PDF(Pubmed)
Abstract：
Evidence suggests that parenting an autistic child or a child with neurodevelopmental disabilities can be more challenging than parenting a child meeting their developmental milestones, especially when there is a dearth of support services, such as in low- and middle-income countries (LMICs). Despite the majority of the world\'s children residing in LMICs, there are limited studies examining the understanding of developmental disorders and autism in these regions. We therefore aim to investigate perceptions of autism and developmental disabilities in caregivers of children in an urban setting in New Delhi, India. Thirteen semi-structured interviews with parents/caregivers of children were conducted in three groups: (1) caregivers with a child with a diagnosis of autism spectrum disorder (ASD); (2) caregivers with a child with a diagnosis of intellectual disability (ID); (3) and caregivers with children meeting their developmental milestones. Transcripts were analysed using framework analysis. Three themes on the impact of cultural and contextual factors on the recognition, interpretation, and reporting of autistic symptoms are discussed, and additional themes focus on the impact of diagnosis and family support. Our findings highlighted a vital need for greater community awareness and recognition of autism in India, for example through community and healthcare training, which may help to reduce stigma and facilitate wider family support.
摘要：
有证据表明，养育自闭症儿童或神经发育障碍儿童可能比养育满足其发展里程碑的儿童更具挑战性，特别是当缺乏支持服务时，例如在低收入和中等收入国家（LMICs）。尽管世界上大多数儿童居住在低收入国家，有有限的研究来研究这些地区对发育障碍和自闭症的理解。因此，我们旨在调查新德里城市环境中儿童看护人对自闭症和发育障碍的看法，印度。在三组中对儿童的父母/照顾者进行了13次半结构化访谈：（1）与被诊断为自闭症谱系障碍（ASD）的儿童的照顾者；（2）与被诊断为智力障碍（ID）的儿童的照顾者；（3）与儿童达到其发展里程碑的照顾者。使用框架分析对成绩单进行分析。关于文化和背景因素对认识的影响的三个主题，解释,讨论了自闭症症状的报告，和其他主题集中在诊断和家庭支持的影响。我们的发现强调了提高社区对印度自闭症的认识和认识的迫切需要，例如通过社区和医疗保健培训，这可能有助于减少污名和促进更广泛的家庭支持。
