Parents' perspectives on care of children with autistic spectrum disorder in South Asia - Views from Pakistan and India
Parents' perspectives on care of children with autistic spectrum disorder in South Asia - Views from Pakistan and India
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DOI：
10.3109/09540261.2015.1049128
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发表时间：
2015-06-01
影响因子：
2.8
通讯作者：
Rahman, Atif
中科院分区：
文献类型：
--
作者：
Minhas, Ayesha;Vajaratkar, Vivek;Rahman, Atif
自闭症谱系障碍（ASD）影响了南亚约1.4%的人口，但很少有人能够获得任何形式的医疗保健服务。本研究的目的是探讨与自闭症儿童护理相关的信念和实践，以提供干预策略。在巴基斯坦，主要数据是通过对父母（N= 15）的深入访谈收集的，而在印度，对现有研究进行了叙述性审查。结果表明，照顾孩子的负担几乎完全由母亲承担，导致压力很大。家庭成员和一线保健提供者对病情认识不足，导致延误识别和适当管理。自闭症儿童及其家庭受到相当大的耻辱和歧视。专家服务很少，集中在城市地区，大多数人无法获得。干预战略应包括建立社区和家庭支持网络，为主要照顾者提供喘息机会。在没有专家的情况下，可以培训社区成员，如社区保健工作者、传统从业人员，甚至是有积极性的家庭成员，以认识和提供循证干预措施。这种任务转移战略应辅之以提高认识的运动，以实现更大的包容性。
Autism spectrum disorder (ASD) affects about 1.4% of the population in South Asia but very few have access to any form of health care service. The objective of this study was to explore the beliefs and practices related to the care of children with ASD to inform strategies for intervention. In Pakistan, primary data were collected through in-depth interviews of parents (N= 15), while in India a narrative review of existing studies was conducted. The results show that the burden of care is almost entirely on the mother, leading to high levels of stress. Poor awareness of the condition in both family members and front-line health-providers leads to delay in recognition and appropriate management. There is considerable stigma and discrimination affecting children with autism and their families. Specialist services are rare, concentrated in urban areas, and inaccessible to the majority. Strategies for intervention should include building community and family support networks to provide respite to the main carer. In the absence of specialists, community members such as community health workers, traditional practitioners and even motivated family members could be trained in recognizing and providing evidence-based interventions. Such task-shifting strategies should be accompanied by campaigns to raise awareness so greater inclusivity can be achieved.