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Adolescent Barriers to HIV Prevention Research: Are Parental Consent Requirements the Biggest Obstacle?

      Abstract

      Purpose

      One third of people newly living with HIV/AIDS are adolescents. Research on adolescent HIV prevention is critical owing to differences between adolescents and adults. Parental permission requirements are often considered a barrier to adolescent enrollment in research, but whether adolescents view this barrier as the most important one is unclear.

      Methods

      Adolescents were approached in schools in KwaZulu-Natal, South Africa, and at a sexually transmitted infection clinic at the Children’s Hospital of Aurora, Colorado. Surveys with a hypothetical vignette about participation in a pre-exposure prophylaxis trial were conducted on smartphones or tablets with 75 adolescents at each site. We calculated descriptive statistics for all variables, using 2-sample tests for equality of proportions with continuity correction. Statistical significance was calculated at p < 0.05. Multivariate analyses were also conducted.

      Results

      Most adolescents thought side effects (77%) and parental consent requirements (69%) were very important barriers to research participation. When asked to rank barriers, adolescents did not agree on a single barrier as most important, but the largest group of adolescents ranked parental consent requirements as most important (29.5%). Parental consent was seen as more of a barrier for adolescents in South Africa than in the United States. Concerns about being experimented on or researchers’ mandatory reporting to authorities were ranked much lower. Finally, most (71%, n = 106) adolescents said they would want to extra support from another adult if parental permission was not required.

      Conclusion

      Adolescents consider both parental permission requirements and side effects important barriers to their enrollment in HIV prevention research. Legal reform and better communication strategies may help address these barriers.

      Keywords

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      References

        • Pettifor A.
        • Stoner M.
        • Pike C.
        • et al.
        Adolescent lives matter: Preventing HIV in adolescents.
        Curr Opin HIV AIDS. 2018; 13: 265-273
        • Guo J.
        • Chung I.J.
        • Hill K.G.
        • et al.
        Developmental relationships between adolescent substance use and risky sexual behavior in young adulthood.
        J Adolesc Health. 2002; 31: 354-362
        • Maughan-Brown B.
        • George G.
        • Beckett S.
        • et al.
        HIV risk among adolescent girls and young women in age-disparate partnerships: Evidence from KwaZulu-Natal, South Africa.
        J Acquir Immune Defic Syndr. 2018; 78: 155-162
        • Dellar R.C.
        • Dlamini S.
        • Karim Q.A.
        Adolescent girls and young women: Key populations for HIV epidemic control.
        J Int AIDS Soc. 2015; 18: 19408
        • Centers for Disease Control
        Vital signs: HIV transmission along the continuum of care — United States, 2016.
        MMWR Morb Mortal Wkly Rep. 2019; 68: 267-272
        • Kapogiannis B.G.
        • Handelsman E.
        • Ruiz M.S.
        • et al.
        Introduction: Paving the way for biomedical HIV prevention interventions in youth.
        J Acquir Immune Defic Syndr. 2010; 54: S1-S4
        • Kakuda T.N.
        • Brochot A.
        • Green B.
        • et al.
        Pharmacokinetics and pharmacokinetic/pharmacodynamic relationships of etravirine in HIV-1-infected, treatment-experienced children and adolescents in PIANO.
        J Clin Pharmacol. 2016; 56: 1395-1405
        • Giuliano A.R.
        • Lazcano-Ponce E.
        • Villa L.
        • et al.
        Impact of baseline covariates on the immunogenicity of a quadrivalent (types 6, 11, 16, and 18) human papillomavirus virus-like particle vaccine.
        J Infect Dis. 2007; 196: 1153-1162
        • Kann L.
        • McManus T.
        • Harris W.A.
        • et al.
        Youth risk behavior surveillance - United States, 2017.
        MMWR Surveill Summ. 2018; 67: 1-114
        • Strode A.
        • Slack C.
        Sex, lies and disclosures: Researchers and the reporting of under-age sex: Opinion.
        S Afr J HIV Med. 2009; 10: 8-10
        • Hosek S.G.
        • Siberry G.
        • Bell M.
        • et al.
        The acceptability and feasibility of an HIV preexposure prophylaxis (PrEP) trial with young men who have sex with men.
        J Acquir Immune Defic Syndr. 2013; 62: 447-456
        • Nelson R.M.
        • Lewis L.L.
        • Struble K.
        • Wood S.F.
        Ethical and regulatory considerations for the inclusion of adolescents in HIV biomedical prevention research.
        J Acquir Immune Defic Syndr. 2010; 54: S18-S24
        • Otwombe K.N.
        • Sikkema K.J.
        • Dietrich J.
        • et al.
        Willingness to participate in biomedical HIV prevention studies after the HVTN 503/phambili trial: A survey conducted among adolescents in Soweto, South Africa.
        J Acquir Immune Defic Syndr. 2011; 58: 211-218
        • Broome M.E.
        Consent (assent) for research with pediatric patients.
        Semin Oncol Nurs. 1999; 15: 96-103
        • Broome M.E.
        • Richards D.J.
        • Hall J.M.
        Children in research: The experience of ill children and adolescents.
        J Fam Nurs. 2001; 7: 32-49
        • Pletsch P.K.
        • Stevens P.E.
        Children in research: Informed consent and critical factors affecting mothers.
        J Fam Nurs. 2001; 7: 50-70
        • Stanford P.D.
        • Monte D.A.
        • Briggs F.M.
        • et al.
        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: 192-203
        • Villarruel A.M.
        • Jemmott L.S.
        • Jemmott J.B.
        • et al.
        Recruitment and retention of Latino adolescents to a research study: Lessons learned from a randomized clinical trial.
        J Spec Pediatr Nurs. 2006; 11: 244-250
        • Jaspan H.B.
        • Soka N.F.
        • Mathews C.
        • et al.
        A qualitative assessment of perspectives on the inclusion of adolescents in HIV vaccine trials in South Africa.
        Int J STD AIDS. 2010; 21: 172-176
        • Jaspan H.B.
        • Berwick J.R.
        • Myer L.
        • et al.
        Adolescent HIV prevalence, sexual risk, and willingness to participate in HIV vaccine trials.
        J Adolesc Health. 2006; 39: 642-648
        • Alexander A.B.
        • Ott M.A.
        • Lally M.A.
        • et al.
        Adolescent decision making about participation in a hypothetical HIV vaccine trial.
        Vaccine. 2015; 33: 1331-1337
        • Groves A.K.
        • Hallfors D.D.
        • Iritani B.J.
        • et al.
        “I think the parent should be there because no one was born alone”: Kenyan adolescents' perspectives on parental involvement in HIV research.
        Afr J AIDS Res. 2018; 17: 227-239
        • Macapagal K.
        • Coventry R.
        • Arbeit M.R.
        • et al.
        “I won't out myself just to do a survey”: Sexual and gender minority adolescents' perspectives on the risks and benefits of sex research.
        Arch Sex Behav. 2017; 46: 1393-1409
        • Fisher C.B.
        • Arbeit M.R.
        • Dumont M.S.
        • et al.
        Self-consent for HIV prevention research involving sexual and gender minority youth: Reducing barriers through evidence-based ethics.
        J Empir Res Hum Res Ethics. 2016; 11: 3-14
        • Chimbindi N.
        • Mthiyane N.
        • Birdthistle I.
        • et al.
        Persistently high incidence of HIV and poor service uptake in adolescent girls and young women in rural KwaZulu-Natal, South Africa prior to DREAMS.
        PLoS One. 2018; 13: e0203193
        • Colorado Dept. Public Health & Environ
        HIV in Colorado: HIV epidemiology annual report for cases diagnosed through December 2016.
        (Available at:)
        • Moore Q.L.
        • Paul M.E.
        • McGuire A.L.
        • et al.
        Legal barriers to adolescent participation in research about HIV and other sexually transmitted infections.
        Am J Public Health. 2016; 106: 40-44
        • South Africa National Department of Health
        Ethics in health research: Principles, processes and structures.
        (Available at:)
        • Gilbert A.L.
        • Knopf A.S.
        • Fortenberry J.D.
        • et al.
        Adolescent self-consent for biomedical human immunodeficiency virus prevention research.
        J Adolesc Health. 2015; 57: 113-119
        • Wallace M.
        • Middelkoop K.
        • Smith P.
        • et al.
        Feasibility and acceptability of conducting HIV vaccine trials in adolescents in South Africa: Going beyond willingness to participate towards implementation.
        S Afr Med J. 2018; 108: 291-298
        • Liu C.
        • Cox Jr., R.B.
        • Washburn I.J.
        • et al.
        The effects of requiring parental consent for research on adolescents' risk behaviors: A meta-analysis.
        J Adolesc Health. 2017; 61: 45-52
        • Moilanen K.L.
        Predictors of parental consent for adolescent participation in sexual health related research.
        J Empir Res Hum Res Ethics. 2015; 10: 157-168
        • Fletcher F.E.
        • Fisher C.
        • Buchberg M.K.
        • et al.
        “Where did this [PrEP] come from?” African American mother/daughter perceptions related to adolescent preexposure prophylaxis (PrEP) utilization and clinical trial participation.
        J Empir Res Hum Res Ethics. 2018; 13: 173-184
        • Department of Health and Human Services
        Code of Federal Regulations, 45 C.F.R. § 46.408.
        2009
        • Casey B.J.
        Beyond simple models of self-control to circuit-based accounts of adolescent behavior.
        Annu Rev Psychol. 2015; 66: 295-319
        • Lally M.
        • Goldsworthy R.
        • Sarr M.
        • et al.
        Evaluation of an intervention among adolescents to reduce preventive misconception in HIV vaccine clinical trials.
        J Adolesc Health. 2014; 55: 254-259
        • Dal-Re R.
        • Ndebele P.
        • Higgs E.
        • et al.
        Protections for clinical trials in low and middle income countries need strengthening not weakening.
        BMJ. 2014; 349: g4254
        • Chein J.
        • Albert D.
        • O'Brien L.
        • et al.
        Peers increase adolescent risk taking by enhancing activity in the brain's reward circuitry.
        Dev Sci. 2011; 14: F1-F10
      1. Rochat T, Van Rooyen H, Gillespie N, et al. Addressing intergenerational communication is key to developing an “adolescent-friendly” family-based HIV counselling and testing intervention. Poster presentation at the 21st International AIDS Conference, Durban, South Africa, 18-22 July, 2016.

      Linked Article

      • HIV Prevention in Adolescents: Removing Obstacles and Protecting Human Rights
        Journal of Adolescent HealthVol. 67Issue 4
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          A disturbingly high proportion of new HIV infections occur in adolescents and young adults, and far too many young people are dying of AIDS-related illnesses. As noted by Shah et al. [1] in their important study of obstacles to HIV prevention research in adolescents, globally one-third of new HIV infections are in the 15- to 24-year age group. HIV prevention for young people is therefore an essential public health imperative. Successful HIV prevention efforts must include research, outreach and education, HIV testing and counseling, and access to preexposure prophylaxis (PrEP) as well as HIV treatment.
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