 727–765. doi:10.1177/0743558410391255.
   Web of Science ®Google Scholar
• Hollmann, Christine M., and John R. McNamara. 1999. “Considerations in the Use of Active and Passive Parental Consent Procedures.” The Journal of Psychology 133 (2): 141–156. doi:10.1080/00223989909599729.
   Web of Science ®Google Scholar
• Jefford, Michael, and Rosemary Moore. 2008. “Improvement of Informed Consent and the Quality of Consent Documents.” The Lancet Oncology 9 (5): 485–493. doi:10.1016/S1470-2045(08)70128-1.
   PubMed Web of Science ®Google Scholar
• Klitzman, Robert L. 2013. “How IRBs View and Make Decisions about Consent Forms.” Journal of Empirical Research on Human Research Ethics: An International Journal 8 (1): 8–19. doi:10.1525/jer.2013.8.1.8.
   PubMed Web of Science ®Google Scholar
• Kumpunen, Stephanie, Lisa Shipway, Rachel M. Taylor, Susie Aldiss, and Faith Gibson. 2012. “Practical Approaches to Seeking Assent from Children.” Nurse Researcher 19 (2): 23–27. doi:10.7748/nr2012.01.19.2.23.c8905.
   PubMedGoogle Scholar
• Lambert, Veronica, and Michele Glacken. 2011. “Engaging with Children in Research: Theoretical and Practical Implications of Negotiating Informed Consent/Assent.” Nursing Ethics 18 (6): 781–801. doi:10.1177/0969733011401122.
   PubMed Web of Science ®Google Scholar
• Lundy, Laura. 2007. “‘Voice’ Is Not Enough: Conceptualising Article 12 of the United Nations Convention on the Rights of the Child.” British Educational Research Journal 33 (6): 927–942. doi:10.2307/30032800.
   Web of Science ®Google Scholar
• Maier, Karel. 2001. “Citizen Participation in Planning: Climbing a Ladder?” European Planning Studies 9 (6): 707–719. doi:10.1080/713666506.
   Web of Science ®Google Scholar
• Miller, Victoria A., and Robert M. Nelson. 2006. “A Developmental Approach to Child Assent for Nontherapeutic Research.” The Journal of Pediatrics 149 (1, Suppl.): S25–S30. doi:10.1016/j.jpeds.2006.04.047.
   PubMed Web of Science ®Google Scholar
• Mitchell, C. 2011. Doing Visual Research. New York: Sage.
   Google Scholar
• Murphy, Elizabeth, and Robert Dingwall. 2007. “Informed Consent, Anticipatory Regulation and Ethnographic Practice.” Social Science & Medicine 65 (11): 2223–2234. doi:10.1016/j.socscimed.2007.08.008.
   PubMed Web of Science ®Google Scholar
• NIH. 1998. NIH Policy and Guidelines on the Inclusion of Children as Participants in Research Involving Human Subjects. Washington, DC: National Institutes of Health.
   Google Scholar
• NIH. 2012. NIH Clinical Center Kids in Research. http://www.cc.nih.gov/kidsinresearch/index.html.
   Google Scholar
• Nyambedha, Erick Otieno. 2008. “Ethical Dilemmas of Social Science Research on AIDS and Orphanhood in Western Kenya.” Social Science & Medicine 67 (5): 771–779. doi:10.1016/j.socscimed.2008.02.024.
   PubMed Web of Science ®Google Scholar
• O'Lonergan, Theresa A., and Jeri E. Forster-Harwood. 2011. “Novel Approach to Parental Permission and Child Assent for Research: Improving Comprehension.” Pediatrics 127 (5): 917–924. doi:10.1542/peds.2010-3283.
   PubMed Web of Science ®Google Scholar
• Pink, Sarah. 2007. Doing Visual Ethnography. 2nd ed. Thousand Oaks, CA: Sage.
   Google Scholar
• Powell, Mary Ann, and Anne B. Smith. 2009. “Children's Participation Rights in Research.” Childhood 16 (1): 124–142. doi:10.1177/0907568208101694.
   Web of Science ®Google Scholar
• Ruiz-Casares, Mónica. 2012. “Building Trust, Enhancing Research: Carrying Out Fieldwork in Namibia.” In Research Beyond Borders: Multidisciplinary Reflections, edited by Lise-Hélène Smith and Anjara Narayan, 75–93. Lanham, MD: Lexington Books.
   Google Scholar
• Ryan, Rebecca, Megan Prictor, J. McLaughlin Kristin, and Sophie Hill. 2009. “Audio-Visual Presentation of Information for Informed Consent for Participation in Clinical Trials.” Cochrane Database of Systematic Reviews (1). http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD003717.pub2/abstract.
   Google Scholar
• Sand, K., N. L. Eik-Nes, and J. H. Loge. 2012. “Readability of Informed Consent Documents (1987–2007) for Clinical Trials: A Linguistic Analysis.” Journal of Empirical Research on Human Research Ethics: An International Journal 7 (4): 67–78. doi:10.1525/jer.2012.7.4.67.
   PubMed Web of Science ®Google Scholar
• Skelton, Tracey. 2008. “Research with Children and Young People: Exploring the Tensions Between Ethics, Competence and Participation.” Children's Geographies 6 (1): 21–36. doi: 10.1080/14733280701791876
   Web of Science ®Google Scholar
• Tait, A. R., T. Voepel-Lewis, and S. Malviya. 2003. “Do They Understand? Assent of Children Participating in Clinical Anesthesia and Surgery Research.” Anesthesiology 98: 609–614. doi:10.1097/01.sa.0000108447.59995.bb.
   PubMed Web of Science ®Google Scholar
• Teti, Michelle, Cynthia Murray, LaShaune Johnson, and Diane Binson. 2012. “Photovoice as a Community-Based Participatory Research Method among Women Living with HIV/AIDS: Ethical Opportunities and Challenges.” Journal of Empirical Research on Human Research Ethics: An International Journal 7 (4): 34–43. doi:10.1525/jer.2012.7.4.34.
   PubMed Web of Science ®Google Scholar
• UNGA. 1989. Convention on the Rights of the Child, G.A. Res. 44/25, U.N. GAOR, 44th Sess., Supp. No. 49, at 166, U.N. Doc A/441736. New York: United Nations General Assembly.
   Google Scholar