Study On The State Of Social Support For Families With Uncommon Diseases And Solutions For Improving It From A Standpoint Of Positive Welfare

The number of confirmed instances of uncommon diseases has increased and the age of diagnosis has reduced as China’s diagnosis and treatment levels for these diseases have improved.Children now make up a larger percentage of people with uncommon diseases.There is currently no support structure in place in China for patients with uncommon diseases.Families of children with uncommon diseases shoulder a great burden for the treatment,care,and development of their children in the future.This burden includes high medical and pharmacological costs,complex daily care for children,severe social discrimination,and unidentified developmental challenges for children.For families of children with rare diseases,these practical issues have made it difficult for them to survive and to live.Strong social support is helpful for assisting families of children with rare diseases in overcoming challenges and enhancing their capacity to manage risks.Therefore,it is critical to research social assistance for families of children with rare diseases.To understand the current social support situation of families of children with rare diseases,and to elaborate from the two dimensions of formal support and informal support,this study takes the families of children with rare diseases as the core,employs qualitative research methods,and interviews 12 representative families of children with rare diseases and two professionals responsible for rare disease assistance through objective sampling.On this basis,we will delve deeper into the social support dilemma faced by families with rare diseases.Utilize the positive welfare perspective to investigate the causes of the current social support dilemma faced by families with rare diseases,as well as social support optimization strategies for families with rare diseases.According to the report,social support for families of kids with uncommon diseases is still in its infancy.In terms of formal support,pertinent policies have been introduced one after another,hospitals,public rehabilitation centers,and nursing homes have gradually made efforts,medical insurance and social security have gradually attained a bottomless approach,and non-governmental organizations have actively integrated resources to provide services and committed to building a social support system for families of children with disabilities.integration challenges on campus,little social support,low intensity,and a lack of focused scenarios;For the majority of families of children with uncommon disorders,informal assistance is presently a significant source of social support.Families of children with rare disorders can receive substantial action,material,and financial support from family and friends because this support is consistent and long-lasting.Patient organizations can offer both informational and emotional assistance.The growth of the Internet has created new avenues for better social mobilization and support for families of children with rare diseases.Yet,because the medical costs for these families are so high,this support still amounts to a pittance.In general,the social support provided to families of children with uncommon diseases is limited in scope,of low intensity,and misaligned with their needs;a high support threshold and poor support accessibility;Social support is harshly stigmatized,and institutional development is slow.It also struggles with a lack of laws and regulations and delayed development;Uneven distribution of medical resources and a low level of medical security are development challenges brought on by wide geographical disparities.The main welfare bodies’ failure to fulfill their separate tasks and the existence of just one welfare body are among the causes of the quandary,according to the study from the standpoint of positive welfare;Power and responsibility are out of proportion,the welfare paradigm is outdated,and there is only one welfare investment,among other things.Considering positive well being,I provide specific recommendations based on this,including actively developing policies,advocating for legislation on rare diseases,and guaranteeing social fairness;creating a system of corresponding rights and obligations and altering the welfare paradigm;Invest more in human capital,encourage collaboration across different agencies,and create a network of social support.