Social Work Intervention In Rare Disease Groups

This study uses the social ecosystem theory as the framework,using depth interviews and participatory observation methods to collect data.The present situation of the survival of the group of osteogenesis imperfecta is expounded with rare diseases,family members of rare diseases,service organizations of rare diseases,and the professional employees of social work in Colleges and universities.It has been found that the group of patients with osteogenesis imperfection faces the lack of medicine,less medicine,less treatment,and poor health in the medical level.It is faced with the abandonment in the educational level,the social exclusion in the employment level and the heavy burden on the family.The main causes of the rare disease are the lack of social security system,the challenge of the rare disease itself,the lack of social participation in the rare disease group and the existence of social exclusion.From the micro level,the meso level and the macro level,this paper analyzes the causes of the survival status of the group with osteogenesis imperfecta,and analyses the demand for the intervention by the rare disease group,and points out that the social work service of the rare disease group should be more focused on the social work service in the meso system and the macro system.The service status of the group with osteogenesis imperfecta was presented as an example of the service status of social work involved in the rare disease group.The process and evaluation of social work services in the C center,the social work service of the osteogenesis imperfecta group,the social work service of the incomplete group of osteogenesis,and the evaluation of the social work service of the rare disease groups were presented.These demonstrate the process and service content of social work services for rare disease groups.Finally,the article summarizes the research from the perspective of self reflection,points out the deficiencies and shortcomings of the research,and expounds the contribution of the research.