Electronic Thesis and Dissertation Repository

Thesis Format

Integrated Article

Degree

Doctor of Philosophy

Program

Health and Rehabilitation Sciences

Supervisor

Connelly, Denise M.

Abstract

Parkinson’s disease (PD) is a chronic condition that manifests through many changing symptoms over time. A person diagnosed with PD is typically supported by a spouse or other family member as their primary care partner, who experiences a host of biopsychosocial challenges associated with their care partner role. The best approach to supporting a care partnership, consisting of the person diagnosed with PD and the primary care partner, through their individualized journey with PD remains to be defined. The aim of this research was to identify clinical insights for providing client-centred care for both members of the PD care partnership. This was achieved through two constructivist theory studies, the first of which sought to elucidate how care partnerships learned to care for themselves while living with PD from their perspective, and the second to learn how clinicians from various health disciplines deliver their care to care partnerships living with PD. Findings from both studies were considered to highlight opportunities for optimizing the delivery of clinical care.

This research program has given rise to four main insights, grounded in the perspectives of both care partnerships and the clinicians who provide their care. First, is the importance of incorporating the care partner into clinical care discussions, both about how to support the person diagnosed with PD, and for their own health. Second, is to consider self-management education as a means of achieving client-centered care by supporting the care partnership to effect the cognitive, emotional and behavioural responses required to manage the many dimensions of PD. Third, is the importance of supporting the care partnership to assemble a healthcare team of relevant professionals and connecting them with appropriate community resources. Finally, identifying and managing expectations through empathetic, effective communication is paramount to the care partnership’s satisfaction with their clinical care.

Understanding how care partnerships learned to care for themselves while living with PD carries important implications for clinical practice in various disciplines. Healthcare professionals may reflexively contemplate these insights and consider how they may be applied in their clinical settings.

Summary for Lay Audience

People living with PD and their care partners must learn to manage their symptoms as they emerge over the course of disease. Self-management refers to these daily activities and skills used to minimize the impact of PD on their well-being. Health professionals help teach these skills for managing symptoms in partnership with the person diagnosed. However, there is no research from the perspective of the people learning the skills or about including the spouse in self-management practices. This research may help us learn about how couples living with PD learn the skills required to manage their symptoms, with the help of healthcare professionals, in clinical settings. It may also highlight the important role of the spousal care partner in managing PD. The perspective of people living with PD will be compared to that of the healthcare professional to help understand any gaps that may exist in needs and expectations related to self-management care in clinical settings. This information is intended to help inform clinical practice related to self-management, meaning how health professionals teach people living with PD how to take care of themselves and skills to manage PD and their symptoms.

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