Abstract
People with PD who have eating difficulties and experience stigma may avoid social eating and reduce their overall social participation. This study presents a conceptual model of social eating in PD and the results of a secondary data analysis. OTs should consider the impact of eating difficulties upon the social lives of people with PD, and future work should focus on intervention approaches to optimize the social eating experience.
Primary Author and Speaker: Amber Murray-Smith
Contributing Authors: Michael Stevenson, Linda Tickle-Degnen
People with Parkinson’s disease (PD) often experience eating difficulties due to motor symptoms causing dysphagia and upper extremity feeding limitations. Qualitative research has suggested that eating difficulties combined with experienced stigma can lead to avoidance of eating and drinking in public (Westergren et al., 2016). This avoidance may have significant consequences for social participation. The aim of this study was to describe the quantitative associations of eating difficulties, experience of stigma, avoidance of public eating, and social participation as reported by people with PD (PwPD). This aim has not been addressed in previous literature. A quantitative descriptive research design with secondary data analysis was used to assess these associations. It was hypothesized that as eating difficulties increase, so too does stigma and avoidance of public eating, and that increased avoidance is associated with reduced social participation. Baseline data from the Social Self-Management of Parkinson’s disease study (SocM-PD) (Tickle-Degnen et al., 2014), an ongoing 3-year prospective cohort study, were analyzed. Ninety people with idiopathic PD were recruited through a movement disorders clinic, postings on PD and aging research advocacy websites, and PD support groups, between September 2013 and March 2016. The mean duration since PD diagnosis was 7.34 (SD 7.06) years with a range of 2 months to 34 years. Disease severity was indicated by the Hoehn & Yahr scale (1-5) and the mean participant stage was 2, characterized by mild symptom severity with bilateral involvement and no balance impairment (range: 1-4). Eating difficulties (dysphagia and feeding limitations) and avoidance of public eating were assessed with items on the Movement Disorder Society-United Parkinson’s Disease Rating Scale and the 39-item Parkinson’s Disease Questionnaire. Experienced stigma was assessed with the Stigma Scale for Chronic Illness. Social participation was assessed with the Activity Card Sort. Descriptive statistics and Pearson’s correlation coefficients were calculated. Consistent with hypotheses, as dysphagia and feeding limitations increased, so did stigma (r = .24 and r = .47 respectively, p < .05). As feeding limitations increased, so did avoidance (r = .56, p < .05). As dysphagia increased, so did avoidance but not at a significant level (r = .13). As stigma increased, so did avoidance (r = .76, p < .05). Finally, with increased avoidance there was reduced social participation (r = -.30, p < .05). These findings suggest that eating difficulties contribute to the experience of stigma and the avoidance of public eating, and reduced social participation in PwPD. Further work is needed to validate and expand a model of social eating in PD, however occupational therapists should consider that eating has a social function within people’s lives. This is consistent with AOTA’s (2017) definition of feeding and eating as “forms of social interaction [that are] influenced by a person’s culture, including food choices, rituals around eating, and the social meaning of eating” (p.1-2). Development of specific assessment tools and intervention approaches are needed within the field of occupational therapy to maximize the participation and experience of social eating among people with eating difficulties.
Westergren, A., Hagell, P., Wendin, K., & Sjödahl Hammarlund, C. (2016). Conceptual relationships between the ICF and experiences of mealtimes and related tasks among persons with Parkinson’s disease. Nordic Journal of Nursing Research, 36(4), 201–208. https://doi.org/10.1177/2057158516642386
Tickle-Degnen, L., Saint-Hilaire, M., Thomas, C. A., Habermann, B., Martinez, L. S. 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
American Occupational Therapy Association. (2017). The practice of occupational therapy in feeding, eating, and swallowing. American Journal of Occupational Therapy, 71(Suppl. 2), 7112410015. https://doi.org/10.5014/ajot.2017.716S04