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Patients' experience with Parkinson's disease

OBJECTIVES: To understand the impact of Parkinson's disease (PD) on Patients' life and the approaches available and used to cope with this chronic condition. METHODS: Data were collected with unstructured interviews using Meihy's oral history methodology. The sample consisted of eight elders from the UFSC Extension Mutual Help Group. Data were collected in the first academic semester of 2005. The project has been approved by the Ethics Committee on human subjects, Resolution n.º196/96 of the Ministry of Health. RESULTS: Four important topics have emerged: "Learn about the diagnosis of Parkinson's disease always cause a great impact". "Living with Parkinson's Disease? ...you have to do your utmost!" "The diagnosis must be shared with the family". "Living with patients with Parkinson's disease may be beneficial for them; it may encourage and socialize them". CONCLUSIONS: The meaning of having or living with patients with Parkinson's disease may suggest new strategies regarding the revision and expansion of health programs to attend the needs of patients with Parkinson's disease and their family members.

Parkinson's disease; Chronic disease; Patient care; Caregivers; Life change events


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