Perceptions of cause and control in people with Parkinson's disease

Abstract

Purpose. This study sought to investigate how people with Parkinson's disease ((PD)) perceived both the cause and their control of the disease.

Method. Eleven people living with a diagnosis of idiopathic PD in the UK were recruited via Parkinson's disease nurse specialists and interviewed. Interviews were transcribed verbatim and themes were then extracted from the transcripts using interpretative phenomenological analysis ((IPA)). Themes which were well supported and novel are presented.

Results. Three themes are presented. 1)) different types of causal attribution; 2)) perceptions of control of symptoms by medication; 3)) the secondary control process of adaptation with particular focus on acceptance and denial.

Conclusions. Themes of cause and control arose in a number of ways throughout conversations with participants. The links between cause and control were not universal but rather occurred in subtle individual ways. Different strategies were used by participants so that control could be maintained, at least to some extent. However, a flexible and responsive social and healthcare system is required to support individuals appropriately.

Keywords:

• Parkinson's disease
• cause
• control
• illness beliefs
• acceptance

Notes

1. Space precludes presenting examples from all those participants whose data forms the basis of each of these themes and therefore the below presentation draws on at least half of the sample for each theme. However, as one indication of the prevalence of these themes within our sample we would note that the data from 8, 11 and 10 participants, respectively, formed the basis of the three themes presented here.

2. When reporting participants' speech the following notation is used: ((.)) refers to a pause in speech and ((. . .)) refers to truncated speech. All names are pseudonyms.

Acknowledgements

We thank the participants who contributed to this study and the Parkinson's disease nurse specialists for their invaluable help and advice. We also thank two anonymous reviewers for their constructive and supportive comments on an earlier draft of this article.