Syamikar Baridwan Syamsir, Agus Setiawan, Dhea Natashia, Nyimas Heny Purwati, Astuti, Rian Adi Pamungkas
{"title":"“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。","authors":"Syamikar Baridwan Syamsir, Agus Setiawan, Dhea Natashia, Nyimas Heny Purwati, Astuti, Rian Adi Pamungkas","doi":"10.1111/hiv.70126","DOIUrl":null,"url":null,"abstract":"<p><strong>Objectives: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":13176,"journal":{"name":"HIV Medicine","volume":" ","pages":""},"PeriodicalIF":3.2000,"publicationDate":"2025-10-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"\\\"I cry alone because I'm so exhausted\\\": Family caregivers' perspectives on mHealth support in paediatric HIV care in Indonesia.\",\"authors\":\"Syamikar Baridwan Syamsir, Agus Setiawan, Dhea Natashia, Nyimas Heny Purwati, Astuti, Rian Adi Pamungkas\",\"doi\":\"10.1111/hiv.70126\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Objectives: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>\",\"PeriodicalId\":13176,\"journal\":{\"name\":\"HIV Medicine\",\"volume\":\" \",\"pages\":\"\"},\"PeriodicalIF\":3.2000,\"publicationDate\":\"2025-10-12\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"HIV Medicine\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1111/hiv.70126\",\"RegionNum\":3,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"INFECTIOUS DISEASES\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"HIV Medicine","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1111/hiv.70126","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"INFECTIOUS DISEASES","Score":null,"Total":0}
"I cry alone because I'm so exhausted": Family caregivers' perspectives on mHealth support in paediatric HIV care in Indonesia.
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.
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.