"Disease" And "Illness" In Children With Rheumatic Diseases From The Perspective Of "Biographical Disruption"

Childhood rheumatic disease,as a chronic systemic immune disease that can involve the whole body organ system,has the characteristics of large physical damage,high disability rate,high mortality,and occult onset,which makes many children and their parents unprepared.However,the modern medical system pays more attention to the indicators of diseases,and pays less attention to the disease experience of children in the process of medical treatment.Since the 20th century,driven by professional development and medical and health system reform,medical social work has developed rapidly,which has promoted the transformation of the medical system to the "bio-psycho-social medical model".During the professional internship in F Pediatric Hospital in Shanghai,the researchers found that the long medical treatment process,uncertain treatment effect,numerous disease complications,and huge drug toxic and side effects all make the children suffer significant damage and impact on the body,psychology,and society,and face all kinds of "destructive" results.What substantive destruction result did pediatric rheumatic disease bring to pediatric patients?How do they react and counter it during the disease?This is the question to be explored in this study.This study used semi-structured interviews and participatory observation methods to study children in the department of Rheumatology of F Children’s Hospital in Shanghai.Based on Bury’s theory of "biographical disruption",this study investigated the destructive effects of childhood rheumatism on children and their responses to combat the "destruction".The study found that children’s rheumatism destroyed the children’s physical state,subverted the children’s cognition,caused the break of the children’s social connection,and also affected the children’s family,family life into chaos and disorder.In the face of the destruction of the life process brought by children’s rheumatic disease,children and their families are also constantly adapting to the destruction.They maintain the stability of the transient family order in the chaos,and use material resources,emotional and social resources to fight against the destruction brought by the disease.The study also found that there were differences in coping styles among families with large differences in cultural level,economic level and social class,mainly in coping style and disease meaning interpretation of children’s rheumatic disease.The more restricted the family was by cultural level,economic level and social class,the less able the family was to manage the disease.More attention should be paid to the actual consequences such as physical damage and economic pressure when dealing with children’s rheumatic diseases.Through the perspective of "the destruction of life process",this study systematically combs the physio-psycho-social destructive effects of childhood rheumatic diseases on children,and presents the cognitive process and coping style of children with rheumatic diseases and their families in the course of the disease.The researchers believe that in the medical field,under the condition of limited service resources and service space,medical social workers can provide services by distinguishing the main needs of children and their families at different disease stages,so as to make the services more targeted and realize the maximum utilization of resources.