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

Rowena K Merritt, Sarah Hotham, Lizzie Graham, Anette Schrag


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.


Communication of diagnosis, follow-up, lived experience of illness, long term conditions, medication anxiety, Parkinson’s disease, patient interviews, person-centered healthcare, qualitative research, self-help groups, self-management, specialist referral

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Schrag, A., Ben-Shlomo. Y. & Quinn, N.P. (2000). Cross sectional prevalence survey of idiopathic Parkinson's disease and parkinsonism in London British Medical Journal 321 (7252) 21-22.

Ferreira, J., Kayzenschlager, R., Bloem, B.R. et al. (2013). Summary of the recommendations of the EFNS/MDS-ES review on therapeutic management of Parkinson's disease. European Journal of Neurology 20 (1) 5-15.

Nicoletti, A., Mostile, G., Stocchi, F., Abbruzzese, G., Ceravolo, R., Cortelli, P., D'Amelio, M., De Pandis, M.F., Fabbrini, G., Pacchetti, C., Pezzoli, G., Tessitore, A., Canesi, M. & Zappia, M. (2017). Factors influencing psychological well-being in patients with Parkinson's disease. PLoS One 12 (12) e0189682.

Glaser, B.G. & Strauss, A.L. (2009). The discovery of grounded theory: Strategies for qualitative research. Piscataway, NJ: Transaction Publishers.

Seale, C. (1999). Grounded theory. In: The Quality of Qualitaive Research. Seale, C., (Ed), pp. 87-105. London: SAGE Publications Ltd.

Field, P. & Morse, J. (1985). Nursing research: the application of qualitative approaches. Cheltenham: Nelson Thornes.

QSR International Pty Ltd. (2012). NVivo (Version 10).

Ypinga,. J.H.L., de Vries, N.M., Boonen, L.H.H.M., Koolman, X., Munneke, M., Zwinderman, A.H. & Bloem, B.R. (2017). Effectiveness and costs of specialised physiotherapy given via ParkinsonNet: a retrospective analysis of medical claims data. Lancet Neurology 17 (2) 153-161.

Coulter, A., Roberts, S. & Dixon, A. (2013). Delivering better services for people with long-term conditions Building the house of care. The Kings Fund. Available at: Accessed 22nd December 2017.

Merritt, R., Pellatt-Higgins, T., Nizalova, O., Hashem F. & Rees, T. (2016). Evaluation Of The Benefits Of The British Lung Foundation’s Integrated Breathe Easy Voluntary Group Network. British Lung Foundation. Available at: Accessed 22nd December 2017.

Patton, M.Q. (2001). Qualitative Research & Evaluation Methods (3 edn.). Thousand Oaks, CA: SAGE Publications, Inc.



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