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Living with Parkinson's—past, present and future: a qualitative study of the subjective perspective

27 June 2019
Volume 28 · Issue 12



the social impact of Parkinson's is difficult to capture in quantitative research given the condition's variable presentation, so qualitative research is needed to support a person-centred approach.


to describe how people with Parkinson's experience living with their condition over time.


27 audio-recorded verbatim-transcribed interviews were analysed through the grounded theory method.


past, present and future were the core categories that emerged. Past is the dimension of regretted memories of past life overturned by the communication of diagnosis. Present is the time dimension in which patients concretely experience the hindrances associated with the condition (loss of autonomy, submissive acceptance and social embarrassment), and the resources (search for autonomy, serene or in-progress acceptance, and social support). Future is characterised by both positive visions of tomorrow and negative ones (worry, resignation, denial).


these results, highlighting what living with Parkinson's means over time, may contribute to a better tailoring of nursing practice to the person's needs and rhythm, in a perspective of continuous adaptation.

The social impact of Parkinson's is difficult to capture in quantitative research given the condition's variable presentation. Moreover, disability is a complex concept that is based, according to the International Classification of Functioning, Disability and Health (ICF), on the interaction between the subject's health condition and personal and environmental factors (World Health Organization (WHO), 2001) including all the possible psychological and clinical implications (Giardini et al, 2013). Consequently, a quantitative approach may not be sufficient as a methodology to describe disability and deal with the issues of Parkinson's, since it captures little of a person's lived experience (Van Der Bruggen and Widdershoven, 2004) and little of the interconnected psychosocial and medical reality of the disabling implications of Parkinson's.

Therefore, a qualitative approach may be the best method to increase health professionals' understanding of the subjective experience of people living with the condition (Hariz et al, 2011; Valcarenghi et al, 2018). Over the past 10 years, only a few qualitative studies have provided a global view of Parkinson's based on patients' subjective experiences (Williams and Keady, 2008; Chiong-Rivero et al, 2011; Valcarenghi et al, 2018).

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