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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).

The twofold purpose of this article is (a) to explore this frequently proposed but underdeveloped relationship between adaptation to disability and QOL, and (b) to propose a QOL-based model of adaptation to CIAD that has significant potential for enhancing both theoretical understanding and clinical application. This article begins with a review of those theoretical approaches to adaptation that have been prevalent in the rehabilitation counseling literature, and the theoretical and clinical limitations associated with them. It is then proposed that a QOL perspective on adaptation may be seen to both encompass the important features of these extant approaches and address many of the limitations. Following this, a specific QOL-based model of adaptation, termed disability centrality, is proposed. This model integrates concepts drawn from the QOL literature with existing models of adaptation from the rehabilitation literature. Because the proposed model relies on specific and contextual definitions of both QOL and adaptation, the definitions that are used in the proposed model are presented. Finally, the clinical implications of the proposed model are discussed.

Defining Psychosocial Adaptation

Although considerable disagreement exists concerning the specific nature of psychosocial adaptation (Livneh, 2001; Livneh & Antonak, 1997; Wright & Kirby, 1999), at a fundamental level adaptation may be conceived as a process of responding to the functional, psychological, and social changes that occur with the onset and experience of living with a disability, chronic illness, or associated treatments. This process has been characterized in terms of movement toward some variously described outcome. Researchers have conceived both the process and the outcome in a great variety of ways (e.g., DeLoach & Greer, 1981; Kendall & Buys, 1998; Linkowski, 1971; Livneh & Antonak, 1997; Wright, 1983; Wright & Kirby, 1999).

In order to suggest that QOL represents an appropriate framework for defining and understanding the adaptation process, it is first necessary to understand how adaptation has been conceptualized to date. The following discussion reviews the current and historical approaches prominent in the rehabilitation literature, the limitations that have been associated with these approaches, and some points of theoretical consensus.

Current and Historical Approaches and their Limitations

Early approaches to understanding the process of psychosocial adjustment to CID were based on a medical, or psychopathological model, and on the idea that "specific types of disabilities brought about specific types of personality characteristics or psychological problems" (Shontz, 2003, p. 178). It was believed that there existed "a direct relationship between the condition and psychosocial impairment" (Elliott, 1994, p. 231). Such theories failed, however, to reflect either the individuality or the complexity of the process of adaptation. Further, these early models neglected to consider the interaction between the individual and his or her social and physical environment. Over time, as it was increasingly observed that neither diagnosis nor degree of impairment, irrespective of other factors, served as important predictors of an individual's overall adaptation (Williamson, Schulz, Bridges, & Behan, 1994) such theories were increasingly recognized as incomplete and lacking empirical support or clinical utility.

Sequential or stage theories, in which adaptation is described in terms of movement through a predictable and terminal series of stages of adjustment, gained increasing acceptance in the 1970's and 1980's. The premise of such theories has been questioned in recent years. For example, the concept of a final stage of adjustment has repeatedly been rejected as unrealistic (Kendall & Buys, 1998; Parker et al., 2003). In addition, Kendall and Buys suggested that counselors working from this perspective may come to expect and identify as normal such reactions as depression and denial, and withhold or delay services until the client exhibits these responses according to the counselor's expectations. Stage theories have also been criticized as lacking both empirical validity (Elliott, 1994; Parker et al.), and sufficient complexity to accurately represent the adaptation process, particularly in terms of progressive conditions (Kendall & Buys; Wortman & Silver, 1989).

More recent conceptualizations represent a more complex and comprehensive approach in which emphasis is placed on the interaction between the individual and the environments in which he or she lives. The conceptual framework of adaptation proposed by Livneh and Antonak (1997) and Livneh (2001) has been described as illustrative of the differences between early and modern approaches (Shontz, 2003). Livneh and Antonak proposed that four groups of variables influence adaptation outcomes, including social-demographic variables, disability-related variables, personality attributes, and physical/social environment. The comprehensive nature of such ecological or interactive models is more congruent with the observation that psychosocial adaptation is a highly complex and individual process. However, as has been suggested about stage or phase models (Kendall & Buys, 1998), ecological models are primarily descriptive rather than predictive. Because they fail to identify the motivating force behind the generally recognized movement toward adaptation (Kendall & Buys; Linkowski, 1971), such models have limited utility in terms of informing counseling intervention.

In terms of psychometric approaches to defining and measuring adaptation outcome, the measures most commonly used in research have been criticized for their unidimensional and atheoretical nature, and their conceptual vagueness (Livneh & Antonak, 1997; Wright & Kirby, 1999). In the most frequently used measures adaptation is operationalized as a unidimensional construct, measured as, for example: (1) pathological dimensions of personality (primarily the presence of depression or anxiety); (2) physical or behavioral complaints; (3) changes in productivity or reduction in performance; or (4) degree of disability acceptance (Livneh & Antonak). These unidimensional approaches to defining adaptation fail to encompass the complex and multidimensional nature of the individual's experience.

Other criticisms of existing theories of adaptation include their relative silence with regard to the individual differences that may be associated with gender and culture. Extant measures of adaptation have also been criticized for having a negatively skewed perspective (Smart, 2001; Wright & Kirby, 1999). That is, although individuals frequently report psychologically positive aspects of living with a disability (e.g., Smart, 2001; Wright, 1983; Wright & Kirby, 1999), unidimensional and deficit-oriented measures of adaptation are unable to register this aspect of experience.

Theoretical Consensus

Despite the ongoing debate about the adaptation process and appropriate conceptualization of outcome, two points of general consensus have consistently emerged across theories. The first is that the process of adaptation to the onset of disability involves a multidimensional response. The second is that this process is highly individual and unique.

Adaptation as a multidimensional construct. Because the onset of chronic illness and disability may potentially affect a range of psychological, physical, environmental, and social domains, rehabilitation researchers have consistently suggested that adaptation to chronic illness be measured multidimensionally (e.g., Jacobson et al., 1990; Livneh & Antonak, 1997; Shontz, 1965). For example, Jacobson et al. described adaptation to chronic illness in terms of self-esteem, psychological symptoms, behavioral problems, demonstrated skills in educational and social situations, and attitudes regarding the condition. Livneh and Antonak described adaptation as comprising "(1) active participation in social, vocational, and avocational pursuits; (2) successful negotiation of the physical environment; and (3) awareness of remaining strengths and assets as well as existing functional limitations" (p. 8).

Adaptation as a subjective process. Research has also consistently indicated that significant variation exists within and across individuals in the adaptation process (Kendall & Buys, 1998). Inherent in more recent approaches to understanding the adaptation process is the subjective and phenomenological nature of the individual's response. That is, just as the condition itself fails to act as a predictor of adaptation, neither can the individual's response be predicted based on an objective analysis of specific features of either the person or the environment. Rather, the individual's personal and subjective analysis of his or her total situation appears to be the most important factor in guiding his or her response.

Adaptation Defined

Based on these points of current consensus, for the purpose of this article adaptation to CIAD is defined as the individual's personal and highly individual response to disability- or illness-related disruptions across a wide range of life domains. These disruptions may be experienced, for example, in interpersonal relationships, in interaction with the physical environment, and as changes in psychological or emotional health and function.

Because adaptation is both multidimensional and subjective, it is suggested that an appropriate measure of adaptation to CIAD is necessarily one that (a) is sufficiently broad to assess change across a range of life domains, and (b) is able to portray the individual's subjective experience of changes within those domains. For the purpose of this article it is suggested that QOL, appropriately defined, represents such a measure.

Quality of Life Defined

Because QOL has been defined in numerous ways and applied in a variety of contexts, it is incumbent on researchers to identify the specific definition for their purpose. Quality of life has been defined in terms of both subjective and objective indices. Traditionally, researchers have focused on the objective indicators. These include such externally manifested and measurable indices as employment status, income, socioeconomic status, and size of support network (Bishop & Feist-Price, 2001). However, focusing solely on objective indicators has been found to account for only a small amount of the variance in overall QOL ratings (Diener, Suh, Lucas, & Smith, 1999), and there appears to be little correlation between objective indicators and subjective measures of overall well-being, QOL, life satisfaction, or personal happiness (Michalos, 1991; Myers & Diener, 1995).

Such findings have lead to the suggestion that overall QOL is largely regulated by internal mechanisms (Gilman, Easterbrooks, & Frey, 2004) and researchers have increasingly focused on more subjective components of QOL, including for example, self-reported attitudes, perceptions, and aspirations (Gilman et al.). This focus is increasingly prevalent in the rehabilitation counseling literature (Frank-Stromberg, 1988; Noreau & Sheppard, 1995; Rubin, Chan, & Thomas, 2003).

Based on the above noted consensus that adaptation to disability represents a subjective and multidimensional process, for the present purpose QOL is defined in terms of the same characteristics. Specifically, QOL is defined as the subjective and personally derived assessment of overall well-being that results from evaluation of satisfaction across an aggregate of personally or clinically important domains. This specific definition of the broader QOL construct has alternately been referred to as subjective QOL (Frisch, 1999; Michalos, 1991) and subjective well-being (Ormel, Lindenberg, Steverink, & Verbrugge, 1999).

Inherent in this definition is the assumption that overall QOL is associated with satisfaction across a finite number of domains, or areas of life. Research on the QOL construct increasingly supports this assumption (Bowling, 1995; Cummins, 1997; Felce & Perry, 1995; Frisch, 1999). Over the last two decades, researchers in different fields of human study, and using different methodological approaches, have identified a fairly consistent set of core domains as important determinants of QOL (Bishop & Allen, 2003). Although the number of domains varies somewhat, those typically identified include (a) psychological well-being (defined in such terms as life satisfaction, and freedom from depression or anxiety); (b) physical well-being; (c) social and interpersonal well-being; (d) financial and material well-being; (e) employment or productivity, and (f) functional ability (Bishop & Allen; Felce & Perry; George & Bearon, 1980; Jalowiec, 1990).

The Disability Centrality Model

It is clear that, while not synonymous, subjective QOL and psychosocial adaptation may be said to share a number of conceptual similarities, including their multidimensional and subjective character. Based on a linking of these similar constructs, and the inclusion of additional concepts drawn from the QOL literature, the disability centrality model for measuring and understanding the impact of CIAD is proposed. The model's underlying conceptual tenets are listed below. This is followed by a brief discussion of the rationale for each tenet. Because the proposed model represents, to a great extent, an integration of existing theories, these underlying theories are described in the course of this discussion.

Conceptual Tenets

1. First, it is proposed that an individual's overall QOL represents a summative evaluation of satisfaction or well-being in a number of life domains, and particularly those that are of greater personal importance (or are more highly central) to the individual.

2. Through mechanisms originally identified by Devins (Devins et al., 1983), the onset of CIAD is proposed to result in a change in overall QOL. (Although this effect may typically be experienced as a reduction, this is not universally the case.) A reduction in overall QOL occurs to the extent that the disability, illness, or associated treatments act to reduce satisfaction in centrally important domains either by reducing the ability to participate in valued activities, roles, or relationships, or by reducing perceived control over valued outcomes.

3. People seek (and actively work) to achieve and maintain a maximal level of overall QOL, in terms of an internal and personally derived set-point. This is achieved by working to close perceived gaps between the present and the desired level of QOL.

4. As a result of this homeostatic mechanism, when an individual experiences significant negative impact from the onset of a CLAD, three potential responses, or outcomes may result: (a) importance change- People experience a shift in the importance of domains so that previously central, but highly affected domains become less central to overall QOL, and peripheral but less affected domains, in which more satisfaction may be realized, become more central; (b) control change- Through processes that increase perceived control, such as self-management, treatment, or environmental accommodation, the negative impact in important domains is reduced and these domains remain central, or; (c) neither change situation occurs, and the person continues to experience a reduced overall QOL.

Quality of Life and Centrality

To a great extent, the first tenet simply summarizes the above discussion of the definition of QOL as a subjective and multidimensional construct. There is, however, an additional idea that is critical to the proposed model and concerns the concept of importance, or centrality. In the QOL literature this concept has been referred to as domain importance.

Although there is growing consensus that people equate overall QOL with satisfaction within a limited set of life domains, it stands to reason that individuals will differ with regard to which domains are more personally meaningful or important. An individual may report a high overall level of QOL or life satisfaction, despite being dissatisfied with some specific life domains. For this reason many researchers have suggested that a single rating of overall QOL has limited practical and clinical utility (Cummins, 1996). Rather, QOL researchers have suggested that satisfaction in more highly valued areas of life will "have a greater influence on evaluations of overall [QOL] than areas of equal satisfaction but lesser importance" (Frisch, 1999, p. 56). A critical assumption underlying this perspective is that satisfaction in more important domains may mitigate, or compensate for, dissatisfaction in other areas (Campbell, Converse, & Rogers, 1976; Gladis, Gosch, Dishuk, & Crits-Christoph, 1999).

The concept of domain importance provides the rationale for the use of the term "centrality" in the proposed model. This term has been used in the social psychology, sociology, and rehabilitation literature to refer to the importance that a person attributes to a role or life domain (Quintanilla, 1991; Rosenberg, 1979; Wheaton, 1990). For example, work centrality has been defined as "the degree of general importance that working has in the life of an individual at any given point in time" (Quintanilla, p. 85). In the proposed model, the term centrality refers to the importance an individual attributes to an area of life that is altered by the onset of CIAD.

The Impact of CIAD on QOL

Among the theories in which the impact of CIAD is described in terms of QOL, Devins' theory of illness intrusiveness is perhaps the best established and the most comprehensively researched in the rehabilitation literature. In essence, Devins has posited that chronic illness acts to disrupt an individual's life, and that this disruption may be interpreted in terms of its impact on well-being, or QOL (Devins et al., 1983). Specifically, chronic illness-induced lifestyle disruptions are proposed to compromise psychosocial well-being by reducing (a) positively reinforcing outcomes of participating in meaningful and valued activities, and (b) feelings of personal control, by limiting the ability to obtain positive outcomes or avoid negative ones (Devins et al.; Devins & Shnek, 2001). Devins has further suggested that this impact can be assessed in terms of QOL domains. To assess this dynamic, Devins developed the Illness Intrusiveness Ratings Scale (IIRS; Devins et al., 1983), a self-report instrument that obtains ratings of the degree to which an illness or its treatment interfere with each of 13 life domains that were identified by Flanagan (1978) as being important to QOL. Significant empirical support for this theory has been established by Devins and other researchers over the last two decades (Devins, 1994; Devins et al., 1983; Mullins et al., 2001).

Extension of the Illness Intrusiveness Model The present model begins with Devins' fundamental assumption that QOL domains represent an appropriate format for assessing the impact of the impact of CIAD. However, based on current research in the QOL literature suggesting the importance of weighting more personally important domains, an extension of Devins' approach is proposed. Specifically, in addition to assessing the impact of CIAD in terms of QOL domains, it is also critical to understand the relative importance of each domain to the individual.

Because individuals differ in the value they place on various areas of their life, simply assessing the extent of ClAD-related disruption across a range of domains fails to take into account the differential importance of domains, and therefore provides an incomplete picture of the individual's experience. Rather, in order to effectively help an individual to adapt to these changes it is critical to understand the extent to which central versus peripheral aspects of one's QOL, and one's identity, are affected (Ryff & Essex, 1992). To a great extent the concept of domain importance, or centrality, explains why two individuals who appear objectively similar may express very different responses to the same condition.

Domain Control Devins has suggested that the impact of CIAD on QOL occurs through two mechanisms: by reducing satisfaction and by reducing control. Related to this latter mechanism, Devins further suggested that interventions that increase the individual's control over the CIAD or its treatment will act to ameliorate this impact (Devins, 1994; Devins & Shnek, 2001). This second avenue also has significant implications for clinical intervention.

The onset of CLAD, and its associated treatments, can affect personal control in myriad ways. Treatment schedules, functional limitations, changes in cognitive function and mood, and other CIAD-associated changes can lead to limitations and restrictions that reduce opportunities to engage in valued activities or achieve desired outcomes (Sidell, 1997). Conversely, research among persons with chronic illnesses suggests that interventions that increase perceived control are associated with increased psychological and behavioral well-being (Endler, Kocovski, & Macrodimitris, 2001).

With regard to such interventions, a clinically useful distinction has been suggested between primary and secondary control (Heckhausen & Schulz, 1995). Primary control refers to behaviors or cognitions that are aimed at altering the external environment and efforts to change the environment to meet the changing needs of the individual. Secondary control refers to changes in internal cognitive or psychological processes. These changes act to reduce the impact of uncontrollable and aversive realities through mechanisms such as altering expectations, disengaging from or changing unachievable goals, or reframing a negative experience in a positive way (Misajon, 2002). Rehabilitation counseling interventions aimed at assisting the client to increase control may be directed at both the external environment through, for example, environmental modification and accommodations, and the internal environment, through cognitive counseling techniques that enhance the individual's sense of control. Specific interventions in both areas are further discussed below.

Potential Response to the Impact of CIAD on QOL

Thus far it has been suggested that CIAD-related changes frequently lead to reduced overall QOL by reducing satisfaction and control in personally important domains. The final component of the disability centrality model proposes the mechanisms by which people adapt to this reduction in QOL. Specifically, based on research suggesting that a positive level of QOL is not only normative but adaptive, it is proposed that people respond to this reduction in QOL by making adaptive changes in either domain importance or domain control.

Quality of life research with adults suggests that maintaining a positive level of QOL may be vital to adaptation. For example, Diener and Diener (1995) argued that a positive subjective QOL baseline is necessary from an evolutionary perspective in that it allows for greater opportunities for social and personal advancement, exploratory behavior, and reliable coping resources. The idea that people naturally seek to improve their perceived position with regard to their goals and aspirations is suggested generally in the work of many personality theorists, including, for example, Alfred Adler (in Ansbacher & Ansbacher, 1956), Carl Rogers (1963), and Abraham Maslow (1964), all of whom described people as inherently seeking to overcome perceived personal and situational deficits. Because people seek to maintain a relatively high level of QOL, when CIAD impacts QOL an adaptive response is to be expected. In the present model it is proposed that an individual's response takes the form of one of three processes or, more likely, some combination thereof.

Importance change. When significant negative change is experienced in centrally important domains the person may engage in or experience an adaptive shift, in which the central domain becomes less valued and previously peripheral, but less affected domains gain more importance, or become more central. This form of value change was originally suggested in the acceptance of loss theory, initially described by Dembo, Leviton, and Wright (1956) and later further explicated by Wright (1960; 1983) and others (Keany & Glueckauf, 1999; Livneh, 1980). In this theory adaptation, or acceptance, is described as centering on "changes within the value system" in response to perceived losses associated with the illness or disability (Wright, 1983, p. 163). This value change "represents an awakening interest in satisfactions that are accessible, and facilitates coming to terms with what has been lost" (Wright, 1983, p. 163).

This phenomenon of an adaptive shift has also received attention in the QOL literature, and has alternately been referred to as "preference drift" (Groot & Van Den Brink, 2000), "domain compensation" (Misajon, 2002), and, most frequently "response shift" (Schwartz & Sprangers, 1999, 2000). Similar to the concept of value change, response shift represents a change in an individual's evaluation of his or her QOL resulting from either (1) a change in the individual's internal standards of measurement, (2) a change in the individual's values (i.e., in the important of domains constituting QOL), or (3) a redefinition of life quality (Schwartz & Sprangers, 1999). There is a growing body of literature and increasing empirical support associated with the response shift concept in the QOL literature (e.g., Andrykowski, Brady, & Hunt, 1993; Bach & Tilton, 1994).

Control change. The second potential response is referred to as control change. In this case, through various processes that increase personal control, the impact in central domains is reduced and these domains remain important. Whereas the loss of perceived control is associated with decreased QOL, "feelings of vulnerability and helplessness can be offset by generating a sense of personal control over the illness" or disability (Misajon, 2002, p. 48). Both of these potential responses, importance change and control change, have important clinical implications which are further discussed below.

No change. The third potential outcome is that despite a reduced level of satisfaction, no change occurs in either domain importance or sense of control and the individual continues to experience a reduction in his or her overall QOL. In this situation the individual may become involved in a cycle of increasing loss of control, decreased satisfaction, and decreasing QOL. Because the process of adapting to CIAD, as to other changes, is a continuously evolving and cyclical one (Kendall & Buys, 1998; Livneh, 2001), it is likely that all people experience a phase of inertia for some duration before the types of changes described above occur.

Clinical Implications

Abraham Maslow (1966) once quipped that when the only tool one owns is a hammer, every problem begins to resemble a nail. The rehabilitation counselor's perspective on the process of psychosocial adaptation plays a significant role in guiding both service delivery and outcome expectations. The models and theories of adaptation prevalent in the rehabilitation literature (i.e., the counselor's tools) have frequently been criticized for engendering potentially limiting or otherwise problematic counseling approaches. The following discussion describes how, as a means of assisting counselors to understand and explore adaptation with their clients, the QOL perspective in general, and the disability centrality model in particular offers a number of important advantages.

Advantages of a Quality of Life Approach

As opposed to traditional unidimensional measures of adaptation, the multidimensional QOL-framework offers counselors and their clients the opportunity to view the client's life holistically, and understand the impact of CIAD in the context of the complex interactions of personal, social, and environmental domains. This approach also has significant potential for furthering understanding of individual differences in the response to disability. For example, analyzing the impact of CIAD on QOL in terms of the unique values that may emerge from gender differences, cultural background differences, and different disability or illness types may lead to the development of more effective interventions based on these differences.

Finally, assessing adaptation across QOL domains may help counselors distinguish between positive and negative experiences in response to disability, addressing the previously identified limitation of measures that focus on and are capable of assessing only the negative aspects of disability. Thus, it may be seen that as a general framework for assessing and understanding the impact of disability, QOL assessment has the potential to offer a more realistic, comprehensive, and informative approach.

Advantages of the Disability Centrality Approach

In addition to these general advantages, the disability centrality model offers counselors a specific approach for understanding and developing individually-based counseling interventions. Essentially, the disability centrality model suggests that in order to comprehensively assess the impact of and response to disability, it is important to understand not only the level of impact experienced in different areas of life, but the importance placed upon these areas by the individual.

Rehabilitation counselors should explore the client's experience in the domains of mental health, physical health, family relations, social relations, relationship with partner or spouse, economic situation, leisure activity, and the religious or spiritual domain. Although information about the client's experiences in each of these domains is frequently discussed as a part of the intake interview, the present model offers a means of organizing this information in a way that allows for the prioritizing of interventions. For example, if work is discovered to be highly central for a client, and is also highly affected by the disability or illness, counselors may prioritize addressing work-related problems over concerns in less central areas. If, however, family relations are of primary importance, and are currently being significantly impacted, it is important that this area receive counseling attention. Indeed, until these more important issues are addressed it is less likely that vocational planning will be successful.

Counseling Interventions

The proposed model suggests that counselors can assist clients in the adaptation process by (1) helping clients to experience increased control, and (2) by exploring avenues for increasing satisfaction in currently peripheral domains. A number of interventions may be identified to enhance personal control over the illness or disability, the associated treatments, and the impact of the condition in important areas of a person's life. For example, Devins (1994; Devins and Shriek, 2000) and others have suggested the importance of self-management, or actively taking responsibility and informed control over managing one's disability or illness. Corbin and Strauss (1988) suggested that in order to effectively manage a CIAD, one must become knowledgeable about, and a participant in, one's own care. Self-management means that the client is an active and informed participant in the relationship with health care providers, adheres to and understands treatment regimens, and communicates adverse effects and questions. From the counselor's perspective, this involves helping the client (a) to actively monitor and evaluate physical and psychological well-being, and (b) to be knowledgeable about their condition and its treatment.

Counselors may also increase the client's sense of control by helping the client to first clarify and then reach domain-specific goals. For example, if the client reports experiencing little control in the dimension of social relationships, the counselor may employ social skills training to increase the client's confidence and competence in social skills. Simultaneously, the counselor can help the client identify opportunities for social interaction. This process of enhancing the sense of personal control involves promoting success by initially developing measurable and achievable subgoals, and encouraging the client for successful efforts. Finally, identifying functional and environmental accommodations at work or at home also represents a way to help the client experience increased control and mastery.

Counselors can also play a role in assisting clients in the process of adaptation by helping them to reevaluate the range and form of their participation in life domains. That is, by assisting the client to develop new interests, new social outlets, and new ways of engaging life, counselors may enable clients to increase the importance of, or satisfaction within previously peripheral domains.

Conclusion

The importance of addressing the individual's adaptation to the onset of chronic illness and disability has consistently been highlighted as an essential component in the rehabilitation process. Dell Orto (1991) underscored the importance of addressing adaptation in the clinical relationship when he suggested that the enormity of chronic illness and disability "is so pervasive, powerful, and all-encompassing that coping with, challenging, and overcoming it cannot be left to chance" (p. 333).

This article provides a practical QOL-based framework for assessing adaptation in the counseling process. This framework also provides rehabilitation counselors specific interventions for enhancing clients' control over the impact of CIAD. Although the model presented in this article is not meant to represent a finished product, this synthesis of constructs is seen as a potentially useful beginning. Research specifically aimed at assessing the validity and utility of the combined model is currently underway and further refinement of these ideas will be an important next step.

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Malachy Bishop, Ph.D., CRC, Department of Special Education and Rehabilitation, 220 Taylor Education Building 0001, University of Kentucky, Lexington, KY 40506. E-mail: mbishop@pop.uky.edu
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Date:Apr 1, 2005
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