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Rehabilitation Counseling Bulletin

DOI: 10.1177/00343552050480040301 2005; 48; 219 Rehabil Couns Bull

Malachy Bishop a Conceptual and Theoretical Synthesis

Quality of Life and Psychosocial Adaptation to Chronic Illness and Disability: Preliminary Analysis of

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RCB 48:4 pp. 219–231 (2005) 219

Quality of Life and Psychosocial

Adaptation to Chronic Illness

and Disability:

Preliminary Analysis of a Conceptual and Theoretical Synthesis

This article describes and presents an initial analysis of a quality-of-life–based model ofpsychosocial adaptation to chronic illness and disability. This model, termed disabilitycentrality, represents a conceptual and theoretical synthesis of several existing theoriesand models, drawn from the quality-of-life, rehabilitation counseling, and rehabilitationpsychology literature. The model was analyzed in a cross-sectional analysis using survey-based research among 72 college students with disabilities. The results supported the re-lationships hypothesized in the proposed model. The implications for clinical practiceand further research concerning the psychosocial adaptation process are presented.

Malachy BishopUniversity of Kentucky

The onset of chronic illness or disability (CID) is alife-changing event, signifying the beginning ofwhat will be, for most, a lifelong process of adapt-

ing to significant physical, psychological, social, and envi-ronmental changes. Understanding how people navigatethe process of adaptation and applying this understandingin the form of effective clinical interventions has been adefining focus of rehabilitation counseling research forseveral decades (Elliott, 1994; Wright & Kirby, 1999). Yetdespite the decades of research committed to understand-ing the dynamics of psychosocial adaptation to CID, andthe significant attendant body of literature, the pursuit ofa comprehensive theory of adaptation to CID continuesto be characterized by divergent views on both the natureof the process and the appropriate conceptualization ofoutcome measures (Frank & Elliott, 2000; Livneh & An-tonak, 1997; Smart, 2001; Wright & Kirby, 1999). Fur-ther, in terms of the ultimate goal of such pursuit, thetranslation of theory into clinical practice and interven-tion, there is a lack of consensus as to the relative clinicalutility of extant research (Parker, Schaller, & Hansmann,2003).

In the search for a comprehensive and clinicallymeaningful model of adaptation to disability, theories

from fields of study outside of rehabilitation have fre-quently guided and informed both clinical interventionand theoretical understanding. Such applications include,for example, that of Lewin’s field theory and operantlearning principles (Elliott, 1994; Groomes & Olsheski,2002). I suggest that the application of current conceptsin the quality-of-life (QOL) literature to existing theoriesof the process of psychosocial adaptation to CID may fur-ther theoretical understanding of this process, provide abridge from theory to clinical application, and provide auseful measure of adaptation outcome.

In the past 2 decades several rehabilitation re-searchers have proposed the existence of a relationshipbetween adaptation to CID and QOL and well-being(e.g., Crewe, 1980; Livneh, 1988, 2001; Livneh, Martz, &Wilson, 2001; Viney & Westbrook, 1982; Wright, 1983).However, with some important exceptions (Devins, 1994;Devins et al., 1983; Livneh, 2001), few researchers haveactively explored this relationship or described it in clini-cally meaningful terms.

In their respective approaches, both Livneh (2001)and Devins (1994; Devins et al., 1983; Devins, Seland,Klein, Edworthy, & Saary, 1993) have proposed that amultidimensional model of QOL may be appropriate for

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220 Rehabilitation Counseling Bulletin

understanding both the personal impact of CID and theprocess by which individuals respond to this impact.Specifically, both have suggested (a) that CID-relatedchanges can be conceived as affecting multiple areas, ordomains, of a person’s life; (b) that the extent of the im-pact of CID can be conceived in terms of a multidimen-sional framework of QOL; and (c) that the disruptioncaused by these changes results in a decrease in overallQOL. Further, in defining these changes in the context ofa QOL framework, the individual’s response to thesechanges (i.e., the adaptation process) may be defined asan attempt to increase or restore QOL.

The purpose of this article is to present a QOL-basedmodel of psychosocial adaptation to the onset of CID andto present initial results of an analysis of this model. Theproposed model, termed disability centrality, represents an extension of Devins’ illness intrusiveness approach(Devins et al., 1983; Devins, 1994) and incorporates com-ponents of several additional theories and models of adap-tation drawn from the rehabilitation literature, includingLivneh’s recently proposed conceptual framework (2001)and value change (Dembo, Leviton, & Wright, 1956; B.A. Wright, 1960, 1983). Concepts drawn from the QOLliterature, including domain importance (Cummins,1997; Frisch, 1999) and response shift (Schwartz &Sprangers, 1999), are integrated in the proposed model.Thus, although the individual components of the pro-posed model are not original, their synthesis and applica-tion in this specific context represents a new andpotentially clinically important direction for understand-ing, assessing, and effectively assisting in the process ofpsychosocial adaptation to CID.

In the following section, the disability centralitymodel is developed in terms of three underlying concepts.First, it is proposed that, when appropriately defined,QOL provides a useful framework for understanding andassessing an individual’s response to the onset of CID. Tosupport this position, the frequently proposed but under-developed relationship between adaptation and QOL isexplored. Second, Devins’s theory of illness intrusivenessis described as a foundation for understanding the waysCID-related changes may act to impact overall QOL, anda proposed extension of the illness intrusiveness approachis described. Third, the mechanisms by which people re-spond to this impact and change in QOL are presented.Finally, initial research examining the hypotheses result-ing from the proposed model is described, and the resultsare presented in terms of their implications for clinicalpractice and further research.

QUALITY OF LIFE AND PSYCHOSOCIAL

ADAPTATION

Although considerable disagreement remains concerningthe specific nature of psychosocial adaptation to CID

(Livneh & Antonak, 1997; Wright & Kirby, 1999), a re-view of the related literature suggests that consensus existson two points. First, the functional, psychological, and so-cial changes associated with the onset of CID are experi-enced across multiple dimensions of an individual’s life(Jacobson et al., 1990; Kohl, 1984; Livneh & Antonak,1997; Shontz, 1965). Second, there is significant inter-individual variation in terms of the response to thesechanges (Kendall & Buys, 1998; Williamson, 1998). Thisvariation appears to be unrelated to disability type orseverity. Indeed, a significant reason that the field movedaway from medical model–based notions about adaptationis that simply considering objectively measurable vari-ables such as the diagnosis or the degree of impairment,irrespective of other factors, has consistently failed toserve as an important predictor of an individual’s overalladaptation (Williamson, Schulz, Bridges, & Behan, 1994).More recent theories have attributed this variation to thesubjective nature of the individual’s response to a complexinteraction of factors inherent in the disability, the per-son, and the environment (Elliott, 1994; Livneh, 2001;Livneh & Antonak, 1997).

Given the multidimensional and highly subjectivenature of the adaptation to CID process, an appropriateframework for assessing and describing the individual’s re-sponse appears necessarily to be one that is (a) sufficientlybroad to capture the range of impact across life domainsand (b) able to portray the individual’s subjective per-spective of changes within those domains. This latterquality is particularly important in light of recent criti-cisms that many extant models of adaptation possess an inherent negatively skewed perspective (Smart, 2001;Wright & Kirby, 1999). That is, although it has consis-tently been demonstrated that individuals may experiencesignificant positive changes and report psychologicallybeneficial aspects of living with a disability (e.g., Smart,2001; Wright, 1983; Wright & Kirby, 1999), the unidi-mensional and deficit-oriented measures of adaptation mostfrequently used in adaptation research are unable to regis-ter this aspect of the experience. In the context of theproposed model, it is suggested that overall QOL repre-sents a uniquely appropriate framework for assessing andunderstanding the multidimensional and subjective na-ture of the adaptation process and that it has significantadvantages over existing models in its inherent sensitivityto individual differences and its ability to register bothpositive and negative experiences and responses to dis-ability.

QUALITY OF LIFE DEFINED

Given the great variety of definitions associated with QOL,and the many contexts in which the QOL construct hasbeen applied, to assert that QOL represents an appro-priate framework for understanding the process of psycho-

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Volume 48, No. 4 (Summer 2005) 221

social adaptation to CID, a specific and contextual defin-ition is required. For the purpose of the disability central-ity model, therefore, QOL is defined as the subjectivesense of overall well-being that results from an individ-ual’s evaluation of satisfaction with an aggregate of per-sonally or clinically important domains. This specific andsomewhat narrow definition of the broader QOL con-struct has been alternately referred to as subjective QOL(Cummins, McCabe, Gullone, & Romeo, 1994; Frisch,1999; Michalos, 1991) and subjective well-being (Ormel,Lindenberg, Steverink, & Verbrugge, 1999).

Inherent in this definition is the assumption thatoverall QOL is associated with, or results from, satisfac-tion across a finite number of domains, or areas of life.Research on the QOL construct increasingly supports thisassumption (Bowling, 1995; Cummins, 1997; Cummins et al., 1994; Frisch, 1999). And although there is not now,nor is there likely to be, a universal consensus on which ofthe various life domains are important contributors tooverall QOL, researchers in different fields of study, usingdifferent methodological approaches, have increasinglynoted the consistency with which a relatively small set oflife domains have been identified (Andrews & Withey,1976; Bishop & Allen, 2003; Frisch, 1999). Among themost frequently and consistently identified domains arephysical health, psychological or emotional health, socialsupport, employment or other productive activity, andeconomic or material well-being (Bishop & Allen, 2003;George & Bearon, 1980; Jalowiec, 1990; Padilla, Grant,& Ferrell, 1992).

ILLNESS INTRUSIVENESS AND A

PROPOSED EXTENSION

Among rehabilitation researchers who have described theimpact of CID in terms of QOL, Devins’s theory of illnessintrusiveness is perhaps the best established in the reha-bilitation psychology literature. However, because thistheory has received little attention in the rehabilitationcounseling literature, it is briefly described here. Devinshas posited that chronic illness acts to disrupt an individ-ual’s life and that this disruption may be interpreted interms of its impact on well-being, or QOL. Specifically,chronic illness–induced lifestyle disruptions are describedas compromising psychosocial well-being by reducing (a) positively reinforcing outcomes of participating inmeaningful and valued activities and (b) feelings of per-sonal control, by limiting the ability to obtain positiveoutcomes or avoid negative ones (Devins et al., 1983;Devins & Shnek, 2000). Illness intrusiveness theory sug-gests that this impact can be assessed in terms of QOLdomains. To assess this dynamic, Devins developed the Ill-ness 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 of13 life domains that were identified by Flanagan (1978) asbeing important to QOL. Devins and other researchershave established significant empirical support for thistheory over the last 2 decades (Devins, 1994; Devins etal., 1983; Mullins et al., 2001).

Illness intrusiveness represents an important founda-tion for the present model, which essentially extendsDevins’s theory based on recent research in the QOL lit-erature. Specifically, the following discussion defines anddescribes proposed extensions of the two mechanisms bywhich CID is proposed to reduce QOL: domain satisfac-tion and domain control.

Domain Satisfaction

In terms of understanding the individual’s response toCID-related changes, assessing the impact of these changesacross QOL domains is an important start. However, be-cause individuals differ in the value they place on the dif-ferent areas of their lives, simply assessing the extent ofCID-related disruption across a set of domains can onlyprovide an incomplete understanding. For example, forsome people the role of parent is far more important thanthe role of worker. For such people, it would be expectedthat a disability that impairs their ability to interact asthey would like to with their children will cause a greaterreduction in satisfaction and perceived control, and thusa greater reduction in overall QOL, than one that impairstheir ability to work but has little impact on their parentalrole. Indeed, for some people the latter experience, be-cause it results in increased opportunities to spend timeengaging in the more important domain (i.e., interactionwith their children), may result in an increase in overallQOL.

An extension of the illness intrusiveness model isthus proposed wherein, in addition to assessing the degreeof disruption in each domain, the domain’s importance tothe individual in terms of overall QOL is also assessed.This intuitively appealing concept that a changed level ofsatisfaction in more important domains will create a greaterimpact on overall QOL has received considerable atten-tion and empirical support in the QOL literature, where itis generally described in terms of domain importance.

Domain importance (Frisch, 1999; Pavot & Diener,1993) suggests that satisfaction in highly valued areas oflife will “have a greater influence on evaluations of over-all [QOL] than areas of equal satisfaction but lesser im-portance” (Frisch, 1999, p. 1283). Thus, a more accurateand meaningful assessment of QOL results from weightingsatisfaction in those specific life domains that are morehighly valued or important to the individual. An impor-tant assumption underlying this perspective is that satis-faction in more personally important areas of life can in fact mitigate or compensate for dissatisfaction in lessimportant areas (Campbell, Converse, & Rogers, 1976;

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222 Rehabilitation Counseling Bulletin

Gladis, Gosch, Dishuk, & Crits-Christoph, 1999). Thispremise has been supported and empirically validated bythe work of numerous researchers (e.g., Andrews &Withey, 1976; Campbell et al., 1976; Diener & Diener,1995; Michalos, 1991), and this approach to measuringQOL has been utilized in several QOL measures (Cum-mins, 1997; Ferrans & Powers, 1985; Frisch, Cornell, Vil-lanueva, & Retzlaff, 1992). Thus, one of the fundamentaltenets of the proposed model involves an extension ofDevins’s approach to include the assessment of domainimportance in addition to the perceived impact of thedisability.

The concept of domain importance provides the ra-tionale for the use of the term centrality in the proposedmodel. This term has been used in the psychological, so-ciological, and rehabilitation literature to refer to the im-portance that a person attributes to a role or life domain(Keyes, 1995; Quintanilla, 1991; Wheaton, 1990). In theproposed model, the term centrality refers to the impor-tance an individual attributes to an area of life and repre-sents the recognition that some domains are more centrallyimportant to one’s overall QOL than other, more periph-eral domains. The validity and utility of this extensionwas explored in the present study, and the clinical impli-cations are discussed in the following section.

Domain Control

Devins has referred to changes in control in terms of lim-itations in the ability to obtain positive outcomes or avoidnegative ones, thus highlighting the relationship betweencontrol and satisfaction. To varying extents, people areable to affect change in the various areas of their lives tomaintain satisfaction in the face of changing conditionsand expectations. For example, a college student who isnot happy with how well he or she is performing in schoolmay perceive that there are a number of steps that can betaken to improve performance, and hence satisfaction. Heor she can increase the amount of time spent studying,work with a tutor, or drop a difficult and unnecessarycourse.

The ways in which the onset of CID can affect feel-ings of control are as varied as the conditions themselves.Generally speaking, however, the impact on personal con-trol is experienced to the extent that the CID is perceivedas reducing options for changing unsatisfactory conditionsor outcomes. For example, for a student who begins to ex-perience seizures that affect his or her ability to spend suf-ficient time studying, the seizures have acted to reduce theavailable options for change within this domain.

Self-management is an important component in com-bating the experience of reduced control. Self-managementinvolves taking active responsibility and informed controlover understanding and managing one’s disability or ill-ness. This includes being an active and informed par-

ticipant in the relationship with health-care providers,adhering to treatment regimens, and gaining informationabout how behavior may affect the course of a disease ordisability. Higher levels of self-management have been as-sociated with increased perceived control over both ill-ness and nonillness aspects of life (Devins, 1994; Dilorio,Faherty, & Manteuffel, 1992).

Extant research also supports the existence of a posi-tive relationship between perceived control and variousindexes of adaptation (Affleck, Tennen, Pfeiffer, & Fi-field, 1987; Endler, Kocovski, & Macrodimitris, 2001;Sidell, 1997). However, to a great extent the relationshipbetween adaptation and control has received limited at-tention. In the present context, perceived domain controlis proposed to act, along with domain satisfaction, as a mediator in the relationship between the impact of CID-related changes and overall QOL. This relationshipsuggests a number of important clinical implications, par-ticularly with regard to the role of self-management in en-hancing perceived control.

VALUE CHANGE AND ADAPTATION

Thus far it has been suggested that the onset of CID fre-quently leads to a change (often but not universally a re-duction) in overall QOL by reducing opportunities forsatisfaction and control in personally important domains.The final component of the disability centrality modelproposes the mechanisms by which people adapt to thischange in QOL. Specifically, based on research suggestingthat a positive level of QOL is not only normative but alsoadaptive, I suggest that people respond to this reductionin QOL by making adaptive changes either in terms oftheir external conditions or through a process of valuechange. Conceptually similar approaches have previouslybeen suggested by Livneh (1980, 2001) and others (Demboet al., 1956; Keany & Glueckauf, 1999; Wright, 1960, 1983).

Quality of life research with adults has revealed thatmost people tend to rate their QOL as being relativelyhigh (i.e., above average or above the midpoint of mea-surement scales; Cummins, 1998, 2000). This appears tobe true, to a great extent, across cultural groups and re-gardless of objective circumstances (Cummins, 1998, 2000;Diener, Suh, Lucas, & Smith, 1999). For example, Dienerand associates have reported that to a great extent peoplein disadvantaged groups, persons with disabilities, andpeople in cross-national studies report positive well-being.Maintaining a positive level of QOL has been identifiedas not only normative but vital to adaptation. For exam-ple, Diener and Diener (1995) have argued that a positiveQOL baseline is necessary from an evolutionary perspec-tive in that it allows for greater opportunities for socialand personal advancement, exploratory behavior, and re-liable coping resources. Thus it may be said that when

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faced with significant life changes that reduce QOL, peo-ple respond with adaptive changes that allow them tomaintain a relatively high level of QOL.

One form of such change has been suggested in theacceptance of loss theory, initially described by Dembo et al. (1956) and later further explicated by Wright (1960,1983) and others (Keany & Glueckauf, 1999; Livneh,1980). In this theory, adaptation, or acceptance, is de-scribed as centering on “changes within the value system”in response to perceived losses associated with the onsetof CID (Wright, 1983, p. 163). Value change refers to theidea that individuals respond to perceived losses in onearea of life by discovering value in others. This valuechange “represents an awakening interest in satisfactionsthat are accessible, and facilitates coming to terms withwhat has been lost” (Wright, 1983, p. 163).

The phenomenon of an adaptive shift in how QOLdomains are valued by an individual has also been de-scribed in the QOL literature, where it has been referredto as “preference drift” (Groot & Van Den Brink, 2000),“domain compensation” (Misajon, 2002), and, most fre-quently, “response shift” (Schwartz & Sprangers, 1999,2000). Response shift is defined as a change in an individ-ual’s evaluation of his or her QOL resulting from either(a) a change in the individual’s internal standards of mea-surement, (b) a change in the individual’s values (i.e., inthe importance of domains constituting QOL), or (c) a re-definition of life quality (Schwartz & Sprangers, 1999).There is a growing body of literature and increasing em-pirical support associated with the response shift concept(Andrykowski, Brady, & Hunt, 1993; Bach & Tilton,1994). A study reported by Stensman (1985) comparingpersons with mobility limitations and persons with no dis-ability exemplifies this dynamic. Stensman found that al-though the two groups were similar in terms of theirratings of global QOL, the group with mobility limitationsplaced more emphasis on social function and interper-sonal relationships and less on motoric and physiologicalfunction than the group without disabilities. In this andother similar findings can be seen the “awakening interestin satisfactions that are accessible” (Wright, 1983, p. 163)among those adapting to CID-related changes.

DISABILITY CENTRALITY MODEL: CONCEPTUAL OVERVIEW

The disability centrality model represents an attempt toincorporate the concepts emerging from the precedingdiscussion in the form of a QOL-based framework for un-derstanding the changes that result from CID and the in-dividual’s process of responding to these changes. Themodel may be comprehensively stated in terms of the fol-lowing tenets:

1. When defined as a subjective and multidi-mensional construct, QOL represents anappropriate measure of the impact of CID.

2. Overall QOL represents a composite, or asummative evaluation of perceived satis-faction, across a set of life domains. Fur-ther, overall QOL is disproportionatelyinfluenced by the degree of perceived sat-isfaction within those domains that aremore important (or more central) to theindividual.

3. As suggested by Devins (1994), the onset of chronic illness or disability frequently re-sults in an initial reduction in overall QOL.This reduction occurs to the extent thatCID (a) reduces opportunities to experiencesatisfaction in centrally important areas oflife and (b) reduces feelings of personalcontrol.

4. Because overall QOL is disproportionatelyinfluenced by satisfaction in more impor-tant domains, the resulting reduction inoverall QOL depends on the degree towhich more important domains are affected.

5. People seek (and actively work) to achieveand maintain a maximal level of overallQOL, in terms of an internal and personallyderived set point. This is achieved by work-ing to close perceived gaps between thepresent and the desired level of QOL.

6. When an individual experiences a reduc-tion in QOL as a result of the impact of theonset of a CID, three potential responsesmay be seen: (a) People (either actively ornonconsciously) alter or shift the impor-tance of domains so that previously centralbut highly affected domains become lesscentral and peripheral but less affected do-mains become more central (importancechange); through processes that increaseperceived control, such as self-managementor environmental accommodation, the im-pact in important domains is reduced andthese domains remain important (controlchange); or neither change situation occurs,and the person continues to experience de-creased overall QOL.

Although each of the components of the disabilitycentrality model are individually associated with a sup-portive body of research, it remains necessary to evaluatethe combined or unified model. The presentation of themodel’s tenets above belies the complexity of the rela-tionships involved. In describing these relationships inthe form of the resulting hypotheses, both moderating and

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224 Rehabilitation Counseling Bulletin

mediating relationships are proposed. The model is pre-sented in Figure 1, using the accepted format for display-ing moderated and mediated relationships.

A number of testable hypotheses emerge from theproposed model; some can be evaluated cross-sectionally,and others will require longitudinal analysis. The follow-ing hypotheses, based on the model’s first four tenets, wereevaluated cross-sectionally in the study described below.

1. Quality of life and adaptation to CID aresignificantly and positively correlated.

2. Domain importance moderates the relation-ship between domain satisfaction and over-all QOL.

3. Domain satisfaction and domain controlmediate the relationship between impactand QOL.

4. Overall QOL, domain satisfaction, control,and importance are all negatively correlatedwith the level of perceived impact of theCID.

METHOD

Participants

The sample for this study consisted of college studentswho were receiving services through the disability re-source center at a community college in a southeasternstate. To ensure participant anonymity, staff at the re-source center were responsible for contacting students on

behalf of the researcher. During the summer of 2003, stu-dents who were on the resource center mailing list weremailed the survey instrument, along with a letter of invi-tation and description of the study. A total of 250 surveyswere mailed. A second mailing was conducted after 30days. A total of 72 responses were returned, providing aresponse rate of 28.8%.

Sixty-five percent of the sample were women (n =47). Participants identified their race/ethnicity as White(non-Hispanic; n = 59; 83.1%), African American (n = 8;11.3%), Hispanic (n = 1; 1.4%), Native American (n = 2;2.8%), or Asian or Pacific Islander (n = 1; 1.4%). The av-erage age of the participants was 31.8 years (SD = 12.3) at the time of the study and 13 years (SD = 11.9) at timeof disability or illness onset. Fourteen (20.3%) of the par-ticipants reported a congenital disability. On average,19.11 years (SD = 12.3) had passed between the time ofonset and the time of the study. The participants wereasked to identify their primary disability or illness, and therewas considerable variety in terms of the responses. Themost frequently reported conditions included attention-deficit disorder (13.8%), learning disorder (11.1%), mooddisorders (11.1%), orthopedic conditions (8.3%), and trau-matic brain injury and epilepsy (3% each). All the partic-ipants were currently enrolled in the community collegeand identified their level of education as ranging from the12th through the 16th grade.

Instruments

Three measures were used in the current study. Theseincluded the Delighted–Terrible Scale (DTS; Andrews &

FIGURE 1. Disability centrality model.

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Withey, 1976), the Ladder of Adjustment (Crewe & Krause,1990), and a measure developed specifically for the pur-pose of this study that assessed perceived satisfaction, con-trol, and importance in terms of 10 life domains (referredto below as the Domain Scale).

Delighted–Terrible Scale. Overall QOL was mea-sured using the DTS. The scale consists of seven responsecategories, ranging from terrible (1) to delighted (7). TheDTS has been used in hundreds of studies and has provedhighly valid (Andrews & Robinson, 1991). In the presentstudy, a Cronbach’s coefficient alpha of .82 was calculatedfor the DTS.

Ladder of Adjustment. The Ladder of Adjustmentis a two-item scale and has been found to correlate .71with the Multidimensional Adjustment Profile (Crewe &Krause, 1990). Reliability analysis of the Ladder of Adjust-ment in the present study showed that the scale had an ac-ceptable level (Nunnaly, 1978) of internal consistency(Cronbach’s α = .76). The Ladder was presented with thefollowing introduction:

Suppose that a person’s overall adjustment to adisability or illness could be shown on a ladderhaving 10 steps with the tenth step represent-ing the best possible adjustment and the firstrepresenting the worst possible. On what stepof the ladder would you place yourself to in-dicate your current overall adjustment (1–10)(check one)? Where on the ladder do you ex-pect yourself to be in 5 years (1–10)?

Domain Scale. The Domain Scale included fourquestions for each of 10 domains of quality of life. The do-mains were identified based on a review of the literatureand were designed to include those areas of life most fre-quently identified in multidimensional QOL instruments.The domains selected included the following (as phrasedon the questionnaire): Physical Health, Mental Health(e.g., emotional well-being, happiness, enjoyment of life),Work (or studies), Leisure Activities (e.g., sports, hobbies,things you do to relax or have fun), Financial Situation,Relationship with Your Spouse (or partner if not married),Family Relations, Other Social Relations (e.g., friends,people who offer you support), Autonomy/Independence(e.g., the ability to do the things you want, independence,freedom), and Religious/Spiritual Expression (e.g., spiri-tual health, church life, relationship with God). The par-ticipants were asked to respond to the following questionsfor each of the 10 domains based on a 7-point scale rang-ing from Not very to Very followed by the appropriate de-scriptor (e.g., “Not very important”):

1. How important is this part of your life tohow you see yourself as a person?

2. How satisfied are you with how this part ofyour life is going?

3. How much control do you have over thispart of your life?

4. How much does your illness or disabilityand/or its treatment impact your ability tofunction in this area of your life as youwould like to?

Reliability analysis of the Domain Scale showed thatthe scale had an acceptable level (Nunnaly, 1978) of in-ternal consistency (Cronbach’s α = .71), with Cronbachalphas for the four component scales ranging from .70 to.86.

Analysis

To test the hypotheses of this exploratory study, correla-tional analyses followed by a series of multiple regressionanalyses were conducted. Descriptive statistics were usedto describe the model variables. The mean ratings for do-main satisfaction, domain importance, domain impact,and domain control were calculated and used to assess themodel. Pearson product–moment correlation coefficientswere calculated among the variables of interest. To assessthe relationship between adaptation and QOL, correla-tions were computed between scores on the Ladder of Ad-justment Scale and scores on two measures of QOL, theDelighted–Terrible Scale and the mean of the participants’domain satisfaction ratings.

Tests of the proposed mediating role of satisfactionand control between impact of the CID and overall QOLwere conducted using the method described by Baron andKenny (1986). According to this method, three regressionequations are estimated. First, the mediator is regressed onthe independent variable; second, the dependent variableis regressed on the independent variable; and third, thedependent variable is regressed on both the independentvariable and the mediator. To establish mediation, the in-dependent variable must affect the mediator in the firstequation; the independent variable must affect the de-pendent variable in the second equation; and the medi-ator must affect the dependent variable in the thirdequation. If in the third equation the effect of the inde-pendent variable on the dependent variable is less than inthe second, mediation is established (Baron & Kenny,1986). In addition, the Sobel test (Sobel, 1982; Baron &Kenny, 1986) was used to determine the indirect effect of the independent variable on the dependent variablethrough the mediator. This test determines the signifi-cance of any reduction in the effect of the independent

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variable on the dependent variable when the mediator isincluded in the model.

To assess the hypothesized moderating effect of do-main importance between domain satisfaction and overallQOL, the regression with interaction procedure was used(Baron & Kenny, 1986; Holmbeck, 1997). A moderatorvariable is one that influences the relationship between apredictor variable and a criterion variable by affecting the strength or direction of the relationship (Baron &Kenny). In the present model, it was hypothesized thatthe relationship between domain satisfaction and overallQOL is stronger at higher levels of the domain impor-tance variable. Testing for a moderator effect involves atwo-step multiple regression analysis. First, the predictor(domain satisfaction) and moderator (domain importance)main effects are regressed on the criterion variable. Sec-ond, the interaction term, representing the product of thetwo main effects, was entered into the equation. Themoderator hypothesis is supported when the interaction issignificant. Due to the manner in which the interaction iscomputed, the main effects are highly correlated with theinteraction term and produce problematic multicollinear-ity effects (Holmbeck). To eliminate these effects, thepredictor and moderator variables were first centered.Centering involves subtracting the sample mean of thevariable from the variable, creating a variable in deviationscore form with a mean of zero. This transformation hasno impact on the level of significance of the interactionterms.

Prior to the multiple regression analyses, the vari-ables were inspected to determine whether assumptions ofnormality and linearity were met. Although all of themodel variables were negatively skewed, none of the skew-ness values exceeded ± 0.93 and were therefore judged ap-propriate for further analysis (Tabachnick & Fidell, 1996).Due to correlations among the potential predictor vari-ables, each regressor was normalized prior to entry into

the regression models. Normalization minimizes the de-gree of association between the variables and reduces thelikelihood that multicollinearity is distorting the estimatedparameters (Cronbach, 1987).

RESULTS

Descriptive Statistics and Correlations Among Variables

Descriptive statistics for the variables involved in testingthe proposed model are presented in Table 1. The resultsof the correlational analysis are presented in Table 2. Allcorrelations were in the predicted direction. Adaptationto disability, as measured with the Ladder of AdjustmentScale, was strongly correlated with overall QOL as mea-sured using both the DTS (r = .63, p = .001) and the meanof the domain satisfaction ratings (r = .70, p = .001). Inaddition, a multiple regression analysis in which the Lad-der of Adjustment score was regressed on the 10 separatedomain satisfaction ratings showed that domain satisfac-tion accounted for 55.4% of the variance in the adjust-ment score. Perceived impact was negatively correlatedwith overall QOL (r = −.32, p = .001), domain satisfaction(r = −.51, p = .001), and domain control (r = −.44, p =.001).

Mediation Analysis

To test the mediating role of domain satisfaction betweendomain impact and overall QOL, domain satisfaction wasfirst regressed on domain impact. This relationship wassignificant (p = .001). Second, QOL was regressed on im-pact. This relationship was also significant (p = .008).Third, QOL was regressed on both domain impact and do-main satisfaction. In this equation the relationship be-tween satisfaction and QOL was significant (p = .001),and the previously significant relationship between im-pact and QOL was no longer significant (p = .498). TheSobel test for this mediation model was highly significant(Sobel statistic = 4.074, p = .0001), further indicating themediating role of satisfaction in the relationship betweenimpact and QOL.

To test the mediating role of domain control be-tween domain impact and overall QOL, control was firstregressed on domain impact. This relationship was signif-icant (p < .001). The second equation, in which QOL wasregressed on impact, was described as significant above.Third, QOL was regressed on impact and control. In thisequation, the relationship between control and QOL wassignificant (p = .001), and the previously significant rela-tionship between impact and QOL was no longer signifi-cant (p = .539). The Sobel test for this mediation modelwas significant (Sobel statistic = 3.25, p = .001), further

TABLE 1. Participant Characteristics

Characteristic % n M SD

GenderMale 35.0 25Female 65.0 47

RaceWhite (non-Hispanic) 83.1 59African American 11.3 8Hispanic 1.4 1Native American 2.8 2Asian or Pacific Islander 1.4 1

Age at point of study 31.8 12.3

Age at time of disability or illness 13.0 11.9onset

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nificant change in R2 when the interaction term enteredthe regression equation. The results of this analysis arepresented in Table 4.

DISCUSSION

The results of this study lend initial support to those com-ponents of the proposed disability centrality model thatcan be assessed in a cross-sectional analysis. First, a signif-icant positive correlation was found between an existingmeasure of adaptation and an existing measure of overallQOL, supporting the contention that overall QOL repre-sents an appropriate measure of psychosocial adaptationto CID. Second, the mediating role of satisfaction andperceived control between the impact of CID and QOL,originally posited by Devins (1994), was supported using amodification and extension of Devins’s illness intrusive-

indicating the mediating role of control in the relation-ship between impact and QOL. The multiple regressionanalyses conducted to assess mediation are presented inTable 3.

Moderation Analysis

The test of the proposed moderating role of importance inthe relationship between domain satisfaction and overallQOL was conducted using a two-step multiple regressionanalysis. In step one, domain satisfaction (path a) and do-main importance (path b) main effects were entered intothe regression equation. In step two, the interaction term,representing the product of the two main effects, was en-tered into the equation with the main effects (path c).The hypothesized moderating effect of importance wassupported by the significant path from the interactionterm to overall QOL (p < .041; β = 1.88) and by the sig-

TABLE 2. Correlation Matrix

Variable (1) (2) (3) (4) (5) (6)

(1) QOL —

(2) Ladder .628** —

(3) Importance .013 .151 —

(4) Satisfaction .727** .699** .167 —

(5) Control .655** .601** .172 .821** —

(6) Impact −.322** −.481** −.031 −.512** −.438** —

Note. QOL = quality of life (Delighted–Terrible Scale; Andrews & Withey, 1976); Ladder = Ladder of Adjustment Scale (Crewe & Krause, 1990);Importance, Satisfaction, Control, and Impact = mean scores across domains on the Domain Scale.**p < .01.

TABLE 3. Tests of Domain Satisfaction and Domain Control as Mediating Variables Between Domain Impactand Overall QOL

Dependent variable Independent variable R2cum β SE p

Analysis 1

Step 1. Domain satisfaction Domain impact .262 .400 .083 .0002. Overall QOL Domain impact .104 .341 .124 .0083. Overall QOL Domain impact .072 .112 .498

Domain satisfaction .532 1.03 .135 .000

Analysis 2

Step1. Domain control Domain impact .192 .299 .077 .0002. Overall QOL Domain impact .104 .341 .124 .0083. Overall QOL Domain impact .069 .112 .539

Domain control .432 .975 .164 .000

Note. QOL = quality of life.

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228 Rehabilitation Counseling Bulletin

ness approach. Finally, the evidence supports the moder-ating role of domain importance between domain satis-faction and overall QOL. These findings will be describedin terms of both their clinical implications and their im-plications for further research.

Clinical Implications

Quality of Life and Adaptation. Because psy-chosocial adaptation, or the individual’s adaptive responseto the onset and experience of CID, is a critical factor in the success of the rehabilitation counseling process(Kendall & Buys, 1998; Livneh et al., 2001), assessing andunderstanding the client’s experience has consistentlybeen identified as an important counselor responsibility(e.g., Dell Orto, 1991; B. A. Wright, 1983). At the sametime, however, the clinical utility of extant theories ofadaptation has increasingly been questioned (e.g., Parkeret al., 2003) as, for a variety of reasons, theory has noteffectively translated into practice. As a result, few re-habilitation counselors either utilize the various existingmeasures of adaptation in the counseling process or assessthe client’s adaptation in terms of any extant theory(Bishop, 2001; Kendall & Buys, 1998).

The present findings of a significant positive rela-tionship between an existing measure of adaptation andthe mean of the domain satisfaction ratings both under-scores the importance of a comprehensive QOL assess-ment and suggests that such an assessment provides avalid approach to understanding the client’s current expe-riences with CID-related changes. More specific to thepresent model, the results suggest that by conducting abrief and multidimensional assessment of the four compo-nents of the proposed model (i.e., satisfaction, perceivedcontrol, the impact of CID and its treatment, and how im-portant each domain is to the individual), clinicians cangain not only a comprehensive picture of the client’s over-all level of adaptation but an individualized profile thatwill aid in rehabilitation planning and the prioritizing ofinterventions. For example, if work is discovered to behighly central for a client, and also an area in which sig-

nificant disruption is experienced, clinicians may priori-tize addressing work-related problems over concerns inless central areas.

Although the development of a refined and stan-dardized measure of disability centrality is currently underway, the proposed assessment need not involve use of sucha measure, and it could also be accomplished in the con-text of a structured interview in which the identified com-ponents (domain importance, satisfaction, control, andimpact) are assessed. In either case, it is necessary forcounselors to identify these components not only in namebut also in terms of their personal meaning to the indi-vidual. That is, satisfaction within broadly termed do-mains such as family will mean different things to differentpeople, depending on how the individual defines thedomain. Clinicians must therefore strive to establish ashared understanding of the meanings of these domains.

Satisfaction and Control. The present findingslend support to the hypothesized mediating role of per-ceived satisfaction and control in the relationship be-tween the impact of CID and overall QOL. By extension,this finding suggests that counselors can assist clients inthe adaptation process by (a) helping clients to experi-ence increased control and (b) addressing dissatisfactionwith important domains, or else (c) enlarging the aware-ness of the potential to find satisfaction in other, more pe-ripheral, domains.

Examples of interventions that may increase per-sonal control include providing illness- or disability-related information, assisting in the development of self-management skills, and developing accommodations thatallow the individual to experience more control over hisor her environment. Interventions that may assist indi-viduals in the process of response shift include helping theindividual to reevaluate the range and form of participa-tion in QOL domains. That is, by helping the individualto explore new interests, new social outlets, and new waysof engaging life, practitioners may enable clients to re-evaluate domain importance and develop increased satis-faction in previously peripheral domains.

TABLE 4. Test of the Moderating Effect of Importance Between Domain Satisfaction and QOL

Predictor variables B SE R2cum R2 Change Significance of F change

Step 1Satisfaction 0.260 .159Importance 1.104 .115 .547 .547 .000

Step 2Satisfaction 3.082 .998Importance 1.335 .780Satisfaction × Importance 0.342 .164 .577 .029 .041

Note. QOL = quality of life.

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Research Implications

Given that this article introduces an untested unifiedmodel, many research questions and hypotheses remain tobe tested through both cross-sectional and longitudinalevaluation. First, regarding the specific measure used inthe present study, referred to as the Domain Scale, furtherresearch with this measure will be necessary both to fur-ther assess the proposed model and to assess the psycho-metric adequacy of the scale. Such research will allowclinicians to utilize the measure in clinical practice.

Longitudinal research will be required to assess addi-tional hypotheses associated with the model. Specifically,in assessing people at the point of diagnosis and then atsubsequent intervals, it will be possible to statisticallyanalyze whether the hypothesized responses of controlchange and importance change do indeed produce the hy-pothesized results with regard to QOL change over time.

Finally, further research will be necessary to identifythe most appropriate domains to include in a QOL assess-ment used for the specific purpose of assessing adaptationto disability. In the further development of the disabilitycentrality model, it will be important to establish a set ofQOL domains that is large enough to include the manyareas of life that people consider important yet smallenough to make the resulting instrument clinically useful.Although research suggests that a number of universallyimportant QOL domains may be identified, group differ-ences have been found to exist in terms of the importancepeople place on the different domains based on culturalidentity (Triandis, 2000) or gender (Forest, 1996; Kessler& McLeod, 1984).

This study has a number of significant limitations,including the geographic and demographic restrictednessof the sample, the small proportion of respondents fromracial or ethnic minority backgrounds, and the reliance onself-report data. Because sampling was restricted to a rela-tively young and demographically restricted group of stu-dents with disabilities, the ability to generalize the resultsto a larger population of people with disabilities is clearlylimited. Another important limitation to be considered ininterpreting the results of this study is the relatively lowresponse rate. Internal validity was threatened by the op-erationalization of both the independent and dependentvariables in the study. Both QOL and adaptation arebroad constructs, as is perceived control, and all of thesemay be assessed by other strategies and variables.

CONCLUSION

Psychosocial adaptation to CID is a critical factor in therehabilitation counseling process, and theoretical under-standing of this process of has been a central pursuit ofrehabilitation counseling researchers for several decades.

However, the application of theory in practice has beenlimited. Further, many of the theories of adaptation thathave gained acceptance in the profession have been char-acterized by, at best, a unidimensional perspective on ahighly complex phenomenon and, at worst, by an inher-ently negative bias. The integration of current researchfrom the field of QOL, and specifically the proposed dis-ability centrality model, holds considerable promise interms of both expanding theoretical understanding andguiding counselors in the complex task of comprehensiveevaluation and treatment.

The purpose of this article was to introduce andpresent an initial assessment of a QOL-based model ofadaptation to CID. It should be noted that the model pre-sented in this article does not represent a conceptuallynovel discovery, but is rather a meaningful incorporationof several existing theories and concepts, many of whichhave been applied individually in the context of QOL orthe psychosocial adaptation process. This synthesis ofconstructs and theories, many of which are currently andcontinually being developed and revised, is presented as apotentially useful addition to the extant understanding,but it will require further research to gain validity. Fortu-nately, because of the combined nature of the model,many of the tenets are supported by existing research as-sociated with its component parts. Longitudinal researchspecifically aimed at testing the research questions andhypotheses associated with the model and further refine-ment of these ideas will be the important next step.

ABOUT THE AUTHOR

Malachy Bishop, PhD, CRC, is an assistant professor of re-habilitation counseling at the University of Kentucky. Address:Malachy Bishop, 220 Taylor Education Building, Universityof Kentucky, Lexington, KY 40506.

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