Background Autism spectrum disorder (ASD) is a neurodevelopmental disorder with deficits in social communication and interaction, restricted and repetitive patterns of behaviour, interests and activities. Autism spectrum disorder is associated with multiple comorbidities. As a result, caregivers of children with ASD experience increased levels of burden and poor quality of life. However, there is a paucity of information on the burden. Aim The study aimed to describe the sociodemographic profiles and determine the extent of the burden experienced by caregivers of children and adolescents with ASD. Setting The Child, Adolescent and Family Unit (CAFU) outpatient services at Charlotte Maxeke Johannesburg Academic Hospital (CMJAH). Methods A quantitative, descriptive, cross-sectional study was done. Two self-administered questionnaires were used: a sociodemographic questionnaire and the 12-item Zarit Burden Interview questionnaire. Results The questionnaires were completed by 77 caregivers, of which the majority were female (n = 56 or 72.3%), mothers to children with ASD (n = 49 or 64.3%) and identified as Christian (p < 0.001). Most had completed secondary school or had a tertiary education (p = 0.003) and were employed (p < 0.001). Among the caregivers, 41.6% experienced mild to moderate burden, 33.8% experienced high burden and only 24.9% reported no to mild burden. Conclusion Caregivers of children and adolescents with a diagnosis of ASD are mostly mothers and experience mild to moderate levels of caregiver burden, suggesting the need for improved screening and psychosocial support programmes. Contribution This study highlights the burden experienced by primary caregivers of children with ASD and is one of the few comprehensive studies on this issue within the context of South Africa.

中文翻译：

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自闭症谱系障碍儿童的照顾者的照顾者负担。

背景 自闭症谱系障碍 (ASD) 是一种神经发育障碍，表现为社交沟通和互动缺陷、行为、兴趣和活动模式受限和重复。自闭症谱系障碍与多种合并症有关。结果，患有自闭症谱系障碍（ASD）儿童的照顾者的负担增加，生活质量下降。然而，关于负担的信息很少。目的 该研究旨在描述自闭症谱系障碍儿童和青少年的社会人口统计特征，并确定其照顾者所承受的负担程度。在夏洛特马克塞克约翰内斯堡学术医院 (CMJAH) 设置儿童、青少年和家庭科 (CAFU) 门诊服务。方法 进行了定量、描述性、横断面研究。使用了两份自填式调查问卷：社会人口统计调查问卷和 12 项 Zarit Burden 访谈调查问卷。结果 77 名护理人员完成了问卷调查，其中大多数是女性（n = 56 或 72.3%）、患有自闭症谱系障碍（ASD）儿童的母亲（n = 49 或 64.3%）并被认定为基督徒（p < 0.001）。大多数人已完成中学学业或接受过高等教育（p = 0.003）并已就业（p < 0.001）。在护理人员中，41.6%的人有轻度至中度负担，33.8%的人有重度负担，只有24.9%的人表示没有至轻度负担。结论 诊断患有自闭症谱系障碍的儿童和青少年的照顾者大多是母亲，承受着轻度至中度的照顾者负担，这表明需要改进筛查和社会心理支持计划。贡献 这项研究强调了自闭症谱系障碍儿童的主要照顾者所承受的负担，是南非背景下针对这一问题的少数综合研究之一。