Quality of Life and Psychosocial Adaptation to Chronic Illness and Acquired Disability: A Conceptual and Theoretical Synthesis

"Life, that gorgeous quality of life, is not accomplished by following another man's rules. It is true we have the same hungers and same thirsts, but they are for different things and in different ways and in different seasons. " (Patri, as quoted in Nasar, 1998). In contrast to persons with congenital disabilities, for whom research suggests that the process of body image and identity development is likely to be similar to that of children without disabilities (Grzesiak & Hicok, 1994; Livneh & Antonak, 1997; Wright, 1983), persons who experience later-onset chronic illness or acquired disability (CIAD) may find their sense of self suddenly and dramatically challenged or altered. These persons may be faced with significant changes in their social and familial relationships and life roles while dealing concurrently with psychological distress, physical pain, prolonged medical treatment, and gradually increasing interference in or restriction of the performance of daily activities (Charmaz, 1983; Livneh & Antonak). Understanding how people navigate this process of adapting to CIAD-related changes, and applying this understanding in the form of effective clinical interventions has been an important focus of rehabilitation research for several decades (Elliott, 1994; Wright & Kirby, 1999). Yet despite the decades of research committed to understanding the dynamics of psychosocial adaptation, a review of the rehabilitation literature suggests a surprising lack of conceptual clarity and limited consensus about such fundamental questions as the nature of the process of adaptation and the appropriate conceptualization of outcome (Frank & Elliott, 2000; Livneh, 1988; Livneh & Antonak, 1997; Smart, 2001; Wright & Kirby, 1999). Further, in terms of the ultimate goal of this theoretical development, the translation of theory into practice, there is little evidence that adaptation theory has effectively translated into clinical intervention (Parker, Schaller, & Hansmann, 2003). It has been suggested, for example, that few rehabilitation counselors either utilize the various existing measures of adjustment or adaptation in the counseling process, or assess the client's adaptation in terms of any extant theory (Bishop, 2001; Kendall & Buys, 1998). Rather, outside of the research context, measures specifically designed to assess adaptation rarely play a significant role in rehabilitation assessment, counseling, or planning. The failure of rehabilitation counselors to evaluate and address psychosocial adaptation in the counseling relationship likely results from a number of factors, including: (a) failure to understand the potential influence of adaptation on rehabilitation outcome; (b) failure to see the clinical utility of extant theories of adaptation in the rehabilitation relationship; and (c) a lack of familiarity with, or confusion over, the many and frequently contradictory theories or models of adaptation found in the rehabilitation counseling literature. The present article presents a model of adaptation to CIAD that may address some of these problems. In the course of the decades long exploration of the adaptation to disability process theories from fields of study outside of rehabilitation counseling have frequently contributed to both rehabilitation counseling practice and theoretical understanding. Such applications include, for example, that of Lewin's field theory (Lewin, 1951), operant learning principles (Elliott, 1994), and research from the medical sociology literature concerning the implications of chronic illness for the sense of self (Charmaz, 1983). Consistent with this approach, over the last two decades rehabilitation researchers have suggested with increasing frequency that concepts from quality of life (QOL) research may provide an appropriate framework in which to understand the adaptation process (Crewe, 1980; Livneh, 2001; Livneh, 1988; Livneh, Martz, & Wilson, 2001; Viney & Westbrook, 1982; Wright, 1983). …