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

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.

A comparison of the effects of occupation-based interventions with and without responsibility feedback and conventional interventions on participation in people with idiopathic Parkinson's disease: study protocol for a randomized controlled trial.

BACKGROUND: Parkinson's disease (PD) is a neurodegenerative disorder with debilitating motor and non-motor symptoms which affect participation in meaningful occupations. Occupation-based interventions can improve participation in people with PD. Evidence for incorporating structured and intensive occupational therapy by considering the concept of responsibility is lacking for this population. This trial will compare the effects of occupation-based interventions with and without responsibility feedback and conventional interventions on participation in people with idiopathic PD. METHODS: A total of 45 people with PD, between 35 and 85 years old and Hoehn and Yahr stages between I to III, will be recruited from movement disorder centers for this three-armed study. Participants will be randomized into three groups (occupation-based interventions with responsibility feedback, occupation-based interventions without responsibility feedback, and conventional interventions). All participants will receive intervention for 24 sessions during a period of 12 weeks (2 sessions per week). The primary outcome measure will be participation satisfaction. Participation frequency and restriction, self-perceived performance, performance satisfaction, motivation, volition, sense of agency, responsibility, physical activity, community integration, activities of daily living (ADL), instrumental ADL, upper extremity function, balance, fatigue, and quality of life will be measured as secondary outcome measures. All outcomes will be measured at baseline, session 9, session 17, post-intervention (week 13), and follow-up (week 25). DISCUSSION: This home-based high-intensity, structured, client-centered, and occupation-based intervention will be conducted by utilizing the concept of responsibility. This proposed trial may result in enhanced participation that would benefit other motor and non-motor symptoms in people living with PD. Findings from this proposed study are expected to expand the knowledge of clinicians and help them in evidence-based decision-making processes. TRIAL REGISTRATION: Iranian Registry of Clinical Trials IRCT20140304016830N13. Registered on August 19, 2022.