Author ORCID Identifier

https://orcid.org/0000-0002-1817-1292

Year of Publication

2019

Degree Name

Master of Science in Communication Sciences & Disorders (MSCSD)

Document Type

Master's Thesis

College

Health Sciences

Department

Communication Sciences & Disorders

First Advisor

Dr. Debra Suiter

Abstract

There is little research studying the relationship between caregiver quality of life and gastrostomy, a palliative intervention recommended to manage dysphagia and malnutrition in patients diagnosed with Amyotrophic Lateral Sclerosis (ALS). To facilitate a more comprehensive assessment of treatment effectiveness and to better guide patients and their families, this study investigated the relationship between gastrostomy, caregiver strain, and patient disease-related factors. Patients with bulbar-onset ALS and their caregivers were recruited regardless of their decision to accept or decline future gastrostomy. Caregivers completed the Modified Caregiver Strain Index (MCSI) to assess levels of caregiver strain as an index of quality of life. Surveys were completed at 3-month intervals prior to gastrostomy and at a single time point following gastrostomy. Of 13 patient-caregiver dyads recruited, 1 dyad completed both phases of the study as of yet. This caregiver reported increased caregiver strain following gastrostomy. Medical interventions aimed at managing dysphagia, such as gastrostomy, may not have a predictable impact on caregiver strain, as indexed by the MCSI, or changes in caregiver strain may reflect characterological differences among patient-caregiver dyads. Other psychosocial factors within a given patient-caregiver dyad may be stronger predictors of caregiver strain, burden, and quality of life in caregivers.

Digital Object Identifier (DOI)

https://doi.org/10.13023/etd.2019.199

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