A Delphi Panel of People With Parkinson’s Disease Regarding Responsibility: Toward a Preliminary Taxonomy

Abstract

Abstract Importance: A sense of agency is associated with complex occupation-related responsibilities. A taxonomy can guide clinicians in enhancing responsibility in patients with Parkinson’s disease (PwPD). Objective: To (1) discover levels of responsibility in occupations for PwPD and (2) propose a taxonomy for occupations. Design: A two-round Delphi study with PwPD and a one-round Delphi study with international experts. Setting: Electronic survey. Participants: PwPD (N = 75) and international experts (N = 8). Outcomes and Measures: PwPD expressed their levels of an inherent sense of responsibility for each occupation (1 = very low responsibility, 5 = very high responsibility). International experts rated their level of agreement (5 = strongly agree, 1 = strongly disagree) with each dimension of the taxonomy. A consensus was determined to have been reached if the interquartile range was ≤1 and 70% agreement in two adjacent categories was achieved. Results: Thirty-three occupation categories were deemed as having very high to moderate responsibility for PwPD. Consequences of actions and the presence of others made up the two-dimensional responsibility taxonomy. Occupations have more challenging responsibility characteristics when they are performed with free choice, a level of high physical effort, alone, and with moral consequences. Conclusions and Relevance: This study yielded the first consensus among PwPD regarding responsibility in occupations as well as a classification system for charting the complexity of responsibility in occupations. The occupation list we have created can be beneficial to health care professionals when providing interventions or conducting outcome assessments. Plain-Language Summary: When planning interventions for patients with Parkinson’s disease, it can be helpful for clinicians to be aware of patients’ perspectives regarding their sense of responsibility to perform occupations. The use of a systematic sequence of challenging occupations with responsibility attributes ranging from less complex to more complex can help enhance patient occupational participation.