A Study On The Satisfaction Of Social Support Needs Of Parents Of Children With SMA Through Social Work Interventio

Spinal muscular atrophy(SMA)is a rare group of motor neuron diseases that cause muscle atrophy and weakness.In general,the patient’s bodily functions are constantly lost as the muscles weaken.Parents of children will face great physical and mental pressure in the process of long-term care for their children.At present,there is no in-depth research on social work intervention for parents of children with SMA.Using integrated social work methods to provide services to parents of children with SMA to meet the social support needs of parents of children with SMA can not only help parents of children with SMA to establish a complete social support network,but also reduce the various burdens on the parents of children with SMA,promote social attention and tolerance of this group.This article takes the “Medical Road Peer” project of Beijing M Institution as an example,through questionnaires and unstructured interviews,to understand the three main needs of parents of children with SMA: the need for financial support and medical assistance,the acquisition of care skills and rehabilitation skills needs,as well as the need for psychological stress relief and emotional communication.Under the guidance of the theory of the biological-psycho-social medicine model,the theory of advantageous perspective and the theory of social support,social workers always adhere to the needs of the service recipients as the introduction point.On the one hand,social workers use the method of case management to coordinate the allocation of various social resources such as rehabilitationists,assistive devices,enterprises and foundations,and provide economic support and rehabilitation nursing support for service recipients through medical assistance,multidisciplinary rehabilitation management,home rehabilitation management;On the other hand,social workers empower clients by carrying out emotional support groups,forming patient communities,expand social networks,improve problem-solving skills,and provide psychological and emotional support to clients;In addition,social workers carry out community work to carry out community publicity,organize rare disease publicity activities and parent travel exchange meetings,and create a fairer and more inclusive social environment for parents of SMA children from a macro perspective,and expand social attention to this group.At the end of this paper,social work intervenes in the social support needs of parents of children with SMA,and conducts qualitative and quantitative assessments.This paper puts forward a reflection and summarizes the main problems: the support of the society and the government to the families of SMA patients needs to be improved,the medical knowledge of social work is incomplete,and the practical skills of social work need to be improved and resource links capacity needs to be strengthened.The author gives suggestions respectively for the above problems,and is committed to optimizing the service path for social work to intervene in the needs of parents of children with SMA,so as to improve the plight of parents of children with rare diseases,enhance the ability of social work to serve rare disease groups,and achieve professional development.