Date of Conferral

2020

Degree

Ph.D.

School

Social Work

Advisor

Sean R. Hogan

Abstract

People with amyotrophic lateral sclerosis (ALS) suffer from a rare, progressive, untreatable, and fatal neuromuscular disease. Their decision-making for life-sustaining treatments may not be fully self-deterministic. While researchers have examined resilience and self-determination in people with mental health problems and chronic illness, none have researched these variables in ALS patients from a socioecological framework. The purpose of this study was to explore the relationships between people with ALS socioecological resilience, self-determination, and decision-making for life-sustaining treatments. A cross-sectional concurrent mixed-methods design was used, with online surveys completed by 197 people with ALS who were solicited through the National ALS Registry. Qualitative content and thematic analysis revealed that people with ALS perceived burdens, disease progression, functional abilities, profound loss, quality of life, adaptability, resources, relationships, and environmental and supernatural forces contributed to their decision-making for life-sustaining treatments. Quantitative data were analyzed using binary logistic regressions, showing no significant relationships between socioecological resilience, self-determination, and decisions for life-sustaining treatments. Significant relationships were found between covariates (i.e., age, gender, military veteran status, and disease progression) and decisions for life-sustaining treatments. The positive social change implications include establishing an ecological decision-making model to improve social work services and empower decision-making. The findings also provide empirical rationales for increased socioeconomic resources to support people with ALS decisions for life-sustaining treatments.

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