Contributors to Dysphagia-Related Burden Among Spousal Caregivers of Stroke Survivors

Abstract

<h3>Research Objectives</h3> To identify individual- and dyadic-level factors associated with caregiver burden in couples experiencing post-stroke swallowing difficulties (dysphagia). As burden negatively impacts survivor and caregiver well-being, it is important to understand the variables that contribute to post-stroke caregiver burden. <h3>Design</h3> Cross-sectional online survey. <h3>Setting</h3> General community. <h3>Participants</h3> A volunteer sample of 28 adult stroke survivors with dysphagia (mean age 60 years) and their spouses (mean age 57 years). Survivors were >3 months post-stroke (median 12.5 months) and living with their spouse who was providing some degree of caregiving. <h3>Interventions</h3> Not applicable. <h3>Main Outcome Measures</h3> Dependent variable: dysphagia-related caregiver burden. Independent variables: swallowing-specific quality of life; stroke impact (Stroke Impact Scale; SIS); dietary restrictiveness (based on consumption of texture modified food and drink); survivor, spouse, and dyadic congruence of appraisal of dysphagia's impact on the social aspect and logistics of mealtimes (e.g., socializing during meals; meal preparation). <h3>Results</h3> Increased burden was significantly associated with greater survivor- and spouse-perceived impact of dysphagia on the logistics of mealtimes (r=.547, p=.002 and r=.758, p < .001, respectively), but was not associated with dyadic congruence of perceived impact (p=.113). Increased burden was also associated with increased dietary restrictiveness (r=-.647, p < .001) and decreased swallowing-specific quality of life (r=-.566, p=.001). Finally, burden was not associated with measures of stroke impact/severity (p=.265, .692, .120, .099 for physical, cognitive, emotional and social SIS subscales). <h3>Conclusions</h3> Factors related to dysphagia-related caregiver burden are multifactorial and include both survivor (dietary restrictiveness, swallowing-specific quality of life, perceived impact of dysphagia on mealtime logistics) and spousal (perceived impact of dysphagia on mealtime logistics) variables. These results support the interrelatedness of stroke survivor and caregiver health and well-being. There is a need for speech-language pathologists and other rehabilitation professionals to focus on the lived experience of both patients and their families in developing treatment plans. Further, incorporating increased dietary education and counseling into dysphagia management may facilitate reduced burden for stroke survivors and their families. <h3>Author(s) Disclosures</h3> Nothing to disclose.