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.