Author's School

School of Medicine

ORCID

https://orcid.org/0000-0002-8566-2091

Author's Department/Program

Rehabilitation and Participation Science

Language

English (en)

Date of Award

12-15-2024

Degree Type

Dissertation

Degree Name

Doctor of Philosophy (PhD)

Chair and Committee

Erin R. Foster

Committee Members

M. Carolyn Baum, Lisa Tabor Connor, Chih-Hung Chang, Linda Tickle-Degnen

Abstract

Participation is a key outcome of rehabilitation and key to successful aging. Individuals with Parkinson’s disease (PD) often experience significant challenges in maintaining participation in meaningful activities and roles. This dissertation examines the influence of living with PD on participation by integrating findings from three studies: a systematic review, a cross-sectional study, and a longitudinal study.

The systematic review synthesized the existing quantitative research on participation in people with PD, revealing inconsistencies in the conceptualization of participation. While the evaluation tools aimed at assessing participation in PD showed acceptable coverage of domains of participation, the assessment of the aspects of participation appears mostly focused on actual participation problem and accomplishment but less on satisfaction with participation. The review revealed that impairment-level factors― demographics, PD progression, motor symptoms (e.g., tremors, bradykinesia), and non-motor symptoms (e.g., cognition, depression) ―were consistently associated with participation in studies of PD. The review identified critical gaps in the PD literature: the lack of quantitative research on how social factors influence participation and the absence of longitudinal studies on how participation changes over time.

The subsequent cross-sectional and longitudinal studies with secondary analyses of existing data addressed these gaps. The cross-sectional study investigated the contribution of social factors, particularly social support resources and social isolation, to participation in PD. The study identified significant correlates with better retention of participation, barriers (i.e., social isolation), and facilitators (i.e., social support from family/friend, organizations, and neighborhood/community). Notably, multiple hierarchical regression models revealed that greater support from family and friends contributes to increased high-demand leisure participation, while greater support from neighborhood/community is associated with increased social and overall participation.

The longitudinal study investigated how participation changes over the three-year period among individuals living with PD and identified factors influencing these changes. Multilevel modeling found no changes in activity participation over time but identified predictors of these changes. In particular, more severe depressive symptoms have within-person effects on reduced participation in instrumental, high-demand, and social activities, while greater social support from organizations, family, and friends is associated with greater participation in social activities. This dissertation work illustrates how social (environmental) factors (i.e., social support and social isolation) and impairment-level (personal) factors (i.e., motor and non-motor impairments, particularly depressive symptoms) influence participation in instrumental, leisure, and social activities among individuals with PD. The work advances our understanding of participation in PD, advocating for a holistic approach that addresses both personal and environmental factors to promote participation, health, and quality of life for individuals living with PD.

DOI

https://doi.org/10.48765/3ysn-ky72

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