Caregiver burden and eating-related guilt during dysphagia rehabilitation: A descriptive cross-sectional time series study

Background: Caregivers of patients with chronic dysphasia experience stress and guilt regarding their eating behaviors. Dysphagia rehabilitation, including minimal oral intake with tube feeding, may be vital for caregivers. This study investigated the effects of dysphagia rehabilitation on caregiver well-being and attitudes toward eating assistance. Methods: This cross-sectional questionnaire study was conducted at two dental university hospitals on caregivers of homebound patients with dysphagia undergoing rehabilitation. Caregivers' experiences, with an emphasis on guilt and psychological status, were assessed using the Apathy Scale and Patient Health Questionnaire-5 Depression Scale. Patients were evaluated at the time of the survey and rehabilitation commencement using the Barthel Index and Functional Oral Intake Scale (FOIS). Changes in FOIS scores and caregiver guilt were assessed using the Wilcoxon signed rank test and McNemar test, respectively. The impact of oral intake changes on caregiving motivation was assessed using the Fisher exact test. Results: Between August 2019 and January 2021, 55 of 100 targeted caregivers responded (median age=64.5 years). A significant difference in FOIS scores was found (median rehabilitation duration=9.7 months). Despite 25 pneumonia cases, 65% of the caregivers continued to encourage oral intake. Guilt decreased from 48% during peak dysphagia to 22% at survey time (odds ratio=0.2, 95% CI=0.04-0.70; P < 0.01). No association was found between caregiving motivation and improved oral intake. Conclusion: Severe dysphagia impacted caregiver well-being, indicating preferences for patients' oral intake. To support caregivers, healthcare professionals should explore and integrate new multidisciplinary approaches into dysphagia rehabilitation strategies.