The involvement of people with Parkinson’s in designing a study of the lived experience of anxiety

Abstract

Introduction: Anxiety is a common non-motor symptom of Parkinson's and is an important consideration for occupational therapists working with this population. Little is known about how people with Parkinson's experience anxiety. A pragmatic inquiry framework and inductive approach were used to perform a patient and public consultation round to inform future occupational therapy research exploring anxiety in people with Parkinson's. Method: Seven telephone and two Skype interviews were conducted with people with Parkinson's, who were accessed and recruited through the charity Parkinson's UK. They were selected on the basis of their previous experience and training to participate in a consultation exercise. Thematic analysis was used to develop codes using an inductive approach. Findings: Three key themes emerged: experiences of anxiety in Parkinson's; coping with anxiety in Parkinson's; and considerations for future research. These include timing with regards to medication 'wearing-off' phenomena, easy access to medications, and providing a safe, sensitive research environment. Occupational therapists need to take these findings into account when designing intervention studies. Conclusion: This patient and public involvement consultation round proved valuable and the participants' contributions will directly improve the design of future occupational therapy research exploring the lived experience of anxiety for people with Parkinson's.

What is the lived experience of anxiety for people with Parkinson’s? A phenomenological study

“…The participants identified anxiety as a negative experience that had a detrimental impact on their quality of life, echoing the findings of the patient and public involvement consultation [ 34 ]. Anxiety is overwhelmingly seen as a negative entity in Parkinson’s literature, associated with issues such as fear of falling, and uncertainty in family and employment roles [ 8 , 27 , 94 ].…”

“…People with Parkinson’s who were involved in the patient and public involvement consultation that underpinned this study also expressed the ever-present nature of anxiety [ 34 ]. Due to the pathophysiology of Parkinson’s, it could be that the participants experience this feeling of omnipresent anxiety due to irreversible changes in brain biology [ 102 , 125 ].…”

“…Participants in the patient and public consultation (described above) also provided practical recommendations for how the study should be conducted. These recommendations were used to directly improve the design of this research study [ 34 ]. Ethical approval for this study was granted through the University of Plymouth’s Faculty of Health and Human Sciences (reference number (16/17)-244).…”

“…Given its prevalence, the lack of a specific pharmacological intervention, and the dearth of specific research, it is vital to gain an understanding of the experience of anxiety for PWPs to inform the development of future complex interventions [33]. A patient and public involvement consultation was undertaken to verify the need for this research with PWPs and to seek their opinions on how the study should be conducted [34]. All participants stated that they felt anxiety in Parkinson's needed more research, thus strengthening the rationale for this study.…”

Priorities for returning to work after traumatic injury: A public and professional involvement study

“…Secondly, our intention was not research, but involving patients and professionals in information gathering to inform subsequent research. Our data analysis could have been improved in rigour by participant member checking of transcripts, and peer-review triangulation, by involving an independent reviewer to code a selection of transcripts (Lovegrove et al, 2017).…”