Lay Representations of Health and Illness
Health Promotion and Disease Prevention
’As long as a particular disease is treated as an evil, invincible predator, not just a disease, most people with cancer will indeed be demoralized by learning what disease they have. The solution is hardly to stop telling cancer patients the truth, but to rectify the conception of the disease, to de-mythicize it.’
Susan Sontag ( 2002: 11)
The traditional biomedical approach to illness defines it in terms of physical symptoms and underlying physical pathology. However, to the lay person, illness is a much more complicated process. In this chapter, we contrast research that has used a cognitive approach to the study of illness representations with those that have adopted phenomenological, discursive and social approaches. Whereas the former adopts a positivist perspective, the others adopt constructivist perspectives.
One of the core tenets of health psychologists is that health and illness are more than biomedical phenomena. A particular research trajectory has been to explore what ’ordinary’ people think of health and illness as a means of grasping their social and psychological dimensions. Psychologists have used a variety of theoretical perspectives to investigate popular representations of illness.
The most developed cognitive model of illness was initially proposed by Howard Leventhal and his colleagues (Leventhal et al., 1980). This was derived from their work on the impact of fear communication. They found that, irrespective of the level of fear, the message conveyed was effective if it produced a plan of action. This led them to infer that the key factor was the way the threat was represented or understood. They developed a dual processing model to accommodate the representation of fear and of the threat (Figure 15.1), an influential model that has undergone some elaboration by Leventhal et al. (2003).
Figure 15.1 Leventhal’s self-regulation model of illness cognitions and behaviour
Source: After Leventhal et al. (1980)
Basically, the model suggests that when faced with a threat the person forms a cognitive and emotional representation of that threat. They will cope with that threat depending upon the character of the threat representation. The consequences of these coping strategies will then be appraised and the representations and coping strategies revised accordingly. This model led the Leventhal group to explore how lay people represented specific threats such as illness. They conducted open-ended interviews with a sample of patients suffering from various diseases. From this information, they proposed a self-regulation model of illness that suggested that lay people’s thoughts on illness could be organized along four dimensions. Lau and Hartman (1983) suggested that since these dimensions were derived from a sample of patients with an acute, time-limited illness experience, it was necessary to introduce a fifth dimension to cover those illnesses that were resistant to treatment (Box 15.1). These five dimensions are often termed the common-sense model (CSM) of illness.
This model has provoked considerable research over the past 30 years. Indeed, it was suggested as offering a new framework for psychosomatic research (Weinman and Petrie, 1997). A major impetus to research into this CSM was the development of the Illness Perception Questionnaire (IPQ) by Weinman et al. (1996) to measure the original five illness dimensions. This measure has been used extensively on a wide range of populations with varying degrees of success. It was originally used in a longitudinal study to investigate the relationship between illness representations and work behaviour after myocardial infarction (Petrie et al., 1996). This study found that attendance at a cardiac rehabilitation course was significantly predicted by a stronger belief during admission that the illness could be cured. Return to work was predicted by perception that the illness would last a short time and have less serious consequences. In conclusion, it was argued that these popular illness beliefs ’seem to be largely formed by information before becoming ill [and] are quite consistent over time’. A meta-analysis of 45 studies using this measure found some evidence that confirmed the five-fold structure of the CSM and the relationship between the other components of the self-regulation model (Hagger and Orbell, 2003).
Box 15.1 Dimensions of Common-Sense Illness Perceptions
Identity: The signs, symptoms and the illness label.
Consequence: The perceived physical, social and economic consequences of the disease and the felt emotional consequences.
Causes: The perceived causes of the disease.
Timeline: The perceived time frame for the development and duration of the illness threat.
Cure/control: The extent to which the illness is responsive to treatment.
Sources: Leventhal et al. (1980); Lau and Hartman (1983)
A revision of this questionnaire (Revised Illness Perception Questionnaire, IPQ-R) introduced a measure of illness coherence and of emotional representations of illness (Moss-Morris et al., 2002). The former considers how the illness ’makes sense’, as a whole, to the patient. The emotional representations had been ignored in the previous model although they were explicit in the original formulation of the self-regulation model of illness. In addition, the IPQ-R divided the cure/control dimension into personal control and treatment control. This enabled the researchers to distinguish between perceived control of the illness and perceived control of the treatment.
There continues to be research to explore the structure of this cognitive model of illness representations. Researchers have attempted to expand the basic model. For example, in a study of patients undergoing surgery for coronary heart disease (Hirani et al., 2006), using the original IPQ confirmed what are considered to be the three core dimensions of the model, which they labelled illness impact (consequences), duration (timeline) and control (cure/control). They also identified a fourth dimension, labelled ’self-image’, that they argued has been ignored in much research. Hirani et al. suggest that in the same way that the IPQ-R added an additional illness coherence component to the basic cognitive model, future research should consider the overall impact of the disease on self-image.
A weakness in many early studies that have used this framework was that they were correlational. Thus, although the CSM components were found to be interrelated, they did not provide firm evidence to support the self-regulation model. More recent studies have attempted to overcome this deficiency. An example is the work by Searle et al. (2007) in which they investigated the connection between illness representations (measured by the IPQ-R), illness cognitions and coping behaviours in a prospective study of patients with Type 2 diabetes. They found that the illness representations were direct predictors of both coping cognitions and coping behaviours. In a study of patients receiving treatment for head and neck cancer, Llewellyn et al. (2007) found that beliefs about the chronicity of the disease (timeline beliefs on the IPQ) predicted depression after surgery.
Some researchers have attempted to explore in more detail the mediating processes between illness perceptions and subsequent health status. For example, in a cross-sectional study, Knibb and Horton (2008) considered the relationship between coping strategies and illness beliefs in a sample of people who suffered from an allergy. They found that those with strong personal-control coping strategies reported less emotional distress. Further, this coping strategy partly mediated the link between the illness beliefs and the illness outcome. Jansen et al. (2013) explored how illness perceptions change during the course of treatment for kidney disease. They found that that those patients on haemodialysis were more likely to believe that their treatment controls their illness, and they perceived more illness consequences than patients who were pre-dialysis. In a study of patients in a pulmonary rehabilitation programme, Fischer et al. (2010) found that those who had been diagnosed for a lengthy period were more likely to describe their illness in terms of a chronic condition (longer illness duration). After the programme, those patients who indicated positive achievement were less concerned about the consequences and had positive perceptions of perceived controllability.
It is increasingly accepted among CSM researchers that illness representations are not simply the property of individual patients, but reflect interpersonal and cultural experiences. For example, it has been found that the illness representations of patients and family are often similar (Weinman et al., 2000), reflecting their shared experiences. Further, when they differ there is evidence to suggest that this has implications for the patients. An example of the consequences of conflicting perceptions is illustrated in the study of women’s and men’s perceptions of infertility by Benyamini et al. (2009). They found different patterns in the relationship of illness perceptions between partners that were associated with different levels of distress. The highest distress was found among women who reported low levels of controllability, whereas their partner reported high controllability. An awareness of these different perceptions can be used to provide psychological counselling for couples.
There has been a growing number of studies that have used versions of the IPQ in non-English speaking countries. For example, Mo and Lau (2015) conducted a survey of illness representations of Human Swine Influenza using a Chinese version of the IPQ-R developed by Chen et al. (2008). They identified five main dimensions: consequences, emotional representations, treatment control, personal control and timeline. The dimension ’treatment control’ was associated with a higher intention to take up influenza vaccination, while psychological causal attribution (e.g., stress) was associated with a lower intention.
Kart et al. (2007) conducted an interview survey of 3,000 residents of Kathmandu, Nepal, who had been diagnosed as having diabetes. They included two standardized assessment instruments: the revised version of the Illness Perception Questionnaire (IPQ-R) and the Summary of Diabetes Self-Care Activities (SDSCA) questionnaire. Both measures were translated into Nepali. Factor analysis of the responses to the IPQ-R revealed a similar structure to that in the original formulation of the measure (Mass-Morris et al., 2002). Only the ’illness coherence’ dimension was not identified. When the participants’ ratings of the 18 causal categories in the IPQ-R were examined, it revealed three causal clusters that were again similar to those found in other countries. Despite finding such similarities, the authors were cautious in their conclusion. Their sample was educated and urban, and in many ways was unrepresentative of Nepal and more similar to people in developed countries. Also, they commented on the limitations of the quantitative assessment and concluded that there was a need for more qualitative research that could identify the particular cultural dimensions of Nepali illness representations.
A nine-item measure of illness perceptions (known as the Brief IPQ) has been developed by Broadbent et al. (2006). Articles using this measure have found relationships between illness perceptions and adjustment to illness (Price et al., 2012). Scores on the scale dimensions were also found to change following cardiac diagnosis (Devcich et al., 2008), suggesting that diagnostic tests can effect how patients perceive their illness. Wilson et al. (2011) found that burn perceptions measured using the Brief IPQ predicted recovery from the burn as assessed from clinic notes several weeks later. Sterzo and Orgeta (2017) used this measure to explore caregivers’ perceptions of dementia and found that females indicated the illness had greater consequences for their daily lives and had greater emotional impact.
Although the development of standardized measures of lay representations of illness have contributed to a large body of research in this area, it has also restricted its development. Some researchers using this framework have begun to explore other measures. For example, in a substantial study considering the differences between lay and professional representations of breathlessness, Insel et al. (2005) administered a ’Perceived Experience of Breathlessness’ scale to participants. This scale was not structured around the five dimensions of the CSM, but rather inductively from concepts people with breathlessness used to describe the experience. A network analysis was conducted to explore the relationship between these concepts. This revealed a different network for the four groups of participants such that while for those with COPD the two central concepts were ’awareness of breathing’ and ’worry about the next breath’, the pulmonologists had a single central concept, ’breathlessness’. There were similarities in some of the nodes of the network with the dimensions of the CSM. This study illustrated new ways of investigating lay representations of illness but also connections between the various dimensions. Of particular note was the conclusion that there was a need to integrate qualitative research with quantitative findings to develop a more sophisticated understanding of lay representations of illness.
Causes of Disease
Perceived cause is considered to be one of the central components in Leventhal’s original model of lay illness representations. Psychological interest in how lay people explain the onset of disease derives from attribution theory (Heider, 1958). According to the basic tenets of attribution theory, people attempt to provide a causal explanation for events in their world, particularly if those events are unexpected and have personal relevance. Thus, it is not surprising that people will generally seek a causal explanation for an illness, particularly one that is serious.
Swartzman and Lees (1996) considered the character of the causal explanations of various physical symptoms. Initial classification of the suggested causes revealed 14 categories. Multi-dimensional scaling analysis of the scores suggested three dimensions, which they labelled non-physical—physical, stable—unstable and controllable—uncontrollable. The latter two labels are comparable to two of the original attributional dimensions, while the first label is specific to explanations of illness. Physical causes included ’physical activity’ and ’physical constitution’, while non-physical causes included personality, mood and stress.
Murray and McMillan (1993a) asked a sample of over 700 adults to rate the relative importance of 24 potential causes of cancer. Factor analysis of their ratings revealed five factors:
· stress (which contained items referring to stress, worry, loneliness and unemployment);
· environment (including such items as air pollution, work conditions, asbestos, nuclear radiation, a knock or hurt, X-rays and promiscuity);
· health-related (such factors as childbirth, antibiotics, breast-feeding, virus or infection);
· behaviour (fatty foods, smoking, drinking).
Although some of these factors could be redefined along the classic attributional dimensions, others (e.g., health-related) were more specific and would suggest that people combine general and specific causal explanations.
In the development of their Revised Illness Perception Questionnaire (IPQ-R), Moss-Morris et al. (2002) identified four causal dimensions: psychological attributions, risk factors, immunity, and accident or chance. They stressed that these four factors should not be considered universal or prescriptive, but as depending upon the illness, the culture and the population.
Other recent studies have used the causal dimension scale of the IPQ to explore illness attributions. For example, Rief et al. (2004) administered an expanded version of the scale to patients with unexplained symptoms attending health care. Factor analysis of the scores identified four causal dimensions, which they labelled vulnerability, psychological, organic and stress. They found that patients with somatoform disorders scored higher on the vulnerability and organic causes. They concluded that these patients have more organically oriented illness models that would lead them to seek more health care. However, in a subsequent study the team (Hilbert et al., 2010) found that while there was a relationship between illness attributions and symptom severity when studied cross-sectionally, illness attributions did not predict symptom severity six months later.
The common-sense model of illness has attracted considerable research effort. The enthusiasm for this approach is partly explained by the development of standardized assessment instruments. Some recent research shows an interest in exploring connections with more qualitative approaches. For example, Janelle et al. (2016) compared assessment of illness perceptions using both quantitative and qualitative approaches. They concluded that the qualitative approach provided more insight into the dynamic nature of illness representations. Further, there are increasing reports of its application in clinical settings to help design treatment programmes (e.g., McAndrew et al., 2008). Despite this, there is considerable theoretical and methodological debate about this approach. The first concerns the broad limitations of the cognitivist approach with its positivist epistemological assumptions and the information-processing model of thinking. The second concerns the neglect of social and cultural factors as well as the limitations of using standardized instruments to assess a dynamic process. It is for this reason we need to explore other social and discursive approaches.
A major criticism of the cognitive approach is that it adopts an information-processing approach and loses sight of the person who is actively trying to make sense of their world. One attempt to recover the person is the phenomenological approach. Here we will briefly consider, in particular, two forms of this approach — interpretative phenomenological analysis (IPA) and the narrative approach. These approaches share epistemological constructivist assumptions and a preference for qualitative methods of investigation. It is argued that since phenomenology is concerned with exploring the participant’s perspective on the world rather than confirming that of the observer/researcher, the researcher should adopt an open-ended qualitative approach to research. The concern is with trying to understand the subjective experience of the patient in their own words.
Interpretative Phenomenological Analysis
The interpretative phenomenological analysis (IPA) approach has attracted considerable attention over the past decade. It was originally developed by Smith (1996) and has been applied extensively in health psychology. This approach argues that a human characteristic is a tendency towards self-reflection, an ongoing process in which humans try to make sense of their worlds. There is no presumed structure to this subjective experience and the challenge faced by the researcher is trying to describe the world from the perspective of the other. The primary source of information on the subjective world of the other is their verbal reports of their experiences.
Smith has provided detailed advice on how to obtain and analyse these verbal reports. In particular, he notes the importance of the researchers being explicit about their own interpretative framework. He has described this approach as being a double hermeneutic in that the researcher is trying to make sense of the patient’s sense making. It is for this reason that the approach is described as interpretative because ’a person’s thoughts are not transparently available from, for example, interview transcripts, [so, the researcher] engages in the analytic process in order, hopefully, to be able to say something about the thinking’ (Smith, 1996: 219).
A series of studies have illustrated the value of this approach for exploring the experience of illness. Kay et al. (2009) explored the experiences of young women living with Type 1 diabetes. Using IPA as their analytic frame they identified four main superordinate themes:
· The relationship with the body: this theme was concerned with how the women viewed their bodies, especially the importance of weight and how diabetes impacted on their health.
· Personal challenges: this theme was concerned with the impact of diabetes on their everyday lives.
· Impact of relationship: this theme focused especially on the impact of diabetes on relationships.
· Changing and adapting: this theme was concerned with how the young women managed the disease.
The young people are particularly concerned with the impact of the disease on their lives and on their relationships and how they manage both of these. Diabetes is perceived by the young people not as a fixed unchanging thing, but as an ongoing process with which they engage on a daily basis. The character of the experience of these young people depends upon who they are and the various supports available. It also depends upon broader societal expectations. The young women were particularly concerned with the impact of the illness on their body image and interpersonal relationships.
Diabetes is a long-term condition and the accounts of the young people in this study emphasized the importance of how they integrated the disease into their lives and their ongoing management of it. Other diseases are more life-threatening and the experiences of those suffering from them are quite different. For example, Moore et al. (2008) conducted an IPA study of a sample of women suffering from venous thromboembolic disease (VTE), a life-threatening condition. The women in their sample had received a diagnosis of inherited thrombophilia. The researchers indentified three main themes in the interviews they conducted with these women:
· Causal models: the women participants identified multi-causal models of VTE, including surgery, stress and HRT.
· Primary control efforts: there were a variety of self-protective behaviours (e.g., walking, compression tights) that reduced the risk of recurrence.
· Secondary control efforts: these were concerned with the broader acceptance of having the disease.
Once again, the IPA revealed the ongoing phenomenological process involved in having a disease, in this case a life-threatening one. The illness representations were not fixed but dynamic. The women identified a complex model of causes of the disease and linked this to their everyday lives. They talked about the reassurance provided by having established a biological cause of the disease, but the additional causes they identified meant that they could potentially exert some control over the disease. They also mentioned their anxiety about passing it on to their children, but managed that anxiety by identifying other possible, more controllable causes of the disease. The primary control strategies they mentioned were not single strategies but ongoing processes of maintaining some control over the disease and reducing the likelihood of recurrence. The third theme, labelled secondary control, was more an ongoing attitude that was in turn related to the broader social and religious beliefs of the women involved. A central theme in this study was the emphasis on the ongoing tension involved in having a life-threatening disease and still trying to lead a normal life.
Most IPA studies have used semi-structured interviews as their primary source of information about the lived experience of particular health problems. More recent studies have begun to explore additional sources of subjective information. An example is the study by Murray (2005) on the social meanings of prosthesis use. In this study, three sources of information were used: semi-structured face-to-face interviews, e-mail interviews and an analysis of the posts made on an internet discussion group. The researcher then integrated the three sources of information. In doing so he was aware of the different character of the three datasets. Murray (2005: 430) noted that:
the use of e-mail interview extracts allows the representation of temporal experiences, while the use of Listserv posts provides in a more direct way the social contexts in which the social meanings of prosthesis use arise while also supplementing the more ’public’ account of the one-on-one interview with the ’private’ accounts of persons with a common membership (see Cornwell, 1984).
From this detailed analysis of these different sources of information he identified four themes concerned with the social meaning of prosthesis use:
· prosthesis use and social rituals;
· being a leper — reactions of others;
· social meanings of concealment and disclosure;
· feelings and experiences regarding romantic and sexual relationships.
Once again, it is apparent that the experience of prosthesis use was not a fixed event but an ongoing process that the IPA study revealed was part of the person’s involvement in the social world. Thus having the prosthesis changed not only the way the person acts in the world, but also the way others act towards them. The IPA study provided a vivid description of this process that in turn the researcher interpreted. Murray drew especially on the work of Irving Goffman (1963), who described the process of stigmatization and how the person with a stigma develops a range of strategies to manage everyday social interaction. The study by Murray (2005) illustrates the value of using multiple sources of data to reveal the lived experience of people with a particular health problem.
IPA continues to attract an increasing amount of research. As an evolving approach it has also attracted discussion about its theoretical and methodological assumptions. For example, Willig (2001) noted that the concern with trying to describe cognitive or thinking processes may not be compatible with some forms of phenomenology that are concerned with non-propositional, pre-cognitive forms of knowledge. IPA is often compared with grounded theory (Glaser and Strauss, 1967), although that approach has a greater focus on method than on theory. Willig adds that grounded theory is more suitable for understanding social processes, whereas the focus of IPA is on personal experiences. Admittedly, the distinction between these foci is not very clear, as is apparent in the previously described studies.
An extensive review of the literature by Brocki and Wearden (2006) identified 55 articles using this approach, with a further seven identified subsequently. They noted a series of methodological concerns, including lack of clarity as regards the role of the researcher in data collection and analysis, the inconsistency in sample sizes in reported studies, and the role of theory in interpretation. The original developers are aware of these and other criticisms and are keen to extend discussion about refining and further developing this approach (Smith et al., 2009).
In a recent review and commentary, Smith (2011a) identified certain best practices for researchers planning to adopt this approach. These are summarized in Table 15.1. Although these practices are not specific to studies of illness, they still provide a useful guide for conducting and evaluating IPA research on illness perceptions.
In his subsequent commentary, Smith (2011b) made clear the need to connect the individual experience with the social context. As he emphasizes, ’Clearly individuals do not live in hermetically sealed bubbles. Their experience takes place in a context and is influenced by the social, historical, linguistic milieu’ (Smith, 2011b: 56). This connecting the personal experience of illness to the social context is apparent in a study of the experience of living with severe back pain by Smith and Osborn (2007). They conducted detailed interviews with six middle-aged men and women. In their analysis they placed pain as an assault on the self at the centre of their interpretation, but it is apparent from their analysis that this self is in relationship with others. Box 15.2 provides a summary of the findings. It shows that pain is conceptualized by the sufferer as a challenge to the sense of self, but this challenge is more pronounced in the presence of others.
Box 15.2 Pain as an Assault on the Self
The negative impact of pain on the self
This theme describes the effect of pain on a patient’s sense of self and identity:
It’s not who I am it’s just who I am if you know what I mean, it’s not really me, I get like that and I know like, you’re being mean now but I can’t help it. It’s the pain, it’s me, but it is me, me doing it but not me do you understand what I’m saying?
Continuum and trajectory?
This theme describes the possibility of a developmental process beginning with a fight to retain a positive self, then beginning to doubt this and finally being resigned to a less desirable self:
It’s like living with this guy who follows you around all the time […] You’re cursed with him and he gets in the way, he embarrasses me, he’s unsociable and sometimes downright rude.
The public arena makes it worse
This theme describes the negative effect of pain in the presence of others:
I’d love that [being alone on a desert island] […] but to be away from people and not have to be something else you’re not, that would be bliss.
Directing it at others
This theme describes how the negativity about the pain becomes directed at others:
If something sad happens to someone, I’m not sad, sometimes I’m pleased.
The sting in the tail
This theme is concerned with the fear of social judgement being strong:
I need to be careful about people and a bit worried what’s going to happen to me. Are we all going to get rounded up and taken to a camp somewhere?
Source: Smith and Osborn (2007)
More recent research by Smith has included more attention to the social aspects of the experience of illness. For example, Smith et al. (2017b) explored the experience of living with an ileostomy. Analysing the interview with participants, they identified two main themes, which they labelled intrapersonal and interpersonal. The former was concerned with the impact of an ileostomy on the sense of self, while the latter concerned its impact on relationships. This concern with personal and social factors is apparent in other IPA studies. For example, in their study of stroke among young women, Leahy et al. (2016) identified four themes. The first two (’stroke is an illness of later life’, which is concerned with how the participant was confused with the diagnosis of stroke, and ’post stroke selves’, which was feelings of loss and anxiety) were more personal concerns. The other two themes (’a desire for peer support’ and ’the impact of stroke on relationships’) focused on more social concerns.
Another phenomenological approach is that of narrative psychology. According to narrative psychologists (e.g., Sarbin, 1986), narrative construction is an intrinsic part of making sense of the world. The process of creating a narrative enables the person to give meaning to their constantly changing world. Before the narrative there is merely a disjointed sequence of events. In creating the narrative, the person selects some pieces of information and ignores others and pieces a story together. Admittedly, this process is not conducted in isolation but as part of a wider process of social engagement. There is growing interest in the use of narrative to further understand illness experience (see Sools et al., 2015).
According to narrative psychology, people generate stories about illness experiences (Murray, 1999). The construction of these narrative accounts enables the person to grasp its meaning and to begin to exert some control over it. The character of these stories varies depending upon a variety of factors, such as previous experience and public repertoires. In terms of orientation, some stories may offer the prospect of advancement, while others are more pessimistic. In terms of emotional valence, some stories may convey excitement, whereas others are more placid or depressing.
Research into illness narratives was initially taken up by medical sociologists and anthropologists. Frank (1993) suggested that the central point in any crisis narrative is an epiphany, when the actors begin to reassess their position in the world. This can occur at any time during the course of an illness, but subsequently the sick person sees the illness in a new light. It is at this stage that the illness story turns from a regressive narrative into a progressive narrative. Admittedly, not all sick persons encounter such an epiphanous moment. As Frank (1993: 42) stated, ’Insofar as changing your life is a historically defined project, so the general possibility of epiphanies is also socially constructed. To experience an epiphany requires a cultural milieu in which such experiences are at least possibilities, if not routine expectations’.
Frank (1995) developed a three-part typology of illness narratives:
1. Restitution narrative: the participant minimizes the experience of illness, rather considering it a temporary interruption that will be overcome.
2. Chaos narrative: the ill person loses a sense of order in their life and is unable to develop a way of dealing with the illness experience.
3. Quest narrative: the illness is a challenge to be met.
Subsequently, Ezzy (2000) proposed an extension to this typology to take into consideration the temporal dimension:
1. Restitutive linear narratives in which the future is controlled through current actions.
2. Chaotic linear narratives in which there is no prospect of exerting control.
3. Polyphonic narratives in which the emphasis is on the present rather than the future, which is portrayed as uncertain.
These typologies have attracted substantial interest, although like all typologies they should not be considered definitive but rather loose characterizations.
Another sociologist, Michael Bury, characterized the onset of illness as a period of biographical disruption. This term was developed by Bury (1982) to describe the experience of people diagnosed with rheumatoid arthritis (RA). The onset of this disease disrupted plans and hopes for the future. For these people, their life story no longer fit with their everyday experiences and it needed to be recast. This process of reworking the parameters of the self has been termed narrative reconstruction by Williams (1984). Again, working with people suffering from RA, Williams identified a pattern in the casual reasoning adopted by these individuals. They were attempting to integrate RA into their life plans. According to Williams, this process of narrative reconstruction helped the sufferers ’reconstitute and repair ruptures between body, self, and world by linking and interpreting different aspects of biography in order to realign present and past and self and society’ (1984: 197).
These concepts of biographical disruption and narrative reconstruction have increasingly been used by a wide range of health practitioners and researchers, including health psychologists. An example is the work of Mathieson and Stam (1995). They conducted detailed interviews with a sample of women who had had breast cancer. Their analysis of these interviews identified three major concerns and themes in the participants’ accounts:
· Disrupted feelings of fit: those bodily changes and other events in the woman’s life that threatens their identity.
· Renegotiating identity: the realization that there is a stigma associated with cancer and they will have to renegotiate their identity.
· Biographical work: this is particularly concerned with how the events around the cancer make up a more or less coherent theme among the other events in their lives.
In developing Bury’s concept of biographical disruption, Mathieson and Stam described the biographical work engaged by the women in their study as the process of integrating the illness events into their larger narrative identities. A challenge faced by the cancer patients was that they felt rejected by their peers because of the social and moral stigma attached to cancer. They felt deprived of opportunities for conversations within which they could conduct this biographical work.
In a follow-up study, Yaskowich and Stam (2003) described the role of cancer support groups as providing such an opportunity for biographical work. They conducted interviews with women who participated in support groups. Analysis of these interviews identified five preliminary categories that were labelled ’talking safely’, ’demystifying the unknown’, ’deciding’, ’hoping’ and ’finding a separate space’. These categories were then transformed into two broader categories: ’a unique and separate social space’ and ’biographical work’. It was within the support groups that the women felt they had the opportunity to engage in biographical work that was not available elsewhere. As one woman said:
Now you’ve done it [the treatment], everybody’s sick and tired of talking about it. You’re fixed. It’s over with … I don’t want to be burdening [my husband] with it. (Yaskowich and Stam, 2003: 732)
A study by Murray (2007) of the narrative accounts of injured workers identified four narrative structures:
· disability as devastation;
· disability as challenge;
· disability as phenomenon;
· disability as opportunity.
The four structures are somewhat similar to those identified by Gergen and Gergen (1986), who described the main orientations in narratives as being regressive, stable or progressive. The devastation narrative was very much regressive, the challenge and phenomenon narratives were more stable, while the opportunity narrative was progressive (see Murray, 2002). These narrative orientations were not fixed but connected to how long the worker had had the disability. At the outset, the workers emphasized the devastation narrative, but as they began to grasp the character of the disability and how it could be managed they began to view it partly as an opportunity.
Box 15.3 Using Narratives in Health Promotion
Narratives can be used to promote a range of health actions
A study compared the impact of a video message presented in narrative form with one presented in a standard form.
· Participants: African-American women
· Design: Before and after assessment of affect and counter-arguing
· Narrative intervention: Personal stories of women who had survived cancer
· Standard intervention: Information on the breast cancer presented in didactic, expository form
· Outcomes: Women who viewed the narrative video reported more positive and negative affect, identified more with the source of information and were more engaged with the video
· Conclusion: Health promotion messages presented in a narrative form can be an important means of engaging an audience.
Source: McQueen et al. (2011)
One feature of narrative psychology is the focus on the individual account of illness experience or on that of a small number of individuals. An example is the study by Gray et al. (2005) on the narrative accounts of cancer provided by two black men. Four in-depth interviews were conducted with each of the participants. Between interviews the research team reflected on their content and identified particular issues to be pursued in subsequent interviews. In analysing the accounts, Gray et al. were partially guided by Frank’s three-part narrative typology. However, they were aware that such typologies can ’simplify and potentially distort’. Although there were elements of the restitution narrative in their accounts, it was more an ongoing process and as such more similar to Ezzy’s restitutive linear narrative. In the content of their narratives the two men intertwined personal and societal factors that made their accounts unique rather than abstract.
Although the dominant approach within narrative psychology has been the semi-structured interviews, there is a growing body of research that has explored written narratives of various sorts. An example is the work by McGowan et al. (2007), in which they examined the accounts written by women with chronic pelvic pain, a disabling condition with unclear underlying pathophysiology and that is resistant to various forms of medical intervention. Following a newspaper article, the researchers approached over 100 women who were interested in describing their experiences. Subsequently, they received hand-written letters from 26 women and a further six e-mail letters. Analysis of these letters revealed that they all followed the same chronological structure from initial awareness, through seeking medical advice and then receiving various treatments. Further analysis revealed one major theme labelled ’pathways to disengagement’ that encompassed the various factors that disrupted or impeded the flow of the diagnostic cycle. This pathway was a passive process that occurred when the women felt they just could not face continued engagement with a health system that denied their pain. Unlike some of the other illness narratives, this narrative account did not have any end. Rather, the women continued to experience pain and were frustrated at the lack of recognition of that pain. There is a need for health care to develop strategies to help these women re-engage with the health system or offer alternative forms of management of the pain.
Another source of illness narratives is the published accounts of people who have experienced various health problems. These are written not only by established writers, but also by those with limited experience of writing. They are written both by patients and by a variety of health practitioners. The increased popularity of this genre of writing has given rise to a descriptive term — pathography. A number of health psychologists have become interested both in the content of these published accounts and in the whole process of writing about illness.
Murray (2009) analysed the written accounts of a sample of women who had breast cancer. These accounts were organized into a similar storyline with a beginning, a middle and an end. The beginning was the period before cancer that was often characterized as a time of innocence. The middle of the story was the diagnosis and the subsequent medical treatment. The end was the period of reassessment of identity and reintegration into society. In closing their story, the women frequently emphasized the positive features of having cancer — it had given them an opportunity to reassess their lives. It was also apparent that the women were aware of the therapeutic benefits in telling their stories. They explicitly referred to this process of sense making.
This self-consciousness of the writers about the potential value of telling one’s story has contributed to the growth of creative writing and drama classes in hospitals and health centres (Murray, 2009). This growth in what is termed ’therapeutic writing’ is partly informed by the work of Pennebaker and Beall (1986), who reported evidence from experimental trials of the health benefits of short periods of writing. More recent reviews of the benefits of this so-called ’expressive writing’ suggest that the effect is not large (Frattaroli, 2006). However, research in this field is limited through its focus on short periods of controlled writing. There is a need to explore the value of more extensive creative writing (Nicholls, 2009).
A recent methodological development has been the growth of autoethnography, which is a disciplined reflection on the researcher’s own experiences. In some ways this is a return to some of the earliest forms of psychological research. As an example, let us consider a researcher’s writing about their own illness. Carla Willig (2009) reported her analysis of her own written accounts of the experience of having skin cancer. In this study she was explicitly guided by Heidigger’s (1962) philosophical phenomenology. In particular, she was concerned with the concept of being ’thrown’ into the world. According to Heidigger, as humans we are thrown into life circumstances that are changing and of which we have to make sense and act. Admittedly, in everyday life we do not experience this feeling of ’thrownness’, but every so often crises occur when we are forced to reflect upon our position. Willig took this as the starting point for a reflection on her skin cancer diary.
She described how the process of writing helped her to make sense of this threat to her life. On initial diagnosis, she noted how ’meaning-making — something that had always seemed more or less effortless, even playful at times — felt like hard physical labour involving my whole body in the struggle against the black hole of meaninglessness’ (Willig, 2009: 183). In the following days, she developed what she described as a ’serviceable narrative’. This was one based upon confronting her mortality head-on rather than trying to evade it. This narrative gave her ’a sense of peace born from accepting where [she] had been “thrown”’ but it was not easy to maintain. However, it was a narrative that she pursued, since ’integrating the possibility of death into life as it was lived in the here and now seemed to remove some of the horror surrounding the idea of terminal illness’ (2009: 185).
Fortunately, the treatment for Willig’s skin cancer was successful. Once it was over she reflected not simply on the content of her narrative making, but also on the idea that perhaps from an existential perspective, meaning-making may not always be helpful. As she noted, ’attempts to find meaning (especially backward-looking meanings such as the search for a cause) can interfere with accepting that life is, and always will be, uncertain, unpredictable and (to a large extent) uncontrollable’ (2009: 189).
Overall, it is apparent that these different phenomenological approaches provide an insight into the processes by which the individual attempts to make sense of illness. These approaches have grown in popularity and sophistication. Unlike the cognitivist approach, they are much more open-ended and aim to connect personal representations of illness with changing everyday experiences. They also draw upon different philosophical traditions.
The discursive turn in psychology has highlighted a problem with cognitive and phenomenological approaches to the study of illness representations in that they are concerned with trying to infer something about inner mental worlds from a study of verbal reports. An alternative approach is to focus on the character of the discourse itself and the context within which it occurs rather than on the structure of inferred inner mental phenomena. Within this approach the communicative nature of language is the focus of attention rather than inferred underlying beliefs (Potter and Wetherell, 1987).
Two main orientations have been identified in contemporary discourse analysis — discursive psychology and Foucauldian discourse analysis (Willig, 2004; McKinlay and McVittie, 2008). The former places emphasis on unpacking the various discursive strategies, such as ’footing’ and ’disclaiming’, and their functions within a particular discursive context. The focus of this approach is on what the discourse is doing. The latter, more critical form focuses on the particular discursive resources available within a culture and the implications for those who live there. These resources enable us to construct and live in the world in particular ways. It has been argued that these two orientations should not be seen as distinct approaches but rather as complementary ones (Potter and Wetherell, 1987, 1995). Individuals are both producers and the products of discourse. More critical psychologists are wary of the assumed autonomy of the individual actor and the ignorance of issues of politics and power by discursive psychologists (Parker, 1997). Here we consider both approaches in a little more detail.
Discursive psychologists have been concerned with how people talk about illness in different contexts. Detailed analysis of this discourse has provided insight into how illness is constructed through everyday language. An early example of this approach is the study by Middleton (1996) in which he explored the talk in a parent group for children with chronic renal failure. He argued that this talk is more than ’a display of inner workings of minds’, but is ’part of the process of making [their] health care experiences socially intelligible’ (Middleton, 1996: 244). Rather than breaking the talk down into elemental beliefs, he attempted to understand it as part of the process of making sense of illness within a social context. He stressed that an important component of such talk is that it contains many contradictory elements and expressions of uncertainty. These elements are not deficiencies, but rather are seen as being ’used to establish common understandings concerning what it is to care for chronically ill children’ (1996: 257). Further, the talk is more than self-presentation that can be ironed out by careful assessment, but is rather part of the broader collective process of meaning making.
An example of the use of discursive psychology is the study by Radtke and Van Mens-Verhulst (2001) of mothers with asthma. Interviews with a number of these women revealed the dominance of the traditional medical discourse to describe asthma. Further, they identified certain causes of the disease in their everyday lives but distinguished these from their role as mothers. In discussing an exemplar case, the authors noted that avoiding any suggestion of a link between her asthma symptoms and mothering allowed the woman to do two things: ’first, she positioned herself as a competent mother despite living with asthma’ and ’second, it justified her claim that her previous employment situation and problems with her extended family were unjust and harmful and thereby had contributed to her illness’. In interpreting these findings, Radtke and Van Mens-Verhulst emphasize that the women are both producers and products of discourse: ’As producers of discourse, the women do not draw upon the cultural resources available to them in some straightforward way, but rather use them strategically to accomplish certain actions’ (Radtke and Van Mens-Verhulst, 2001: 381).
Discursive psychologists are particularly interested in how discourse is oriented to social action. According to discourse analysts, discourse constructs different versions of reality that lead to particular actions. An example of this is the study by Ranjbar et al. (2014) of the discourses HIV/AIDS care workers. In this study, a sample of care workers were interviewed about their work. Prior to the analysis the researchers carefully transcribed the interviews following a version of the transcription method developed by Jefferson (2004) that enabled them to consider not only the words used, but also the various para-linguistics, such as pauses and coughs. The extract from one of the interviews provided in Box 15.4 illustrates how the care worker perceives the infection as controllable and avoidable.
This strategic use of discourse in everyday social interaction was developed further by Radley and Billig (1996) in their detailed commentary on the discursive context within which talk about health and illness is generated. In particular, they contrasted the different positionings of healthy and sick people: ’The healthy have much to say about their illness experience, while the sick are often at pains to show their “normality”’ (Radley and Billig, 1996: 225). Since the interviewer is usually a healthy person, the sick person feels strongly ’the need to legitimate [their] position’. This emphasizes that the ’accounts are situated in a rhetorical context of potential justification and criticism’ (1996: 226). Although this commentary was aimed at qualitative interview research, a similar comment can be made about quantitative questionnaire studies of health and illness beliefs.
Box 15.4 HIV as a Controllable Infection
Interviewer: And how do you feel about (…) working with (0.2) individuals who are HIV positive or who have AIDS or TB.
Care worker: Mm (0.6) uhm I don’t have a problem with that at all (1.1) uhm but as I said my background I’ve dealt with (.) a lot of people with different disabilities mental physical (0.6) uhm (1.1) >and I’ve always been< raised to treat people equally (0.8) so (0.2) that doesn’t affect me at all like I’d (1.5) ((coughs)) I don’t have concerns about myself catching it because I know (0.7) I’m extremely careful and I take precautions (0.8) uhm >all the safety precautions that you’re supposed to take<
Transcription symbols (from Jefferson, 2004):
°…° speech that is quieter
>…< speech that is faster
(.) brief pause
(1.1) Time of pause
Source: Ranjbar et al. (2014)
Other studies have explored the dominant discourses that we draw upon to construct our sense of particular health issues. Drawing upon the concept of interpretative repertoire (Potter and Wetherell, 1987: 139), Benveniste et al. (1999) explored lay theories of anorexia nervosa. Interviews with five men and five women in Australia revealed three dominant themes that were labelled as a socio-cultural discourse, a discourse of the individual and a discourse of femininity. Drawing upon the socio-cultural discourse enabled participants to attribute a source of blame for anorexia nervosa to factors external to the individual. Conversely, the individual discourse located the cause of anorexia within the individual. However, it is argued that both of these discourses are premised upon a humanist conception of the individual as an autonomous rational being. This separation of socio-cultural factors from individual psychology maintains the idea that anorexia nervosa is a manifestation of psychopathology.
Foucauldian Discourse Analysis
The internalization of dominant discourses of health and illness can be considered part of disciplinary power by which social norms are accepted (Foucault, 1979). Deviation from such norms can cause severe distress to the individual concerned. An example is the case of hirsutism, a medical term used to describe an excess of hair on the female body. In Western society, women spend a substantial amount of money to remove such hair. A study of women who had self-perceived hirsutism found that the women had strongly internalized the dominant discourse around female bodily hair and adopted a range of personal strategies to reduce the associated distress (Keegan et al., 2003). ’Through self-surveillance and correction to such norms, and the regulation of bodies through body practices such as depilitatory regimes, women are rendered less socially oriented and more focused on self-modification’ (Keegan et al., 2003: 338). A particular point of interest was the way removal of hair was perceived as ’looking-after’, an example of how body regulation is seen as self-care rather than a process of gender control.
A similar study of women with bulimia (Burns and Gavey, 2004) revealed the importance of the dominant discourse of healthy weight. This interacted with the dominant discourse on female body shape. The authors argue that both ’bulimic’ and ’healthy’ female bodies are underwritten by ’normalizing discourses that derogate female fat and amplitude and that promote engaging in regulatory practices designed to promote a slender body’. They continue that by focusing on healthy weight rather than a broader concept of health, current health promotion campaigns are ’paradoxically implicated in the shaping and production of subjectivities, practices and bodies for some women in ways that are antithetical to an overt health message’ (Burns and Gavey, 2004: 562).
A particular feature of Foucauldian discourse analysis (FDA) is exploring how dominant ideas become embodied in the person. Thus, FDA researchers are not simply investigating discourses as things in themselves, but how they become material reality through a process of negotiation by the person. An example of this is the work by Willig and Paulson (2008) on older women’s talk about their ageing bodies. They initially identified through a literature review four dominant discourses about the ageing body. These were:
· A biological discourse that emphasizes the vulnerability of the ageing body through physical degeneration.
· A social constructionist/historical and personal agency discourse that considers the tension between discourses of contextual determinism and personal agency.
· A female beauty discourse that considers older women’s talk about losing control of their appearance.
· A feminist discourse that considers women’s ageing bodies threatened by the male gaze in patriarchal society and by the beauty industry.
Considering these four ’expert’ discourses, Willig and Paulson conducted qualitative interviews with ten older women about their perceptions of their bodies. These interviews were subsequently analysed following the six stages developed by Willig (2001):
1. Highlighting the transcript for references to the body.
2. Coding each section for wider cultural discourses.
3. Specifying the action-orientation of each section of the text.
4. Identifying the various subject positions.
5. Considering the practical implications of each section of text.
6. Identifying the ’ways of being’ made possible by each section of text.
This analysis contributed to a detailed understanding of how the women engaged with dominant discourses about the ageing body. An important feature was the tension within the older women’s use of the dualist constructions of the ageing body. On the one hand, the women could talk about their body as something separate that was in decline physically. On the other hand, this separation of body and mind could be considered functional in that the women could exert their active mind to control these ageing bodies. Willig and Paulson concluded that this demonstrates how the cultural discourses of personal agency are as important as those of biological and contextual determinism in shaping the ageing body.
Social Representations of Health and Illness
Unlike some of the previous approaches to our understanding of illness representations, social representation (SR) theory places the social at the centre of the process of sense making. The other approaches tend to focus more on individual experiences of illness or the immediate discourses around illness. Social representations are concerned with the socio-cultural understanding of the phenomenon that is revealed not only in language but in everyday social practices. Social representation theory is concerned with both the content of these representations and how they operate to shape our engagement with the world. According to Moscovici (1973: xiv), ’They do not represent simply “opinions about”, “images of” or “attitudes towards”, but “theories” or “branches of knowledge” in their own right, for the discovery and organization of reality’.
An increasing number of researchers have explored the character of the SRs of illness. The early classic study was conducted by Claudine Herzlich (1973). From her interviews with a sample of French adults, Herzlich concluded that a central concept in the popular definitions of health and illness is activity. For most lay people, to be active means to be healthy, while to be inactive means to be ill. Herzlich distinguished between three lay reactions to illness:
· Illness as destructive: the experience of those actively involved in society.
· Illness as liberator: the experience of those with excessive social obligations.
· Illness as an occupation: the experience of those who accept illness and feel they must contribute to its alleviation.
Lay people are aware of these different reactions and not only adopt one or another of these strategies depending upon time and circumstance, but also characterize other individuals as belonging to a particular category. The study of injured workers described earlier (Murray, 1997) reveals the inter-penetration of personal narratives with these social representations.
The original formulation of SR theory emphasized the important role of science in shaping everyday common sense (Moscovici, 1984). More recent formulations have indicated a much more dynamic interaction between science and common sense (Joffe, 2002). In Western society, biomedicine is extremely important in shaping our understandings of health and illness. As Herzlich and Pierret (1987: xi) stress, ’in our society the discourse of medicine about illness is so loud that it tends to drone out all others’. The media plays a very important role in acting as a conduit of scientific medical ideas to the general public. As such, SR researchers are interested in both what lay people have to say about illness, but also in how the media report these ideas. The media help to transform scientific thinking into more everyday terms. In doing so they transform illness from something that is impersonal into something that is personal and is infused with particular cultural norms and values. Of course, since scientists are lay people too, their language can also reflect these values.
An important characteristic of SRs is that they are not passive characteristics of the individual but part of the dialectical process of engagement between the individual and the social world. Moscovici (1984) refers to two particular processes, anchoring and objectification, which underlie the process of developing SRs. The first is the process whereby unfamiliar concepts are given meaning by connecting them with more familiar concepts, whereas the second is the process whereby a more abstract concept acquires meaning through association with more everyday phenomena.
Several researchers have used these concepts to explore popular views of particular illnesses. Joffe (1996) conducted detailed interviews about AIDS with a sample of young adults from London and from South Africa. She also conducted a content analysis of media campaigns. She notes that historically mass incurable illnesses have been anchored to the ’other’. In the case of AIDS, this process is shown in the anchoring of that disease in the supposed aberrant behaviour of others. This process serves as a protective function by distancing the person from the risk of contracting the disease. However, a certain amount of ’leakage’ has occurred as it became apparent that AIDS could be spread via the blood supply and among heterosexuals. The process of objectification transforms an abstract concept into an image. Joffe (1996) noted that the media images of tombstones and coffins concretized the fear associated with AIDS.
Forming SRs helps to define a group and also to promote in-group solidarity and to defend group members from out-group threats. Consider the case of the Ebola virus, which can be deadly if contracted. Interviews conducted in Britain about this virus found that most lay people portrayed it as an African disease and that they are very unlikely to contract it. As one woman said, ’It just seemed like one of those mythical diseases, sort of thing, science fiction like thing, that happens in places like Africa and underdeveloped countries and doesn’t come here’ (Joffe and Haarhoff, 2002: 965). By clearly characterizing the disease in fantastical terms, the lay public is symbolically protecting itself from this outside threat.
In a comparable study of representations of AIDS in Zambia (Joffe and Bettega, 2003), it was found that young residents distanced themselves from the risk of the disease by representing it as originating in Western society and in deviant sexual and scientific practices. These findings highlighted the challenge of encouraging young people to take personal action to protect themselves against AIDS. Health campaigns designed to curtail the spread of AIDS would need to challenge these SRs.
The internal dynamic within SRs was explored in a study by Moloney and Walker (2002). Their study explored how people in Australia talk about organ donation and transplantation. Their analysis of focus group discussions suggested that SRs were organized around what they characterized as two dialectically opposed images — the gift of life and the mechanistic removal and replacement of body parts. However, the participants were extremely comfortable with this apparent opposition. According to Moloney and Walker (2002: 317), this illustrated the role of conflict and debate within the production of SRs: ’Through the process of debate, members were able to articulate and discuss the conflicting nature of the donation dilemma and, in so doing, either reach a position that was slightly different from that held at the beginning of the discussion, or consolidated how they felt.’
SR theory is not just concerned with language, but also with non-linguistic representations of phenomena such as illness. Joffe (2003) links this broader concern with the use of images and symbols to understand health and illness, for example, the ribbons used to convey support for particular diseases or the various metaphors that are associated with illness. The classic analyses by Sontag of the metaphors used to describe cancer (Sontag, 1978) and AIDS (Sontag, 1988) illustrate how difficult it is to talk and think about illness without reference to certain metaphors.
Other researchers have accessed a range of other sources to explore the changing nature of SRs of illness. For example, Porto (2007) considered social representations of tuberculosis through an analysis of different literary documents. In the mid-nineteenth century tuberculosis was popularly seen as a disease that provided the sufferer with an aura of exceptionality and even a certain refinement. This aura was something that was perceived as a positive quality by some of the literary establishment. Porto (2007: 2) quotes from Casimiro de Abreu, a Brazilian poet of that period:
I desire a serious, severe, long-term disease indeed for I am tired of this good health monotony. However, I would like to have the phthisis with all its unexpected incidents; I would like to wither lyrically, always singling the last chants of life, and afterwards, to expire around perfumes under Italy’s bluish sky, or around this sublime nature that surrounds Queimado.
This use of such a wide range of resources provides an opportunity for health psychologists to connect with scholars from other disciplines.
According to Joffe (1996), the potential for modifying SRs of disease is limited since they serve the function of preserving the status quo in a culture. They not only make the social world remain familiar and manageable, but also maintain the dominance of certain ideas. Admittedly, certain organized groups within society can subvert these dominant ideas. The gay movement in Britain contributed to a reassessment of the dominant image of AIDS as belonging to a supposedly deviant minority group that in terms of religious beliefs were themselves to blame for contracting the disease (Markova and Wilkie, 1987). Instead, it was re-characterized as a disease that could affect heterosexual as well as gay individuals.
Other researchers have explored the potential of challenging the character of restrictive SRs of illness through various forms of social action. For example, Krause (2003) conducted a participant action research project with a group of individuals who had inflammatory bowel disease. Interviews were conducted with them before and after the participatory intervention. At the outset, the participants had a very negative SR of the disease. The disease pervaded all aspects of their lives: family, work and social relations. Figure 15.2 provides a summary of the SR of the disease before and after the participatory intervention. It shows how SR theory is concerned with developing an understanding of the lay theories of illness and how these can change over time.
An important part of studies of SRs has been concerned with how particular phenomena are represented in the media. The initial study of Moscovici considered how psychoanalysis was represented in the Catholic and the communist press in France in the 1950s. Today, the media is much more extensive. It can range from newspapers and television through to the internet and zines. Public surveys have confirmed the extent of popular interaction with different forms of media. There is an obvious need to explore not only the character of illness representations in the various media, but also how lay people engage with these representations and who sets the agenda in illness media production (Hodgetts and Chamberlain, 2006).
Further, it is not just illness representations in themselves that are important, but how they are constructed with reference to other social phenomena. For example, Nairn et al. (2006) have commented on how ethnic minorities and indigenous groups are popularly represented in a denigratory manner in the popular media. This in turn has implications for the health of the groups so portrayed. Recently, Estacio (2009) highlighted the need for critical health psychologists to move from describing these processes to directly challenging them. Her study reported on a successful activist campaign to directly challenge media portrayal of Filipino workers.
Figure 15.2 Social representations of inflammatory bowel disease
Source: Krause (2003)
The study of lay illness representations is a growing area within health psychology. Different theoretical and methodological approaches have guided research in this area. One way of integrating these different approaches to the study of illness beliefs is by considering the levels of psychological analysis proposed by Doise (1986). Doise suggested that a reason for the confusion between different social psychologists was that they operated at different levels of analysis. He suggested that we should distinguish between research that was conducted at the intrapsychic level of analysis and that which is conducted at the interpersonal, group and societal levels.
This classification provides a way of organizing research on representations of illness (Murray, 1993). At the intrapsychic level are both the cognitive and phenomenological approaches, at the interpersonal and positional levels are the discursive accounts, while at the societal level are the Foucauldian discourse analytic and social representational approaches. The challenge is to explore the connection across these levels.
An example of the integration of the different levels was the study by Crossley (1999), who noted the connection between personal and cultural stories. Similarly, Murray (2003) explored the connection between narrative and social representation theory. Detailed analysis of the three-fold typology of social representations of illness developed by Herzlich (1974) revealed their narrative structure. Conversely, narratives can also be explored at different levels of analysis (Murray, 2000). The challenge is to see the social and political in the personal accounts of illness and to explore the implications of this for strategies to improve health (Murray, 2011).
1. Illness representations evolve over time. There is a need for a greater understanding of their evolution.
2. Illness representations are connected with people’s social world. Health psychologists need to be involved in mapping these connections within specific cultures.
3. Theoretically, health psychologists need to explore the conceptual connections between illness and health discourse.
4. The interconnectedness of illness discourse and bodily processes is still poorly understood. There is a need for a concerted programme of theoretical work in this area.
5. Lay representations of illness, or of groups of people, can have negative impacts on the health of particular groups. Health psychology has a role in challenging these representations.
1. Psychologists have used a variety of theoretical perspectives to investigate lay representations of illness. The major approaches have been the cognitive, phenomenological, discursive and socio-cultural perspectives.
2. Cognitive approaches have attempted to identify a limited number of dimensions of illness representations, including identity, causes, timeline, consequences and control/cure. The cognitive approach has generated a substantial body of empirical research using various standardized measures.
3. The phenomenological approach is concerned with describing the subjective experiences of the individual patient. It is less concerned with identifying a limited number of illness dimensions and more with developing a sophisticated interpretative model. This approach prefers to use qualitative interviews to collect data.
4. Narrative psychology is a particular phenomenological approach that is concerned with the narrative character of people’s accounts of illness.
5. Discourse analysis focuses on the character of the language used to talk about illness and the context within which it occurs rather than on the structure of inferred beliefs.
6. Social representation theory is concerned with the lay theories that underlie popular understandings of illness.