Amanda Bingaman

Following the 2010 repeal of the ban regarding immigration of HIV-positive individuals to the United States, an increasing number of families sought to adopt children with perinatally-acquired HIV (PHIV) from other countries. However, little is known about the experiences of these families. The purpose of this longitudinal study is to explore how parents construct the adoption narrative for their child, how they approach disclosure of HIV to their child and the community, and determine if the adoption narrative and disclosure practices change over time. A purposive snowball sample of 24 parents of 27 internationally adopted children with PHIV (IACP) were recruited from two pediatric infectious disease clinics. Parents participated in two semi-structured, audio-recorded interviews, approximately one year apart. The first interview elicited adoption narratives parents shared with their children and their disclosure decisions. The follow-up interview focused on the parents’ and children’s experiences in their families and communities. Interviews were transcribed, coded, and analyzed using principles of constant comparison. All parents identified as white and 22 as Christian. Mean age of the children at enrollment was 9.2 years (range 2-19, 15 females). Both the adoption narrative and disclosure of HIV to the child were dynamic. Factors influencing parental decisions to share or withhold information included the child’s age, maturity level, and cognitive ability, child questioning, and nature of the adoption story. Disclosure of HIV to the child typically began with a discussion about medication and how viruses work in the body before the term “HIV” was introduced. Parents emphasized that medically, “HIV is easy” but “socially difficult”, stating disclosure as one of their most significant challenges. Most families did not openly disclose their child’s status to the community, citing lack of HIV education, stigma, and desire to protect their child as reasons to avoid disclosure. Parents prepared their child for HIV stigma by fostering self-confidence and ownership of their story, normalizing HIV, educating others, and creating a support system. This research emphasizes the role that adoption and disclosure narratives play in the development of IACP as they learn to manage their illness. It underscores the need for support of adoptive families and may help providers develop individualized comprehensive care as this emerging population matures into adolescence.