In search of a good death: how would a good death be like in Parkinson's disease? Qualitative study about perspectives of people diagnosed with Parkinson's disease

• Grant number: 21/09729-0
• Support Opportunities: Scholarships in Brazil - Scientific Initiation
• Start date: October 01, 2021
• End date: September 30, 2023
• Field of knowledge: Health Sciences - Medicine
• Principal Investigator: Edison Iglesias de Oliveira Vidal
• Grantee: Ricardo Silva Carvalho
• Host Institution: Faculdade de Medicina (FMB). Universidade Estadual Paulista (UNESP). Campus de Botucatu. Botucatu , SP, Brazil

Abstract

Global aging has been associated with a significant increase in the prevalence of neurodegenerative diseases across the world. The decision-making process and healthcare practices adopted in the care provided to patients with such diseases and their families represent an important focus of palliative care and bioethics. Previous studies aimed to identify the meaning of a good death from the perspective of patients suffering from certain life-threatening diseases, such as cancer. The results of those studies have contributed to the formulation of patient-centered public health policies. Nevertheless, to our knowledge, there are no studies on the meaning of a good death from the perspective of patients diagnosed with Parkinson's disease. Parkinson's disease, which is considered the second most common neurodegenerative disease in the world, is characterized by progressive motor and non-motor symptoms associated with decreased quality of life. This project aims to identify the meaning of a good death from the perspective of patients diagnosed with Parkinson's disease as a means to contribute to the development of patient-centered practices and public health policies for patients with that disease. We will perform qualitative semi-structured interviews with Parkinson's disease patients on the subject of a good death. Those interviews will be recorded, transcribed, and analyzed by members of the research team. Qualitative methods of thematic content analysis will be used to extract themes from pooled field notes and one-to-one interviews. Emergent themes will be explored with attention to the content and context of transcriptions and field notes. These data will be used to describe and define what constitutes a good death from the perspective of persons diagnosed with Parkinson's disease. (AU)