The experience of people living with Parkinson's disease

Abstract

Parkinson's disease (PD) is a progressive disorder that affects movement, muscle control and balance. Second only to Alzheimer's disease, PD is one of the most common neurodegenerative disorders in the United States (Lai & Tsui, 2001:135), affecting approximately one million people in the U.S. alone (Parkinson's disease Foundation [PDF], 2009). While the cause of Parkinson's disease remains unknown, there are certain known risk factors associated with the disease. One of the risk factors is increasing age. PD is most frequently associated with older adulthood, affecting one in 100 Americans 60 years and older (PDF). Over the next five decades, the incidence of PD is expected to triple, as the average age of the population increases (Lai & Tsui, 2001:135). Parkinson's disease is a chronic, progressive disorder, with no known cause or promising cure. While substantial information is known about the medical aspect of Parkinson's disease, little is known about the illness experience of living with the disease. The goal of this study was to explore and describe the experiences of people living with Parkinson's disease. The guiding research question was: What are the experiences of people living with Parkinson's disease? A qualitative research approach was followed, with a collective case study research design. The population for this study included people who are in the late stage of Parkinson's disease, thus being diagnosed with Parkinson's disease before 2012 and who are receiving support services from Parkinson's Association of South Africa (PASA). Non-probability purposive sampling was utilized to generate a sample. Ten participants who met the criteria were selected for this study. Semi-structured individual interviews were conducted with participants. Interviews were voice recorded with the permission of the participants and were transcribed. The data gathered were analysed by the researcher and themes and sub-themes were identified. The research findings were presented and critically discussed. Literature control and verbatim quotes were used to support the findings. The conclusions of this study reflected that the experiences of people living with Parkinson's disease are complex. Throughout the study it was found that Parkinson's disease impacts significantly on the physical, psychological and social well-being of people living with this disease in a number of ways. The recommendations offered by this study can be used by professionals working in the field of chronic, geriatric and neurodegenerative illnesses to understand the experiences of people living with Parkinson's disease.