罕见病患者家属心理健康改善方法调研及创新——以成骨不全症患者家庭为例

Investigation and Innovation of Mental Health Improvement Methods for Families of Patients with Rare Diseases—Taking Families of Patients with Osteogenesis Imperfecta as an Example

摘要: 本文列举了目前国内外对于罕见病家庭的临床和社会保障政策的研究和政策，梳理罕见病患者家属在照护过程中面临的主要压力源。本文还根据研究者对于以成骨不全症患者家庭为例，进行罕见病患者家属心理健康改善的案例进行了分析，并在此基础上提出创新方案。研究发现，部分罕见病患者家庭存在社会支持不足、医疗知识匮乏、无障碍设施安装问题，家属自身健康状况问题、情绪不稳定、社会交往障碍。由此可见患者家属承受着生理、心理和社会不同层面的压力，这容易导致家属产生不同程度的心理疾病。本文希望通过呈现罕见病患者家属主要问题及改善方法案例研究，为社会工作介入罕见病患者家庭提供可行性建议与创新视角。

Abstract: This paper reviews current research and policies on clinical practices and social security for rare disease families in China and abroad. It outlines the major sources of stress faced by family caregivers of patients with rare diseases. This paper lists the current Based on a comparative review of domestic and international support policies and clinical care practices for families with rare diseases, and analyzes the strengths and weaknesses of domestic care for families of patients with rare diseases. This paper also analyzes the cases of mental health improvement of families of patients with rare diseases by taking families of patients with osteogenesis imperfecta as an example, and proposes innovative programs on this basis. The study found that some families of patients with rare diseases have insufficient social support, lack of medical knowledge, problems in the installation of barrier-free facilities, problems in their own health status, emotional instability, and obstacles in social communication. It can be seen that the families of patients are under pressure at different levels of physiology, psychology and society, which is easy to lead to different degrees of mental illness in the families. By presenting the main problems of families of patients with rare diseases and the case study of improvement methods, this research aims to inform future social work practices and policy making services in rare disease groups.