Desire for improved disclosure, community and bonding among young adults with perinatally acquired HIV

Abstract

The increasing number of patients with PHIV transitioning into adulthood in high-income countries over the last decade or so has provided health care providers with opportunities to learn about unique obstacles and challenges faced by this population. To better understand the lived experiences of youth with PHIV, we conducted comprehensive interviews with nine patients with PHIV, between 19 and 30 years of age, at the Yale New Haven Human Immunodeficiency Virus (HIV) Program. Our interviews aimed to provide youth with PHIV a forum to share their views about: (1) what comprises a good quality of life (QoL), (2) their personal experiences with HIV disclosure, and (3) challenges they faced growing up and transitioning into adulthood. We derived supporting data on the resilience and QoL of our participants from responses to The Brief Resilience Scale and WHOQOL-HIV BREF surveys. Common themes that emerged included: desire for improved disclosure of HIV status, fear of stigma, and anger against biological mothers. Anger against biological mothers appeared to worsen feelings of isolation and adherence to medication. Our findings suggest that forums to enhance sharing of experiences and improve age-appropriate HIV knowledge are potentially important in caring for patients with PHIV.

Keywords:

• HIV
• adolescents
• youth
• perinatally acquired HIV
• anger
• stigma
• disclosure
• resilience
• quality of life

Public Interest Statement

Our study explores the experiences of adults between the ages of 19 and 30 who acquired HIV at birth, through what is termed mother-to-child transmission of HIV. These adults share powerful stories of their experiences learning about their HIV status when they were children, growing up with HIV, and transitioning from childhood to adolescence and then adulthood. Some of their experiences highlight what is already known about challenges faced by this population but this does not make their stories any less powerful or meaningful. These patients’ stories also provide some new insights on the challenges faced by patients who acquired HIV at birth.

Acknowledgments

We would like to thank all study participants, the Center for Interdisciplinary Research on AIDS (CIRA) and Amy Smoyer for help with qualitative research, Denise Wagner, APRN, and Anne Murphy, LCSW, for their help with recruiting participants, the Sections of Infectious Diseases in both Internal Medicine and Pediatrics Departments at Yale School of Medicine for funding and Dr George Miller and Dr Hochang Lee for their helpful discussions and support.

Additional information

Notes on contributors

R. Wang’ondu

R. Wang’ondu is a resident physician in the combined medicine and pediatrics residency program at Yale New Haven Hospital. She is interested in (1) chronic health conditions affecting children in the United States and in resource-limited areas, including Sub-Saharan Africa and (2) the clinical and psychosocial aspects affecting transition of patients with chronic health conditions from pediatric to adult health care systems.