Practical Exploration Into The Case Work Intervention To The Living Predicament Of Parents Of Children With Rare Diseases

Currently,more and more children have been found with rare diseases in China.In view of rare diseases' particularity,there are limited medical resources available for their treatment,which is rather difficult and costs much money.Thus,rare diseases bring huge pressure to the sufferers' families.In China,most researches on rare diseases are focused on medical treatment and not much attention has been paid to the sufferers and their families.They are not intervened much in the social work practice,thought they need such intervention exactly and badly.This paper is based on the author's internship in Shenzhen ZC Social Work Service Center.During the internship,the author through community visits got access to the Alexander Disease troubled families,established favorable and professional relations with them,and got to know about the plights they were amid.The author has helped the service targets to excavate their own advantages and established the effective family and social support networks by using the social support theory and the empowerment theory in the professional social work theories as the theoretical support.In this paper,difficulties confronting the rare-disease children's families both materially and mentally have been analyzed,targeted schemes have been made from the professional perspectives of social work,the difficulties confronting the families have been prioritized,and the social threapy mode has been adopted to help those families out of plights.The author,with the intervention manner of individual case service,has demonstrated the practice of social worker's intervention in those families in four stages,namely the preparation stage,the intervention stage and the service summarization and assessment stage.Finally,experience and deficiencies with the work has been summarized,and related measures and suggestions have been proposed.Such as to faster advance the intensity of social work involvement in the group of parents of children with rare diseases,to faster boost the construction of talents team of social workers providing medical service,and to faster propel the birth of policies related with protection of rights and interests of patients with rare diseases.By carrying out the individual case service,the author has explored the feasibility and necessity of the social therapy mode in settling the difficulties with the rare disease children's families on one hand,and has got to know more closely about the problems confronting the service targets and provided them with helps from different aspects when engaged in the group work during the individual case service on the other hand.Meanwhile,it's hoped that the research would provide a reference and some suggestions to social workers who may meet such cases in the future.