Exploring the Diagnostic Journey of Individuals Living with Parkinson Disease: A Qualitative Inquiry

Abstract

Background: Parkinson’s Disease is a progressive neurological disorder. Criteria and guidelines have been established to improve the accuracy of diagnosis with the present accuracy of diagnosis being approximately 82%. Receiving a diagnosis of an incurable and disabling disease is a stressful life event. Accurate and timely information affects the patient’s acceptance of the disease and potential treatments. The objective of the research project was to explore the experiences of patients living with PD and to give voice to the patient’s perspectives related to their experiences while awaiting a diagnosis, which can take years. We explored experiences related to the individuals’ physical and emotional health. Methods: Ethics was sought and granted through Cape Breton University. Following informed consent, purposive and snowballing approaches were used to recruit adult participants living with PD in the community setting. Qualitative data were collected using semi-structured interviews to support five individuals to openly share their experiences. Data was typed verbatim, and a thematic analysis approach was used to compare similarities across the data. Results: Participants’ experiences related to their diagnostic journey were thematically analyzed and the following three themes emerged: 1) background of diagnosis, 2) healthcare support, and 3) challenges associated with the experience. Conclusion: The results of this study contribute to a deeper understanding of the journey and experiences of individuals diagnosed with Parkinson’s Disease. The findings emphasize the effects on an individuals’ life and the importance of receiving a clinical diagnosis.