Adolescents' understanding of research concepts: A focus group study

Archives of Pediatrics and Adolescent Medicine

Volumn 165, Issue 6, 2011, Pages 533-539

  Blake, Diane R ^a   Lemay, Celeste A ^a   Kearney, Margaret H ^c   Mazor, Kathleen M ^b  

^a UNIVERSITY OF MASSACHUSETTS   (United States)

^b UNIVERSITY OF MASSACHUSETTS MEDICAL SCHOOL   (United States)

^c UNIVERSITY OF ROCHESTER   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

HUMAN IMMUNODEFICIENCY VIRUS ANTIBODY; HUMAN IMMUNODEFICIENCY VIRUS VACCINE; PLACEBO; VACCINE;

ADOLESCENT; ARTICLE; CLINICAL TRIAL (TOPIC); COMPREHENSION; DECISION MAKING; FALSE POSITIVE RESULT; FEMALE; HUMAN; MALE; MEDICAL RESEARCH; NORMAL HUMAN; PARENT; PRIORITY JOURNAL; QUALITATIVE RESEARCH; RANDOMIZATION; THERAPEUTIC MISCONCEPTION;

ADOLESCENT; AGE FACTORS; CLINICAL TRIALS AS TOPIC; COMPREHENSION; FEMALE; FOCUS GROUPS; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HIV INFECTIONS; HUMANS; INTERVIEWS AS TOPIC; NEEDS ASSESSMENT; QUALITATIVE RESEARCH; RISK FACTORS; SENSITIVITY AND SPECIFICITY; UNITED STATES; VACCINATION;

EID: 79958050085     PISSN: 10724710     EISSN: 15383628     Source Type: Journal    
DOI: 10.1001/archpediatrics.2011.87     Document Type: Article

References (21)

1. Protection of Human Subjects, 45 USC §46 (2009).
2. Howard JM, DeMets D. How informed is informed consent? the BHAT experience. Control Clin Trials. 1981;2(4):287-303.
3. Joffe S, Cook EF, Cleary PD, Clark JW, Weeks JC. Quality of informed consent in cancer clinical trials: a cross-sectional survey. Lancet. 2001;358(9295):1772-1777. (Pubitemid 33153003)
4. Appelbaum PS, Roth LH, Lidz C. The therapeutic misconception: informed consent in psychiatric research. Int J Law Psychiatry. 1982;5(3-4):319-329.
5. Appelbaum PS, Roth LH, Lidz CW, Benson P, Winslade W. False hopes and best data: consent to research and the therapeutic misconception. Hastings Cent Rep. 1987;17(2):20-24.
6. Flory J, Emanuel E. Interventions to improve research participants' understanding in informed consent for research: a systematic review. JAMA. 2004;292(13):1593-1601. (Pubitemid 39314966)
7. Henderson GE, Churchill LR, Davis AM, et al. Clinical trials and medical care: defining the therapeutic misconception. PLoS Med. 2007;4(11):e324. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2082641. Accessed March 8, 2011.
8. Siminoff LA. Toward improving the informed consent process in research with humans. IRB: Ethics Hum Res. 2003;25(suppl 5):S1-S3.
9. Murphy DA, Hoffman D, Seage GR III, et al; Adolescent Trials Network for HIV/AIDS Interventions. Improving comprehension for HIV vaccine trial information among adolescents at risk of HIV. AIDS Care. 2007;19(1):42-51.
10. Reynolds WW, Nelson RM. Risk perception and decision processes underlying informed consent to research participation. Soc Sci Med. 2007;65(10):2105-2115. (Pubitemid 47593039)
11. Chappuy H, Doz F, Blanche S, Gentet J-C, Tréluyer JM. Children's views on their involvement in clinical research. Pediatr Blood Cancer. 2008;50(5):1043-1046. (Pubitemid 351500184)
12. Unguru Y, Sill AM, Kamani N. The experiences of children enrolled in pediatric oncology research: implications for assent [published online ahead of print March 29, 2010]. Pediatrics. 2010;125(4):e876-e883. doi:10.1542/peds.2008- 3429.
13. Tait AR, Voepel-Lewis T, Malviya S. Presenting research information to children: a tale of two methods. Anesth Analg. 2007;105(2):358-364. (Pubitemid 47196411)
14. Brody JL, Scherer DG, Annett RD, Turner C, Dalen J. Family and physician influence on asthma research participation decisions for adolescents: the effects of adolescent gender and research risk [published online August 1, 2006]. Pediatrics. 2006;118(2):e356-e362. doi:10.1542/peds.2005-2589.
15. Office of National AIDS Policy. Youth and HIV/AIDS 2000: A New American Agenda. Washington, DC: White House; 2000.
16. Lewis CE, Lewis MA, Ifekwunigue M. Informed consent by children and participation in an influenza vaccine trial. Am J Public Health. 1978;68(11):1079-1082. (Pubitemid 9082951)
17. Weithorn LA, Campbell SB. The competency of children and adolescents to make informed treatment decisions. Child Dev. 1982;53(6):1589-1598.
18. Susman EJ, Dorn LD, Fletcher JC. Participation in biomedical research: the consent process as viewed by children, adolescents, young adults, and physicians. J Pediatr. 1992;121(4):547-552.
19. Petersen AC, Leffert N. Developmental issues influencing guidelines for adolescent health research: a review. J Adolesc Health. 1995;17(5):298-305. (Pubitemid 26001399)
20. Hsieh H-F, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277-1288.
21. The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research. Washington, DC: US Dept of Health & Human Services, Office of the Secretary, Office of Public Health & Science, Office for Human Research Protections; 1979.