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CHAPTER 1.2. DEFINING QUALITY OF LIFE AND WELL-BEING

Why do definitions matter?

2.1 Virtually every realm of public policymaking and service delivery in advanced capitalist nations is now influenced by notions of Quality of Life ( QOL) and well-being, although it is not our remit to discuss here how or why this has occurred. ¹⁰ Ager describes QOL as:

"a successful 'meme', a concept that has reproduced rapidly in response to conducive environmental conditions." ¹¹

2.2 For a range of economic, social and political reasons, QOL has emerged as a desired outcome of service delivery in mainstream and special needs education, health care, social services (particularly for disabled and elderly people) and, increasingly, for cross-cutting public sector partnership policy at all levels.

2.3 How QOL and well-being are defined has important policy implications. For this reason the QOL of life "movement" has been received with wariness or even opposition by disability campaigners. ¹²QOL has a high public profile at times, for example, concerning legal decisions over medical intervention to save very premature babies who will almost certainly be profoundly disabled, or to prolong the lives of people in a persistent vegetative state. In a quite different policy context, a psychological concept of QOL that regards aspects of an individual's personality or temperament as the determining factor may result in fewer resources being invested in improving the material circumstances of vulnerable individuals. The reform of the community care system in the UK and elsewhere brought a greater emphasis on the needs of individuals and the use of QOL as an indicator of satisfaction with services.

2.4 Because of the nature of the policy decisions being made, Rapley argues that there are "serious ethical, conceptual and philosophical difficulties" involved in studying QOL, which researchers must take very seriously. ¹³

2.5 This section aims to give an overview of the general literature on definitions and models of QOL, providing a context for the subsequent focus on definitions of QOL and well-being within culture, art and sport.

2.6 QOL is a vague and difficult concept to define, widely used, but with little consistency. Moreover it is the view of some researchers that QOL cannot be defined exactly. ¹⁴ The definition assigned to the term, and the way in which it is used, are contingent upon research objectives and context. ¹⁵ Consequently, there is a lack of consensus about its meaning. Authors from different disciplines approach the concept from the perspective of their own research interests and objectives, and so the subject of QOL research also varies widely. For example, social indicators have been developed to assess the QOL of the general populations of cities, regions or nations, while social and psychological indicators have been developed to assess the QOL of individuals, or groups of individuals with common characteristics.

2.7 "Well-being" is even more ambiguous, abstract and nebulous a term, and we shall look at its definition and relationship with QOL later. Put simply, an accepted, uniform definition of either term does not currently exist.

Why is the meaning so hard to pin down?

• The reason the term is so ambiguous is partly because of the different ways in which it is used. Its lay or common usage in public life is very loose and is based on the positive connotations of the term "quality". In contrast its usage by experts focuses more on the second dictionary definition of "quality", that is to describe the basic character or nature of something - something that may be either positive or negative. ¹⁶
• However, even amongst experts, usage of the term is extremely varied. Armstrong and Caldwell regard the significance of the concept in terms of its "rhetorical function", providing the common ground or point of articulation in many of the political debates about social and medical technological progress. ¹⁷ Keith and Schalock argue that QOL can be used in three ways: as a "sensitizing notion that provides reference and guidance", as a "social construct", and as an "organising concept" or "unifying theme". ¹⁸ Or, in the words of Keith:

"a systematic framework through which to view work aimed toward improving the lives of individuals". ¹⁹

• Reviewing the health literature, Rejeski and Mihalko distinguish between the use of the QOL concept as a psychological construct, and as an "umbrella term" for various desired (medical) outcomes. ²⁰ An awareness of how the term is being used is therefore important.
• There is a very wide range of definitions and interpretations of QOL²¹ - over 100 definitions according to Schalock. ²² It is also very common for articles about QOL not to define the concept, particularly within the medical literature. ²³ In a recent systematic review, 16 out of 68 health-related QOL models evaluated did not provide a definition of QOL. ²⁴ This common failure to define what is being measured, or alternatively to cite definitions used elsewhere without stating a preference, adds considerably to the sense of conceptual confusion. Often writers will evade issues of definition by focusing on "approaches" or skipping forward to discuss "measures" which imply a type of definition. ²⁵ Indeed this is not just an issue of evasion. Keith argues that it is the view of many researchers that QOLcannot be defined exactly, and that they are therefore more likely to choose to study various facets and dimensions of QOL rather than to attempt to define it explicitly. ²⁶
• The individual orientations of the wide range of disciplines concerned with QOL are one factor influencing definitions of QOL and explaining the diversity of definitions. ²⁷ Farquhar gives the example of public health approaches that may focus on communities, compared with medical specialist approaches that focus on the individual patient. ²⁸ Each may require a different type of definition. Raphael describes how sociologically orientated QOL researchers will choose to focus on the structure and content of groups, communities and societies, while psychology orientated researchers will prefer to look at any one of a range of individual based characteristics such as well-being, mental health etc. ²⁹ Meanwhile Scandinavian social indicators research is concerned with quantitative measures of objective standards of living and is based on a different type of QOL definition from subjective well-being research. ³⁰
• Within the literature there exists confusion about what isQOL, what contributes to QOL, and what are the outcomes of QOL. ³¹ Taillefer et al note the confusing tendency of some authors to consider everything part of QOL. ³² Unfortunately, in practice, making this distinction is not straightforward, and different authors have arrived at different conclusions:

"Happiness and a feeling of well-being will also result from QOL. When one rates his or her life as having quality, one will concurrently have a sense of self-esteem and pride regarding his or her life. It must be noted that a confounding scenario seems to be apparent with each of these consequences of quality of life in that each can contribute to, as well as result from quality of life." ³³

• And as a result:

"This means that in the current debate, there are some factors that exist both inside and outside the concept of QOL." ³⁴

• There has also been a tendency for some writers to conflate QOL with other concepts, and to use the different concepts interchangeably. The most cited examples of these are life satisfaction, happiness, well-being, health status and living conditions, all of which are sometimes used interchangeably with QOL. ³⁵ Referring to the literature of the 1970s and 1980s ( i.e. before the time period of this literature review) Meeberg cites a number of authors who define QOL "in terms of life satisfaction or satisfaction of needs", in other words authors who regard QOL as both uni-dimensional and subjective. ³⁶ Adding to the difficulties, in the early 1990s the term "health-related quality of life" emerged in distinction to "quality of life" in general. ³⁷ Incorrectly, health-related QOL and QOL are often used interchangeably. The definition of health-related QOL is considered in Annex 2.

Definitional typologies and Quality of Life models

2.8 In recent years, in an attempt to secure conceptual clarity, various researchers have produced typologies of QOL definitions.

2.9 In her taxonomy, or classification of definitions, based on a systematic review of the expert literature, Farquhar identifies three major types of QOL definition, as shown in Table 2.1. ³⁸ These are (1) general or global definitions, (2) definitions which break the concept down into a series of component parts or dimensions, and (3) definitions that focus on only one or two of the component parts recognised in the former type of definition.

Table 2.1. A taxonomy of Quality of Life definitions

Source: based on Farquhar (1995).

2.10 Global definitions are identified by Farquhar as the most common type within the expert literature. These are very general definitions that omit the possible components of QOL. Component definitions break down QOL into its constituent parts, dimensions or "domains", or identify key characteristics considered essential to evaluate QOL. These fall into two categories. The non-research specific will typically identify a number of dimensions of general QOL - both objective and subjective - although it may not claim to cover all the possible dimensions of QOL. A research-specific component definition, in contrast, is one where the writer has considered the concept of QOL specifically with regard to his or her own research focus. As a result, some possible dimensions of QOL may be overlooked or excluded from the definition because they are considered less relevant to the research focus.

2.11 The third type are focused definitions. Either explicitly or implicitly these refer to just one component, or a minority of components, of QOL. Farquhar found these to be most common in the literature relating to health and functional ability. Explicit focused definitions, for example, were found most commonly in the health-related QOL literature where researchers focus on a small number of factors considered essential to QOL, but do so openly. In contrast implicit focused definitions concentrate on one or two components of the whole concept but without making this plain. Most commonly authors will use the term QOL without defining it, but will then operationalise it in terms of one or two measures, from which the reader may interpret a definition. But as Farquhar comments, "In these circumstances it is difficult for the reader to assess how the authors fully interpret the term". ³⁹

2.12 The fourth type are combination definitions, those that are global definitions (type I) but which also specify components (type II).

2.13 In another systematic review of QOL models, Taillefer identified 3 different types:

Table 2.2. Three types of Quality of Life model

Source: Taillefer et al (2003), p. 299.

2.14 Felce and Perry add some flesh to this with their scheme of QOL models overleaf.

Figure 2.1. Conceptualisation of Quality of Life.

Source: Felce and Perry (1995) p. 55.

2.15 Finally, reviewing 22 of the most commonly used QOL indexes from around the world, Hagerty et al found that the majority were not theory based. ⁴⁰ In other words most indexes were not based on a tested conceptual model of QOL. Hagerty proposes a QOL model based on a systems-theory approach that connects public policy inputs to QOL outcomes.

Figure 2.2. Systems theory structure of Quality of Life concepts and causes

Source Hagerty et al (2001) p. 80.

The defining attributes of Quality of life

2.16 Other researchers have reviewed the literature to investigate the content of QOL in terms of the defining attributes of the term, while others still have identified a series of models of the QOL concept, in which attributes are combined within a conceptual or theoretical framework. ⁴¹

2.17 There have been a number of attempts using different methods to pin down the defining attributes of QOL, and three of these are shown in Table 2.3 below. Meeberg and Haas each used the process of concept analysis, developed by Walker and Avant to interrogate definitions drawn from a cross disciplinary review of the concept as used within healthcare. ⁴² In developing its QOL instrument, the World Health Organization ( WHO) QOL Group established an international expert review panel that identified 3 defining characteristics of QOL. ⁴³ There are clear differences of opinion over the defining attributes.

Table 2.3. Defining attributes of Quality of Life

Source: Haas (1999)a, p. 733, Meeberg (1993), p. 33 and The WHOQOL Group (1995), p. 1405.

2.18 Meeburg and Haas identified 4 and 5 defining attributes respectively. According to Haas, all 5 of these must be present to meet the definition of the concept of QOL. If some but not all of these attributes are present then the subject may be a related concept such as well-being, satisfaction with life, or health status.

2.19 Naess summarises the subjective approach to defining QOL as "the individual's experience, or perception, of how well he or she lives" ⁴⁴ In other words, QOL is exclusively about subjective well-being, rather than objective life circumstances. Haas disagrees with this view and argues that a solely subjective assessment is actually concerned with well-being, and not QOL. This would appear to cover the WHO definition, which explicitly identifies the subjective perceptions of individuals as a defining attribute of QOL.

2.20 The key attributes identified by these experts encapsulate the main debates surrounding the definition of the concept of QOL. These main areas of contention are reviewed in the next section.

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