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Article Excerpt
Coping with disability in the family is a multifaceted endeavor entailing changes in all spheres of life. Such changes affect not only the afflicted person but also the immediate relatives. The main objective of this study is to propose a comprehensive definitional framework for the quality of life concept, based on an action systemic approach to meet the challenge suggested in the literature. The work was focused mainly on examining the suitability of the systemic quality of life model for ascertaining life quality in family members coping with chronic illness in a relative. Ninety-four subjects in 47 families with a chronically ill or disabled relative were questioned formally. The model proved to be a valid and reliable instrument for this purpose, as well as affording us a picture of both the level and structure of the quality of life. Four significant differences were revealed in the four domains of the model: personal, physical, social, and cultural. The discussion interprets the level and structure of the subjects quality of life, and deals with its significance to the intervention process.
Keywords: quality of life (QOL), disability, illness, family, coping
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The intense psychosocial impact of illness or disability has consistently been reported and regarded as a source of prolonged stress (Biegal, Sales, & Schulz, 1991; Brown & Barbarin, 1996; Campbell & Patterson, 1995; Feigin, 1994; McCubbin & McCubbin, 1993; McDaniel, Hepworth, & Doherty, 1992; Rolland, 1994). Previous studies (Bishop, 2005; Kelly & Lambert, 1992) were focused mainly on the ill/disabled person in the family while today's literature also shows an ever-growing interest in understanding the toll on body and mind of close relatives managing illness/disability in a family member. Physical, emotional, and social effects extend long after the initial diagnosis, dependency increases, and changes in lifestyle are created (Biegel et al., 1991; Brown & Barbarin, 1996; Campbell & Patterson, 1995; Feigin, 1998; Grant et al., 2004; Livneh, 2001; McDaniel et al., 1992; McDaniel, Campbell, Hepworth, & Lorenz, 2005; Power & Dell-Orto, 2004; Rolland, 1994).
A wide range of studies documents the high stress levels associated with the experience of caregiving for a chronically ill or disabled relative (Carnes & Quinn, 2005; Grant et al., 2004; Kasak, 2002; Wallsten, 2000). These works describe family coping as a many-sided endeavor that requires changes to be made in all spheres of life. With few exceptions (McPhail, 1996) the professional literature has not dealt adequately with the psychosocial implications of this type of caregiving and how it affects the care-providing family members' quality of life (QOL). McPhail (1996) gives us to understand that "illness/disability can bring something of extra quality to a family but detracts from the quality in other ways."
If, as indicated, an holistic approach could be of importance for further examining the implications of caregiving on family members' QOL, then a defining model relating to all spheres of life is needed. The model should define a broad, multidimensional QOL that would also be applicable to the specific characteristics of the population under study.
Our work is principally aimed therefore at proposing a comprehensive definitional frame for the QOL concept, based on an action systemic approach for the behavioral efforts required to meet the challenge discussed in the literature.
The contemporary term "quality of life" is used nowadays to express and define the presence of conscious events integral to the life of an individual. Felce and Perry (1996) describe "an overall general well-being comprised of objective and subjective evaluations of physical, material, social, and emotional well-being, together with the extent of personal development and purposeful activity, all weighted by a personal set of values."
Most workers in the field would probably agree that the term is "an expression of how good life is for individuals or groups of people" such as family members (Raeburn & Rootman, 1996). Measurement research on QOL is still in its early stages and the operational definitions are diverse (Felce & Perry, 1996). Bearing these different views in mind, the primary question would appear to be: how should life quality be assessed and related to the broad expanse of life?
The following three approaches are those most frequently described in the professional literature: in the first, various individuals are asked how they define their personal QOL; the second presents a definition based on the knowledge and experience of experts in the field stating what they believe constitutes personal QOL; the third-a somewhat theoretical approach--examines the concept of possible components that define the complete "life expanse" (Segal-Engelchin & Wozner, 2001; Shye, 1989).
While studying various publications on QOL, it was hardly surprising to find that common usage of the term resulted in certain ambiguities (Campo et al., 1997; VanCampen et al., 1995). Although the measurements identify a number of aspects, they reflect only a limited sampling of the full range of constituting factors and do not comprehensively address the vast extent of human experiences embodied in the concept (Fabian, 1991).
The nature of most approaches is functional and the few published conceptualizations are general because they are restricted to listing the domains relevant to QOL, for example, happiness, satisfaction, well-being, physical performance of daily and social activities, (Renwick, Brown, & Nagler, 1996), and do not specify the relationships between the various components.
QOL has been traditionally measured as an outcome variable to either evaluate the effectiveness of medical, physical, mental and rehabilitation treatment (Hollandsworth, 1988); or functional performance and improvement rate in major areas of life and across the life span. These include health, cognitive, emotional, and psychological well-being; social, educational, employment, and family status (Dolgin, Somer, Buchvald, & Zaizov, 1999; George et al., 1996; Livneh, 1988; Vanden-Boom & Lustig, 1997). QOL, as a subject, however, is viewed in the context of interrelated social and cultural trends, that is, when human life and environment are regarded as functioning in complex, interconnected patterns.
Our research work led us to propose the necessity of an holistic approach for the understanding of QOL from a systemic multi-determined perspective rather than emphasizing its specific aspects separately. In this study, we suggest the use of the systemic QOL model as an abstract, flexible, and applicable model that appears to be satisfactory as a holistic aid for understanding the QOL concept: a comprehensive definitional frame, grounded on an action systemic approach, is expounded. This method sheds light on QOL in families coping with chronic illness or disability in a relative, as perceived by the family caregivers.
THE SYSTEMIC QOL MODEL
There follows our elaboration of the Systemic Life Model-Quality of a comprehensive and all-inclusive definition as developed by Shye (1979, 1984, 1989). It has been designed to incorporate all possible aspects of human life quality in any "action system" that is stable, organized, open, and active. "In this approach, human life is regarded as an interactive organic action system whose functional components can be mapped out" (Elizur & Shye, 1990).
The QOL is a two-facet outcome model made up of four Fields of Functionality: personal, physical, social, and cultural; and four Modes of Functioning: expressive, adaptive, integrative, and conservative. The Fields...
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