A further dimension to the differing perceptions of professionals and the laity arises from a distinction that is sometimes made between disease and illness, inasmuch as the former is sometimes seen as the professional perspective, whereas illness refers to the subjective experience of patients. Although the two words are often used interchangeably, Eisenberg (1977: 11) differentiates between them as follows: ‘… patients suffer “illnesses”, physicians diagnose and treat “diseases” ’. Thus in this sense, illness refers to people’s subjective experiences, while disease refers to abnormalities of bodily organs detected, by health professionals, through objective scientific examination. The distinction between felt experience and objective abnormality is summed up succinctly by Cassell (1976: 42) as ‘Disease, then, is something an organ has; illness is something a man sic has’.

One ‘official’ definition of health is the following much-quoted and all-encompassing definition, which explains health in a positive way as ‘a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity’ (WHO 1948: 1). In contrast, despite the current rhetoric promoting ‘holistic’ care, Western medicine’s conception of health often appears instead to be disease-oriented, with less concern for its social and psychological dimensions than the WHO definition would suggest. Western medicine’s understanding of health is premised on the biomedical model of health which Nettleton (2006) describes as having the five defining characteristics listed in Box 11.1.

A sociological understanding of lay concepts of health and illness causation contributes to nursing practice in a number of ways. First, an appreciation that people have different ideas about the meaning of health and about which particular aspects of health are deemed to be important, facilitates understanding of the patients’ and carers’ standpoints, thus improving communication. In particular, when health professionals recognize that lay perspectives on health, while possibly different from the professional perspective, have a logic and rationale to them, as opposed to being simply incorrect, it engenders respect for a different point of view.

Second, understanding of the lay perspective is a necessary starting point for planning patient care, including health education and promotion. For instance, Prior et al’s (2000) study of health beliefs in two Chinese communities in England found that there were frequent references to happiness and inner contentment in their respondents’ perceptions of health. However, as Prior et al note, this focus on happiness and inner contentment, by implication also meant that:

Thus, nurses advising lifestyle changes would need to consider and attempt to work with these different priorities of what comprises good health. That is to argue that acceptance or resistance of professional advice is linked to lay people’s understandings of what it means to be healthy. In addition, acceptance or resistance of health advice is connected to ideas about responsibility for one’s own health. As we shall see later, sociological research indicates that perceptions of responsibility for one’s own health are variable and influenced by a number of factors.

The term ‘health’ carries different meanings for different people and it has been the subject of a considerable amount of sociological research, providing a complex picture of people’s everyday understandings of it. Broadly speaking, the studies indicate that ideas of health are influenced by people’s socioeconomic status, culture, religion, age, gender and previous health experience. The studies also indicate that while there are often discrepancies between expert medical conceptions of health and lay conceptions there are similarities in the ways these conceptions are arrived at, which hints again at the complexity of lay understandings. For instance, Blaxter (1983), whose studies of Scottish working class women are described below, argues that although the women’s explanations for illness causation were often scientifically wrong in their detail, by virtue of the fact that their explanations were ‘painstakingly derived from their experience as they saw it’, their methods of forming their explanations were ‘not in principle unscientific’ (Blaxter 1983: 68). That is, they were arguably using the same methods to make sense of illness as medical science uses.

The now classic sociological research into lay concepts of health and illness in the later decades of the last century conveys both the complexity of people’s ideas and, as will be shown, the ways in which the research methods used influence people’s articulation of their ideas. As a starting point, it is useful to note that the research indicates that although people’s understandings are their own personal thoughts and ideas, these ideas are intrinsically connected to their wider social milieux. That is the research findings make clear the link between what Mills (1959) termed private ‘troubles’ and public ‘issues’ inasmuch as people’s understandings are interwoven into their surrounding social structures. The influence of these social structures on lay understandings will now be considered.

The research indicates that socioeconomic status (see Chapter 6) influences people’s understanding of health and illness causation, particularly in relation to responsibility for one’s own health and also positive or negative conceptions of health. For example, Blaxter (1983) interviewed a sample of middle-aged, working class women in a Scottish city about the causes of ‘disease’ (see distinction between illness and disease above). The most commonly cited cause was infection, followed by heredity, then by environmental hazards, then a variety of other things such as the secondary effects of other diseases, stress and childbearing. It was rare for the women to see diseases as being the result of their own behaviour. A similar study, exploring lay beliefs about personal responsibility for health, was carried out in South Wales by Pill and Stott (1982), this time looking at working class women in their early 30s. As with Blaxter’s study, infection or germs were the most commonly-cited causes of disease, followed by lifestyle, heredity and stress. However, about half the women in Pill and Stott’s study employed concepts of cause that involved choice over behaving in one way or another and also a degree of individual responsibility for illness. These women were more likely to be home-owners and to have had more education than the women in Blaxter’s sample and their feeling of greater control over their lives may account for the different emphasis.

Blaxter (1983) also found that the women in her study had low expectations of health, accepting poor health as a normal part of the ageing process. Moreover, despite only being in their late 40s or 50s, they saw themselves as older than their years, a situation which Blaxter puts down to the harshness of their earlier lives. A similar study of socially disadvantaged women in Scotland by Blaxter and Paterson (1982) again identified low expectations of good health, with health being perceived in a functional way in terms of being able to carry on with normal activities such as going to work or school; there was a lack of a positive conception of health. This is a significant finding for health professionals in that people holding low expectations of health may be less likely to seek help early or to attend preventative clinics.

A study carried out by Calnan (1987) in roughly the same period, comparing social class differences in health beliefs of women in England found only a slight difference between the two groups in terms of positive and negative definitions of health. He did however find that working class women’s definitions were more likely to be ‘uni-dimensional’, or a functional definition, that is, ‘getting through the day, whereas their professional counterparts more frequently operated with multi-dimensional definitions that incorporated a wider range of elements that included being fit, being active, and the and the absence of illness’ (Calnan 1987: 35). However, Calnan also notes that this difference may reflect the social context of the interview rather than differences in ideas; that is ‘the more elaborate definition given by the professional women may only reflect their greater familiarity with circumstances where they are asked to give their views about abstract concepts, as well as the relative ease with which they are able to give articulate responses to a middle class interviewer’. Blaxter (1990: 15) also comments on the fact that in qualitative studies of lay concepts, if poorly-educated respondents are given time to elaborate on their ideas they ‘can express very fluent ideas on this topic’, which might not be elicited from a more superficial survey.

A further intriguing finding from Calnan’s (1987) study was that working class women were less likely than their middle class counterparts to accept the influence of economic circumstances on their health. For instance, when told of the findings of the recent (at that time) Black Report (see Chapter 6), Calnan (1987: 79) notes that: ‘A large group of women, almost entirely from social classes IV and V, did not believe it or did not agree with the findings’. This finding is also echoed in Blaxter’s (1993) paper, which draws on data from an earlier study.

In addition to these qualitative studies, Blaxter (1990) carried out a large national survey of the population of England, Wales and Scotland, encompassing 9000 respondents – the ‘Health and Lifestyle Survey’. This survey questioned respondents about their own health and lifestyles and their opinions and attitudes towards health and health-related behaviour. A further component of this study was a set of physiological measurements (by a nurse) to assess respondents’ fitness.

Lifestyle is a much used term, usually describing people’s behavioural ‘choices’. However, Blaxter (1990) points out that these choices are significantly influenced by people’s social and economic circumstances (see Chapter 6).

The study identified differences in conceptions of health over the life course and also gender differences. For instance, younger men tended to speak of physical strength and fitness and younger women favoured ‘ideas of energy, vitality and ability to cope’ (Blaxter 1990: 30). She found that older people, particularly men, were likely to describe health in terms of functional ability. Gender differences were also apparent in the responses to the questions: she notes that women’s answers tended to be more expansive than men’s and also that ‘many women, but few men, include social relationships in their definition of health’. Blaxter’s (1990) study also indicates that people described aspects of health, such things as contentment or happiness, within themselves even in the presence of illness.

A number of writers have also identified a moral dimension to lay understandings of health and illness causation. For instance, in the earlier mentioned study of working class women in Scotland, Blaxter and Paterson (1982) observed that health was perceived as a ‘good’ quality and few of the women described themselves as unhealthy. They also note that ‘Even more, they would not wish to say that their families were unhealthy, for this might reflect on their mothering competence’ (Blaxter & Paterson 1982: 32). Similarly, Pill and Stott (1982) identified a moral dimension to illness in that people were deemed culpable if they failed to look after each other or took unnecessary risks. Blaxter’s (1990) survey also identified moral elements in relation to health beliefs about a healthy lifestyle and also in terms of responding appropriately to illness (Links between good health and virtue are also discussed in Chapter 3).

Finally, further insight into lay perceptions of illness causation may be found in a study by Davison et al (1991) who explored lay perceptions of the causes of heart disease in relation to lifestyle in a context of a public health campaign to reduce heart disease by ‘Heartbeat Wales’, a division of the Welsh Health Promotion Authority, as it was then.

Davison et al (1991) coined the term ‘lay epidemiology’ (see also Chapter 12) to refer to the ways in which people make sense of illness episodes, usually within the family or community. Lay epidemiology includes the notion of ‘candidacy’ with regard to heart disease – that is respondents in the study indicated who they thought would be a likely candidate for this condition. In similar vein to the ways in which scientific epidemiologists study patterns of illness, the respondents would link particular instances of heart disease to the circumstances surrounding the event. From this information certain patterns were noted, which fed into respondents’ views of likely candidates for heart disease.

Davison et al’s (1991) study is a good example of the ways in which people’s ideas about disease causation stem from many different sources and also that the development of these ideas is a collective, rather than individual activity. They note that:

In making sense of, or trying to explain, illness causation, it appears that the lay population of this study have assimilated the messages from various sources with their own observations of illness episodes; however, they still see fate and luck as part of the explanatory framework. Davison et al’s (1991) study also illustrates the ways in which lay and professional people assess risk, and it is to this that we shall turn next.

The concept of ‘risk’, from both lay and professional perspectives, is an important theme in the sociology of health illness; it also permeates nursing practice and education. It is embraced by the Nursing and Midwifery Code of Professional Conduct (NMC 2004, 8) and a risk assessment is a preliminary for many nursing activities. In addition, the ability to assess and manage risk is a stated expected competency for student nurses to acquire. The environment in which nursing care is accomplished is perceived as risky for patients and also for nurses, who may fear personal injury and/or litigation. Why is this and why are some hazards identified as risks and other not? Useful insights into our understandings of risk may be gained from sociological and anthropological literature in this area.

The German sociologist Ulrich Beck (1992) describes contemporary western society as a ‘risk society’, which refers to both the particular hazards of modern society and also to people’s heightened awareness of these hazards. Beck notes that, unlike in earlier periods, risks today (particularly environmental risks) are perceived as arising from human activities, such as industrial and scientific development. In addition, he argues that the extent and nature of these modern day risks are not easily calculable and that there are disagreements among experts about the extent and nature of particular threats. He suggests that consequently scientists have lost their authority and credibility in relation to risk assessment. This loss of public trust in scientists has been exemplified recently in the conflicts over the suspected (by some scientists) link between the MMR vaccine and autism.

In similar vein, the British sociologist Anthony Giddens (1991) also describes contemporary society as a ‘risk culture’, but notes that this is not to suggest that life is more risky than in previous times. ‘Rather, the concept of risk becomes fundamental to the way both lay actors and technical specialists organize the social world’ (Giddens 1991: 3). As with Beck, Giddens (1991) refers to a decline of trust in ‘experts’ to calculate risks or provide solutions, which serves to heighten levels of anxiety (see also Chapter 12).

Both Beck and Giddens refer to the reflexive nature of contemporary society in relation to risks. Beck notes that risk awareness prompts society to critically examine its actions. While Giddens argues that in order to manage risks and avert hazards ‘the future is continually drawn into the present by means of the reflexive organization of knowledge environments’ (1991: 3). This is exemplified by the need for assessment of possible future risks in many activities, including nursing practice.

The anthropologist Mary Douglas has made a number of significant contributions to our understanding of risk by exploring the relationship between a society’s culture and its identification of and responses to perceived dangers.

Douglas (1992) reminds us that the concept of risk originally emerged in the context of calculations of probability and was neutral, whereas the idea of risk has evolved to now be associated with dangerousness. Indeed, she observes that the word risk ‘now means danger; high risk means a lot of danger’ (Douglas 1992: 24). However, she argues that what is perceived as risky is itself culturally constructed, reflecting the wider concerns of cultural groups. She notes that when individuals are required to estimate the probability and credibility of particular risks ‘they come already primed with culturally learned assumptions and weightings’ (Douglas 1992: 58). Hence, some hazards are deemed to be dangerous while others are ignored.