印度北方邦勒克瑙市前往医疗机构就诊的自闭症儿童及青少年照顾者的生活质量：一项横断面研究
Quality of Life of Caregivers of Autistic Children and Adolescents Visiting Health Facilities in Lucknow City, Uttar Pradesh, India: A Cross-sectional Study.
作者信息
Jain Aparna, Ahmed Naim, Mahour Pooja, Agarwal Vivek, Shrivastav Nitesh Kumar
机构信息
Department of Community Medicine and Public Health, King George's Medical University, Lucknow, Uttar Pradesh, India.
Department of Psychiatry, King George's Medical University, Lucknow, Uttar Pradesh, India.
出版信息
Indian J Community Med. 2019 Apr-Jun;44(2):157-161. doi: 10.4103/ijcm.IJCM_221_18.
BACKGROUND
The lifelong responsibility of the autistic children along with the lack of knowledge, lack of treatment, and if treatment is available, it is unaffordable leads to deterioration of quality of life of the parents in several domains.
OBJECTIVES
The objective is to study the quality of life of principal caregivers of autistic children and adolescents visiting health facilities in Lucknow city.
MATERIALS AND METHODS
The sample included 90 principal caregivers (aged < 60 years) of autistic children and adolescents aged 3-19 years and diagnosed with autism, attending government and private health facilities providing treatment for autism in Lucknow, Uttar Pradesh, India.
RESULTS
The quality of life of principal caregivers was found to be influenced most in the physical health domain (with least score). The predictors of quality of life of principal caregivers were type of family and knowledge regarding child's problem.
CONCLUSION AND RECOMMENDATIONS
Thus, there is an immense need of increasing awareness through information, education, and communication materials, mass media, and discussions regarding autism.
背景
自闭症儿童的终身照料责任，以及知识匮乏、缺乏治疗，即便有治疗手段也负担不起，这些情况导致父母在多个领域的生活质量下降。
目的
本研究旨在了解勒克瑙市前往医疗机构就诊的自闭症儿童及青少年主要照料者的生活质量。
材料与方法
样本包括90名主要照料者（年龄小于60岁），他们照料的是年龄在3至19岁、被诊断为自闭症的儿童及青少年，这些照料者前往印度北方邦勒克瑙市提供自闭症治疗服务的政府及私立医疗机构就诊。
结果
研究发现，主要照料者的生活质量在身体健康领域受影响最大（得分最低）。主要照料者生活质量的预测因素是家庭类型以及对孩子问题的了解程度。
结论与建议
因此，迫切需要通过信息、教育和宣传材料、大众媒体以及关于自闭症的讨论来提高公众意识。
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