Discipline of Physiotherapy, School of Health Sciences, University of KwaZulu-Natal, Durban.
S Afr Fam Pract (2004). 2020 Jun 25;62(1):e1-e5. doi: 10.4102/safp.v62i1.5110.
Caregiver burden influences the well-being of children living with human immunodeficiency virus (HIV) who may experience disabilities as a result of the virus, comorbidities and treatment. Overall health, psychological well-being, finances, social life and the relationship with the child being cared for influence the burden of care. This study aimed to investigate the burden of care on caregivers of children living with HIV who may be experiencing disabilities.
An analytical cross-sectional survey using the Zarit Burden questionnaire was conducted with caregivers of children living with HIV who were accessing care from a semi-rural healthcare setting between May and August 2019. A socio-demographic survey supplemented the Zarit Burden instrument. Descriptive statistics were used to determine burden of care and associations between the demographic profile variables of caregivers and the burden of care, with significance set as p 0.05.
Thirty-eight caregivers completed the survey. Although 44.7% reported no burden of care, 36.8% reported mild-to-moderate burden and 18.4% moderate-to-severe burden of caring for children living with HIV. The only significant association was between caregiver health status and burden of care (p = 0.034).
Although the burden of care in caregivers ranged between mild to severe and was directly associated with the caregiver's health status, the findings of this study highlight a need to assess caregiver burden in all caregivers of children living with HIV so that appropriate referral to professionals for counselling and support can be initiated. Because caregiver burden affects the care offered to children, professionals need to integrate their well-being into healthcare.
照顾者的负担会影响感染人类免疫缺陷病毒（HIV）的儿童的幸福感，这些儿童可能会因病毒、合并症和治疗而出现残疾。整体健康状况、心理健康、财务状况、社会生活以及与被照顾儿童的关系都会影响照顾负担。本研究旨在调查可能患有残疾的 HIV 感染儿童的照顾者的照顾负担。
2019 年 5 月至 8 月，采用 Zarit 负担问卷对从半农村医疗保健机构接受护理的感染 HIV 的儿童的照顾者进行了分析性横断面调查。社会人口统计学调查补充了 Zarit 负担工具。采用描述性统计来确定照顾负担，以及照顾者的人口统计学特征变量与照顾负担之间的关联，以 p 0.05 为显著水平。
38 名照顾者完成了调查。尽管 44.7%的人报告没有照顾负担，但 36.8%的人报告对照顾感染 HIV 的儿童有轻度至中度负担，18.4%的人报告有中度至重度负担。唯一有显著关联的是照顾者的健康状况和照顾负担（p = 0.034）。
尽管照顾者的照顾负担在轻度到重度之间，但与照顾者的健康状况直接相关，本研究的结果强调需要对所有感染 HIV 的儿童的照顾者进行照顾负担评估，以便可以向专业人员进行适当的咨询和支持。由于照顾者的负担会影响对儿童的照顾，专业人员需要将其幸福感纳入医疗保健中。
