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关爱照料者:照料者死亡率如何影响治疗结果——一项观察性队列研究

Care for the Caregiver: How Caregiver Mortality Affects Treatment Outcomes-An Observational Cohort Study.

作者信息

Keal Josephine, van Dongen Nicola, Ferreria Thalia, Sorour Gillian, Technau Karl-Günter

机构信息

Empilweni Services and Research Unit, Department of Paediatrics and Child Health, School of Clinical Medicine, Faculty of Health Sciences, Rahima Moosa Mother and Child Hospital, University of the Witwatersrand, Johannesburg, South Africa.

出版信息

AIDS Behav. 2025 May 20. doi: 10.1007/s10461-025-04760-5.

DOI:10.1007/s10461-025-04760-5
PMID:40392399
Abstract

Despite improvements in HIV management, children and adolescents living with HIV remain vulnerable. Caregiver mortality in a large paediatric and adolescent HIV clinic in Johannesburg is described and the effect of the death of a caregiver on children and adolescents' HIV treatment outcomes was investigated. We analysed retrospective longitudinal data and included children or adolescents attending the clinic between 01 January and 31 December 2021 divided into those with documented primary caregiver mortality and those without (ever documented). Viral load, treatment regimens, CD4, and anthropometry were analysed for 2021. Caregiver vital status was recorded in 1171 (93%) of the 1260 patients attending in 2021. In 115 children or adolescents (10%) we found a documented death of caregiver(s). Amongst 1120 mothers, 100 (9%) had died; of 460 fathers, 18 (4%) had died and one (1%) of 100 other caregivers had died. A large number (n = 54 [45%]) of the 119 deaths occurred between 2016 and 2021 and 66 (69%) after the child/adolescent's enrolment in the clinic. In 2021, stunting and wasting were more common in the participants with caregiver death than those without (χ2 = 4.98, 6.64, p = 0.01 and 0.03 respectively). No significant difference was seen between the groups for viral load, treatment regimens and CD4 counts. Caregiver death was incompletely captured in the clinic database, suggesting that clinicians were unaware of the death of a caregiver. Children experiencing the death of a caregiver were more likely to be malnourished. We propose increasing attention on the wellbeing of caregivers in paediatric HIV services.

摘要

尽管在艾滋病毒管理方面有所改善,但感染艾滋病毒的儿童和青少年仍然脆弱。本文描述了约翰内斯堡一家大型儿科和青少年艾滋病毒诊所中照顾者的死亡率,并调查了照顾者死亡对儿童和青少年艾滋病毒治疗结果的影响。我们分析了回顾性纵向数据,纳入了2021年1月1日至12月31日期间在该诊所就诊的儿童或青少年,分为有记录的主要照顾者死亡组和无记录的组(从未记录)。分析了2021年的病毒载量、治疗方案、CD4和人体测量数据。2021年就诊的1260名患者中,1171名(93%)记录了照顾者的生命状态。在115名儿童或青少年(10%)中,我们发现有照顾者死亡的记录。在1120名母亲中,100名(9%)死亡;在460名父亲中,18名(4%)死亡,在100名其他照顾者中有1名(1%)死亡。119例死亡中有很大一部分(n = 54 [45%])发生在2016年至2021年之间,66例(69%)发生在儿童/青少年登记到诊所之后。2021年,有照顾者死亡的参与者中发育迟缓及消瘦比无照顾者死亡的参与者更常见(χ2分别为4.98、6.64,p分别为0.01和0.03)。两组在病毒载量、治疗方案和CD4计数方面没有显著差异。诊所数据库中对照顾者死亡情况记录不完整,这表明临床医生未意识到照顾者的死亡。经历照顾者死亡的儿童更有可能营养不良。我们建议在儿科艾滋病毒服务中更加关注照顾者的健康状况。

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