Communication Disorders and Sciences Program, University of Oregon, Eugene.
School of Rehabilitation Science, McMaster University, Hamilton, Ontario, Canada.
Am J Speech Lang Pathol. 2021 May 18;30(3):1061-1073. doi: 10.1044/2021_AJSLP-20-00250. Epub 2021 Mar 31.
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.
照顾者负担会对卒中幸存者和照顾者的健康产生负面影响。因此，更好地了解可能导致与吞咽困难相关的照顾者负担的个体和双重水平变量非常重要。本初步研究的目的是确定在经历卒中后吞咽困难的夫妇中，与负担相关的幸存者、照顾者和双重特定因素。
28 名有吞咽困难的卒中幸存者（“照顾对象”）及其配偶（“照顾者”）参加了研究。照顾对象和照顾者完成了一项调查，从中得出以下变量的分数：与吞咽困难相关的照顾者负担、照顾对象和配偶对吞咽困难对用餐时间的影响的感知（社会、用餐时间后勤）、对影响的双重一致性感知、国际吞咽障碍饮食标准化倡议功能饮食量表、吞咽相关生活质量量表和卒中影响量表（认知、情感、身体和社会领域）。计算 Spearman rho 和点二项式相关系数，以确定与照顾者负担相关的因素。
负担增加与照顾对象和配偶对吞咽困难对用餐时间后勤的影响感知更大显著相关；然而，负担与感知影响的双重一致性测量无关。值得注意的是，负担增加还与饮食限制增加和吞咽特异性生活质量下降有关。与吞咽相关的照顾者负担与任何领域的卒中影响/严重程度的测量无关。
与吞咽相关的照顾者负担相关的因素是多因素的，包括照顾对象（例如，国际吞咽障碍饮食标准化倡议功能饮食量表、吞咽相关生活质量量表、吞咽困难对用餐时间后勤的影响感知）和照顾者（例如，吞咽困难对用餐时间后勤的影响感知）变量。这项初步研究的结果支持将咨询和以家庭为中心的护理方面纳入我们的管理实践的必要性，这是言语病理学家越来越感兴趣的领域。
