Author ORCID Identifier
Year of Publication
Master of Science in Communication Sciences & Disorders (MSCSD)
Communication Sciences & Disorders
Dr. Debra Suiter
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)
Goggin, Emily Clare Sither, "THE IMPACT OF DYSPHAGIA AND GASTROSTOMY ON QUALITY OF LIFE IN CAREGIVERS OF PATIENTS WITH AMYOTROPHIC LATERAL SCLEROSIS" (2019). Theses and Dissertations--Communication Sciences and Disorders. 14.