Research On Osteogenesis Imperfecta's Survival Status,Needs And Security

Osteogenesis imperfecta-one of the rare diseases,a vulnerable group that needs social attention.However,there is almost no research on the group of osteogenesis imperfecta.This study is a qualitative study of the survival status,needs and protection of osteogenesis imperfecta.Through interviews and questionnaires of some patients with osteogenesis imperfecta and their families in Shandong Province,the data of one hand were collected to study the survival,needs and protection of the group of osteogenesis imperfecta from the perspective of social work.The study found that patients with osteogenesis imperfecta in Shandong can basically meet the needs of survival with the support of social support system.Patients with osteogenesis imperfecta rely heavily on informal support systems.The family has made great efforts in nursing,medical treatment and rehabilitation for patients with osteogenesis imperfecta.In order to maintain their livelihood,the osteogenesis imperfecta group has formed a strong resilience,actively seeking educational opportunities and seeking job opportunities.However,the group of osteogenesis imperfecta also faces many problems:The lack of nursing knowledge,the lack of barrier free facilities in the living place,the overburden of medical expenses,low availability of drugs,the infringement of the right to education,the difficulty of safeguarding the rights,the unsound system of special education,the lack of employment skills,the limited employment channels,the difficulty of starting a business,the inadequate legal knowledge,and the inability to solve the problem by legal means.Solving the problem of osteogenesis deficient population is an important step in the progress of national social civilization and the building of a harmonious socialist society.Finally,in order to help people with osteogenesis imperfecta integrate into social life.Countermeasures and Suggestions are put forward for the improvement of the system.Including:Improve the level of rehabilitation and accelerate the construction of barrier-free environment;reduce the proportion of family burden of treatment costs,establish a complete medical service system,and improve drug accessibility;perfect the special education system and protect the rights of the group receiving the obligation of education;Establish and improve the employment service system of the osteogenesis imperfecta group,provide systematic employment skills training,widen the employment channels,and encourage the support of independent entrepreneurship;create an inclusive social environment and popularize the knowledge of rare diseases.Promoting social workers to serve for osteogenesis imperfecta Colleges and universities accelerate talent cultivation.