Disease Narrative Studies In Patients With Parkinson’s Disease

Parkinson’s disease(PD)is a kind of neurodegenerative disease which mainly occurs in middle and old age.It has the characteristics of long course,great destructiveness,lifelong accompanimence and irreversibility.In the long process of disease diagnosis and treatment,patients face major challenges in physical,psychological and social interaction.Therefore,PD patients’ feelings about the disease are not only reflected in the physiological level,but also involve the relevant psychological,social and cultural implications.So how does the disease affect the life of the sufferer?How does the patient interpret the disease and its meaning?What factors influence the patient’s disease narrative?What are the characteristics of the patient’s disease narrative?These are the questions I hope to study.This study aims to have an in-depth understanding of the disease course of PD patients,explore their disease narrative and significance,as well as their disease adaptation and adjustment process,and form a complete disease narrative about PD patients.Based on the author’s four-month internship experience in D Hospital of Shanghai,this study conducted in-depth observation of patients in Parkinson’s specialist outpatient department by means of participatory observation.A semi-structured interview was conducted with 11 PD patients through a combination of online and offline methods,and narrative analysis was adopted to analyze and interpret the collected interview data.According to the course of disease,the author divides it into four themes:(1)the transition of the physical and mental state of the first appearance of the disease;(2)"like a normal person" with fluctuations in the disease;(3)The disease is out of control,"there is more than enough heart and insufficient strength";(4)Disease adjustment and adaptation live in the present.Through the explanation and analysis of the disease process of PD patients,the disease narrative about chronic cancer,ghost,acceptance of fate and winning the lottery was obtained,as well as the profound significance of being content,maintaining dignity and calmly facing death.It is analyzed that patients adapt and adjust to the disease through three aspects:self-empowerment,family support and social connection.This study discusses the factors influencing the patient’s disease narrative,that is,the patient’s disease process and the patient’s environmental resources,and the interaction between the two makes the patient’s disease narrative develop different directions.The temporal characteristics of disease narrative are analyzed,and the patient’s disease narrative is a narrative formed by embedding oneself with disease experience into the disease plot,and its structure will be affected by the narrative order.Finally,another group of PD patients that has received less attention,young PD patients,is discussed,and through the preliminary analysis of the disease narrative of young PD patients,in order to enrich the relevant research on the disease narrative of Parkinson’s patients.Finally,this study puts forward suggestions for medical social work intervention in PD patients,providing different services to patients,families,medical staff and social levels,and calls on policy makers to pay more attention to the group of PD patients and jointly help PD patients form a more positive disease narrative.