Dissertation Archive, WMU Graduate College

Dissertation Defense

Candidate: Carol Sundberg

Degree of: Doctor of Philosophy

Department: School of Public Affairs and Administration

Title: Examining the Meaning and Experience of Self-Determination and Its Impact on Quality of Life for Individuals with Cognitive Disabilities

Date: Wednesday, June 20, 2004 10:00 a.m.-12:00 p.m.
SPAA Conference Room

Committee: Dr. Peter Kobrak, Chair
Dr. David Hartmann
Dr. William Wiener

Abstract: Broadly defined, self-determination means having control over ones own life. The purpose of this research was to gain a better understanding of the effect of self-determination on the quality of life of persons with cognitive disabilities. A qualitative, phenomenological approach was selected. Ten individuals from a community mental health system in southwest Michigan participated in the study. Participants had a developmental disability and were dependent on others for their care. The research combined qualitative interviewing with behavioral observation and proxy interviewing. Data was processed using Ethnograph v5.0. Significant statements and observations were analyzed and reduced to common themes. A composite description of self-determination and its effect on quality of life was formulated.
While the participants in the study do not represent the perspective of all person with cognitive disabilities, they do contribute to our understanding of their experience. This study demonstrated that persons with cognitive disabilities are good informants, both willing and able to share meaningful perspective about important issues which impact their lives. A major conclusion was that self-determination is experienced more often in the minor everyday decisions about the "when, what, where and with whom" element of everyday life. The findings also address the relationship between one dimension of quality of life, emotional well-being, and self-determination. From the perspective of the individual with a cognitive disability, the absence of self-determination changed his or her perceived quality of life. A lack of self-determination was experienced on an emotional level, with fear, anxiety and stress over choices others had made. In general, the ten participants all reported a good quality of life, and a disabling condition did not appear to influence that perception of overall well-being. This study provides evidence for the disability paradox, which suggests that a person's perceptions are often discordant with one's objective status.

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