“I Definitely Want Kids, But I Think the Risks Are Pretty High”: Fertility Desires and Perinatal HIV Transmission Knowledge Among Adolescents and Young Adults with Perinatally-Acquired HIV

  • Cynthia D. Fair
  • Jamie Nicole Albright
Part of the Cross-Cultural Research in Health, Illness and Well-Being book series (CCRHIWB)


Today youth with perinatally-acquired HIV (PHIV) are living into young adulthood. Relatively little is known about their reproductive intentions or knowledge of ways to prevent perinatal HIV transmission (PHT). Interviews were conducted with 35 adolescents and young adults (AYA) (mean age 20.7 years) with PHIV recruited from two pediatric infectious disease clinics in the southeast U.S. The majority of participants were African American (n = 27, 77.1 %) and female (n = 23, 65.7 %). This cross-sectional study examined fertility desires and intentions of the maturing population of individuals with perinatally-acquired HIV (PHIV) and their knowledge of PHT. Twenty-three percent (n = 8) of participants had ever experienced a pregnancy and 14.3 % (n = 5) were current parents or pregnant. Among participants, 88.6 % (n = 31) expressed a desire to have a child in the future among whom 93.5 % (n = 29) intend to have a child. Only eight participants accurately reported the risk of PHT. The mean reported risk of PHT was 32.5 %. Age and history of pregnancy were not related to knowledge. Despite errors in estimating risk, many participants knew important information about factors that could reduce the risk of PHT including “take medicine”, “be healthy”, have a C-section, avoid breastfeeding, and maintain a low viral load. Case studies highlight the complex factors that may explain high levels of fertility desires and intentions yet low levels of PHT prevention, while also providing insight into areas for intervention. Reproductive and sexual health education must include discussion of fertility desires and intentions rather than simply focusing on pregnancy and transmission prevention as a means to heighten the effectiveness of harm reduction strategies and support the health functioning of the maturing population of youth with PHIV as they enter adulthood.


Fertility desires Perinatally-acquired HIV Perinatal HIV transmission Adolescents and young adults 



We would like express our deep gratitude to the young people who shared their stories with us. We would also like to thank the Elon University Faculty Research and Development Committee, the Lumen Prize, and the Elon College Fellows program for providing funding.


  1. Abiodun, M., Ijaiya, M., & Aboyeji, P. (2007). Awareness and knowledge of mother-to-child transmission of HIV among pregnant women. Journal of the National Medical Association, 99(7), 758–763.Google Scholar
  2. Arras, J. (1990). AIDS and reproductive decisions: Having children in fear and trembling. The Milbank Quarterly, 68(3), 353–382.CrossRefGoogle Scholar
  3. Badell, M. L., Lathrop, E., Haddad, L. B., Goedken, P., Nguyen, M. L., & Cwiak, C. A. (2012). Reproductive healthcare needs and desires in a cohort of HIV-positive women. Infectious Diseases in Obstetrics and Gynecology, 2012, Article ID 107878, 6 pages. doi: 10.1155/2012/107878.
  4. Bedimo-Rung, A., & Clark, A. (2005). Reproductive decision-making among HIV-Infected women. Journal of the National Medical Association, 97(10), 1403–1410.Google Scholar
  5. Bowlby, J. (1982). Attachment and loss: Retrospect and prospect. American Journal of Orthopsychiatry, 52(4), 664–678.CrossRefGoogle Scholar
  6. Center for Reproductive Rights. (2010). Proceedings of the Ninth session of the UPR working group of the human rights council: Report on the United States’ compliance with its human rights obligations in the area of women’s reproductive and sexual health. United Nations Periodic Review.Google Scholar
  7. Centers for Disease Control and Prevention. (2011). Pediatric HIV surveillance 2011. Retrieved May 30, 2014, from
  8. Chen, J., Phillips, K., Kanouse, D., Collins, R., & Miu, A. (2001). Fertility desires and intentions of HIV-positive men and women. Family Planning Perspectives, 33(4), 144–152.CrossRefGoogle Scholar
  9. Cohn, L., Macfarlane, S., Yanez, C., & Imai, W. (1995). Risk-perception: Differences between adolescents and adults. Health Psychology, 14(3), 217–222.CrossRefGoogle Scholar
  10. Cooper, E., & Charurat, M. (2002). Combination antiretroviral strategies for the treatment of pregnant HIV-1-infected women and prevention of perinatal HIV-1 transmission. Journal of AIDS, 5, 484–494.Google Scholar
  11. Craft, S., Delaney, R., Bautista, D., & Serovich, J. (2007). Pregnancy decisions among women with HIV. AIDS and Behavior, 11(6), 927–935.CrossRefGoogle Scholar
  12. Edin, K., & Kefalas, M. (2011). Promises I can keep: Why poor women put motherhood before marriage. Berkeley: University of California Press.Google Scholar
  13. Elfenbein, D., & Felice, M. (2003). Adolescent pregnancy. Pediatric Clinics of North America, 50(4), 781–800.CrossRefGoogle Scholar
  14. Erikson, E. (1980). Identity and the life cycle (Reissue ed.). New York: W. W. Norton & Company.Google Scholar
  15. Ezeanolue, E. E., Wodi, A. P., Patel, R., Dieudonne, A., & Oleske, J. M. (2006). Sexual behaviors and procreational intentions of adolescents and young adults with perinatally acquired human immunodeficiency virus infection: Experience of an urban tertiary center. Journal of Adolescent Health, 38(6), 719–725.CrossRefGoogle Scholar
  16. Fair, C., & Albright, J. (2012). “Don’t tell him you have HIV unless he’s ‘he one’”: Romantic relationships among adolescents and young adults with perinatal HIV infection. AIDS Patient Care and STDs, 26(12), 746–754.CrossRefGoogle Scholar
  17. Fair, C., Wiener, L., Zadeh, S., Albright, J., Mellins, C. A., Mancilla, M., Kapetnovic, S., et al. (2013). Reproductive health decision-making in perinatally HIV-infected adolescents and young adults. Maternal and Child Health Journal, 17(5), 797–808.CrossRefGoogle Scholar
  18. Fakoya, A., Lamba, H., Mackie, N., Nandwani, R., Brown, A., Bernard, E., … Gazzard, B. (2008). British HIV Association, BASHH and FSRH guidelines for the management of the sexual and reproductive health of people living with HIV infection 2008. HIV Medicine, 9(9), 681–720.Google Scholar
  19. Finocchario-Kessler, S., Sweat, M. D., Dariotis, J. K., Trent, M. E., Kerrigan, D. L., Keller, J. M., & Anderson, J. R. (2010). Understanding high fertility desires and intentions among a sample of urban women living with HIV in the United States. AIDS and Behavior, 14(5), 1106–1114.CrossRefGoogle Scholar
  20. Finocchario-Kessler, S., Sweat, M. D., Dariotis, J. K., Anderson, J. R., Jennings, J. M., Keller, J. M., … Trent, M. (2012). Childbearing motivations, pregnancy desires, and perceived partner response to a pregnancy among urban female youth: Does HIV-infection status make a difference? AIDS Care, 24(1), 1–11.Google Scholar
  21. Frederick, T., Thomas, P., Mascola, L., Hsu, H., Rakusan, T., Mapson, C., … Bertolli, J. (2000). Human immunodeficiency virus-infected adolescents: A descriptive study of older children in New York City, Los Angeles County, Massachusetts and Washington, DC. Pediatric Infectious Disease Journal, 19(6), 551–555.Google Scholar
  22. Gage, A. J. (1998). Sexual activity and contraceptive use: The components of the decision making process. Studies in Family Planning, 29(2), 154–166.CrossRefGoogle Scholar
  23. Gruskin, S., Firestone, R., MacCarthy, S., & Ferguson, L. (2008). HIV and pregnancy intentions: Do services adequately respond to women’s needs? American Journal of Public Health, 98(10), 1746–1750.CrossRefGoogle Scholar
  24. Hass, P. H. (1974). Wanted and unwanted pregnancies: A fertility decision-making model. Journal of Social Issues, 30(4), 125–165.CrossRefGoogle Scholar
  25. Matthews, L. T., & Mukherjee, J. S. (2009). Strategies for harm reduction among HIV-affected couples who want to conceive. AIDS and Behavior, 13(Suppl. 1), 5–11.CrossRefGoogle Scholar
  26. Mellins, C. A., Brackis-Cott, E., Leu, C.-S., Elkington, K. S., Dolezal, C., Wiznia, A., et al. (2009). Rates and types of psychiatric disorders in perinatally human immunodeficiency virus-infected youth and seroreverters. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 50(9), 1131–1138.CrossRefGoogle Scholar
  27. Miller, W. B. (1994). Childbearing motivations, desires, and intentions: A theoretical framework. Genetic, Social & General Psychology Monographs, 120(2), 223–253.Google Scholar
  28. Miller, W. B., Severy, L., & Pasta, D. (2004). A framework for modelling fertility motivation in couples. Population Studies, 58(2), 193–205.CrossRefGoogle Scholar
  29. Morgan, S., & Rackin, H. (2010). The correspondence between fertility intentions and behavior in the United States. Population and Development Review, 36(1), 91–118.CrossRefGoogle Scholar
  30. Nozyce, M., Lee, S., & Wiznia, A. (2006). A behavioral and cognitive profile of clinically stable HIV-infected children. Pediatrics, 117(3), 763–770.CrossRefGoogle Scholar
  31. Nyblade, L., Stangl, A., Weiss, E., & Ashburn, K. (2009). Combating HIV stigma in health care settings: What works? Journal of the International AIDS Society, 12(15), 1–7.Google Scholar
  32. Paiva, V., Filipe, E. V., Santos, N., Lima, T. N., & Segurado, A. (2003). The right to love: The desire for parenthood among men living with HIV. Reproductive Health Matters, 11(22), 91–100.CrossRefGoogle Scholar
  33. Patton, M. (1990). Qualitative evaluation and research methods (2nd ed.). Thousand Oaks: Sage Publications.Google Scholar
  34. Phillips, U., Rosenberg, M., & Dobroszycki, J. (2011). Pregnancy in women with perinatally acquired HIV-infection: Outcomes and challenges. AIDS Care, 23(9), 1076–1082.CrossRefGoogle Scholar
  35. Plotnick, R. D. (2007). Adolescent expectations and desires about marriage and parenthood. Journal of Adolescence, 30(6), 943–963.CrossRefGoogle Scholar
  36. Rubinstein, A., Sicklick, M., & Gupta, A. (1983). Acquired immunodeficiency with reversed T4/T8 ratios in infants born to promiscuous and drug-addicted mothers. Journal of the American Medical Association, 17(249), 2350–2356.CrossRefGoogle Scholar
  37. Schoen, R., Astone, N., Kim, Y., Nathanson, C., & Fields, J. (1999). Do fertility intentions affect fertility behavior? Journal of Marriage and the Family, 16(3), 790–799.CrossRefGoogle Scholar
  38. Sherr, L., & Barry, N. (2004). Fatherhood and HIV-positive heterosexual men. HIV Medicine, 5(4), 258–263.CrossRefGoogle Scholar
  39. Sowell, R., Phillips, K., & Misener, T. (1999). HIV-infected women and motivation to add children to their families. Journal of Family Nursing, 5(3), 316–331.CrossRefGoogle Scholar
  40. Tepper, V., Kriebs, J., Lovelace, S., & Nair, P. (2013). The next generation: Perinatally infected adolescents and their reproductive health. In 19th international AIDS conference: Abstract no. WEAC0103. Retrieved August 18, 2014, from
  41. Townsend, C. L., Cortina-Borja, M., Peckham, C. S., de Ruiter, A., Lyall, H., & Tookey, P. A. (2008). Low rates of mother-to-child transmission of HIV following effective pregnancy interventions in the United Kingdom and Ireland, 2000–2006. AIDS, 22(8), 973–981.CrossRefGoogle Scholar
  42. Tuchman, L., & Kalogiros, I. (2010). Reproductive knowledge and preferences of adolescents and adults with cystic fibrosis: A web-based assessment. International Journal of Sexual Health, 22, 72–83.CrossRefGoogle Scholar
  43. Uhlenberg, P., & Mueller, M. (2003). Family context and individual well-being. In J. T. Mortimer & M. J. Shanahan (Eds.), Handbook of the life course (pp. 123–148). New York: Springer.CrossRefGoogle Scholar
  44. Ventura, S., & Curtin, S. (2012). Estimated pregnancy rates and rates of pregnancy outcomes for the United States, 1990–2008. National Vital Statistics Report, 60(7), 1–21.Google Scholar
  45. Wiener, L., Battles, H., & Wood, L. (2007). A longitudinal study of adolescents with perinatally or transfusion acquired HIV infection: Sexual knowledge, risk reduction self-efficacy and sexual behavior. AIDS and Behavior, 11(3), 471–478.CrossRefGoogle Scholar
  46. Williams, H., Watkins, C., & Risby, J. (1996). Reproductive decision-making and determinants of contraceptive use in HIV-infected women. Clinical Obstetrics and Gynecology, 39(2), 333–343.CrossRefGoogle Scholar

Copyright information

© Springer International Publishing Switzerland 2016

Authors and Affiliations

  1. 1.Elon UniversityElonUSA
  2. 2.Department of PsychologyUniversity of VirginiaCharlottesvilleUSA

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