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Published on: December 3, 2019
Growing up with perinatal human immunodeficiency virus-A life not expected
Elaine Fay Williams1, Kathleen Ferrer2,3, Marlene A Lee4
1Children's National Health System, Pharmacology and Therapeutics, Washington, DC, USA.
Young adults with perinatally acquired HIV (PaHIV) face significant challenges including limited social support, educational and employment difficulties, and struggles with adult responsibilities. Enhanced care coordination and support are crucial for their well-being.
Area of Science:
- Medical Social Sciences
- Public Health
- Qualitative Research
Background:
- Perinatally acquired HIV (PaHIV) is now a chronic condition for young adults due to advancements in antiretroviral therapy.
- Young adults with PaHIV experience significant challenges including poverty, stigma, and social isolation.
- Understanding the lived experiences of this population is crucial for developing effective support systems.
Purpose of the Study:
- To explore and describe the lived experiences of young adults with perinatally acquired HIV (PaHIV).
- To identify the social and emotional difficulties encountered by this demographic.
- To inform healthcare providers on how to better support young adults with PaHIV.
Main Methods:
- A qualitative study employing individual, face-to-face interviews.
- Convenience sample of 17 young adults with PaHIV receiving care at a metropolitan pediatric hospital.
- Verbatim transcription of interviews and thematic analysis using Max Van Manen's lifeworld guide.
Main Results:
- Four major themes emerged: limited social capital (especially for orphans), incomplete education and unemployment, facing a harsh life with unmet milestones, and unanticipated adult issues like self-care and childcare.
- Participants described their living spaces, memories of growing up with PaHIV, healthcare experiences, and relationships.
- The study highlighted the profound impact of HIV on the social and emotional development of young adults.
Conclusions:
- Young adults with PaHIV face multifaceted social and emotional difficulties.
- There is a critical need for comprehensive support and coordinated services between pediatric and adult healthcare providers.
- Healthcare providers should offer safe spaces for young adults with PaHIV to discuss experiences and facilitate their journey toward fulfilling lives.
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