Children's National Health System, Pharmacology and Therapeutics, Washington, DC, USA.
Children's National Health System, Special Immunology, Infectious Diseases, Washington, DC, USA.
J Clin Nurs. 2017 Dec;26(23-24):4734-4744. doi: 10.1111/jocn.13826. Epub 2017 Jun 18.
To describe the lived experience of young adults with perinatally acquired HIV (PaHIV).
With the advancement of the highly active antiretroviral treatment, PaHIV infection has transformed into a chronic lifelong illness that is faced by young adults who grew up with HIV. The known challenges that are associated with HIV are poverty, stigma and social and emotional isolation.
This was a qualitative single-interview study of a convenience sample of PaHIV-infected young adults receiving care at a large metropolitan pediatric hospital.
The participants had individual face-to-face interviews which were audio-taped and transcribed verbatim. Themes were developed to describe their living space, and Max Van Manen's lifeworld guide was used to describe their lived experience.
Seventeen participants (eight males/nine females) were enrolled. Four major themes emerged: (i) limited social capital, especially when orphaned participants reflected on a life void of parental guidance; (ii) incomplete education and unemployment, participants described an idle existence; (iii) a harsh life, described as participants facing difficulties meeting their life's milestones; (iv) unanticipated adult issues, where participants described their limited ability to care for themselves and their children. Van Manen lifeworld themes also described the space they occupied, their memories growing up with PaHIV, their health care and relationships.
Our study provides a valuable insight into the social and emotional difficulties faced by youth with PaHIV. The findings underscore the importance of extensive support and coordination of services between adult and pediatric providers to optimize long-term outcomes among young adults with PaHIV.
The young adults with PaHIV require close attention and support from the healthcare providers, who can offer them a safe space to discuss lived experiences and support their ability to achieve full lives.
描述感染围生期 HIV（PaHIV）的年轻成年人的生活体验。
随着高效抗逆转录病毒治疗的进步，PaHIV 感染已转变为一种慢性终身疾病，由在感染 HIV 环境中长大的年轻成年人所面临。已知与 HIV 相关的挑战包括贫困、污名化以及社会和情感隔离。
这是一项便利样本的、对在一家大型大都市儿科医院接受护理的 PaHIV 感染年轻成年人的定性单访谈研究。
参与者进行了个体面对面访谈，访谈内容被录音并逐字转录。主题的发展用于描述他们的生活空间，并且使用 Max Van Manen 的生活世界指南来描述他们的生活体验。
共纳入 17 名参与者（8 名男性/9 名女性）。出现了四个主要主题：（i）有限的社会资本，特别是当孤儿参与者反思没有父母指导的生活时；（ii）不完全的教育和失业，参与者描述了一种无所事事的存在；（iii）艰难的生活，描述为参与者在实现人生里程碑方面面临困难；（iv）意外的成年问题，参与者描述了他们照顾自己和孩子的有限能力。Van Manen 生活世界主题还描述了他们所占据的空间、他们在感染 PaHIV 期间的成长记忆、他们的医疗保健和关系。
我们的研究提供了对 PaHIV 青少年所面临的社会和情感困难的宝贵见解。研究结果强调了在成人和儿科提供者之间广泛支持和协调服务的重要性，以优化 PaHIV 年轻成年人的长期结果。
感染 PaHIV 的年轻成年人需要得到医疗保健提供者的密切关注和支持，他们可以为他们提供一个安全的空间来讨论生活体验，并支持他们实现充实生活的能力。
