Faculty Presentations Faculty Presentations: Mirinda Tyo and Jennifer Mammen

Model of coping with progressive disease for people with Parkinson’s

Full list of poster authors

• Mirinda Tyo, PhD¹
• Jennifer Mammen, PhD¹
• Aaron Lerner²
• Ryan McMahon, RN¹
• Raunak Al-Rubayie²
• Melissa Kostrzebski, MBA^{2, 3}
• Jamie Adams, MD^{2, 3}

Affiliations

1. University of Massachusetts, Dartmouth, College of Nursing and Health Sciences, Dartmouth, MA, USA
2. Center for Health + Technology, University of Rochester Medical Center, Rochester, NY, USA
3. Department of Neurology, University of Rochester Medical Center, Rochester, NY, USA

Funded by The Michael J. Fox Foundation for Parkinson’s Research (MJFF-022743)

Conference where poster was previously displayed 

17th International Family Nursing Conference (IFNC17) in Perth, Australia (Virtual) 

Poster abstract

Background and purpose

Longitudinal data on what matters to people with Parkinson’s Disease (PD) and their family is lacking. Data on symptoms that are important is needed to guide clinical care and develop valid outcome measures. The WATCH-PD study aimed to identify how meaningful symptoms and impacts changed over time among people with early PD, to understand what matters most to those affected by the disease.

Methods

A qualitative descriptive design with semi-structured online interviews and simultaneous symptom mapping using XmindTM software was used to identify meaningful symptoms and impacts. Interviews were recorded and transcribed verbatim. Symptom maps and transcripts were coded using thematic and content analysis using NVivoTM software. Major themes were supported through in vivo coding of direct participant quotes. 

Results

A total of 33 participants completed 2-hour interviews annually for 3 years. Findings revealed coping with PD is a complex and dynamic process for individual’s and their families. As shown in Figure 1, three stages of coping were thematically identified, including (1) anticipating onset or worsening of symptoms, (2) disrupting of personal well-being, and (3) adjusting to the impact of symptoms. How an individual progresses through these stages and impact on sense of well-being varied widely based on a range of personal and contextual factors (e.g., retirement, impact on spouse/relationships) and ability to physically accommodate or psychologically adjust to the impact of symptoms. 

Conclusions and implications

People affected by PD appear to anticipate the onset of new and worsening symptoms that can lead to varying degrees of disruption in personal and social functioning.  Symptoms become more bothersome when the individual has less ability to accommodate for functional impacts, whereas disruption can be diminished with improved physical and psychological coping mechanisms.