Children with Rare Diseases

Abstract

Background: China's child welfare system is a the process of transition from compensation-type to moderate inclusive type. However, it still heavily relies on the path of compensation-type.  Based on insufficient national governance capabilities, the core of welfare in China is being challenged and it has lead to the dislocation and insufficiency of welfare supply to children with rare diseases. A multi-coordinated national care service system is urgently in need to be developed. Objectives: In the context of state parental power, what is the current situation of welfare of children with rare diseases in China? What are the characteristics? How to play a coordinated role of all stakeholders in the care delivered to children with rare diseases? Methods: The methods of interview, literature review and questionnaire survey were used to understand the basic situation of children with rare diseases and the interaction between the welfare provider and the providing mechanism. Basic information on children with rare diseases, family status and needs were collected. Relevant literature on the protection of children with rare diseases from the central government was analyzed. Results: Fourfold dislocation impedes the provision of resources for the welfare delivered to children with rare diseases. Economically, the government's basic welfare services for children with rare diseases seems insufficient In the healthcare field, the quality of specific services offered by healthcare organizations is uneven. In terms of timing, children with rare diseases face the effects of having few caregivers allocated. Main Contribution to Evidence-Based Practice: This paper analyzes the status quo of welfare services and healthcare delivered to children with rare diseases. It analyzes the causes of difficulties and insufficiency of the welfare services and policies for the children with rare disease and puts together knowledge for evidence-based practice and policy-making for children with rare diseases.