Electronic Thesis and Dissertation Repository

Thesis Format

Monograph

Degree

Master of Science

Program

Health and Rehabilitation Sciences

Supervisor

Holmes, Jeffery D.

2nd Supervisor

Alvarez Jarmillo, Liliana

Co-Supervisor

Abstract

This thesis quantitatively explored the burden experiences of care partners of people with Parkinson’s Disease in Southwestern Ontario. Thirty-five complete responses (27 females, 8 males) and three partial responses to an online survey were obtained. The survey included a demographic section (41 items), two measures of burden and a quality of life measure. Care partner data were stratified based on Zarit Burden Inventory scores for analysis. Of the Little to No Burden (n=4), Mild Burden (n=15), Moderate Burden (n=8), and Severe Burden (n=4) groups, weekly hours spent on care duties and years in the care partner role were similar. The Severe Burden group provided most assistance with toileting (p=0.0007), eating (p=0.0037), dressing (p =0.0099) and bathing (p=0.0076), when compared to the Little to No Burden group. The Severe Burden group also accessed significantly more formal assistance compared to the Moderate and Little to No Burden groups.

Summary for Lay Audience

Parkinson’s Disease (PD) can impact a person’s independence and participation. Most often, those closest to a person diagnosed with PD (PwPD) take on responsibilities to accommodate for this loss of independence. In taking on such responsibilities, they are considered care partners to the PwPD. Negative experiences of stress related to this role are referred to as burden. This thesis reports on 35 (27 female and eight male) complete and three more partial (two female and one male) care partner responses to an online survey to characterize the burden experiences of care partners in Southwestern Ontario. Overall, 31.6% of the care partners in the sample experienced at least moderate burden. Care partners experiencing the most burden reported helping the PwPD in their care with bathing, dressing, toileting, and eating more than care partners experiencing the least burden in the role. Importantly, the hours per week spent providing care to the PwPD and the number of years in the care partner role was not statistically different when comparing care partners based on the degree of burden they experience. Of those surveyed in this study, male care partners reported higher burden when compared to female care partners. Overall, these findings are an important step in characterizing care partner experiences related to PD in Southwestern Ontario and offer relevant information to clinicians and community partners concerned with care partners or with PD in this region.

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