Nasuuna Esther, Kigozi Joanita, Muwanguzi Patience A, Babirye Joyce, Kiwala Laura, Muganzi Alex, Sewankambo Nelson, Nakanjako Damalie
Infectious Diseases Institute, College of Health Sciences, Makerere University, P.O. Box 22418, Kampala, Uganda.
Department of Nursing, College of Health Sciences, Makerere University, P.O. Box 22418, Kampala, Uganda.
BMC Health Serv Res. 2019 Mar 7;19(1):150. doi: 10.1186/s12913-019-3963-y.
Of the estimated 130,000 children living with HIV in Uganda, 47% are receiving ART. Only 39.3% have suppressed HIV-1 viral load to levels below 50 copies per ml. Caregivers are key drivers of adherence to achieve viral suppression in children. We investigated the challenges and potential support required by caregivers of ART-treated children.
A qualitative study was conducted within the Infectious Diseases Institute paediatric ART program in Kampala and Hoima districts. Caregivers of children with viral loads above 1000 copies were purposively sampled and engaged in five focus group discussions (FGD). The FGD guide highlighted questions on challenges that caregivers face and the kind of support they required to improve children's ART adherence. Thematic analysis using the inductive approach was used. All the transcripts were read, coded and emergent themes determined.
Overall, 37 caregivers participated in five FGD, of whom 29 (78%) were female, 28 (76%) were HIV-infected and 25 (68%) were biological parents of the children. The elicited challenges were either in failure to attend the counselling sessions or in supporting adherence to medication. Individual and health system challenges such as competing priorities, logistics, poor quality of counselling and lack of reminders prevented attendance at counselling sessions. Five themes emerged as challenges to supporting adherence: i) environmental (school activities, working away from home), ii) personal (non-disclosure, stigma), iii) psychological (guilt), iv) financial (lack of food and transport) and v) child-related (fatigue and peer influence). Three major themes emerged for the support that caregivers needed namely: a) health system reforms (clinic appointments outside school hours, minimize ART drug stock outs and improve quality of counselling), b) psychosocial support (support with disclosure of HIV status to children and their families, more frequent peer support groups and parenting classes) and c) economic empowerment (training in vocational skills, school fees support and opportunities to initiate income generating activities).
To achieve viral suppression, ART programs require targeted efforts to provide specific health facility requirements, psychological and economic needs of ART-treated children and their caregivers. Integration of HIV treatment with programs for orphans and vulnerable children may improve viral suppression rates.
在乌干达估计13万名感染艾滋病毒的儿童中，47%正在接受抗逆转录病毒治疗（ART）。只有39.3%的儿童将艾滋病毒-1病毒载量抑制到每毫升低于50拷贝的水平。照顾者是实现儿童病毒抑制依从性的关键驱动因素。我们调查了接受ART治疗儿童的照顾者所面临的挑战以及所需的潜在支持。
在坎帕拉和霍伊马区的传染病研究所儿科ART项目中进行了一项定性研究。对病毒载量高于1000拷贝的儿童的照顾者进行了有目的抽样，并参与了五次焦点小组讨论（FGD）。FGD指南突出了关于照顾者面临的挑战以及他们为提高儿童ART依从性所需支持类型的问题。采用归纳法进行主题分析。阅读所有记录，进行编码并确定新出现的主题。
总体而言，37名照顾者参与了五次FGD，其中29名（78%）为女性，28名（76%）感染了艾滋病毒，25名（68%）是儿童的亲生父母。引发的挑战要么是未能参加咨询会议，要么是在支持药物依从性方面。个人和卫生系统方面的挑战，如相互竞争的优先事项、后勤、咨询质量差和缺乏提醒，导致未能参加咨询会议。出现了五个作为支持依从性挑战的主题：i）环境方面（学校活动、外出工作），ii）个人方面（不透露、耻辱感），iii）心理方面（内疚），iv）经济方面（缺乏食物和交通），v）与儿童相关方面（疲劳和同伴影响）。照顾者所需支持出现了三个主要主题，即：a）卫生系统改革（在非上课时间安排诊所预约、尽量减少ART药物缺货情况并提高咨询质量），b）心理社会支持（支持向儿童及其家庭透露艾滋病毒状况、更频繁的同伴支持小组和育儿课程），c）经济赋权（职业技能培训、学费支持以及开展创收活动的机会）。
为了实现病毒抑制，ART项目需要有针对性地努力，以满足接受ART治疗的儿童及其照顾者的特定卫生设施需求、心理和经济需求。将艾滋病毒治疗与孤儿和弱势儿童项目相结合可能会提高病毒抑制率。
