lutz2005.pdf - QUALITATIVE Lutz, Bowers / DISABILITY HEALTH...

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10.1177/1049732305278631QUALITATIVE HEALTH RESEARCH / October 2005Lutz, Bowers / DISABILITY IN EVERYDAY LIFEDisability in Everyday LifeBarbara J. LutzBarbara J. BowersThe authors explored how persons with disabilities perceived the experience of disability intheir everyday lives. The findings suggest that the current models in the literature do notaddress disability adequately. Instead, disability was described as a multifaceted, complexexperience that is integrated into the lives of persons with disabilities. The degree to whichintegration was possiblewas influenced by three disability-related factors: (a) the fundamen-tal effects of the disabling condition, (b) others’perceptions of disability, and (c) the need forand use of resources. Important contextual conditions included the environment, time, andexperience. Ultimately, it was the match between how these persons perceived themselvesand what was important in their lives, and the influence of the three factors that determinedhow well they were able to integrate disability into their lives. The findings suggest the needfor a conceptual model that reflects the personal experience of disability.Keywords:disability; conceptual model; quality of life; person-centeredIn the past 10 years, disability has become a priority in health care research anddelivery. The Institute of Medicine, Centers for Disease Control,Healthy People2010, and the World Health Organization (WHO) have all identified disability andservices for persons with disabilities as important areas for research and targetedinterventions (Brandt & Pope, 1997; Pope & Tarlov, 1991; U.S. Department of Healthand Human Services [DHHS], 2000; WHO, 2002). Data from the U.S. NationalHealth Interview Survey indicate that disability is present in at least 13% of thenoninstitutionalized population (Brandt & Pope, 1997; Fujiura, 2001). In 1997,direct costs of disability were estimated to be approximately US $200 billion andindirect costs “may be as high as $155 billion” (Brandt & Pope, 1997, p. 61).In addition, persons with physically disabling conditions (persons with disabil-ities) face many individual “costs” of disability. They are twice as likely to be unem-ployed as persons without disabilities, and they are three times as likely to live inpoverty (National Organization on Disability, 2004). Also, because of their dis-abling conditions, persons with disabilities have a “thinner margin of health”(DeJong, Palsbo, et al., p. 267); that is, they are likely to becomemore ill more quickly1037AUTHORS’NOTE:We gratefully acknowledge the National Institute of Nursing Research (Grant num-bers F31 NR07229-01 and T32 NR07102-02) and the Rehabilitation Nursing Foundation and Sigma ThetaTau International for their support of this work. We also thank the Robert Wood Johnson Foundation(GrantNo. 23246)andthe Wisconsin Department of Health andFamily Services, Center for Delivery Sys-tems Development, for funding the original study. A special thanks to Sarah Esmond, Christine Baker,and Suzanne Zweizig for their assistance in the preparation and editing of this manuscript.

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The Sociological Imagination, The Road, Barbara J Bowers, Barbara J Lutz

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