新疆维吾尔自治区48例血友病患儿家庭治疗护理现状调查

Survey and analysis of family treatment and nursing status of 48 children with hemophilia in Xinjiang

[目的]了解新疆维吾尔自治区居家血友病患儿的家庭治疗及护理现状,构建新型家庭治疗护理模式。[方法]通过回顾性调查,借助专家咨询法自行设计问卷,对新疆血友病诊疗中心登记在册的48名血友病患儿及其父母发放该问卷,问卷分为3部分,一般资料、家庭治疗的情况及血友病病人自理能力评分量表(Functional Independence Score in Hemophilia,FISH)评分。[结果]只有18.75%的血友病患儿开展凝血因子家庭注射,且伴有凝血因子的使用量明显不足等情况;由于经济及认知水平的原因,家庭治疗效果及家庭护理状况并不理想。[结论]应进一步加强专职护士培训,根据个体状况开展个性化综合关怀模式,才能有效提升家庭护理水平,提高患儿生活质量。

Objective:To know about the status quo of family treatment and nursing of children with hemophilia in Xinjiang area,and to probe into a new nursing model for family therapy.Methods:By retrospective investigation and with the help of expert consultation to building questionnaire,48 hemophilia patients registered in Xinjiang hemophilia treatment center and their parents issued the questionnaire.The questionnaire was divided into3 parts,and the patients general information,family therapy,self-care ability score scale(Functional Independence Score in Hemophilia,FISH)scored.Results:Only 18.75% of children with hemophilia factor family carried out injection,and the dosage of coagulation factors was obvious insufficiency;due to economic reasons and cognitive level,family therapy and family nursing situation were not ideal.Conclusions:Compared with other hemophilia clinics in China,there was still a certain gap between the hemophilia patients in Xinjiang and lack of effective social support.The reasons mainly included ethnic minorities in Xinjiang,the low level of education,communication difficulties and nursing staff lack of experience.Further strengthening the training of full-time nurses and carrying out individualized comprehensive care model according to individual conditions could effectively improve the level of family care and improve the quality of life of children.