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CHAPTER 1.3. MAIN DEBATES AT THE HEART OF QUALITY OF LIFE DEFINITIONS

3.1 Although definitions may vary, there is a great deal of consensus within the literature about the importance of certain core issues. ⁴⁵ Based on a review of cross-disciplinary conceptualisations of QOL, Raphael produced a summary of 11 key debates, which are drawn on here. He argues that the position taken on these issues is crucial when it comes to operationalising the concept and determining appropriate methods for measuring QOL. ⁴⁶ The main debates discussed here are: objective versus subjective approaches; whether QOL is a uni- or multi-dimensional concept; the role of values; the place of self-evaluation; the cultural context; and QOL as a relative or absolute concept.

Objective versus subjective approaches

3.2 Early efforts to define and measure QOL took either an economic or objective social indicators approach. But studies in the 1970s showed that objective measures of life conditions accounted for only a modest proportion of individuals' subjectively reported QOL and/or well-being. ⁴⁷ For example, Cummins reports a range of studies from the early 1970s onwards demonstrating that individuals report levels of satisfaction with where they live regardless of the objective poverty of their environment. ⁴⁸ Key amongst these were studies by Andrews and Withey and Campbell et al, which helped re-orient QOL research towards subjective measures. ⁴⁹ The prevalent use of economic indicators as measures of national QOL began to be challenged as studies refocused on subjective responses to life conditions. ⁵⁰ Sometimes referred to as the "American" social indicators approach, these studies embraced concepts such as happiness, life satisfaction, and well-being and attempted to measure these at a population level. ⁵¹ An alternative hypothesis began to be put that individual well-being might owe more to the personality or inherent disposition of individuals than to objective conditions. ⁵² Examples of the two different types of social indicator are shown in Table 3.1 below.

Table 3.1. Objective and subjective social indicators

Source: Rapley (2003) p.11

3.3 Today there is more or less a consensus around the need to combine objective with subjective aspects of QOL, based on an acknowledgment of the strengths and weaknesses of each approach. One example is EUROMODULE, a cross-national research initiative in the social indicators tradition involving research teams from 19 European nations. It uses national social surveys to collect comparative data on living conditions, welfare and QOL, and accords equal weight to objective and subjective indicators, regarded as "just two sides of the same coin." ⁵³. Many models incorporate both objective and subjective domains of QOL. ⁵⁴

"Each discipline needs to borrow insights about quality of life from the other fields. A thorough understanding of subjective well-being requires knowledge of how objective conditions influence people's evaluations of their lives. Similarly, a complete understanding of objective indicators and how to select them requires that we understand people's values, and have knowledge about how objective indicators influence people's experience of well-being". ⁵⁵

3.4 Moreover, Schalock argues that it is more productive to think in terms of a number of potential QOL indicators that can be assessed from either a subjective or objective perspective. ⁵⁶

3.5 However the debate continues about the relative importance of objective versus subjective factors in determining QOL, and about the relationship between the two . These have achieved a profile in Scottish public policy debate most recently in the discussions around national confidence, in which it is asserted that psychological factors - low self-confidence and self-esteem - may contribute significantly to many of Scotland's socio-economic problems (objective factors). ⁵⁷

3.6 For some writers subjective approaches to QOL, where the individual's experience, or perception, of how well they live is the main criteria, remain most valid. ⁵⁸ This view is sometimes based on the idealist or postmodernist view that there is no objective "reality" beyond our subjective experience of the world and that QOL reflects the subjective values held by individuals. ⁵⁹ Alternatively, within the field of mental retardation (sic) Schalock states there is "good agreement" that QOL "by its very nature, is subjective". ⁶⁰ This reflects the frame of reference of this particular area of research, which is to make services person-centred, and by improving service quality, improve the life quality of disabled people. Within this framework the subjective perceptions of disabled individuals are prioritised. ⁶¹

3.7 For ethical and moral reasons, some writers view the lack of correlation between subjective and objective factors of QOL not as a reason for disregarding objective conditions, but as an important reason for retaining them. ⁶² If a person with poor mental health lives alone in squalid conditions and rarely leaves the house, self-assesses as having a good QOL, is this a reason for leaving them to get on with it? "A definition of QOL that ignores objective assessment of life conditions may, therefore, not provide an adequate safeguard for the best interests of vulnerable and disadvantaged people." ⁶³ Other evidence from the mental health field demonstrates a strong correlation between psychological well-being and objective socio-economic factors. For example, Bowling cites the first population survey of emotional well-being, conducted by Gurin et al in the USA in 1957. Those respondents who reported being least happy with their lives were found "more likely to have psychiatric problems, to be widowed or divorced, to have less education and lower income levels, and to be black." ⁶⁴ An alternative explanation of the lack of correlation between objective and subjective dimensions of QOL is that objective life conditions - which vary widely in capitalist economies - shape individuals' expectations of what is possible and thereby condition their subjective assessment of their lives. ⁶⁵ For example, Felce and Perry argue that individuals' reports of their subjective QOL relate strongly to their personal frames of reference. These frames of reference are

"…shaped by experience. One, cannot assume that a person's frame of reference will embrace all possibilities; it is affected by the judgment of what is possible and typical for a person in that situation." ⁶⁶

3.8 As a result, Scandinavian social indicators experts argue that subjective social indicators, for example satisfaction with life, reflect people's aspirations and are therefore a measure of adaptation to current life conditions, rather than a measure of life conditions themselves. ⁶⁷

3.9 Cummins has taken the debate about subjective and objective approaches to defining QOL a step forward in his theory of subjective well-being homeostasis. ⁶⁸ Reviewing the evidence from a wide range of studies, he postulates that subjective and objective QOL are generally fairly independent. Subjective QOL, he argues, is "held under the influence of a homeo-static control", as a matter of survival, human beings have developed a sense of positivity that allow them to maintain constant levels of subjective QOL within a considerable range of objective conditions. Only when objective QOL reaches extremely low levels, for example, in the presence of chronic stress due to caring for severely disabled relatives, or long term unemployment, is this homeo-static control disrupted and subjective QOL "driven down". In these conditions objective and subjective QOL are revealed as inter-dependent, but at an individual level, this process is "influenced by cultural and individual values that have yet to be systematically explored". ⁶⁹

Quality of Life : uni-dimensional or multi-dimensional ?

3.10 While there are examples of uni-dimensional definitions of the concept of QOL, the majority of QOL definitions stress the multi-dimensional nature of the concept, typically manifested in the specification of a number of QOL domains. ⁷⁰

3.11 Uni-dimensional definitions include those where QOL is regarded as synonymous with health alone. ⁷¹ For example, Michalos cites work by Guyatt et al where QOL "is measured as a single number along a continuum, death being 0.0 and full health 1.0". ⁷² Alternatively QOL has been defined solely in terms of life satisfaction. Rejeski and Mihalko describe the "mainstream psychology" definition of QOL as being "the conscious cognitive judgement of satisfaction with one's life", a concept that has been operationalised using both uni-dimensional and multi-dimensional measures, i.e. in terms of satisfaction with life in general, or of satisfaction with specific "domains" of life considered separately. ⁷³ One of the most popular measurement instruments, devised by Andrews and Withey, consists of a single question, "How do you feel about your life as a whole?" rated on a Likert scale of life satisfaction/dissatisfaction. ⁷⁴ These types of definition are a minority.

QOL domains

3.12 There is a consensual view that, taken together, the core QOL dimensions, or domains, should sum up the concept of QOL as a whole. ⁷⁵ The number and range of individual domains specified within QOL definitions is large, although some writers note the "considerable overlap" that exists between these. ⁷⁶

3.13 A number of reviews of QOL domains have been conducted in an attempt to produce a definitive list. ⁷⁷ However the notion of incorporating a definitive standardised set of domains into QOL definitions is subject to criticism. For example, Keith argues that, as the core dimensions of QOL may vary from one culture to another, cross-cultural generalisations about QOL domains are invalid ⁷⁸ (cross-cultural issues are considered briefly below). As we shall see later on, there are also ethical and political issues surrounding the "imposition" of a pre-determined QOL definition onto individuals or communities.

3.14 Table 3.2 sets out the results of some of these reviews drawn from different disciplines, with the findings of other key works investigating core QOL domains:

• Felce suggests 6 possible QOL domains based on a synthesis of life domain areas from a range of previous QOL studies. ⁷⁹
• Schalock proposes 8 core dimensions in his conceptual model of QOL. ⁸⁰ He reports that of 125 indicators found in 16 studies of individual QOL published in the 1990s, 74.4% relate to these 8 core QOL domains. ⁸¹
• Keith refers to the consensus that has developed internationally around Schalock's model. ⁸²
• The World Health Organization QOL Assessment comprises 6 domains. ⁸³
• Hagerty et al propose 7 domains, based on a review of 22 of the most-used QOL indexes from around the world. ⁸⁴ These are advanced as "a starting point for theoretical and empirical investigation into the domain structure of QOL". ⁸⁵ While these are regarded as common to all countries, they add that other "supplementary domains" may be important to specific populations, for example "leisure" in advanced capitalist economies, and "political participation" in countries undergoing democratic reform. ⁸⁶
• Lastly, Cummins proposes 7 core domains on the basis of a review of 27 QOL definitions, and the findings of large population surveys which asked people which domains of life were important to them. ⁸⁷

Table 3.2. Quality of Life definitions - core Quality of Life domains

3.15 Other writers stress that domains identified in QOL definitions must be potentially neutral, positive or negative. ⁸⁸ This is important because " QOL measures are designed to capture the totality of life experiences, both positive and negative". ⁸⁹ It is also important because most conceptual models of QOL stress the dynamic nature of the concept. For example, in discussing their model, Felce and Perry stress that all the dimensions (domains) "are shown in dynamic interaction with each other and as potentially interdependent at all times". ⁹⁰

3.16 The nature of the relationship between subjective and objective domains of QOL, briefly described above, is clearly central to this:

"As well as affecting each other, each dimension is capable of being influenced by a range of external factors that define the individual's biological make-up, developmental and cultural history, and current environment. Such external influences might include genetic, social, and material inheritance, age and maturation, development, employment, peer influences and reference points, and other social, economic and political variables. As the three elements that define quality of life are all open to external influence, assessment of all three is necessary to any measurement system purporting to examine or rate quality of life. Knowledge of one set cannot predict another, and the relationships may not remain constant over time". ⁹¹

QOL Indicators

3.17 Schalock and Verdugo identified the 3 most common indicators for each of their 8 core QOL domains, summarised below. ⁹² These were arrived at from a reading of 9749 abstracts and 2455 articles, and an in-depth study of 897 articles that met stringent criteria and therefore provide a useful overview of the most common indicators used in each QOL domain. While Schalock in particular has developed a set of "exemplary indicators" for use by researchers in his own field, the selection of indicators is still a highly subjective process and an area of contest. ⁹³

Table 3.3. Core indicators and descriptors per core Quality of Life domain

Source: Schalock and Verdugo (2002) cited in Schalock (2004), p. 206.

Importance of personal values

3.18 A number of researchers have emphasised the important part played by the personal values and aspirations of individuals in determining their QOL. ⁹⁴ An important issue here is clearly the extent to which individual values are influenced and shaped by life conditions and experience. Felce and Perry propose a specific model of QOL that tries to integrate objective and subjective dimensions of QOL with personal values, recognising the dynamic relationship that exists between these components of QOL. ⁹⁵ They define personal values as:

"the relative importance to an individual of objective life conditions and subjective well-being with regard to a given aspect of life" ⁹⁶

and argue that this ranking of subjective and objective factors according to values be used to weight objective and subjective aspects of QOL, thus obtaining an overall QOL appraisal. ⁹⁷

3.19 Similarly in Schalock's QOL model the various core QOL dimensions are arranged hierarchically reflecting the fact that they (a) are "valued by persons differently" and (b) that "the value attached to each core dimension varies across one's life". ⁹⁸ In Schalock's model the rank order of core dimensions may change depending upon the type of individuals being investigated, and, for example, will be different for children and youth than for adults, or for elderly people. ⁹⁹ Cummins agrees, citing evidence that the priority people place on different domains:

"varies across groups according to gender and age, level of education, race and high versus low levels of overall life satisfaction" ¹⁰⁰

3.20 The part played by values is closely connected with cultural factors, reflected in Haas' observation that "the values are often culturally based but present none-the-less". ¹⁰¹ We will look at this question soon.

The capability of the individual for self-evaluation - in what conditions or circumstances is the opinion of another person necessary?

3.21 This is particularly an issue in the study of QOL of individuals who lack communication skills, such as young children, elderly people with dementia, or people with learning difficulties. Keith describes this as a potentially serious problem with efforts to assess subjective QOL. ¹⁰² The question of "inter-rater" reliability - assessing the level of agreement between "subjects" and their proxies - is crucial in QOL research at an individual level. Rapley suggests that levels of agreement tend to be higher where QOL is defined objectively and where data collection is based on observation, but lower where QOL is defined subjectively, and where carers or staff are giving their assessment of another person's subjective experience of aspects of their life. ¹⁰³

3.22 A range of studies have compared the respective assessments of QOL of patients and their doctors, of children and their carers. ¹⁰⁴ Bowling cites a study by Slevin et al which found wide discrepancies between doctors' and patients' assessment of their QOL, and concluded that doctors could not adequately measure this. ¹⁰⁵ These types of study have attempted to identify situations in which another assessment is required. This may involve surveying another person in order to make comparisons, or it may be a reason for combining objective and subjective assessments of QOL. ¹⁰⁶

3.23 Oliver cites both the positive experience of Lehman who found, in a 1983 study, that long term psychiatric patients were able to provide valid responses to QOL survey questionnaires, and the evidence of other research that found the process of rating QOL by people with mental illness is strongly influenced by their symptoms, especially their current mood state. ¹⁰⁷

Cultural context

3.24 The cultural context in which QOL definitions are developed and the "norm" to which they are referenced is also a key issue. What is considered "the good life" varies between individuals, and between different societies and cultures. It may be misleading to take a conception of QOL developed in one cultural context and apply it to other cultures or even within ethnic communities within a given geographic area. Keith argues that the core dimensions or attributes of QOL may vary from one culture to another, in which case the search for a general cross-cultural definition of QOL (which he regards as a psychological concept) may be misguided. ¹⁰⁸

3.25 Keith and Schalock have investigated what they considered to be the etic (universal) and emic (culture-bound) properties of the QOL concept, and found a surprisingly high level of agreement about the core QOL concepts across 7 countries with quite different cultures. ¹⁰⁹ Other researchers have discovered that cultural differences play a significant role in determining national levels of well-being. ¹¹⁰ Cross-cultural QOL research is regarded as complex and Keith has presented a number of "guiding principles" for QOL researchers attempting this. ¹¹¹

3.26 Cross-cultural validity was a key consideration in the development of the WHO International QOL Assessment. ¹¹² The pilot stage of development involved qualitative research with health professionals, patients and healthy persons, to explore the "meaning, variation and perceptual experience" of the QOL construct in different cultures - including the cities of Bangkok, Bath, Madras, Melbourne, Panama, St Petersburg, Seattle, Tilburg and Zagreb. ¹¹³ The final selection of QOL domains and the structure and questions of the QOL assessment were informed by this cross-cultural research.

Absolute or relative?

3.27 It is also important whether QOL is regarded as an absolute or relative concept, and if relative, to which "norm" QOL is referenced. A body of research has focused on QOL as the fulfilment or non-fulfilment of wants and needs. This type of research comes with various labels, including discrepancy theory and relative deprivation theory. ¹¹⁴ Michalos is a prominent advocate of this approach, sometimes called the "gap" approach to QOL, in which the factor of interest is the gap between an individual's present life and the standard to which they compare this. ¹¹⁵ In fact there are various types of gap theory approaches. ¹¹⁶ Schalock describes a range of approaches under the heading "goodness of fit/social policy", which see QOL as "related to a match between a person's wants and needs and their fulfilment". ¹¹⁷

3.28 Most policy approaches to measuring QOL start from the premise that there are certain objective requirements for achieving a good QOL. For example, in one type of social indicators research actual conditions are compared with "normative" criteria such as goals or values. But according to Noll, "An important precondition…is that there is political consensus first about the dimensions that are relevant for welfare, second a consensus about good and bad conditions and third about the direction in which society should move. This is of course sometimes, but not always the case." ¹¹⁸ We might add that it is easier to reach consensus in policy areas such as housing or health, than in others, like culture.

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