Variation and change in the meaning of oral health related quality of life: a ‘grounded’ systems approach
Introduction
This paper reports on a study of how measures of oral health related quality of life (OHRQoL) vary between and change within individuals. The study of changing assessments entailed looking at changing meaning within the broad theoretical framework of Luhmann's (Luhmann, 1984) functional structural approach to social systems.
The increased interest in health related quality of life in medicine and public health parallels changes in general quality of life. Issues of life quality have replaced concerns of about survival. However, health related quality of life remains dynamic and difficult to measure (Allison, Locker, & Feine, 1997). What quality of life means to people is central to understanding subjective views and to establishing the validity of these measures (Mallinson, 2002). If quality of life means different things to different people and can change over time, it is difficult to define and associations between clinical status and quality of life can be weak or non-existent; a phenomenon that has been described as the ‘paradox of health’ (Albrecht & Devlieger, 1999; Barsky, 1988; Sprangers & Schwartz, 1999).
Weak associations appear in numerous studies in health related quality of life (Locker & Slade, 1994; Soe, 2000; Weitzenkamp et al., 2000; Cushing, Sheiham, & Maizels, 1986; Locker (1992), Locker (1997); Rosenberg, Kaplan, Senie, & Badner, 1988; Slade, 1998). Moreover, longitudinal research indicates that people can undergo simultaneous improvement and deterioration in quality of life (Slade, 1998). While explanations for such anomalies arise from different disciplines, it has also been suggested that they emerge from the differences between health and disease, that they belong to different dimensions of human experience (Locker & Slade, 1994).
Psychological explanations for change and adaptation have focused on response shift. Based on (Golembiewski, Billingsley, & Yeager's, 1976) theory of alpha, beta and gamma change, response shift is defined as changing internal standards, values and the conceptualisation of quality of life. The same processes contribute to variations in the meaning of quality of life between individuals. Response shift may present problems in evaluating treatments or more clinically equivalent outcomes (Allison et al., 1997; Sprangers & Schwartz, 1999) in studies such as randomised controlled trials. Likewise, if quality of life instruments were to be used, without the support of clinical data to assess need in planning resource allocation, they may perpetuate inequalities and condemn people to their social roles. Response shift represents a significant advance in approaches to assessments of quality of life. It is nevertheless problematic because, unlike sociological accounts, it does not consider the relationship between the person and their environment (Bury, 1982).
The suggestion by Locker and Slade (1994) that health and disease are different domains of human experience suggests that an approach to this problem might be found within general systems theory (Von Bertalanffy, 1968). One such theoretical perspective is that of social systems theory (Luhmann, 1984). Luhmann's theory is developed from a number of strands including phenomenology, the Laws of Form (Spencer Brown, 1969) and radical constructivism (von Glasersfeld, 1984).
Health related quality of life measures are often dominated by a functional role model, and assessed through proxy measures which contain normative assumptions about health as it relates to quality of life (Higgs, Hyde, Wiggins, & Blane, 2003). Luhmann's constructivism marks a shift from structural functionalism (e.g., Parsons) to a functional structuralism. The contingent nature of Luhmann's use of function contrasts with traditional functionalism where social norms and institutions are explained by their beneficial effects on the reproduction and survival of society as a whole. For Luhmann systems are primarily communication systems, which do not evolve in any purposeful or rational way (King & Thornhill, 2003), they may or may not become functional in their interdependence with other systems. The functional structural turn in Luhmann's theory leads to the centrality of ‘emergence’ and emergent meaning. Thus methods of grounded theory could be used to look at assessments of quality of life; especially, since the method proposed by Glaser (1978) is based on the same criteria of ‘fit’ and ‘workability’ as the functionalism of Luhmann. This reversal, of theoretical approaches within modern ‘functionalism’ has yet to be applied to assessments of quality of life.
This study developed a ‘grounded systems theory’ through the integration of the grounded theory and systems theory. This framework implies that knowledge is an emergent construction rather than a pre-existing entity. Closely related to this is the fact that the construction of categories and theories is a process of two interacting levels of observation rather than the discovery of what is in the ‘data’ as a pre-existing reality. Put simply, there are the observations of the participants, and there are the secondary observations of the researcher, each of which interact in the developing theory. It follows that in grounded systems theory data analysis is specifically concerned with communications (or what people say) and how this is organised rather than discovering ‘what is out there’ (Glaser, 1978). What follows is an outline of the way grounded systems theory departs from traditional grounded theory.
Open coding in grounded theory (Glaser & Strauss, 1967) was described as a process of categorisation; little more was said about it in epistemological terms (Dey, 1999). In grounded systems theory open coding establishes the ‘indications’ people make (observations that are articulated) and looks to see how these relate to one another using a process of constant comparison. Bearing this in mine, the goal in this study was to discover the sorts of distinctions that operate in communications about oral health and how this relates to quality of life. This was not always easy, for example, what lies on the other side of what someone was saying is not always readily apparent. It was only through the constant comparison of indications to other indications that organising distinctions could emerge. Thus, where grounded theory is principally concerned with the discovery and emergence of the core category, systems theory is concerned with the discovery and emergence of the core distinction; a distinction that can organise and explain what people say rather than what they think or feel. Classic grounded theory is organised around the discovery of the core concerns of people and accounting for these by finding an adequate conceptualisation. The identification of the main concern is not only to explain the variation in the data but is also the way that the researcher strives to achieve ‘fit’ and ‘workability’ for the theory. However, seeing the search for the core category in this way does not recognise the problem of intersubjective understanding, which emerged as part of the crisis of representation in qualitative research (Denzin and Lincoln, 1994). Systems theory is based on the belief that true intersubjective understanding is impossible. Combining grounded theory with systems theory means there cannot be a search for the main concern of participants. Instead, it must search for the ‘core distinction’ underlying the participants communications. In this way the ‘core distinction’ is a construction of the observer. Most importantly it serves to organise and explain the variation in what is observed concerning change in the meaning oral health related quality of life.
As inconsistencies between clinical and subjective measures have resulted in claims of a ‘paradox of health’, it is necessary to understand how individual and environmental factors drive assessments of quality of life beyond actual clinical status. To explore the relationship between ill health and quality of life this project aimed to find out how assessments of oral health related quality of life (OHRQoL) vary between and change within individuals. The study looked at changing meaning within the broad theoretical framework of Luhmann's functional structural approach to social systems.
Section snippets
Method
Purposive sampling was used to recruit 20 male and female participants of different sex, ages and social groups. Two groups of 10 participants were recruited with similar clinical status but apparently differing responses to that status. All participants had socially visible decayed, missing or broken teeth as judged by a lay person (a non-clinical researcher) from a social distance. One group consisted of people planning to visit the dentist whilst the other consisted of people not seeking
The meaning of oral health
During the data analysis it emerged that participants’ adopted positions on seven different dimensions of the meaning of oral health. Fig. 1 shows each dimension as a range of positions along a common theme. In terms of systems theory, the adoption of a position is akin to making an indication by observing and uttering something. For example, most people talked about dentistry as a commodity either embracing or rejecting the notion that ‘health’ or ‘changed appearance’ could be ‘bought’. In
Discussion
The results of this study indicate that variation in meaning does exist in oral health related quality of life and this holds a number of implications for the applications of such measures. Potential applications of quality of life indicators include assessments of the effectiveness and efficiency of health care and the monitoring of individual patient care (Robinson, Higginson, & Carr, 2002). If quality of life assessments are used to evaluate treatments, in longitudinal studies such as
Conclusion
These data reveal that the meaning of oral health varies between people and changes over time and so demonstrate the existence of response shift in relation to quality of life. Such variation and change emerges through OHRQoL as the recursive relationship between impact and relevance, the individual and the social structure. The idea of relevance in OHRQoL has not been discussed before and some of the seven symbolic dimensions of oral health have never been included in measures of OHRQoL. We
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