Lived experience of outpatients with Parkinson's disease: an interpretative phenomenological analysis

Introduction: The chronic, degenerative and progressive character of Parkinson’s disease (PD) is reflected in the living experience of patients – and it also has an impact on their dignity. Aim: The aim of the study was to increase the understanding of the lived experience of outpatients with PD and its impact on their dignity. Methods: The study design is explorative using interpretative phenomenological analysis (IPA). Semi-structured interviews were held with 11 participants with PD between February–May 2018. Interviews were conducted as individual face-to-face interviews, in privacy with no involvement of family members according to the interview protocol. Data analysis was performed according to IPA process using the ATLAS.ti 8.0 program. Results: Our study identified five themes that reflect the lived experience of outpatients with PD: Me and my Parkinson’s: losses, acceptance and coping; The Need to Remain Self-sufficient versus the Fear of Dependence; How Do Others See Me: Scorn versus Acceptance; Lack of Information versus the Need to Be Informed; Lack of Respect versus the Accommodating Approach of Healthcare Professionals. We discovered their impact on dignity, especially in the areas concerning autonomy, self-esteem, self-worth, identity, respect, and other people’s appreciation. Conclusions: Patients with PD are confronted with many serious changes on a daily basis, which significantly influence their dignity. This fact must be known and respected by health care professionals when providing patient-oriented care.