Graduation Year

2005

Document Type

Thesis

Degree

M.S.

Degree Granting Department

Aural Rehabilitation

Major Professor

Jacqueline Hinckley, Ph.D.

Co-Major Professor

Tempii Champion, Ph.D.

Committee Member

Cheryl Paul, M.S.

Keywords

Aphasia, Qualitative methods, Ethnography

Abstract

Little is known about the perceived changes in identity and sense of self in individuals with aphasia. Seminal research using qualitative methods and personal narratives has been conducted in England regarding the experience of living with aphasia (see for instance Parr, Byng, Gilpin & Ireland, 1999; Parr, Duchan & Pound, 2003; Byng, Pound & Hewitt, 2004), but the use of such methodologies is still emergent in the United States. In addition, despite the great achievements of the disabilities movement in countries such as the U.S. and the U.K., individuals with aphasia have remained largely at the margins due to the very nature of their impairment (Pound & Hewitt, 2004). How can one reflect upon and adjust to the changes brought about by a disability when one is devoid of words?

According to Brumfitt (1993), individuals with aphasia, especially during the acute stages of recovery, have the tendency to idealize their "prior self." However are these identities transformed in relation to the acquired disability as individuals enter the chronic stages? If so, are these changes perceived in the same manner by survivors and caregivers?

The purpose of the present study was to investigate these perceptual changes in identity using a qualitative ethnographic methodology. Seven individuals with aphasia and five caregivers participated in in-depth ethnographic interviews addressing perceived changes in sense of self after the onset of aphasia. Interview analysis resulted in ethnographic narratives in which participants and caregivers reflected on their perceptions of change and adaptation to disability. Common themes included the discovery of new identities, the gradual compromise between rehabilitation and adaptation, divergent perceptions of change, and the role of support groups during the rehabilitation process. The study was concluded with reflections from the investigator and the participants on how the results from this research could be used in our clinical practice.

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