2020年3月COVID-19大流行的爆发和随后的封锁扰乱了印度各地家庭的生活。与封锁相关的限制带来了许多挑战,包括失业,社会孤立,学校关闭和财政负担。具体来说,这也导致神经发育障碍儿童的保健服务受到限制。
■这项定性研究是在印度进行的一项较大试验的一部分,目的是了解大流行期间自闭症幼儿家庭的经历。对居住在新德里的14名护理人员进行了深入访谈,印度。
■我们的研究结果确定了大流行和封锁对家庭生活和失业带来的财务稳定的普遍影响,业务关闭,和工资扣除,影响家庭生活质量。此外,即使在恢复服务后,COVID-19大流行对自闭症儿童的影响也很明显,因为获得基本服务的机会有限,以及与服务中断相关的财务挑战。封锁的新颖性也影响了孩子的行为,具有挑战性的行为变化和积极的影响。主要照顾者,主要是母亲,在家务中承担了额外的责任,学校教育,和治疗管理。虽然有些经历是普遍经历的,其中一些改善了自闭症儿童的结果。尽管面临挑战,父母在困难时期对家人的安全和幸福表示感谢。
这些发现为弱势家庭提供了服务,并为设计干预措施(例如家庭信贷计划)提供了启示,建立和维持自闭症儿童日常生活的指导和资源,采用灵活和适应性强的方法来提供服务,以及对自闭症儿童的特殊规定,使他们能够在家庭之外保持日常生活。此外,这项研究强调了全面支持的必要性,包括教育资源和压力管理咨询,以使父母能够在如此前所未有的时期为子女提供基本护理和日常工作。
The onset of the COVID-19 pandemic and subsequent lockdowns in March 2020 disrupted the lives of families across India. The lockdown related restrictions brought forth a multitude of challenges including loss of employment, social isolation, school closures and financial burdens. Specifically, it also resulted in the restriction of health-care services for children with neurodevelopmental disabilities.
This qualitative study was conducted as a part of a larger trial in India to understand the experiences of families of young children with autism during the pandemic. In-depth interviews were carried out with 14 caregivers residing in New Delhi, India.
Our findings identified pandemic and lockdown\'s universal impacts on family life and financial stability stemming from job loss, business closure, and salary deductions, affecting quality of life of families. Furthermore, COVID-19 pandemic\'s impact on autistic children was evident through limited access to essential services and financial challenges related service interruptions even after resumption of services. The lockdown\'s novelty also affected children\'s behavior, with both challenging behavioral changes and positive impacts. Primary caregivers, predominantly mothers, assumed additional responsibilities in household tasks, schooling, and therapy administration. While some these experiences were universally experienced, a few of these improved outcomes for autistic children. Despite challenges, parents expressed gratitude for their family\'s safety and well-being during the difficult time.
These findings inform service provision for vulnerable families and offer implications for designing interventions such as credit schemes for families, guidance and resources for establishing and maintaining routines of children with autism, adopting flexible and adaptable approaches to service delivery, and special provisions for children with autism to be able to maintain their routines outside of home. Furthermore, the study highlights the need for comprehensive support, including educational resources and stress management counselling to empower parents in supporting essential care and routines for their children during such unprecedented times.