Hannah Allen '15 and Cindy Fair co-authored research that looked at perceptions about parenting from young parents with perinatally acquired HIV. The research was presented at the International AIDS Conference in Durban, South Africa, in July.
Allen, who majored in publich health studies, was among the more than 18,000 who gathered in Durban for the conference this July to look at efforts to treat and prevent HIV, and was part of a panel of international researchers who shared their work during a session titled, “Sex Through the Ages.”
As a member of the first cohort to participate in the Elon-Alamance Health Partners Program, Allen has spent the past year working with Cone Health’s Alamance Regional Medical Center and will enter the University of Tennessee College of Medicine in Knoxville this fall.
Allen’s work presented at the conference in South Africa, titled “I always wanted a big family because I lost mine: A qualitative analysis of parenting perspectives among young parents with perinatally acquired HIV,” was conducted through the Elon College Fellows program. Her research was co-authored by Cindy Fair, coordinator of public health studies and professor of human service studies, along with colleagues Larry D’Angelo, P ’02 and founder of the D’Angelo Family Scholarship, and Connie Trexler from Children’s National Medical Center in Washington, D.C., where Allen collected some of her data.
Those participating in the study expressed many of the same rewards and challenges that parents experience such as the joy of their child’s smile and financial concerns. Unique themes associated with HIV infection included a concern about not “being there” for their child due to sickness and worries that their child may experience HIV-related discrimination.
Among those parents who intended to have another child, many were motivated by a strong desire to create a family of their own as a way to deal with HIV-related losses and stigma. Finally, participants noted the positive role played by pediatric and adolescent medical providers, even if they had transitioned to adult care. Participants reported the importance of emotional support offered by providers as well as concrete social services available in that care setting.
The authors concluded that adolescents and young adults with PHIV who have children experience many of the same issues as other young parents. However, they also have HIV-specific experiences that influence their parenting such as illness, discrimination and childhood parental loss that may intensify their fertility desires. The positive impact that medical providers have throughout the childhood of a youth with PHIV must be recognized and capitalized upon.
A related paper titled, “When should I tell?: Perspectives on disclosure to their children among parents with perinatally-acquired HIV,” was published in Frontiers in Public Health. This exploratory study solely focused on five parents with PHIV who discussed when they would disclose their HIV status to their offspring.
Three parents indicated they would disclose their HIV status when their child was “old enough to understand” so that their child would be knowledgeable about HIV. One father also noted that he currently had more pressing parenting responsibilities beyond disclosing to his children that he had HIV.
When discussing their perspectives on disclosure, many referenced their personal stories indicating a link between their decision regarding disclosure and their own disclosure narrative. One mother cited she did not plan to reveal her diagnosis to her son because he was uninfected while another mother explained she did not want to worry her child. The mother of the only infected child “did not want to wait like my mother did” and planned to tell her son at an earlier age than when she learned of her own diagnosis.
This is believed to be the first published report, albeit exploratory in nature, on disclosure to children exclusively from the perspective of parents living with PHIV.