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