Abstract
There has been little attempt to summarise and synthesise qualitative studies concerning the experience and perception of living with Parkinson's disease. Bringing this information together would provide a background to understand the importance of an individual's social identity on their well-being and hope. Three primary aims were identified (a) understanding the importance of social identity and meaningful activities on individuals' well-being, (b) identifying factors and strategies that influence well-being and hope, and (c) establishing a model that relates to an individual's hope and well-being. Three stages were undertaken including a traditional electronic search, a critical appraisal of articles, and a synthesis of studies. Qualitative articles were included that considered the experience of living with Parkinson's disease. Thirty seven articles were located and included in the review. Five themes were identified and the themes were used to inform development of a new model of hope enablement. The current review furthered understanding of how physical symptoms and the experience of Parkinson's disease affect the individual's well-being and hope. Social identity was established as a key factor that influenced an individual's well-being. Being able to maintain, retain, or develop social identities was essential for the well-being and hope of individuals with Parkinson's disease. Understanding the factors which prevent or can facilitate this is essential.
Highlights
Individuals with Parkinson’s disease have a reduced healthrelated quality of life and increased psychological and physical morbidity [1]
A metaethnography is undertaken in seven stages [19]; a detailed consideration of these stages can be considered in our previous work [16]
There was a great need for a synthesis of qualitative studies that have considered the experiences of patients who live with Parkinson’s disease
Summary
Individuals with Parkinson’s disease have a reduced healthrelated quality of life and increased psychological and physical morbidity [1]. Fluctuations in disease symptoms, severity of motor symptoms, and the duration of the disease have been associated with depression and anxiety [5] This is supported by other evidence, for instance, the symptom of fatigue has been associated with a reduced quality of life as well as worse psychosocial behaviours [6]. Recent research has identified that the physical aspects of the disease (e.g., a reduction in the ability to perform activities) combined with other determinants (e.g., stress, anxiety, and communication difficulties) decrease an individual’s social activities, increasing isolation and leading to depression [4]
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