Medical Social Work Intervention Research On Patients With Rare Diseases

Rare diseases are characterized by extremely low prevalence rate,high treatment cost and great difficulty in cure.According to statistics,by 2020,there are about 20 million patients with rare diseases in China.The disease changes the life path and family structure of patients with rare diseases,which makes them prone to various family problems,such as poor parent-child relationship.Unhealthy parent-child relationship is not only detrimental to the treatment and rehabilitation of patients with rare diseases,but also to the happiness and harmony of the families of patients with rare diseases.In this paper,in-depth interview and participatory observation were used to investigate the needs of patients with rare diseases in X Hospital of H province.It was found that patients with rare diseases had needs at micro,meso and macro levels,among which the need for harmonious parent-child relationship at meso level was particularly prominent.Therefore,in this paper,based on the perspective of social work,with the author in the H province X hospital survey data and the basis of practical experience,with a rare disease parent-child relationship adjustment for involvement in key,under the guidance of structural family therapy model,by utilizing the method of case work in rare patients and their families,aimed at helping rare disease improve parent-child interaction,make originally took a fresh turn rigid parent-child relationship problems,so as to improve the quality of life of rare diseases.First of all,according to the investigation results,Z and his family with rare disease were selected as the subjects of the case study.Develop a case service plan,implement the intervention,and finalize and evaluatethe case according to the basic procedures of the case work.Then,through the research,the following conclusions are drawn: medical social work has a significant effect on the parent-child relationship of patients with rare diseases,and the professional advantages of medical social work should be given full play.The structural family therapy model can effectively promote the positive interaction among family members,and has certain extensibility in the improvement of parent-child relationship for patients with rare diseases.Then,this paper reflects on the theoretical application,practical intervention process and individual social workers.Finally,four Suggestions are proposed for social work to intervene in the services for patients with rare diseases: strengthening professional talent training,emphasizing multi-party cooperation,ensuring the continuity of social work services,and strengthening policy advocacy for patients with rare diseases.