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

GuoJing; Wang Xiaoxiao; Rui Haiying

doi:10.3969/j.issn.1674-4748.2017.15.001

Abstract：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 into 3 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.