Understanding Burden in Caregivers of Adults With Dysphagia: A Systematic Review

Abstract

Introduction: A previous review suggested that dysphagia is negatively associated with burden in caregivers of community-dwelling older adults. Other literature suggests similar patterns of burden may be found across adult patient populations. The current study, following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, was conducted to determine the impact of dysphagia on caregivers of adults, regardless of etiology. Method: Five electronic databases were searched using terms based on a review by Namasivayam-MacDonald and Shune (2018) but included all adults rather than only older adults. Searches were limited to English-language empirical studies discussing caregiver burden, included caregivers of adult care recipients, had some care recipients with dysphagia, did not include palliative care, and published in a peer-reviewed journal. Results: The search yielded 1,112 unique abstracts, of which 17 were accepted. Across studies, caregiver burden was found to increase due to dysphagia in care recipients. Commonly reported dysphagia-related causes of burden included changes in meal preparation, disruption in lifestyle, effects on social life, lack of support, insertion of feeding tubes, and fear of aspiration. In general, dysphagia-related caregiver burden was a common experience across caregivers, regardless of patient population, caregiver age, and relationship between caregiver and care recipient. Meta-analyses suggest 71% of caregivers of adults with dysphagia experience some degree of burden. Conclusions: These findings support that dysphagia negatively impacts caregiver burden and suggests sources of burden that clinicians can address within dysphagia management to support caregivers. However, more research is needed to better delineate sources of burden, especially those specific to various dysphagia etiologies, to better meet the needs of our patients.

The effect of care receivers' dysphagia severity on caregiver burden among family caregivers

“…The present results showed that texture‐modified food was significantly related to a higher caregiver burden. Previous studies showed that the caregiver burden related to dysphagia is related to the preparation of appropriate meals and concerns about aspiration 13 . Our study showed that caregivers in the texture‐modified food group were similarly careful about proper meal preparation, aspiration and choking; furthermore, they had a higher number of daily attention points than the tube‐feeding and normal group.…”

“…Previous studies showed that the caregiver burden related to dysphagia is related to the preparation of appropriate meals and concerns about aspiration. 13 Our study showed that caregivers in the texture-modified food group were similarly careful about proper meal preparation, aspiration and choking; furthermore, they had a higher number of daily attention points than the tube-feeding and normal group. Regarding daily meals, fears about aspiration and choking, which are directly related to adverse health events, imposed an emotional burden on caregivers.…”

“…Because dysphagia can lead to adverse events, such as aspiration pneumonia, choking and malnutrition, 12 it has been speculated that dysphagia might contribute to the exacerbation of caregiver burden. In fact, 71% of caregivers of patients with dysphagia have experienced caregiver burden, 13 which is multifaceted, and includes physical, mental 14 and emotional burden 15 . Additionally, the dysphagia of the care receiver can lead to restrictions in the caregiver's activities and social participation 16 .…”

“…Furthermore, other reports have assessed dysphagia by interviewing caregivers or care receivers about the presence of dysphagia 14,15,21 or the use of tube feeding; 22 therefore, there has been a lack of detailed information regarding dysphagia severity. Daily caregiver burden is expected to increase with dysphagia severity due to the need for appropriate meal preparation, the use of tube feeding and the increased risk of adverse health events among care receivers 13 . It is therefore suggested that caregiver burden might differ depending on dysphagia severity.…”

“…Daily caregiver burden is expected to increase with dysphagia severity due to the need for appropriate meal preparation, the use of tube feeding and the increased risk of adverse health events among care receivers. 13 It is therefore suggested that caregiver burden might differ depending on dysphagia severity.…”