我国唐氏综合征疾病负担定性分析

Qualitative Analysis of Disease Burden of Down's Syndrome in China

目的:通过定性研究方法,客观、全面地评价唐氏综合征患者和家庭的疾病负担,为相关政策制定提供依据。方法:采用卫生服务入户调查的方法,通过半结构化访谈收集定性资料,运用扎根理论进行分析。结果:唐氏综合征给患者和家庭带来了沉重的疾病负担,使家庭陷入心理和经济的双重困境。结论:建议建立健全社会支持网络,营造关爱、支持和帮助智残人群的良好社会氛围。

Objective： To evaluate the disease burden of Down＇s Syndrome （DS） both to the patient and to the family by qualitative study, and to provide references for policy making. Method： Semi-structured interviews were conducted to collect qualitative data via the household health service survey, and data were analyzed by grounded theory. Results： DS brings about dramatic disease burdens to patients and their families, and makes those families suffering psychological and economic problems. Conclusion： This paper suggests that it is essential to build social support network, and foster the favorable environment of caring, supporting and helping mental retarded persons.