Understanding Community-Dwelling Older Adults’ Experiences of Dysphagia and a Texture-Modified Diet

Abstract

Thesis (Ph.D.)--University of Rochester. School of Nursing. Dept. of Health Practice Research, 2016.Purpose: Community-dwelling older adults with dysphagia may not receive the dysphagia care and follow-up to the extent that older adults who live in institutional settings do. The medical outcomes of dysphagia for older adults are poor and the effects of aging on swallowing and the negative effects of dysphagia are well documented. However, to date, there is limited knowledge about how dysphagia and texture-modified diets affect the lives of community-dwelling older adults. The purpose of this qualitative study was to explore community-dwelling older adults’ experiences of dysphagia and the need to eat a restrictive texture-modified diet of pureed foods and/or thickened liquids. Methods: Using an interpretive descriptive research design (Thorne, 2008) and maximum variation purposeful sampling, 20 participants were recruited from four local hospitals and a home-care agency. Data collection included two in-depth interviews, participant observation during a meal, field-notes, memos, and relevant data from the participants’ dysphagia reports and/or medical records. Constant comparison was used and data collection and analysis were iterative. Meaning units and codes were identified and synthesized into four themes. Results: Four themes were identified: (1) choosing between eating or breathing is frightening, (2) hiding dysphagia symptoms from the public eye is important to preserve self-identity, (3) following the diet feels like life is “falling apart,” and (4) adhering to the diet is not an “all or none” phenomenon. Participants perceived the impact of dysphagia and a texture-modified diet on their lives to be a disruption, an interruption, or one where they acquiesced to the changes to their lives. Their levels of tolerance of the diet ranged from intolerance to tolerance and acceptance. The interactions between the perceptions on the impact on their lives and the levels of diet tolerance resulted in stable and changing experiences over time. Conclusion: Dysphagia and texture-modified diets affect community-dwelling older adults in multiple ways that may need to be considered by clinicians who work with this population. Clinicians may need to go beyond adherence to recommended diets and consider the broader social and psychological contexts of the lives of community dwelling older adults