Parents’ Perspectives About Adolescent Boys’ Involvement in Biomedical HIV Prevention Research
Research on the use of pre-exposure prophylaxis (PrEP) among adolescents at high risk for HIV is urgently needed, and parents’ perspectives on these studies are essential for guiding the responsible conduct of adolescent PrEP research. We conducted interviews with 30 parents of adolescent boys (50% known/presumed heterosexual; 50% sexual minority) to understand their views of research risks and benefits and parental permission regarding their son’s involvement in a hypothetical PrEP adherence trial. Parents identified several health and educational benefits of the study and expressed that waiving parental permission would overcome barriers to accessing PrEP, particularly for youth who may benefit most. Among their concerns were medication non-adherence and risk compensation. Parents provided suggestions to facilitate informed, rational, and voluntary participation decisions and protect youth’s safety if parental permission was waived. These findings can inform ways to increase parental trust in PrEP research and create adequate protections for adolescent participants.
KeywordsHIV prevention Pre-exposure prophylaxis Parents Adolescents Men who have sex with men
This study was supported by R01MD009561 from the National Institute on Minority Health and Health Disparities (PIs: Mustanski and Fisher). Brian A. Feinstein's time was supported by a grant from the National Institute on Drug Abuse (1F32DA042708). We acknowledge the NIH supported Third Coast Center for AIDS Research for creating a supportive environment for HIV/AIDS research (P30AI117943). The content in this manuscript is solely the responsibility of the authors and does not reflect the views of the National Institutes of Health. We are grateful to Kai Korpak, Maggie Matson, and Arielle Zimmerman for their assistance with participant recruitment, interview transcription, and coding. We also would like to thank our participants, who generously gave us their time and from whom we learned so much.
- Centers for Disease Control and Prevention [CDC]. (2016). Diagnoses of HIV infection among adolescents and young adults in the United States and 6 dependent areas 2010–2014. HIV surveillance supplemental report. Retrieved from http://www.cdc.gov/hiv/library/reports/surveillance/.
- Chavez, N. R., Williams, C. Y., Ipp, L. S., Catallozzi, M., Rosenthal, S. L., & Breitkopf, C. R. (2016). Altruistic reasoning in adolescent–parent dyads considering participation in a hypothetical sexual health clinical trial for adolescents. Research Ethics, 12, 68–79. doi: 10.1177/1747016115587963.CrossRefPubMedGoogle Scholar
- Dedoose. (2015). Web application for managing, analyzing, and presenting qualitative and mixed method data. Los Angeles, CA: SocioCultural Research Consultants, LLC. Retrieved from https://www.dedoose.com/.
- Department of Health and Human Services. (2009). Code of Federal Regulations, Title 45 Public Welfare, Part 46 Protection of Human Subjects. Retrieved from http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.html.
- Fisher, C. B., Arbeit, M. R., Dumont, M. S., Macapagal, K., & Mustanski, B. (2016). Self-consent for HIV prevention research involving sexual and gender minority youth: Reducing barriers through evidence-based ethics. Journal of Empirical Research on Human Research Ethics, 11, 3–14. doi: 10.1177/1556264616633963.CrossRefPubMedPubMedCentralGoogle Scholar
- Garofalo, R., Hotton, A. L., Kuhns, L. M., Gratzer, B., & Mustanski, B. (2016). Incidence of HIV infection and sexually transmitted infections and related risk factors among very young men who have sex with men. Journal of Acquired Immune Deficiency Syndromes, 72, 79–86. doi: 10.1097/QAI.0000000000000933.CrossRefPubMedPubMedCentralGoogle Scholar
- Garofalo, R., Mustanski, B., & Donenberg, G. (2008). Parents know and parents matter; is it time to develop family-based HIV prevention programs for young men who have sex with men? Journal of Adolescent Health, 43, 201–204. doi: 10.1016/j.jadohealth.2008.01.017.CrossRefPubMedPubMedCentralGoogle Scholar
- Gilbert, A. L., Knopf, A. S., Fortenberry, J. D., Hosek, S. G., Kapogiannis, B. G., & Zimet, G. D. (2015). Adolescent self-consent for biomedical human immunodeficiency virus prevention research. Journal of Adolescent Health, 57, 113–119. doi: 10.1016/j.jadohealth.2015.03.017.CrossRefPubMedPubMedCentralGoogle Scholar
- Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory: Strategies for qualitative research. Chicago, IL: Aldine Publishing Company.Google Scholar
- Knopf, A. S., Gilbert, A. L., Zimet, G. D., Kapogiannis, B. G., Hosek, S. G., Fortenberry, J. D., & Ott, M. A. (2016). Moral conflict and competing duties in the initiation of a biomedical HIV prevention trial with minor adolescents. AJOB Empirical Bioethics. doi: 10.1080/23294515.2016.1251506.Google Scholar
- Macapagal, K., Coventry, R., Arbeit, M. R., Fisher, C. B., & Mustanski, B. (2017). “I won’t out myself just to do a survey”: Sexual and gender minority adolescents’ perspectives on the risks and benefits of sex research. Archives of Sexual Behavior, 46, 1393–1409. doi: 10.1007/s10508-016-0784-5.CrossRefPubMedGoogle Scholar
- Mustanski, B., Coventry, R., Macapagal, K., Arbeit, M. R., & Fisher, C. B. (2017). Sexual and gender minority adolescents’ views on HIV research participation and parental permission: A mixed-methods study. Perspectives on Sexual and Reproductive Health, 49, 111–121. doi: 10.1363/psrh.12027.CrossRefPubMedGoogle Scholar
- Pace, J. E., Siberry, G. K., Hazra, R., & Kapogiannis, B. G. (2013). Preexposure prophylaxis for adolescents and young adults at risk for HIV infection: Is an ounce of prevention worth a pound of cure? Clinical Infectious Diseases, 56, 1149–1155. doi: 10.1093/cid/cis1020.CrossRefPubMedGoogle Scholar
- Rosenthal, S. L., de Roche, A. M., Catallozzi, M., Breitkopf, C. R., Ipp, L. S., Chang, J., … Hu, M. C. (2016). Parents’ and adolescents’ attitudes about parental involvement in clinical research. Journal of Pediatric and Adolescent Gynecology, 29, 372–377. doi: 10.1016/j.jpag.2016.01.119.CrossRefPubMedPubMedCentralGoogle Scholar
- United Nations General Assembly. (1989). Convention on the rights of the child (A/RES/44/25). New York, NY. Retrieved from http://www.un.org/documents/ga/res/44/a44r025.htm.
- White House Office of National AIDS Policy. (2015). National HIV/AIDS strategy for the United States: Updated to 2020. Retrieved from https://aids.gov/federal-resources/national-hiv-aids-strategy/nhas-update.pdf.