Mujjuzi Ibrahim, Mutegeki Paul, Nabuwufu Sarah, Wosukira Ashim, Namata Fazirah, Alayo Patience, Amanya Sharon Bright, Nyeko Richard
Lira University, P.O. Box 1035, Lira, Uganda.
Department of Microbiology and Immunology, Lira University, P.O. Box 1035, Lira, Uganda.
AIDS Res Treat. 2021 Sep 13;2021:6660337. doi: 10.1155/2021/6660337. eCollection 2021.
Family caregivers provide the bulk of care to children living with HIV. This places an enormous demand and care burden on the caregivers who often struggle to cope in various ways, some of which may be maladaptive. This may adversely affect their quality of care. Very little literature exists in resource-limited contexts on the burden of care experienced by caregivers on whom children living with HIV/AIDS depend for their long-term care. We assessed care burden and coping strategies among the caregivers of paediatric HIV/AIDS patients in Lira district, northern Uganda.
A mixed-method cross-sectional study was conducted among 113 caregivers of paediatric HIV patients attending the ART clinic at a tertiary healthcare facility in Lira district, northern Uganda. A consecutive sampling method was used to select participants for the quantitative study, while 15 respondents were purposively sampled for the qualitative data. Quantitative data were collected using standard interviewer-administered questionnaires, while in-depth interview guides were used to collect qualitative data. Data were entered, cleaned, and analysed using SPSS version 23. Qualitative data were analysed thematically.
The majority of the caregivers, 65.5% (74), experienced mild-to-moderate burden. The mean burden scores significantly differed by caregivers' age (=0.017), marital status (=0.017), average monthly income (=0.035), and child's school attendance (=0.039). Accepting social support, seeking spiritual support, and reframing were the three most commonly used strategies for coping. Marital status and occupation were, respectively, positively and negatively correlated with information-seeking as a coping strategy, while monthly income was positively correlated with psychosocial support as a strategy. Seeking community support was negatively correlated with the duration of the child's care.
Our findings show that care burden is a common problem among the caregivers of children living with HIV in the study context.
家庭照顾者为感染艾滋病毒的儿童提供了大部分护理。这给照顾者带来了巨大的需求和护理负担，他们常常难以通过各种方式应对，其中一些方式可能是适应不良的。这可能会对他们的护理质量产生不利影响。在资源有限的环境中，关于感染艾滋病毒/艾滋病儿童长期护理所依赖的照顾者所经历的护理负担的文献非常少。我们评估了乌干达北部利拉区儿科艾滋病毒/艾滋病患者照顾者的护理负担和应对策略。
在乌干达北部利拉区一家三级医疗机构的抗逆转录病毒治疗诊所，对113名儿科艾滋病毒患者的照顾者进行了一项混合方法的横断面研究。采用连续抽样方法选择定量研究的参与者，同时有目的地抽取15名受访者获取定性数据。定量数据通过标准的访谈员管理问卷收集，而定性数据则使用深入访谈指南收集。使用SPSS 23版对数据进行录入、清理和分析。定性数据进行主题分析。
大多数照顾者（65.5%，即74人）经历了轻度至中度负担。照顾者的年龄（=0.017）、婚姻状况（=0.017）、平均月收入（=0.035）和孩子的上学情况（=0.039），其平均负担得分存在显著差异。接受社会支持、寻求精神支持和重新构建认知框架是最常用的三种应对策略。婚姻状况和职业分别与作为应对策略的信息寻求呈正相关和负相关，而月收入与作为一种策略的心理社会支持呈正相关。寻求社区支持与孩子的护理时长呈负相关。
我们的研究结果表明，在本研究背景下，护理负担是感染艾滋病毒儿童照顾者中的一个常见问题。
