Date Presented 4/17/2015
People living with Parkinson’s disease experience specific links between activities and symptoms, such as motor control impairment during basic activities of daily life (ADL) and fatigue during instrumental ADL. There is a need for assessments and interventions that target these specific links.
SIGNIFICANCE: Little is known about how Parkinson’s disease symptoms are experienced as people participate in their valued activities. This study addressed this gap by interviewing people about recent frustrating and satisfying life events and by analyzing how talk about symptoms was related to activities.
INNOVATION: This study contributes new information about how motor and nonmotor symptoms are linked to particular types of daily life activities. The results guide the development of new occupational therapy assessments and interventions.
APPROACH: Research questions included the following: (1) How frequently are motor and nonmotor symptoms mentioned when describing participation in activities? (2) Does the type of activity differ for motor versus nonmotor symptoms?
Parkinson’s disease, a common age-related neurodegenerative disorder, traditionally has been defined by motor symptoms such as rigidity, slow movement, tremor, and postural instability. Recent research has found numerous nonmotor symptoms, including impairment in cognition, emotional affect, autonomic functioning, and fatigue. Determining the linkages between symptoms and participation will advance targeted and evidence-based occupational therapy practice with this population.
METHOD: Qualitative content analysis was conducted on open-ended, baseline interviews about recent life events. Transcriptions were from the database of a randomized controlled trial (RCT): Self-Management Rehabilitation for Parkinson’s Disease. Interviews occurred in a university rehabilitation research laboratory. A total of 38 participants aged >40 yr from the control arm of the RCT were diagnosed with ideopathic Parkinson’s disease (Stages I–III) with no dementia, depression, or other movement conditions.
Participants’ talk about recent life events was coded. Symptom talk codes were developed from the neurological literature. Activity talk codes were developed from the occupational therapy literature. Adequate intercoder agreement was achieved between three coders. Qualitative content analysis systematically connected current neurological and rehabilitation constructs with participants’ lived experience. This connection guides the development of valid assessments and interventions.
RESULTS: Of 145 activities described by the participants, 68 (47%) activity descriptions also included talk about symptoms. Motor symptom talk was most frequently about axial/motor control, and nonmotor talk was most frequently about fatigue. Motor symptoms were most commonly linked with social activities, followed by basic activities of daily life (ADL) and high-demand physical leisure activities. Nonmotor symptoms were most commonly linked with instrumental ADL, followed by low-demand physical leisure activities and social activities.
CONCLUSION: Motor symptoms (especially axial/motor control impairment) and nonmotor symptoms (especially fatigue) are experienced during valued activities. Social activity is one of the primary types of activity in which both types of symptoms are experienced. Larger, sample-sized studies with specific interview questions pertaining to activity-related symptoms are needed.
