Barriers to Adolescents' Participation in HIV Biomedical Prevention Research

Overview

Journal J Acquir Immune Defic Syndr

Specialty Infectious Diseases

Date 2010 Jun 24

PMID 20571418

Citations 57

Authors

Ralph J DiClemente

Monica S Ruiz

Jessica McDermott Sales

Affiliations

Soon will be listed here.

Abstract

Objectives: The inclusion of adolescents in HIV prevention clinical research has the potential to improve the current understanding of the safety and efficacy of biomedical prevention technologies in younger populations that are at increasing risk of HIV infection. However, there are significant individual, operational, and community-level barriers to engaging adolescents in clinical prevention trials.

Methods: This paper identifies and addresses individual, operational, and community-level barriers to adolescents' participation in HIV biomedical prevention research.

Results: Barriers identified and addressed in this paper include: (1) insufficient understanding of clinic prevention research, (2) self-presentation bias, (3) issues surrounding parental consent, (4) access to clinical trials, (5) mistrust of research, and (6) stigma associated with participation in clinical trials. Examples of programs where adolescents have been successfully engaged in prevention research are highlighted and the lessons learned from these programs indicate that establishing collaborations with key stakeholders in the community are essential for conducting biomedical research with vulnerable populations, including adolescents.

Conclusions: Given the importance of understanding adolescents' reactions, acceptability, and utilization of new biomedical prevention technologies it is imperative that researchers acknowledge and address these barriers to enhance adolescents' participation and retention in HIV biomedical prevention research.

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References

Valente T, Zogg J, Christensen S, Richardson J, Kovacs A, Operskalski E . Using social networks to recruit an HIV vaccine preparedness cohort. J Acquir Immune Defic Syndr. 2009; 52(4):514-23. PMC: 2783777. DOI: 10.1097/QAI.0b013e3181acff91. View

Ziff M, Willard N, Harper G, Bangi A, Johnson J, Ellen J . Connect to Protect Researcher-Community Partnerships: Assessing Change in Successful Collaboration Factors over Time. Glob J Community Psychol Pract. 2010; 1(1):32-39. PMC: 2998234. DOI: 10.7728/0101201004. View

Wendler D . Assent in paediatric research: theoretical and practical considerations. J Med Ethics. 2006; 32(4):229-34. PMC: 2588342. DOI: 10.1136/jme.2004.011114. View

Newman P, Duan N, Roberts K, Seiden D, Rudy E, Swendeman D . HIV vaccine trial participation among ethnic minority communities: barriers, motivators, and implications for recruitment. J Acquir Immune Defic Syndr. 2006; 41(2):210-7. DOI: 10.1097/01.qai.0000179454.93443.60. View

Thomas S, Quinn S . The Tuskegee Syphilis Study, 1932 to 1972: implications for HIV education and AIDS risk education programs in the black community. Am J Public Health. 1991; 81(11):1498-505. PMC: 1405662. DOI: 10.2105/ajph.81.11.1498. View

Remafedi G, Jurek A, Oakes J . Sexual identity and tobacco use in a venue-based sample of adolescents and young adults. Am J Prev Med. 2008; 35(6 Suppl):S463-70. DOI: 10.1016/j.amepre.2008.09.002. View

McCormick A, McKay M, Wilson M, McKinney L, Paikoff R, Bell C . Involving families in an urban HIV preventive intervention: how community collaboration addresses barriers to participation. AIDS Educ Prev. 2000; 12(4):299-307. View

Marshal M, Friedman M, Stall R, King K, Miles J, Gold M . Sexual orientation and adolescent substance use: a meta-analysis and methodological review. Addiction. 2008; 103(4):546-56. PMC: 2680081. DOI: 10.1111/j.1360-0443.2008.02149.x. View

Fortenberry J . Health care seeking behaviors related to sexually transmitted diseases among adolescents. Am J Public Health. 1997; 87(3):417-20. PMC: 1381015. DOI: 10.2105/ajph.87.3.417. View

10.

Buchbinder S, Metch B, Holte S, Scheer S, Coletti A, Vittinghoff E . Determinants of enrollment in a preventive HIV vaccine trial: hypothetical versus actual willingness and barriers to participation. J Acquir Immune Defic Syndr. 2004; 36(1):604-12. DOI: 10.1097/00126334-200405010-00009. View

11.

Santelli J, Smith Rogers A, Rosenfeld W, Durant R, Dubler N, Morreale M . Guidelines for adolescent health research. A position paper of the Society for Adolescent Medicine. J Adolesc Health. 2003; 33(5):396-409. View

12.

Sahay S, Mehendale S, Sane S, Brahme R, Brown A, Charron K . Correlates of HIV vaccine trial participation: an Indian perspective. Vaccine. 2005; 23(11):1351-8. DOI: 10.1016/j.vaccine.2004.09.032. View

13.

Flicker S, Guta A . Ethical approaches to adolescent participation in sexual health research. J Adolesc Health. 2007; 42(1):3-10. DOI: 10.1016/j.jadohealth.2007.07.017. View

14.

Stanford P, Monte D, Briggs F, Flynn P, Tanney M, Ellenberg J . Recruitment and retention of adolescent participants in HIV research: findings from the REACH (Reaching for Excellence in Adolescent Care and Health) Project. J Adolesc Health. 2003; 32(3):192-203. DOI: 10.1016/s1054-139x(02)00392-0. View

15.

Zimet G, Blythe M, Fortenberry J . Vaccine characteristics and acceptability of HIV immunization among adolescents. Int J STD AIDS. 2000; 11(3):143-9. DOI: 10.1258/0956462001915570. View

16.

Greenstein S, Siegal B . Compliance and noncompliance in patients with a functioning renal transplant: a multicenter study. Transplantation. 1999; 66(12):1718-26. DOI: 10.1097/00007890-199812270-00026. View

17.

Fortenberry J . The effects of stigma on genital herpes care-seeking behaviours. Herpes. 2004; 11(1):8-11. View

18.

Jones F, Broome M . Focus groups with African American adolescents: enhancing recruitment and retention in intervention studies. J Pediatr Nurs. 2001; 16(2):88-96. DOI: 10.1053/jpdn.2001.23151. View

19.

Sengupta S, Strauss R, Devellis R, Quinn S, DeVellis B, Ware W . Factors affecting African-American participation in AIDS research. J Acquir Immune Defic Syndr. 2000; 24(3):275-84. DOI: 10.1097/00126334-200007010-00014. View

20.

Gamble V . A legacy of distrust: African Americans and medical research. Am J Prev Med. 1993; 9(6 Suppl):35-8. View