Family Practice Advance Access originally published online on July 25, 2006
Family Practice 2006 23(6):637-643; doi:10.1093/fampra/cml039
How do newly diagnosed hypertensives understand ‘risk’? Narratives used in coping with risk
a Centre for Primary and Community Care, University of Sunderland UK
b School of Population Sciences, University of Newcastle UK
Correspondence to Dr NF Weaver, Centre for Primary and Community Care, School of Health, Natural and Social Sciences, University of Sunderland, Priestman Building, Green Terrace, Sunderland SR1 7PZ, UK; Email: nicola.weaver{at}sunderland.ac.uk
Received 17 May 2006; Accepted 28 June 2006.
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Abstract |
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Background. In many clinical settings, there are concerns about communicating risk effectively in the absence of a clear understanding of what risk means to individuals.
Objectives. To explore the ways in which individuals think about risk in the context of a recent diagnosis of hypertension.
Methods. A qualitative interview study of 11 recently diagnosed hypertensive patients recruited from general practice.
Results. Participants presented a ‘narrative’ about their relationship to risk. Two general types of risk narrative were evident: ‘denial’ narratives and ‘acceptance’ narratives (though some examples fall along the spectrum in between).
The ‘deniers’ described risk as something they do not think about, or as applying to others but not themselves. The ‘acceptors’ described risk as an unavoidable part of everyday life. The use of a ‘denial’ or ‘acceptance’ narrative appeared to be independent of the level of understanding of evidence-based hypertension medical risks. Some participants who used a denial narrative also described taking a variety of risk-reducing actions in relation to the new diagnosis. For some people the distancing of risk achieved by the narrative seems to be an important way of coping.
Conclusions. Participants described risk by way of a personal narrative, which functioned as a coping position. The coping position adopted did not presuppose either levels of knowledge, or health-related behaviour. In communicating information about risk, practitioners need to be aware of the use of coping narratives; ‘denial’ does not necessarily imply lack of understanding or unwillingness to take medically appropriate health-related actions.
Keywords. Coping, narrative, perception, risk, understanding.
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Introduction |
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Risk communication and perception are fundamental to high-quality care in an era of shared and informed decision making. Hypertension is a major risk factor for atherosclerotic disease.1 Decisions about treatment and control of hypertension now hinge upon individual cardiovascular risk.2 Patients' and practitioners' interpretations of risk data have a direct impact on clinicians' ability to meet quality targets.3
There are concerns about communicating risk effectively in the absence of a clear understanding of what risk means to individuals. There is however agreement that "educational materials intended to support both the GP and patient should take into account ideas, fears and expectations of patients".4 There has been much psychological, sociological and medical research relating to understanding of risk in general, but little work has been done on patients' subjective understanding of information relating to risk in this clinical setting.5,6
The communication of risk-related information involves both factors relating to the clinician and factors relating to the patient. Medical research has focused on the ways in which clinicians influence the decision-making process. For example, the way in which risk-related information is presented by a clinician affects the patients' understanding of risk (‘framing’).7 For a variety of reasons,8 information is often presented in terms of relative risk rather than absolute risk, resulting in the impression of a larger benefit or risk than is actually the case.
Psychological research using hypothetical scenarios has identified a number of very general rules, known as heuristics or biases, by which risk-related information is subjectively interpreted.9 For example, ‘optimism bias’ is a term used to describe the fact that people often believe themselves to be less at risk than other people.10 Optimism bias can be demonstrated in some medical research; for example, people tend to underestimate their chance of getting heart disease.11 Perceived controllability of a situation affects peoples' ‘optimism’.12
Sociologists point to the social and cultural influences on understandings of risk, for example, the poor are subject to greater risks, and the present distribution of risks in general reflects distribution of power and status.13 Others discuss the emergence of a ‘risk society’ as a consequence of increasing globalization and technological advances, reflecting ever-increasing un-quantifiable risks.14 The individual is in a position of greater apparent control in the face of increasing uncertainty.
People use stories to make sense of life and experiences. An illness narrative represents the understanding of an individual experiencing an illness in a particular setting. Narratives are embedded in social context, and are open to re-interpretation and change. This can be utilized to improve care: for example, in developing complex interventions for diabetes education, Greenhalgh et al.15 demonstrated the need for the discussion and re-framing of knowledge within a culturally specific group in order for it to be made meaningful to the participants.
There are clearly many factors affecting individual understanding and interpretation of information. This interview study explored in depth the ways in which individuals think about risk in the context of a recent diagnosis of hypertension, in order to understand how factors relating to the patient affect the communication process.
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Methods |
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Research design
A qualitative approach was taken because this allows for broad discussion to take place, deliberatively ameliorating the extent to which the pre-conceptions of the researchers influence the findings. Moreover, qualitative analysis allows an in-depth examination of participants' understandings on the basis of their own descriptions.
Material
All hypertensive patients diagnosed within the previous 6 months were identified from the computerized records of two practices serving the same geographical area. Initially, ‘Surgery 1’ provided a list of 16 patients, 8 of whom agreed to be interviewed. ‘Surgery 2’ then provided a list of 33 eligible patients of whom 16 were contacted, in chronological order from the most recent diagnosis. Recruitment ceased when thematic saturation was reached, that is, when it was found that no new themes emerged. One patient was excluded, because of a recent bereavement, by the responsible GP. Thirty-two people were contacted and 15 agreed to take part. Four people were subsequently excluded because of an inaccurate record of the time of diagnosis or late reply. Six women and five men aged 41–82 years were interviewed. No participants described having had formal higher education. The sex of participants reflects the even distribution of sexes in the invited sample (16 men and 16 women). The age spread of those invited to take part was 36–90.
Data collection
An interview schedule was constructed using the guidelines described by Foddy,16 and piloted. The interview schedule employed open-ended questions, including questions relating to risk in general, risk to health in general and risk in the context of the new diagnosis. The questions were used to prompt participants to talk about risk, not as a questionnaire (Table 1).
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Interviews were conducted and recorded by NW and lasted from 30–45 minutes. Participants chose the place of interview (10 at home, 1 in GP surgery).
Analysis
Analysis was developed iteratively using constant comparative methods,17 with initial analysis conducted by NW and MM. Transcripts were read and re-read in detail independently to identify descriptive themes. We then examined participants' use of language to identify the ways they described ‘risk’, and to examine descriptions of key issues in each descriptive theme. In this way, we identified patterns and discontinuities in the language use from which emerged clear narratives about risk. This was not intended as a narrative analysis; rather, narratives emerged through the analysis of language use. These narratives were examined and then challenged by looking for conformity and variation, and identifying disconfirming cases. Joint data analysis sessions (NW, MM and RT) were used to look critically at whether evidence supported the analysis.
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Results |
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The way in which participants described risk was best understood through their personal narrative; individuals presented a coherent personal position whether talking about risk in general or the specific individual risk related to his or her diagnosis of hypertension. The narratives used in this study fell mainly into two categories: denial narratives and acceptance narratives (but with some examples falling in between these two positions).
The denial narrative (‘risk deniers’) group described themselves as not at risk, either because they simply did not expect things to happen to them or because they had taken steps (for example, lifestyle changes) to deal with risk, and could therefore avoid its consequences. The distancing of the risk achieved by this seems to be an important way of coping. The ‘acceptance narrative’ group (‘risk acceptors’) described risk as an everyday unavoidable phenomenon that has to be lived with. These narratives related to a personal framework for dealing with risk, rather than to risk itself as a quantifiable phenomenon. Therefore, the ‘risk deniers’ may not necessarily avoid situations that other people might perceive of as risky. Each type of narrative appears to have both potentially positive and deleterious effects. Descriptions of the narratives and their effects, with examples from the interviews, are discussed below.
Risk denial
‘Risk deniers’ describe risk as something that they themselves are not subject to for a variety of reasons. The use of a particular narrative was evident from the very beginning of the interviews. In response to the first question (Table 1), the risk deniers reply: (P1) "I'm not really sure"; (P2) "(pause) I don't know really"; and (P4) "I wouldn't know". This served to distance the idea of risk from personal experience. In the continuing discussion, a variety of personal descriptions of ‘not thinking about risk’ further emphasize a distancing effect.
Example 1
P1 (41 years, female) was not easily engaged in a conversation about the idea of risk, and described not thinking about risk in a way that suggested it was a choice. She rationalized this partly by the fact that being hypertensive doesn't make her feel ill.
"Another thing with blood pressure is that you don't know you've got it really because you haven't got any problems like making you feel ill ... And it's I don't think you worry so much."
However, it was later evident that she had a clear understanding of stroke and its link to hypertension from personal experience.
"Heart attacks is that what you mean ... Yeah er strokes."and she described her grandmother who had strokes ...
" ... lost her talking and that, she couldn't recognize anybody."
P1 was worried that her blood pressure was not coming down to normal with the efforts she has made:
"[I'm] ... worried really a bit 'cause it'll not come down". She said she has tried to lose weight, "I've tried loads of things to, relaxing and dieting and it still doesn't come down".
Now she is also taking medication.
There are two different strands in her narrative; on one hand, she denies that the risks of hypertension are a problem, but on the other hand she demonstrates a good understanding of hypertension and describes concerns and actions in response to the diagnosis. We interpret the first of these strands as a denial narrative being used to cope with the anxiety generated by her knowledge of the risks. We did not set out to examine coping skills; nevertheless, the use of narrative in this way was evident in the findings.
Example 2
P3 (66 years, male) described, with insight, the position he had previously held: "you think it's not going to happen to you." His positioning of himself as safe from risk did not indicate a lack of knowledge, but can be understood as a coping position. He realized that this position was at odds with what was happening to friends and relatives. For example, even though three friends had recently become ill and had died, two from smoking-related illness (and he is himself a life-long smoker), he had until recently continued to maintain this ‘denial narrative’.
"I've had three friends die in the last three years who were ... all younger than me. One of a brain tumour, one of a ... , one with lung cancer and the other one er ... a severe stroke. Er ... but there again you feel ... you feel sorry but you feel fireproof yourself. You think it's not going to happen to you."
In the previous few months P3 had had a transient ischaemic attack (TIA) and had subsequently given up smoking. He said that having had a TIA he could no longer continue to think of himself as ‘fireproof’ in the same way. When he was asked why he had given up smoking now but not in the past, he replied:
"Yeah. Well I always felt alright before ... so I could say, oh well, it doesn't do me any harm, but I can't say that now."His previous narrative of denial no longer worked as a coping strategy.
Example 3
P6 (57 years, female) also demonstrated insight into the uses of a personal narrative, in this case of avoidance, which seems to fall somewhere between denial and acceptance. She described risk as something that can be avoided by the way she lives her life. This allows her to feel in control of her normal ‘safe’ state.
"I don't take risks. I like to be em ... I would say safe.""...I don't like change, a lot of change in me life, I like things to be kept the way they are. Em... and I'm not one for taking risks..."
For P6, risk implies danger. She described being able to evade risk by the behaviour she adopts. When asked about the risks of driving on the roads,
"No I'm ... well it's normally just my husband I'm ... that I'm a passenger for and I'm quite happy and I know I'm safe with him."
And of the potential danger from other drivers:
"No, no. I think ... I think, you know, probably some people do but er..., I think em ..., I think if I start thinking like that I would probably end up not going in the car so it's, you know, driving as a passenger has never ever bothered us."
In the case of the new diagnosis of hypertension she described recent events as follows:
"and I says, well I certainly didn't want problems later on and I was quite happy to take the tablets which she prescribed for us and I just take one every morning, that's all I take."
She gave the impression that, for her, taking the tablets had sorted the problem and it was therefore no longer a matter of concern. For her, a narrative of having successfully dealt with risk seemed to act as a coping position in situations that are outside her control. This does not imply that she does not understand that real risks exist, or appear to prevent her from taking behavioural action to reduce risk as far as is possible.
Risk acceptance
Risk acceptors shared a narrative in which risk is ‘accommodated’ in everyday life. Participants describe risk as a normal part of everyday experience: P5 (78 years, female) states: "Well you run a risk every day. I mean you can walk into the kitchen and that's a risk isn't it?" P10 (77 years, female) demonstrated a similar approach to risk by her choice of words, "Well I felt well there's not much you can do about it is there, it's no good panicking." In the examples below there is some evidence of how risk has become normalized and reduced in emotional impact. These examples suggest that risk acceptance narratives can function as a way of coping with risk, and are not necessarily simply a statement of fact.
Example 4
P9 (77 years, male) also described risk as a normal part of life:
"... life is risky isn't it? I mean you have to accept things haven't you?"
Referring to a probable TIA he experienced, he stated:
"I worried ..., not worried ... have to put things in order because er ... this could happen again."
His lack of control over bad outcomes is not constructed as distressing, rather as something to be dealt with in practical terms.
Example 5
P11 (57 years, male) had many years of experience in the Navy, which led him to accept risk as an everyday phenomenon. He had approached the new diagnosis in the same way. He had a very clear narrative of accepting the inevitability of risk and taking appropriate steps to deal with it.
"Yeah well em ..., I was attached to the Royal Marines in Malaya, Borneo and ......... Some hairy experiences there which I couldn't talk about for quite a while, you know, without breaking into a cold sweat but em ..., I can talk about it now but er ..., you know, risky matters ..., well I look at it from the point of view it's now, it's part of my job, it's my way of life. I deal with it."
And referring to the risks of hypertension:
"... and obviously I think the context you're talking about is, I'm at risk because my blood pressure's high and we're talking risk of fatality. If I don't do anything about it then er ..., I'm taking a chance off jumping off the deep end."
Conflicting positions
The examples described above illustrate how narratives can be used as a way of coping or living with risk. There is evidence that the use of denial does not necessarily imply either lack of knowledge about the health risks of hypertension or a lack of appropriate action in relation to the new diagnosis. However, the new diagnosis of hypertension can be seen to create some conflict for those who use a denial narrative in relation to risk; there is obvious conflict between being free of risk and having hypertension. This was seen (above) when P3 described that following a recent TIA, in order to make sense of the diagnosis, it has been necessary for him to change the way he thinks about himself in relation to risk.
P2 (44 years, male) demonstrated the co-existence of two conflicting narratives. He initially described himself as a healthy, worry-free person. He had always taken a lot of exercise and paid attention to his diet. However, he had also now developed hypertension and has a family history of heart disease.
"Well, me father died very young, maybes that's always on the back of your mind you know. I mean em ... heart attack, and he was only forty five so that's I suppose in the back of your mind all the time you know."
He was reluctant to take medication because of his fears about the possible long-term side effects. He discussed the balance of probabilities between long-term unknown side effects of medication and the chance of illness occurring as a result of the hypertension. He felt angry that the doctor considered that what had happened to his father was an important factor in the decision to treat his own hypertension. He was however aware that this was in conflict with some of his other ideas.
" ... if it hadn't been me dad I don't think I would have got them tablets ... and I didn't ... in my mind I didn't think that was right giving me them tablets ’cause of them, ’cause of the reasons, you know what I mean?"(Interviewer): "Because of your dad or because of the side affects ... which...?"
"Because of me dad..."
And later:
"I've got it on the back of me mind, I'm thinking well in twelve months time me dad did die at forty five, do you know what I mean and like, well come February I'll be forty five...""... I'm contradicting, aye I know".
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Discussion |
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TopAbstractIntroductionMethodsResultsDiscussionConclusionsReferences |
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In this study, participants used narratives to describe themselves in relation to risk. We found two broad types of narrative: ‘risk denial’ and ‘risk acceptance’, with some narratives falling between the two. The narratives appeared to function as a way of coping with risk. Some participants from the ‘risk denial’ group demonstrated extensive knowledge of the risks associated with hypertension, and described medically appropriate actions, for example, attempts at weight loss. Conflict appears to arise when individuals who have been used to coping with risk by denial are faced with the new risk of hypertension. In this study, more of the older participants (i.e. 70 plus) were ‘risk acceptors’ than ‘risk deniers’, but adoption of one position or the other is not exclusively linked to age. It is possible that there may be a link between greater experience of personal risk and the use of risk-acceptance narrative; however, it is not within the scope of this study to draw any firm conclusion about this.
This is a small study, which raises the possibility of an unrepresentative sample. The interviewed sample reflected the age and sex distribution of the invited sample. We recognize that the interpretive methods of qualitative analysis make possible alternative interpretations of the same data. The validity of interpretations given here is based on plausibility, negative case review and the use of a rigorous systematic approach to analysis. Further, following Potter and Wetherell,18 presentation of segments of text allows the reader to evaluate the interpretation presented.
The findings of this study need to be understood in the context of other previous relevant research. Denial is recognized as an ‘illness’ coping mechanism, the level of which can change over time. It is noted by Faulkner that in an illness setting many patients in time move from denial ‘towards reality’.19 We find parallel groupings of denial and acceptance in this study. We note in some cases the presence of conflict between two co-existing narratives that could represent a transitional state in the way in which participants describe themselves in relation to risk. Denial may complicate the communication process. Examples of this have previously been demonstrated in an illness setting; for example, the apparent understanding of information by cancer patients about the course of their disease was related to ‘denial’ more consistently than to factors of the communication process.20 Equally, the use of denial narratives in relation to risk in other settings may affect the process of communicating health-related information.
Miller's21 work attempted to categorize people in relation to their response to, and desire for, health-related information. It was suggested that people could be divided into types, described as ‘monitors’ and ‘blunters’ in relation to stressful life events. It has been shown that monitors become less anxious if they are provided with detailed information, whilst ‘blunters’ are less satisfied and more anxious in that setting. Parallels may exist between ‘deniers’ and ‘blunters’, and ‘acceptors’ and ‘monitors’. However, in contrast, we describe denial and acceptance narratives here as an orientation to risk that may change depending on experience, rather than being a fixed position that represents a ‘personality’ variable. Recognition of the part played by ‘choice of belief’ in coping was seen in an interview study with people being counseled for the possible inherited risk of developing colon cancer.22 It was found that some patients adopted a belief that they either did or did not carry an affected gene, and this choice of belief was interpreted as part of the process of coping and coming to terms with risk. This ‘choice of belief’ bears similarities to the adoption of narratives that are seen to be used as a way of coping by distancing the idea of risk in this study.
A larger longitudinal study conducting serial assessments of individuals after a new diagnosis could validate the findings of this study, both in the context of newly diagnosed hypertension and other health settings. It would allow for conclusions to be drawn about links between risk narratives and age, personal experience of risk, coping, retention of information, compliance and levels of anxiety.
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Conclusions |
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We demonstrate the use of denial and acceptance narratives by participants in the everyday process of living and coping with risk. The use of these narratives does not presuppose the presence or absence of relevant knowledge about hypertension, or the adoption (or not) of medically appropriate health-related behaviour in relation to the new diagnosis. Narratives can potentially change over time. Health professionals need to consider the use of narratives as a coping mechanism when communicating with patients, for example, in considering more closely the levels of knowledge, experience and anxieties of those patients who characterize themselves as ‘knowing nothing.’
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Acknowledgments |
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We thank Westerhope Medical Centre and Throckley Surgery for identifying patients, and Jill Francis and Tim Rapley for their valuable comments on an earlier version.
Funding: The study was conducted as part of NW's MSc (Health Sciences) and supported by an NHS Study Leave Educational Grant. Additional research costs were supported by an RCGP Scientific Foundation Board Grant.
Ethical approval: Ethics committee and PCT research governance approval were given for the study.
Conflicts of interest: none.
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Notes |
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Weaver NF, Murtagh M and Thomson RG. How do newly diagnosed hypertensives understand ‘risk’? Narratives used in coping with risk. Family Practice 2006 23: 637–643.
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