摘要
目的分析罕见病患者托养服务现状并提出改进建议,以完善罕见病群体托养服务体系,提高罕见病患者及其家庭的生活质量,促进社会对罕见病的关注和支持。方法运用文献研究法进行相关的政策梳理和文献分析,评估罕见病患者托养服务的需求,分析我国现有的相关政策制度、机构设置、服务模式现状及存在的问题,并探讨其对托养服务质量和可及性的影响。结果罕见病患者的康复护理在医疗服务系统仍处于空白,家庭照料无法满足患者及其家庭的照料需求,亟需专业的托养服务。但我国托养服务政策对于罕见病存在一定的局限性,且现有的托养服务数量和质量无法满足日益增长的托养需求。结论推进罕见病患者托养服务体系建设,提高罕见病托养服务的质量和可及性,需要政府及社会各界的支持,完善罕见病患者托养服务的政策保障,丰富资金获得渠道,充实专业服务人员队伍,同时积极促进社会参与和创新合作。
Objective To analyze the current situation of care services for rare diseases and put forward suggestions for improvement,in order to propose group care services system for rare diseases,improve the quality of life of rare diseases and their families,and promote social attention and support for rare diseases.Methods The literature research method was used to analyze relevant policies and literature analysis,evaluate the needs of care services for patients with rare diseases,analyze the existing relevant policies,systems,institutions,service mode and existing problems in China,and explore their impact on the quality and accessibility of care services.Results The rehabilitation care for patients with rare diseases is still blank in the medical service system.Family care cannot meet the care needs of patients and their families,and professional care services are in urgent need.However,care service policy in China has certain limitations for rare diseases,and the quantity and quality of existing care services cannot meet the growing demand for care.Conclusion To promote the construction of the care service system for rare diseases and improve the quality and accessibility of care services for rare diseases needs the support of the government and all sectors of society,improve the policy guarantee of care services for rare diseases,enrich the channels for obtaining funds,enrich the team of professional service personnel,and actively promote social participation and innovation cooperation.
作者
农丰羽
周艳娥
农圣
刘灵光
NONG Fengyu;ZHOU Yan′e;NONG Sheng;LIU Lingguang(College of Public Health and Management,Youjiang Medical University for Nationalities,Baise 533500,China)
出处
《华夏医学》
CAS
2024年第2期126-131,共6页
Acta Medicinae Sinica
基金
广西自然科学基金课题(2020GXNSFAA238028)。
关键词
罕见病
托养服务
社会支持
生活质量
rare disease
nursing services
social support
quality of life
