Social Self-Management of Parkinson’s Disease

PURPOSE: We investigated whether social self-management styles of individuals with Parkinson’s disease (PD) are associated with disease severity.

BACKGROUND: Like their peers, older adults with Parkinson’s disease face age-related role transitions and changes in body structure and function associated with aging. The challenges of managing these transitions are magnified greatly by the disease. Few longitudinal studies have addressed the social life of people with PD, but those few indicate that as the disease progresses, individuals become lonelier and more socially isolated. Little is known about the social participation patterns of these individuals and the association of these patterns to disease severity. We define social self-management as the practices and experiences that contribute to personal social comfort while supporting mental and physical well-being. Social self-management practices include engaging in social participation, engaging in interpersonal relationships, and seeking support from capable people in informal and formal social networks. We propose that social self-management is intertwined with medical self-management in daily life and must be addressed when forming occupational therapy interventions.

DESIGN: This study is a cross-sectional report of baseline participant characteristics from an in-progress 3-yr prospective cohort study. Participants were 90 community-living individuals (34 women; M age = 65.47, SD = 9.72) with PD recruited through a movement disorders clinic, older adult centers, and support groups. Inclusion criteria were a diagnosis of idiopathic PD, Hoehn and Yahr score 1–4, and score of ≥26 on the Mini-Mental State Exam.

METHOD: Participants engaged in a 2-hr mixed-method protocol with trained interviewers. Measures of social self-management included the Activity Card Sort, emotional and instrumental support exchange scales, and the Chronic Illness Resource Survey. Principal component analysis of responses returned three component scores representing distinct styles of social self-management: participation in social life (P), exchange of support with others (E), and management of social resources (M). The measure of disease severity was the Movement Disorder Society’s Unified Parkinson’s Disease Rating Scales. The three social self-management component scores were entered into a cluster analysis to group participants who were similar in self-management patterns. One-way analysis of variance and post hoc t test comparisons were performed with cluster as between factor and disease severity as dependent measure.

RESULTS: Cluster analysis identified six clusters of 12–18 participants per cluster. The clusters significantly discriminated patterns of social self-management (p < .0001). In three clusters, participants used predominantly two styles (P plus E, E plus M, or P plus M). In the remaining three clusters, participants used predominantly one style only (P, E, or M). Patterns of social self-management were significantly associated with disease severity (p < .004). t tests showed that participants in clusters with P as at least one of their styles had less severe disease than those in clusters that did not use this style. Participants in clusters with only an E or M style had more severe disease relative to other clusters.

DISCUSSION: Patterns of social self-management vary among people with Parkinson’s disease. This variation is associated with disease severity. In the future, we will address change in social self-management profiles as people age with Parkinson’s disease.

IMPACT STATEMENT: This research addresses a gap in rehabilitation science and practice: underestimation of the importance of social life in the explanation of self-management of disease. The objective is to inform development of innovative person-centered self-management interventions for adults with chronic disease.

References

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Tickle-Degnen, L., Saint-Hilaire, M., Thomas, C. A., Habermann, B., Martinez, L. S., Terrin, N., . . . Naumova, E. N. (2014). Emergence and evolution of social self-management of Parkinson’s disease: Study protocol for a 3-year prospective cohort study. BMC Neurology, 14, 95. https://doi.org/10.1186/1471-2377-14-95.