The Experience of Parkinson’s Disease: A Systematic Review and Meta-Ethnography

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.

The impact of motor symptoms on self-reported anxiety in Parkinson's disease

“…It is also possible that the motor symptoms operate in conjunction with mood, exacerbating or causing mood disturbances. For example, the manifestation of motor symptoms may promote social withdrawal [3], thereby promoting anxiety and depression. Interactive motor-mood effects such as anxiety related to motor fluctuations may affect motor and mood disturbance [5].…”

“…The neuropathology of PD gives rise to anxiety—that is, it is intrinsic to the disease [2]—and the individual’s response to progressive disease symptoms may additionally elicit or exacerbate mood dysfunction [3]. Anxiety may occur independently of motor symptoms [4] or may occur simultaneously [5].…”

Real-life experiences of patients with Parkinson's disease

“…At the same time they stressed their wish for a stable body image, to keep traditional competence and to be accepted by others. Based on systematic review (Soundy et al, 2014), authors have stated that health care professionals working with PD patients should have a better understanding of patients' social identities. It is important to recognise that PD influences an individual's social identity or sense of self.…”

Impact of specialist palliative care on coping with Parkinson’s disease: patients and carers

“…Prevalence increases with age. Life changes affect patient and family carer throughout domains of life2: social life restriction, mood and sleep changes, anxiety about an uncertain future, loss of future plans, financial limitations, helplessness, loss of control and self-identity and emotional exhaustion 3…”