Aging with a long-term disability: A trilogy of studies
Wiley, E. Ann
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Research concerning the population of persons aging with a long-term disability including spinal cord injury and persons surviving poliomyelitis and now dealing with post polio syndrome is heavily weighted towards quantitative methods. The purpose of these three related studies was to give persons aging with a long-term disability a voice in the telling of their life narratives, to identify and examine emerging themes related to examples of occupational adaptation in their lives, and to identify ways to facilitate aging with wellness. The first study established that there is a dearth of qualitative research concerning the population of persons aging with a long-term disability and provided a synthesis of the few qualitative studies that were found. Assumptions were proposed to aid in integrating the body of knowledge elicited from these studies. The second study included initial and follow-up interviews with six individuals, three of whom had suffered SCI and three who had survived acute poliomyelitis and all of whom were at least 20 years post injury or acute disease. Based upon the participant's life narratives, major themes emerged including: influence of social and family relationships, disability issues, medical community, perspectives of self and adaptive strategies, aging and well-being, and life lessons learned. The Occupational Adaptation frame of reference (Schkade and Schultz; Schultz and Schkade, 1992) provided a model to organize the influences upon the participants' ways of dealing with aging and disability. Strategies to assist persons to adapt with wellness were identified, and occupational therapists were challenged to first listen to life narratives and then assist in the adaptation of persons in their environment. The third study used a focus group format to gather the participants from the second study. From the third study, emerging themes were environmental influences, personal factors, and aging issues. Findings showed that none of the participants reported planning for aging, none participated in a peer support group, and all suffered symptoms of over-use injuries or post polio syndrome. Recommendations for occupational therapy interventions for persons aging with a long-term disability were made.