"I cry alone because I'm so exhausted": Family caregivers' perspectives on mHealth support in paediatric HIV care in Indonesia.

IF 3.2 3区医学 Q2 INFECTIOUS DISEASES

HIV Medicine Pub Date : 2025-10-12 DOI:10.1111/hiv.70126

Syamikar Baridwan Syamsir, Agus Setiawan, Dhea Natashia, Nyimas Heny Purwati, Astuti, Rian Adi Pamungkas

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引用次数: 0

Abstract

Objectives: Family caregivers of children living with HIV (CLHIV) in Indonesia navigate complex emotional and caregiving responsibilities amid stigma, isolation and limited support. This study aimed to explore the lived experiences of family caregivers in caring for children with HIV and to understand their perspectives on the potential use of mobile health (mHealth) applications to support paediatric HIV care in Indonesia.

Methods: A qualitative descriptive study was conducted using semi-structured interviews with fifteen purposively selected family caregivers at a national infectious disease referral hospital in Jakarta. Data were collected between June and August 2025, and analysed using conventional content analysis to inductively identify key themes.

Results: Three overarching themes were identified: (1) The Silent Burden of Caregiving, encompassing stigma, fear of disclosure, emotional fatigue and uncertainty about the child's future, (2) Supportive and Enabling Conditions, reflecting the role of social and spiritual support alongside interest in mHealth applications and their desired features, and (3) Barriers to Digital Technology Use, highlighting concerns over privacy, confidentiality and limited digital literacy.

Conclusions: Caregiving for a child with HIV is emotionally taxing and often undertaken in silence. mHealth applications may offer meaningful support when designed to be user-informed, culturally relevant and integrated with broader psychosocial services. Contextualized digital solutions have the potential to enhance HIV care outcomes in low-resource settings.

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“我一个人哭，因为我太累了”：家庭照顾者对印度尼西亚儿科艾滋病毒护理中移动医疗支持的看法。

目的：印度尼西亚感染艾滋病毒（CLHIV）儿童的家庭照顾者在耻辱、孤立和有限的支持中处理复杂的情感和照顾责任。本研究旨在探讨家庭照顾者在照顾感染艾滋病毒的儿童方面的生活经验，并了解他们对潜在使用移动医疗（mHealth）应用程序支持印度尼西亚儿科艾滋病毒护理的看法。方法：采用半结构化访谈对雅加达一家国家传染病转诊医院的15名家庭护理人员进行定性描述性研究。数据收集于2025年6月至8月之间，并使用传统的内容分析来归纳确定关键主题。结果：确定了三个总体主题：(1)照顾的无声负担，包括耻辱，对披露的恐惧，情感疲劳和对孩子未来的不确定性；(2)支持和启用条件，反映了社会和精神支持的作用，以及对移动健康应用程序及其期望功能的兴趣；(3)数字技术使用的障碍，突出对隐私，保密性和有限数字素养的担忧。结论：照顾感染艾滋病毒的儿童在情感上很费力，而且往往是在沉默中进行的。如果移动医疗应用程序的设计与用户相关，与文化相关，并与更广泛的社会心理服务相结合，则可以提供有意义的支持。情境化的数字解决方案有可能在资源匮乏的环境中提高艾滋病毒护理结果。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

HIV Medicine 医学-传染病学

CiteScore

5.10

自引率

10.00%

发文量

167

审稿时长

6-12 weeks

期刊介绍： HIV Medicine aims to provide an alternative outlet for publication of international research papers in the field of HIV Medicine, embracing clinical, pharmocological, epidemiological, ethical, preclinical and in vitro studies. In addition, the journal will commission reviews and other feature articles. It will focus on evidence-based medicine as the mainstay of successful management of HIV and AIDS. The journal is specifically aimed at researchers and clinicians with responsibility for treating HIV seropositive patients.