Dataset for: Risk factors for low knowledge and negative attitudes among caregivers of children with autism spectrum disorder in Iraq: a multi-centre cross-sectional study

Introduction: Children with autism spectrum disorder (ASD) can experience delayed diagnosis and ineffective treatment due to low caregiver knowledge. Negative attitudes have also been linked to increased emotional problems and poor adaptive outcomes. Before educational interventions can address these issues, local knowledge and attitudes must be assessed, including the identification of high-risk groups that require prioritisation.

Methods: Between February 17 and September 10, 2024, Al-Subtain Academy for Autism and Baghdad’s National Centre for Autism and Child Psychiatry conducted a cross-sectional study. Data was collected using a structured questionnaire developed based on the Autism Stigma and Knowledge Questionnaire (ASK-Q) and a review of previous studies. The questionnaire was pre-tested on 25 caregivers for clarity and reliability.

Results: 302 caregivers were included, all of whom were family members of the children. 57 caregivers (18.9%) had low knowledge of ASD, while only 24 (7.9%) had high knowledge. College-educated caregivers scored higher than those who were illiterate or with primary or secondary school education (p-values = 0.009, 0.002, and 0.007). Similarly, caregivers from low-income backgrounds had less knowledge than those from average and high-income backgrounds (p-value = 0.002 and 0.005). However, this difference was no longer apparent when controlling for the lack of tertiary education (B = 1.231, p-value = 0.119). 105 (34.8%) thought that a complete cure is possible, with higher rates among caregivers without tertiary education (43.0%, adjusted p-value = 0.048) or from low-income backgrounds (55.0%, adjusted p-value = 0.0002). In terms of attitudes, 44 (14.6%) believed that all children with ASD are aggressive, and 114 (37.7%) believed that they are deliberately negativistic and non-compliant. Being ashamed of the diagnosis was more common if the child had comorbid conditions. However, this difference was only significant before adjusting for multiple testing (adjusted p-value = 0.286).

Conclusion: Educational programmes should be implemented to enhance knowledge and address treatment expectations, especially among caregivers with low income and lower education. Efforts should be focused on reducing negative attitudes to improve overall outcomes.

引言：孤独症谱系障碍（Autism Spectrum Disorder, ASD）患儿常因照护者认知不足，面临诊断延迟与治疗无效的困境；而消极态度还与更严重的情绪问题及较差的适应结局密切相关。在通过教育干预解决上述问题前，需对当地照护者的认知水平与态度倾向进行评估，包括识别需要优先开展干预的高风险群体。

研究方法：2024年2月17日至9月10日，Al-Subtain孤独症学院与巴格达国家孤独症与儿童精神病学中心联合开展了一项横断面研究。本研究采用基于《孤独症污名与认知问卷》（Autism Stigma and Knowledge Questionnaire, ASK-Q）及既往研究综述开发的结构化问卷收集数据。该问卷预先对25名照护者进行预测试，以验证其内容清晰度与信度。

研究结果：本研究共纳入302名照护者，均为孤独症患儿的家庭成员。其中57名（18.9%）对ASD的认知水平较低，仅24名（7.9%）认知水平较高。大专及以上学历照护者的认知得分显著高于文盲、小学或初中学历照护者（p值分别为0.009、0.002与0.007）。同样，低收入家庭照护者的认知得分低于中等及高收入家庭照护者（p值分别为0.002与0.005）。但在控制未接受高等教育这一混杂变量后，该差异不再具有统计学意义（B=1.231，p=0.119）。105名（34.8%）照护者认为ASD可完全治愈，其中未接受高等教育的照护者（43.0%，校正后p值=0.048）及低收入家庭照护者（55.0%，校正后p值=0.0002）的该认知比例更高。在态度倾向方面，44名（14.6%）照护者认为所有孤独症患儿均具有攻击性，114名（37.7%）认为患儿会故意表现出消极抵抗与不服从行为。若患儿共患其他疾病，照护者因诊断结果感到羞耻的情况更为普遍，但该差异仅在未进行多重检验校正时显著，经校正后不再具有统计学意义（校正后p值=0.286）。

研究结论：应针对性开展教育项目，以提升照护者对ASD的认知水平并纠正其对治疗效果的不当预期，尤其需关注低收入与低学历照护群体。同时应着力减少消极态度，以改善孤独症患儿的整体康复结局。