The subjective experience of Parkinson’s disease: A qualitative study in 60 people with mild to moderate Parkinson’s in 11 European countries

Abstract

Objective: To describe the experience of being diagnosed and living with mild to moderate Parkinson’s disease (PD).

Method: Semi-structured in-depth interviews with people with Parkinson’s (PwP) in 11 European countries.

Results: Interviews with 60 PwP (52% male) with a mean age of 63 (SD 8.1) years and a disease duration of 9.6 (SD 6.9) years were analysed. PwP often delayed help-seeking due to lack of awareness of symptoms and there was sometimes a delay in specialist referral. The diagnosis typically came as a “shock”, making PwP unable to absorb all the information, but having a diagnosis for the symptoms was sometimes described as a “relief”. Prompt referral to a specialist, a clear and sensitively communicated diagnosis with reassurance about prognosis and a follow-up appointment with a PD nurse or other healthcare professionals a short interval after diagnosis were all positively viewed. Many reported worries and negative experiences with medications and wished for more time and information before initiating these. Reactions from family, friends and work colleagues when communicating the diagnosis were typically positive. During ongoing care, longer appointments with specialists and provision of information from healthcare professionals, patient organisations and self-help groups were considered important to many PwPs and helped them feel as if they could “take control” and manage their disease more effectively.

Conclusions: Taking into account these findings has the potential to improve the experiences of PwP through improved communication, tailoring of appointments and information provision including self-help approaches.