Practical Exploration Of Social Work Intervention In The Whole Course Management Of Rare Diseases

Compared with other vulnerable groups,the rare disease group is more vulnerable and easily ignored by the public due to its "rarity".In fact,rare diseases are not "rare".In view of the large population base in China,the number of rare disease groups cannot be underestimated.The rare disease group involves not only a medical problem,but also a profound social problem.The whole course management provides a way to solve the medical and social problems of rare disease groups,which also points out the direction for social work of rare disease groups.The whole course of disease management is a model that emphasizes multi-professional team cooperation.It divides the treatment of rare disease groups into the whole course of disease management process of pre-hospital management,in-hospital diagnosis,continuous treatment,and post-hospital rehabilitation tracking.Social work can play its professional advantages at all stages.This study followed the action research methodology,and explored the practical path and effect of social work in the whole course management of rare disease patient according to the task centered model.According to the relevant inclusion criteria of the research object,a newly diagnosed child with Fabre’s rare disease in X Hospital of T City was taken as the research object to understand the problems in the whole course of disease management in a multi-dimensional way,so as to determine the professional practice content of social work;Based on the professional characteristics of social workers,a multi-disciplinary cross professional cooperation team was formed in the process of specific practice exploration.Social workers mainly played the role of case manager,companion supporter,facilitator,resource linker and advocate,and provided social work professional services throughout the whole course of the disease for children with Fabre’s rare disease in the process of practice.The research results show that the problems of the whole course management of rare diseases are diverse and complex,among which the problem of "insufficient resources" is the core problem in the whole course management of rare diseases,including the shortage of information resources,material resources,informal emotional resources,etc.Accordingly,the practical content of social workers’ intervention in the whole course management of rare diseases is also relatively rich.The whole course management of rare diseases is a process that requires the collaborative involvement of multi professional cooperation teams.Under the premise of multi professional team cooperation,social workers,in the role of case manager,companion supporter,facilitator,resource linker and advocate,based on the specificity of diagnosis,treatment,rehabilitation,psychosocial support and other aspects of the rare disease,conduct case intervention with a single child of Fabry as the center to create an operable,replicable Targeted and promotable social workers’ overall course service mode that runs through pre hospital management,in hospital diagnosis,continuous treatment and post hospital rehabilitation of children with Fabre’s rare disease.So as to provide it with an effective service of process,personalization,whole process and extension of all-around management of rare diseases.