The Subjective Experience of Living with Parkinson’s Disease: A Meta-Ethnography of Qualitative Literature

Abstract

Background: A better understanding of the subjective experience of living with Parkinson’s disease (PD) and the factors that influence this experience can be used to improve wellbeing of people with PD (PwP). Objective: To gain more insight in the subjective experience of PD from the PwP’s perspective, and the factors that contribute to this experience. Methods: In this qualitative review, we performed a systematic search of qualitative studies discussing the subjective experience of PD and extracted reported themes (first order themes). Using a meta-ethnographic approach, we categorized the first order themes into second order themes, and created a third order construct: a holistic model of the subjective experience of living with PD. Results: We included 20 studies with a total sample of 279 PwP. Data-extraction yielded 227 first order themes, which were categorized into the second order themes: 1) Awareness, 2) Disruption, 3) Adjustment, 4) The external environment, and 5) The changing self. With these themes, we developed the “model of dialectic change” which conceptualizes life with PD as a transformative journey, wherein PwP employ strategies to stabilize their changeable relationship with their external environment, while simultaneously redefining their self-concept. Conclusion: Our findings indicate that not only the symptoms of PD, but also the manner in which these cause disruptions in the PwP’s interaction with their personal environment and self-concept, determine the subjective experience of PD and quality of life. Some PwP experience problems with adjusting, resulting in psychological distress. This calls for a holistic, multidisciplinary and participatory approach of PD.