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美国领养的感染艾滋病毒儿童的父母对医疗保健过渡的看法:一项定性研究。

Perspectives on health care transition among U.S. parents of internationally adopted children living with HIV: A qualitative study.

作者信息

Glover Faith, Olivero Rosemary, Fair Cynthia

机构信息

Elon University, Elon, NC, USA.

Department of Pediatric Infectious Disease at Helen Devos Children's Hospital of Spectrum Health, Grand Rapids, MI, USA.

出版信息

Health Care Transit. 2023 Jul 14;1:100010. doi: 10.1016/j.hctj.2023.100010. eCollection 2023.

Abstract

OBJECTIVE

To analyze perspectives on health care transitions among parents who have internationally adopted children living with HIV (IACH)The transition of youth with living with HIV from pediatric to adult care is associated with adverse health outcomes, including poor medication adherence and appointment attendance. However, little is known about the experiences of IACH.

METHODS

This qualitative project explores the perspectives of 17 parents of 24 IACH in the United States through hour-long semi-structured phone interviews focused on healthcare transition. The purposive sample was recruited from two pediatric infectious disease clinics and private social media sites. Drawing on analytic principles of constant comparison, transcripts were analyzed for emergent themes.

RESULTS

Most parents identified as white ( = 16), female ( = 16). Median age of IACH was 16 years. Two had transitioned to adult care. Fourteen did not have a transition plan with their provider. Many parents expressed apprehension regarding the transition to adult care. Anxiety over the ability to communicate with their child's health provider and lack of comprehensive planning were expressed. Parents also felt their child may feel out of place in the adult infectious disease clinic and emphasized the trusting, long standing relationship with pediatric providers. Participants acknowledged that transition to another provider could be challenging for their child as adult providers may be less aware of adoption-related trauma.

CONCLUSION

It is vital that physicians consider trauma-informed care throughout the transition process with IACH. Providers should support health management-related independence of both IACH and their parents prior to transition. Coordination with adult care providers is key to a successful health care transition.

摘要

目的

分析领养感染艾滋病毒儿童(IACH)的父母对医疗保健过渡的看法。感染艾滋病毒的青少年从儿科护理过渡到成人护理与不良健康结果相关,包括药物依从性差和预约就诊率低。然而,对于领养感染艾滋病毒儿童的经历知之甚少。

方法

本定性项目通过长达一小时的半结构化电话访谈,探讨了美国24名领养感染艾滋病毒儿童的17位父母对医疗保健过渡的看法,访谈重点是医疗保健过渡。目的样本是从两家儿科传染病诊所和私人社交媒体网站招募的。根据持续比较的分析原则,对访谈记录进行分析以找出新出现的主题。

结果

大多数父母为白人(n = 16)、女性(n = 16)。领养感染艾滋病毒儿童的中位年龄为16岁。其中两人已过渡到成人护理。14人没有与他们的医疗服务提供者制定过渡计划。许多父母对过渡到成人护理表示担忧。他们表达了对与孩子的医疗服务提供者沟通能力的焦虑以及缺乏全面规划的问题。父母们还觉得他们的孩子在成人传染病诊所可能会感到格格不入,并强调了与儿科医疗服务提供者之间信任且长期的关系。参与者承认,对他们的孩子来说,转由另一位医疗服务提供者治疗可能具有挑战性,因为成人医疗服务提供者可能对与领养相关的创伤了解较少。

结论

医生在领养感染艾滋病毒儿童的整个过渡过程中考虑创伤知情护理至关重要。医疗服务提供者应在过渡前支持领养感染艾滋病毒儿童及其父母在健康管理方面实现独立。与成人护理提供者的协调是成功进行医疗保健过渡的关键。

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