Master of Science
Health and Rehabilitation Sciences
Johnson, Andrew M.
Holmes, Jeffrey D.
Difficult conversations, which can be challenging co-occupations, play an important role in the lives of care partners of individuals living with Parkinson’s disease. In our first study for this integrated-article thesis, we used a critical interpretive synthesis to explore how informal caregiving had been conceptualized in occupation-focused research. We found that an occupational perspective illuminated otherwise overlooked aspects of caregiving. In our second study, we used an occupational science lens to explore how seven care partners of individuals with PD experienced having difficult conversations within the caring role. We conducted two rounds of in-depth semi-structured interviews and used an American Phenomenological Constructivist approach. We learned that not all difficult conversations are equal; difficult conversations may initially increase, then decline over time; and mediating factors impact how difficult conversations will go. Difficult conversations relate to the doing, being, becoming, and belonging of care partners and may contribute to their wellbeing.
Summary for Lay Audience
Care partners play a major role in the lives of individuals with PD and are arguably just as affected by the disease in terms of how their daily activities are impacted. We conducted two studies as part of this thesis. Our first study looked at how considering unpaid caregiving to be a meaningful occupation could help us to better understand the lives and needs of care partners. In our second study, we spoke with seven care partners about their experiences with having difficult conversations in the hopes that illuminating this one aspect of the caregiving experience would help us better understand the ripple effects of PD.
Our first study focused on how informal caregiving has been thought about within studies that use an occupation-focused approach. We searched five academic journals known for publishing research centred around occupation for articles that focused on informal caregiving for older adults. We found that over time, more researchers have placed their focus on caregivers themselves rather than dividing their attention between caregivers and care recipients. Recent studies give attention to the interconnected nature of caregivers’ relationships, the occupation of caregiving, and tasks within the caregiving role. Recognizing these interconnections helps the study of caregiving to have a holistic approach.
In our second study, we learned that difficult conversations can range from monological (one-sided) to dialogical (with both parties contributing) and from non-action oriented (just about communicating) to action oriented (focused on making change). The degree of challenge within a difficult conversation seems to depend on how meaningful the topic is to either party. Our second finding was that difficult conversations seemed to often increase initially and then to decline as changes are accepted or supports introduced. Our third finding was that personal and interpersonal factors impact how difficult conversations will go.
Using an occupational perspective has allowed us to consider the specifics of how care partners carry out difficult conversations and the impact of individual personality characteristics, personal growth, and relationships on their successful engagement in difficult conversations. We have also been able to appreciate how important difficult conversations are to the wellbeing of care partners of individuals with PD. We see engaging in difficult conversations as an important task of care partners of individuals with PD.
Reid, Helen A., "Lived Experience of Having Difficult Conversations Among Care Partners of Individuals with Parkinson's: An Occupational Science Perspective" (2022). Electronic Thesis and Dissertation Repository. 8559.