Contributors to Poststroke Dysphagia-Related Caregiver Burden

Purpose Caregiver burden negatively impacts both stroke survivor and caregiver well-being. Thus, it is important to better understand the individual- and dyadic-level variables that may contribute to dysphagia-related caregiver burden. The aim of this preliminary study was to identify survivor-, caregiver-, and dyadic-specific factors associated with burden in couples experiencing poststroke dysphagia. Method Twenty-eight stroke survivors (“care recipients”) with dysphagia and their spouses (“caregivers”) participated. Care recipients and caregivers completed a survey from which scores for the following variables were derived: dysphagia-related caregiver burden, survivor- and spouse-perceived impact of dysphagia on mealtimes (social, mealtime logistics), dyadic congruence on perceived impact, International Dysphagia Diet Standardisation Initiative Functional Diet Scale, Swallowing-Related Quality of Life Scale, and Stroke Impact Scale (cognitive, emotional, physical, and social domains). Spearman's rho and point biserial correlation coefficients were calculated to determine the factors related to caregiver burden. Results Increased burden was significantly associated with greater care recipient– and spouse-perceived impact of dysphagia on mealtime logistics; however, burden was not associated with measures of dyadic congruence of perceived impact. Notably, increased burden was also associated with increased diet restrictiveness and decreased swallow-specific quality of life. Dysphagia-related caregiver burden was not associated with measures of stroke impact/severity across any domain. Conclusions Factors related to dysphagia-related caregiver burden are multifactorial and include both care recipient (e.g., International Dysphagia Diet Standardisation Initiative Functional Diet Scale, Swallowing-Related Quality of Life Scale, perceived impact of dysphagia on mealtime logistics) and caregiver (e.g., perceived impact of dysphagia on mealtime logistics) variables. The results of this preliminary investigation support the need to incorporate aspects of counseling and family-centered care into our management practices, a growing area of interest for speech-language pathologists.