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Experiences of guilt and shame in patients with familial hypercholesterolemia: A qualitative interview study
Patient Education and Counseling 69 (2007) 108–113 www.elsevier.com/locate/pateducou
Experiences of guilt and shame in patients with familial hypercholesterolemia: A qualitative interview study Jan C. Frich a,b,c,*, Kirsti Malterud d,e, Per Fugelli a a
Research Unit for General Practice, Institute of General Practice and Community Medicine, P.O. Box 1130, Blindern, University of Oslo, N-0318 Oslo, Norway b Department of Neurology, Ulleva˚l University Hospital, N-0408 Oslo, Norway c Lipid Clinic, Medical Department, Rikshospitalet-Radiumhospitalet HF, N-0027 Oslo, Norway d Research Unit for General Practice, Unifob Health, Bergen, Norway e Research Unit and Department of General Practice, University of Copenhagen, Denmark Received 30 March 2007; received in revised form 29 June 2007; accepted 1 August 2007
Abstract Objective: To explore patients’ experiences of guilt and shame with regard to how they manage familial hypercholesterolemia. Methods: We interviewed 40 men and women diagnosed with heterozygous familial hypercholesterolemia. Data were analyzed by systematic text condensation inspired by Giorgi’s phenomenological method. Results: Participants disclosed their condition as inherited and not caused by an unhealthy lifestyle. They could experience guilt or shame if they violated their own standards for dietary management, or if a cholesterol test was not favorable. Participants had experienced health professionals who they felt had a moralizing attitude when counseling on lifestyle and diets. One group took this as a sign of care. Another group conveyed experiences of being humiliated in consultations. Conclusion: Patients with familial hypercholesterolemia may experience guilt and shame related to how they manage their condition. Health professionals’ counseling about lifestyle and diet may induce guilt and shame in patients. Practice implications: Health professionals should be sensitive to a patient’s readiness for counseling in order to diminish the risk of unintentionally inducing guilt and shame in patients. # 2007 Elsevier Ireland Ltd. All rights reserved. Keywords: Professional–patient relations; Hypercholesterolemia; Guilt; Shame; Patient education; Diet; Qualitative research
1. Introduction The notion that the individual is responsible for their own health is wide-spread in western societies [1], and health messages such as to stop smoking, to eat a healthy diet, to drink moderate amounts of alcohol and to take regular exercise are well known in the public. A negative effect of health promotion may be that people feel anxiety, guilt or shame [2,3]. Feelings of guilt and shame influence people’s health-seeking behaviors and patients’ relationships with health professionals [4,5]. Guilt and shame may have positive effects and motivate patients to health-related behaviors, but such emotions may also have a * Corresponding author at: Institute of General Practice and Community Medicine, P.O. Box 1130, Blindern, University of Oslo, N-0318 Oslo, Norway. Tel.: +47 22 850654; fax: +47 22 850590. E-mail address: [email protected] (J.C. Frich). 0738-3991/$ – see front matter # 2007 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.pec.2007.08.001
negative effect by causing anger, self-blame or depression [4]. Guilt and shame are related, but are usually distinguished as two separate emotions. Guilt is a self-directed anger over a violation of a norm, whereas shame is linked with anticipated or actual disapproval from others [4]. Research suggests that one may experience guilt or shame if being diagnosed with a potentially discrediting condition such as lung cancer or coronary heart disease [6,7]. Patients may also recount their illness stories in ways that counter potential claims that a condition is self-inflicted or mismanaged [8,9]. Individuals diagnosed with homozygous familial hypercholesterolemia may feel guilt if they fail to comply with treatment recommendations [10]. A better understanding of how patients with this condition experience guilt and shame may foster an improved clinical management. Familial hypercholesterolemia is an inherited metabolic condition, which in its heterozygous form affects approxi-
J.C. Frich et al. / Patient Education and Counseling 69 (2007) 108–113
mately 1 in 500 in most populations [11]. The homozygous form of the condition is rare, and in this paper ‘‘familial hypercholesterolemia’’ refers to the heterozygous form of the condition. The condition is caused by a mutation in the gene for the low-density-lipoprotein (LDL) receptor, and there is a 50% risk that offspring inherits the mutation. Familial hypercholesterolemia is characterized by raised plasma low-densitylipoprotein (LDL) cholesterol. A cumulative risk estimate suggests that, if the condition is untreated, 50% of men aged 50 years and 30% of women aged 60 years will develop coronary heart disease [11]. The condition is diagnosed on the basis of the patients’ family history of heart disease, clinical examination and laboratory tests. Medical treatment consists of LDL cholesterol lowering medication and a healthy diet with low amounts of saturated fat [11]. Current guidelines for clinical management also emphasize that patients should advised to be physically active and not to smoke [11]. We have conducted an interview study to understand more about how individuals with familial hypercholesterolemia perceive and manage their condition. We have previously used these data to explore how patients with a diagnosis of familial hypercholesterolemia experience the health service, and how they perceive their risk of heart disease [12,13]. The aim of the present article is to explore patients’ experiences of guilt and shame with regard to how they manage familial hypercholesterolemia. Our point of departure as medical doctors is a commitment to a patient-centered approach in which health professionals should elicit patients’ agendas and health-related resources, and encourage patients to take an active role in the management of their condition [14,15]. 2. Methods 2.1. Participants Our sampling strategy aimed at a sample of mainly young and asymptomatic participants with a diagnosis of familial hypercholesterolemia. We aimed for a sample with diversity regarding participants’ social background, family history of coronary heart disease, and time since diagnosis (Table 1). The first author interviewed 20 men (aged 14–53 years, average 31 years) and 20 women (aged 15–57 years, average 31 years). Seven participants had developed symptoms coronary heart disease such as myocardial infarction or angina pectoris. Thirty-five participants used lipid-lowering treatment. Participants were recruited from the Lipid Clinic, Medical Department, Rikshospitalet-Radiumhospitalet HF, Norway. The clinic has a scheme for diagnosing and treating patients with familial hypercholesterolemia. Patients have been referred for diagnosis and evaluation based on their raised lipid values, their family history of hypercholesterolemia and coronary heart disease in their family. Patients were approached through an invitation letter distributed to patients by doctors at the clinic. The sample size of 40 participants was a result of saturation in the data as consecutive interviews yielded diminishing returns in regard to new information.
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Table 1 Characteristics of participants (N = 40) Characteristic
No. (%)
Age (years) 10–19 20–29 30–39 40–49 50+
9 10 9 8 4
(22.5) (25) (22.5) (20) (10)
Gender Male Female Use of lipid-lowering medication Symptoms of coronary heart disease
20 20 35 7
(50) (50) (88) (18)
Children No Yes
21 (52.5) 19 (47.5)
Occupation Professional or higher managerial Other non-manual Skilled manual Manual Student/secondary education Disablement benefit
7 7 4 7 14 1
(17.5) (17.5) (10) (17.5) (23) (0)
2.2. Ethical approval The study has been approved by the regional committee for medical research ethics (Health Region East, Norway) and The Norwegian Data Inspectorate. 2.3. Data collection Data were obtained from semi-structured interviews that were audio taped. The interviews, lasting between 45 and 90 min, were conducted by the first author in the period June 2000 until March 2002. The participants were interviewed in the interviewers’ office (30), in their homes (8), at their workplace (2). The interviewer emphasized his role as researcher and that the study was independent of the treatment schedule at the clinic. An interview guide was developed on the basis of eight weeks of fieldwork, which involved informal conversations with patients and health professionals, and observation of medical encounters between health professionals and patients in the lipid clinic. The interview questions were open-ended and addressed how one perceived and managed the condition, participants’ experiences with the health service, and how they talked with other people about the condition. Emerging themes and hypotheses were explored in interviews with subsequent participants. 2.4. Analysis Audiotapes of the interviews were transcribed by the first author, and these transcripts were analyzed qualitatively. The first author and the last author read 10 transcripts independently and developed a coding frame for the analysis. The first author
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J.C. Frich et al. / Patient Education and Counseling 69 (2007) 108–113
Fig. 1. An overview of how the material from the interviews was analyzed.
coded all transcripts, and all authors independently read the material and contributed in negotiating the final categories and their contents. Material about participants’ experiences of guilt and shame was identified and used for systematic text condensation, inspired by Giorgi’s phenomenological analysis, through the following four stages: (a) reading all the material to obtain an overall impression and bracketing previous preconceptions; (b) identifying units of meaning, representing different aspects of participants’ experiences of guilt and shame and coding for these; (c) condensing and summarizing the contents of each of the coded groups and (d) summarizing the contents of each code group to generalize descriptions and concepts concerning guilt and shame [16,17]. Quotes from the interviews were translated from Norwegian to English by the first author. Fig. 1 provides a schematic overview of the analysis. 3. Results 3.1. Overview We found that participants disclosed their condition as ‘‘inherited’’ and not caused by an unhealthy lifestyle. They could experience guilt or shame if they had violated their own standards for dietary management, or if a cholesterol test was not favorable. Participants had experienced health professionals who they felt had a moralizing attitude when counseling on lifestyle and diets. One group took this as a sign of care. Another group conveyed experiences of being humiliated in consultations. We elaborate further on these findings below. 3.2. Views about disclosure Participants did not report guilt or shame for having the condition. They characterized their raised cholesterol as ‘‘inherited’’ or as ‘‘a genetic disorder.’’ Some had informed other people about their condition, while others had not disclosed that they had raised cholesterol to other than family members and relatives. Participants expressed relief by being
diagnosed and knowing that their condition was not selfinflicted, as illustrated by this statement: ‘‘It’s better to have something hereditary compared to something you are to blame for. You can’t help your genes.’’ (P1, man, aged 41 years). Some participants, particularly young women, described their raised cholesterol as an ‘‘embarrassing’’ trait or as a ‘‘stigma’’. A woman, who recounted how she felt when being diagnosed, said: ‘‘It’s something you associate with old people, perhaps overweight, smoking, alcohol, and an unhealthy lifestyle . . . It’s almost as if it’s a stigma . . . I say to other people that it’s something in the liver that doesn’t work as it should . . . it takes up only half of the cholesterol from the blood . . . it enables me to emphasize that it is not my fault, that it’s something inherited. I miss a receptor! I’m born like this!’’ (P32, woman, aged 31 years). Raised cholesterol was seen as a potentially discrediting condition, and participants appeared to make efforts to tell others that their condition was not self-inflicted and not caused by an unhealthy lifestyle. 3.3. Managing one’s raised cholesterol A common view was that one could influence the risk of heart disease through medication and their health-related behavior, and that one ought to do one’s best to prevent premature heart disease. Some said that they did not care much about their cholesterol, but the majority referred to test results as ‘‘moments of truth’’, as illustrated by this quote: ‘‘I took a test this autumn, and [the cholesterol] had increased compared with previous results. At that moment I was very disappointed with myself.’’ (P39, man, aged 22). Participants could keep records of previous cholesterol tests to monitor how they managed their condition. A violation of their own standards for managing risk could cause feelings of
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disappointment, guilt and shame. Some reported that they forgot to take the tablet every now and then, but such failure to adhere to medical treatment was considered as a minor problem. Daily smokers referred to their habit as ‘‘a personal choice’’ and a ‘‘calculated risk’’. Few reported guilt for lack of physical exercise. Food and dietary management, however, was a theme that was connected to experiences of guilt and shame. 3.4. Food and dietary management Participants’ views about food and dietary management varied and appeared to be influenced by their life situation, preferences and perceived vulnerability to heart disease. While some disliked even the sight of unhealthy food, such as sausages or fat, others had a more relaxed attitude, as illustrated in this quote: ‘‘I’ve changed my diet as much as I can . . . I don’t want to bother too much and speculate, live an unworthy life and die at the age of seventy. I’d rather be happy and die when I’m fifty’’ (P20, man, aged 43 years). Guilt associated with dietary management was related either to results from cholesterol test or to particular situations or meals, as this quote exemplifies: ‘‘If I have been in a birthday party and eaten sausages and potatoes and much food which contain a lot of fat, then I feel guilt and have to eat very healthy food when I come home . . . like carrots.’’ (P8, woman, aged 15 years). Participants reported that they balanced their own or their family’s dietary standards with anticipated social norms. Some did not compromise their dietary standards, while others did not want to be seen as different and felt that it was unpleasant to refuse eating what they were served. Most participants had an approach to diet that allowed for indulgences at weekends or at special occasions and maintaining a strict diet rest of the week. 3.5. Clinical encounters Participants expected health professionals to respect their preferences, also when their diet and management of other risk factors were considered to be unfavorable. Some had felt guilt and shame when health professionals commented on their diet, weight or unfavorable results from cholesterol tests. There were significant differences in participants’ accounts about their encounters with health professionals. Some told about experiences with health professionals who they felt had a moralizing approach: ‘‘We have an open dialogue, but in the beginning, when I was younger, I sometimes felt they had a moralizing attitude. But they have to moralize too! And I understand why they are like that. It’s their job to get the message through’’ (P28, woman, aged 31 years). Participants in this group experienced health professionals’ approach as a sign that they cared for their patients. Other participants reported that they had experienced being humi-
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liated by health professionals’ approach in the consultation. An underlying theme in these accounts was an experience of being given instructions about what to do rather than advice and information about alternatives, as this quote illustrates: ‘‘You can eat this, but not that, in a way . . . It was not an advice or an option; it was as if this is how it should be done. And I disliked it. I was annoyed, really, when they talked to me like that’’ (P33, woman, aged 21 years). Participants reported a sense of being vulnerable in the consultation, and they emphasized that ‘‘personal chemistry’’ was important, as well as ‘‘feeling safe and secure’’ in the encounter with health professionals. 4. Discussion and conclusion 4.1. Discussion 4.1.1. Validity and transferability Participants in our study were recruited from a specialist clinic for metabolic lipid disorders and had a diagnosis of familial hypercholesterolemia. As they had contacted the health service, there was probably a selection towards people with a positive attitude to medical treatment in our sample. We expected that people would talk about their experiences of guilt and shame in other terms. We have therefore interpreted some experiences of humiliation as instances where participants experienced guilt or shame in the clinical encounter. We think our results are transferable to patients with familial hypercholesterolemia who attend specialist health care. Our findings may also be transferable to patients with other chronic conditions which involve self-management and counseling by health professionals. Our sample consists of relatively young people and we do not know to which extent our findings are valid for older people. 4.1.2. What does this study add to previous knowledge? Our results suggest that patients with familial hypercholesterolemia distinguished between lifestyle and inheritance as cause of raised cholesterol, and that patients perceived themselves to be free of any blame for having the condition. We also found that patients report guilt connected with selfmanagement and particularly to dietary management. These findings are in accordance with other studies [10,18]. Our study adds to previous knowledge by suggesting that patients with familial hypercholesterolemia make efforts to emphasize that their condition is inherited and not self-inflicted or caused by an unhealthy lifestyle. Further, we think participants’ accounts suggest that health professionals may induce guilt and shame in patients with familial hypercholesterolemia. 4.1.3. Patients’ self-presentation A great emphasis on self-management and self-control is a characteristic of modern norms related to health [2,3]. Health promotion has stressed the importance of dietary management to prevent future disease [3]. A perceived failure to comply with these norms may cause guilt and shame. According to Goffman,
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individuals with a potentially discrediting condition may attempt to preserve their personal identity and dignity by controlling information about the stigmatizing attribute [19]. We found that patients emphasize that their condition is inherited. While some do not disclose that they have raised cholesterol, others refer to their condition as a disease in the liver or in the blood. A stigma represents a moral threat where something is at stake to an individual [20], and controlling information is a strategy that may prevent situations in which may induce experiences of guilt and shame. The amount of this ‘‘shame-preventive work’’ appeared to vary among patients, which suggest the social meaning of raised cholesterol is determined by other characteristics of the individual who has the trait. While raised cholesterol may be regarded as natural in old people it may be perceived as a potentially discrediting attribute that signifies lack of self-control in young people. 4.1.4. Guilt and shame in the clinical encounter Our findings suggest that some may experience health professionals’ moralizing approach as a sign of care, while others experience being humiliated. Shame and guilt are emotions that may not be recognized by a person and may transform into anger or frustration. Shame and guilt may be displayed non-verbally through body postures such as head down, slumped posture and eye gaze avoidance [21], often unconsciously and unintended on the doctor’s side [22]. Our study focused on participants’ experiences and we have no data on what actually took place in the clinical encounters our participants refer to. Patients’ experiences are, however, a valuable source of knowledge for the health service [23,24]. Assumptions about responsibility and blame are often implicit in counseling about lifestyle and diet [25], and patients may experience health professionals’ assessment of how they manage a condition as an intrusion into their private life and a threat to their dignity. Negative evaluations from health professional may cause shame if they are they are transformed into a negative self-evaluation in patients [21]. 4.2. Conclusion Patients with familial hypercholesterolemia may experience guilt and shame related to how they manage their condition. Health professionals’ counseling about lifestyle and diet may induce guilt and shame in patients. 4.3. Practice implications Patient education and counseling should be based on recognition of the patient as the authority on their own life. Recognition of patients’ preferences and resources [15] may reduce the health professionals’ risk of unintentionally inducing guilt and shame in patients [22]. Health professionals should therefore elicit patients’ readiness for counseling and health education and acknowledge the patients’ health-related preferences [25,26]. One also needs to recognize that patients’ perceived vulnerability to disease and motivation for counseling might vary over time [12,27,28].
Health professionals run a risk of inducing guilt or shame with lectures about how a condition should be managed and by confronting patients with their failures or weaknesses. The patient may reject further counseling to preserve their dignity. Communicative strategies that diminish experiences of guilt and shame in patients have been described in the literature [4,5,22]. We think that one should avoid blaming patients if they say they have followed advice for medical and lifestyle treatment. Second, health professionals may diminish guilt by emphasizing the uncertainties with self-management, and tell the patient that there may be a rise in cholesterol even with the best efforts of the patient. Third, one should encourage patients’ sense of responsibility up to a certain point, but not give the impression that everything is dependent upon his or her own health-related behavior. Fourth, if a patient expresses guilt or shame, either verbally and non-verbally, one should not confirm the emotion by telling the patient that you understand very well why the patient feels ashamed. Such a strategy may only enhance the feeling of shame in the patient. Alternatively one may use one’s authority to normalize such emotions by telling the patient that you know that it can be difficult sometimes, and that in your experiences other patients have felt the same.
Acknowledgements The research for this paper was supported by the Norwegian Research Council (grant number 130435/330), and with the aid of the EXTRA funds from the Norwegian Foundation for Health and Rehabilitation (grant number 2003/2/0239).
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[20] Yang LH, Kleinman A, Link BG, Phelan JC, Lee S, Good B. Culture and stigma: adding moral experience to stigma theory. Soc Sci Med 2007;64: 1524–35. [21] Dickerson SS, Gruenewald TL, Kemeny ME. When the social self is threatened: shame, physiology, and health. J Pers 2004;72:1191–216. [22] Malterud K, Hollnagel H. Avoiding humiliations in the clinical encounter. Scand J Prim Health Care 2007;25:69–74. [23] Annandale E, Hunt K. Accounts of disagreements with doctors. Soc Sci Med 1998;46:119–29. [24] Epstein RM. Making communication research matter: what do patients notice, what do patients want, and what do patients need? Patient Educ Couns 2006;60:272–8. [25] Sachs L. Causality, responsibility and blame—core issues in the cultural construction and subtext of prevention. Sociol Health Ill 1996;18:632–52. [26] Say R, Murtagh M, Thomson R. Patients’ preference for involvement in medical decision-making: a narrative review. Patient Educ Couns 2006;60:102–14. [27] Nielsen K-DB, Dyhr L, Lauritzen T, Malterud K. Long-term impact of elevated cardiovascular risk detected by screening: a qualitative interview study. Scand J Prim Health Care 2005;23:233–8. [28] Murray E, Pollack L, White M, Lo B. Clinical decision-making: patients’ preferences and experiences. Patient Educ Couns 2007;65:189–96.
Experiences of guilt and shame in patients with familial hypercholesterolemia: A qualitative interview study Jan C. Frich a,b,c,*, Kirsti Malterud d,e, Per Fugelli a a
Research Unit for General Practice, Institute of General Practice and Community Medicine, P.O. Box 1130, Blindern, University of Oslo, N-0318 Oslo, Norway b Department of Neurology, Ulleva˚l University Hospital, N-0408 Oslo, Norway c Lipid Clinic, Medical Department, Rikshospitalet-Radiumhospitalet HF, N-0027 Oslo, Norway d Research Unit for General Practice, Unifob Health, Bergen, Norway e Research Unit and Department of General Practice, University of Copenhagen, Denmark Received 30 March 2007; received in revised form 29 June 2007; accepted 1 August 2007
Abstract Objective: To explore patients’ experiences of guilt and shame with regard to how they manage familial hypercholesterolemia. Methods: We interviewed 40 men and women diagnosed with heterozygous familial hypercholesterolemia. Data were analyzed by systematic text condensation inspired by Giorgi’s phenomenological method. Results: Participants disclosed their condition as inherited and not caused by an unhealthy lifestyle. They could experience guilt or shame if they violated their own standards for dietary management, or if a cholesterol test was not favorable. Participants had experienced health professionals who they felt had a moralizing attitude when counseling on lifestyle and diets. One group took this as a sign of care. Another group conveyed experiences of being humiliated in consultations. Conclusion: Patients with familial hypercholesterolemia may experience guilt and shame related to how they manage their condition. Health professionals’ counseling about lifestyle and diet may induce guilt and shame in patients. Practice implications: Health professionals should be sensitive to a patient’s readiness for counseling in order to diminish the risk of unintentionally inducing guilt and shame in patients. # 2007 Elsevier Ireland Ltd. All rights reserved. Keywords: Professional–patient relations; Hypercholesterolemia; Guilt; Shame; Patient education; Diet; Qualitative research
1. Introduction The notion that the individual is responsible for their own health is wide-spread in western societies [1], and health messages such as to stop smoking, to eat a healthy diet, to drink moderate amounts of alcohol and to take regular exercise are well known in the public. A negative effect of health promotion may be that people feel anxiety, guilt or shame [2,3]. Feelings of guilt and shame influence people’s health-seeking behaviors and patients’ relationships with health professionals [4,5]. Guilt and shame may have positive effects and motivate patients to health-related behaviors, but such emotions may also have a * Corresponding author at: Institute of General Practice and Community Medicine, P.O. Box 1130, Blindern, University of Oslo, N-0318 Oslo, Norway. Tel.: +47 22 850654; fax: +47 22 850590. E-mail address: [email protected] (J.C. Frich). 0738-3991/$ – see front matter # 2007 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.pec.2007.08.001
negative effect by causing anger, self-blame or depression [4]. Guilt and shame are related, but are usually distinguished as two separate emotions. Guilt is a self-directed anger over a violation of a norm, whereas shame is linked with anticipated or actual disapproval from others [4]. Research suggests that one may experience guilt or shame if being diagnosed with a potentially discrediting condition such as lung cancer or coronary heart disease [6,7]. Patients may also recount their illness stories in ways that counter potential claims that a condition is self-inflicted or mismanaged [8,9]. Individuals diagnosed with homozygous familial hypercholesterolemia may feel guilt if they fail to comply with treatment recommendations [10]. A better understanding of how patients with this condition experience guilt and shame may foster an improved clinical management. Familial hypercholesterolemia is an inherited metabolic condition, which in its heterozygous form affects approxi-
J.C. Frich et al. / Patient Education and Counseling 69 (2007) 108–113
mately 1 in 500 in most populations [11]. The homozygous form of the condition is rare, and in this paper ‘‘familial hypercholesterolemia’’ refers to the heterozygous form of the condition. The condition is caused by a mutation in the gene for the low-density-lipoprotein (LDL) receptor, and there is a 50% risk that offspring inherits the mutation. Familial hypercholesterolemia is characterized by raised plasma low-densitylipoprotein (LDL) cholesterol. A cumulative risk estimate suggests that, if the condition is untreated, 50% of men aged 50 years and 30% of women aged 60 years will develop coronary heart disease [11]. The condition is diagnosed on the basis of the patients’ family history of heart disease, clinical examination and laboratory tests. Medical treatment consists of LDL cholesterol lowering medication and a healthy diet with low amounts of saturated fat [11]. Current guidelines for clinical management also emphasize that patients should advised to be physically active and not to smoke [11]. We have conducted an interview study to understand more about how individuals with familial hypercholesterolemia perceive and manage their condition. We have previously used these data to explore how patients with a diagnosis of familial hypercholesterolemia experience the health service, and how they perceive their risk of heart disease [12,13]. The aim of the present article is to explore patients’ experiences of guilt and shame with regard to how they manage familial hypercholesterolemia. Our point of departure as medical doctors is a commitment to a patient-centered approach in which health professionals should elicit patients’ agendas and health-related resources, and encourage patients to take an active role in the management of their condition [14,15]. 2. Methods 2.1. Participants Our sampling strategy aimed at a sample of mainly young and asymptomatic participants with a diagnosis of familial hypercholesterolemia. We aimed for a sample with diversity regarding participants’ social background, family history of coronary heart disease, and time since diagnosis (Table 1). The first author interviewed 20 men (aged 14–53 years, average 31 years) and 20 women (aged 15–57 years, average 31 years). Seven participants had developed symptoms coronary heart disease such as myocardial infarction or angina pectoris. Thirty-five participants used lipid-lowering treatment. Participants were recruited from the Lipid Clinic, Medical Department, Rikshospitalet-Radiumhospitalet HF, Norway. The clinic has a scheme for diagnosing and treating patients with familial hypercholesterolemia. Patients have been referred for diagnosis and evaluation based on their raised lipid values, their family history of hypercholesterolemia and coronary heart disease in their family. Patients were approached through an invitation letter distributed to patients by doctors at the clinic. The sample size of 40 participants was a result of saturation in the data as consecutive interviews yielded diminishing returns in regard to new information.
109
Table 1 Characteristics of participants (N = 40) Characteristic
No. (%)
Age (years) 10–19 20–29 30–39 40–49 50+
9 10 9 8 4
(22.5) (25) (22.5) (20) (10)
Gender Male Female Use of lipid-lowering medication Symptoms of coronary heart disease
20 20 35 7
(50) (50) (88) (18)
Children No Yes
21 (52.5) 19 (47.5)
Occupation Professional or higher managerial Other non-manual Skilled manual Manual Student/secondary education Disablement benefit
7 7 4 7 14 1
(17.5) (17.5) (10) (17.5) (23) (0)
2.2. Ethical approval The study has been approved by the regional committee for medical research ethics (Health Region East, Norway) and The Norwegian Data Inspectorate. 2.3. Data collection Data were obtained from semi-structured interviews that were audio taped. The interviews, lasting between 45 and 90 min, were conducted by the first author in the period June 2000 until March 2002. The participants were interviewed in the interviewers’ office (30), in their homes (8), at their workplace (2). The interviewer emphasized his role as researcher and that the study was independent of the treatment schedule at the clinic. An interview guide was developed on the basis of eight weeks of fieldwork, which involved informal conversations with patients and health professionals, and observation of medical encounters between health professionals and patients in the lipid clinic. The interview questions were open-ended and addressed how one perceived and managed the condition, participants’ experiences with the health service, and how they talked with other people about the condition. Emerging themes and hypotheses were explored in interviews with subsequent participants. 2.4. Analysis Audiotapes of the interviews were transcribed by the first author, and these transcripts were analyzed qualitatively. The first author and the last author read 10 transcripts independently and developed a coding frame for the analysis. The first author
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Fig. 1. An overview of how the material from the interviews was analyzed.
coded all transcripts, and all authors independently read the material and contributed in negotiating the final categories and their contents. Material about participants’ experiences of guilt and shame was identified and used for systematic text condensation, inspired by Giorgi’s phenomenological analysis, through the following four stages: (a) reading all the material to obtain an overall impression and bracketing previous preconceptions; (b) identifying units of meaning, representing different aspects of participants’ experiences of guilt and shame and coding for these; (c) condensing and summarizing the contents of each of the coded groups and (d) summarizing the contents of each code group to generalize descriptions and concepts concerning guilt and shame [16,17]. Quotes from the interviews were translated from Norwegian to English by the first author. Fig. 1 provides a schematic overview of the analysis. 3. Results 3.1. Overview We found that participants disclosed their condition as ‘‘inherited’’ and not caused by an unhealthy lifestyle. They could experience guilt or shame if they had violated their own standards for dietary management, or if a cholesterol test was not favorable. Participants had experienced health professionals who they felt had a moralizing attitude when counseling on lifestyle and diets. One group took this as a sign of care. Another group conveyed experiences of being humiliated in consultations. We elaborate further on these findings below. 3.2. Views about disclosure Participants did not report guilt or shame for having the condition. They characterized their raised cholesterol as ‘‘inherited’’ or as ‘‘a genetic disorder.’’ Some had informed other people about their condition, while others had not disclosed that they had raised cholesterol to other than family members and relatives. Participants expressed relief by being
diagnosed and knowing that their condition was not selfinflicted, as illustrated by this statement: ‘‘It’s better to have something hereditary compared to something you are to blame for. You can’t help your genes.’’ (P1, man, aged 41 years). Some participants, particularly young women, described their raised cholesterol as an ‘‘embarrassing’’ trait or as a ‘‘stigma’’. A woman, who recounted how she felt when being diagnosed, said: ‘‘It’s something you associate with old people, perhaps overweight, smoking, alcohol, and an unhealthy lifestyle . . . It’s almost as if it’s a stigma . . . I say to other people that it’s something in the liver that doesn’t work as it should . . . it takes up only half of the cholesterol from the blood . . . it enables me to emphasize that it is not my fault, that it’s something inherited. I miss a receptor! I’m born like this!’’ (P32, woman, aged 31 years). Raised cholesterol was seen as a potentially discrediting condition, and participants appeared to make efforts to tell others that their condition was not self-inflicted and not caused by an unhealthy lifestyle. 3.3. Managing one’s raised cholesterol A common view was that one could influence the risk of heart disease through medication and their health-related behavior, and that one ought to do one’s best to prevent premature heart disease. Some said that they did not care much about their cholesterol, but the majority referred to test results as ‘‘moments of truth’’, as illustrated by this quote: ‘‘I took a test this autumn, and [the cholesterol] had increased compared with previous results. At that moment I was very disappointed with myself.’’ (P39, man, aged 22). Participants could keep records of previous cholesterol tests to monitor how they managed their condition. A violation of their own standards for managing risk could cause feelings of
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disappointment, guilt and shame. Some reported that they forgot to take the tablet every now and then, but such failure to adhere to medical treatment was considered as a minor problem. Daily smokers referred to their habit as ‘‘a personal choice’’ and a ‘‘calculated risk’’. Few reported guilt for lack of physical exercise. Food and dietary management, however, was a theme that was connected to experiences of guilt and shame. 3.4. Food and dietary management Participants’ views about food and dietary management varied and appeared to be influenced by their life situation, preferences and perceived vulnerability to heart disease. While some disliked even the sight of unhealthy food, such as sausages or fat, others had a more relaxed attitude, as illustrated in this quote: ‘‘I’ve changed my diet as much as I can . . . I don’t want to bother too much and speculate, live an unworthy life and die at the age of seventy. I’d rather be happy and die when I’m fifty’’ (P20, man, aged 43 years). Guilt associated with dietary management was related either to results from cholesterol test or to particular situations or meals, as this quote exemplifies: ‘‘If I have been in a birthday party and eaten sausages and potatoes and much food which contain a lot of fat, then I feel guilt and have to eat very healthy food when I come home . . . like carrots.’’ (P8, woman, aged 15 years). Participants reported that they balanced their own or their family’s dietary standards with anticipated social norms. Some did not compromise their dietary standards, while others did not want to be seen as different and felt that it was unpleasant to refuse eating what they were served. Most participants had an approach to diet that allowed for indulgences at weekends or at special occasions and maintaining a strict diet rest of the week. 3.5. Clinical encounters Participants expected health professionals to respect their preferences, also when their diet and management of other risk factors were considered to be unfavorable. Some had felt guilt and shame when health professionals commented on their diet, weight or unfavorable results from cholesterol tests. There were significant differences in participants’ accounts about their encounters with health professionals. Some told about experiences with health professionals who they felt had a moralizing approach: ‘‘We have an open dialogue, but in the beginning, when I was younger, I sometimes felt they had a moralizing attitude. But they have to moralize too! And I understand why they are like that. It’s their job to get the message through’’ (P28, woman, aged 31 years). Participants in this group experienced health professionals’ approach as a sign that they cared for their patients. Other participants reported that they had experienced being humi-
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liated by health professionals’ approach in the consultation. An underlying theme in these accounts was an experience of being given instructions about what to do rather than advice and information about alternatives, as this quote illustrates: ‘‘You can eat this, but not that, in a way . . . It was not an advice or an option; it was as if this is how it should be done. And I disliked it. I was annoyed, really, when they talked to me like that’’ (P33, woman, aged 21 years). Participants reported a sense of being vulnerable in the consultation, and they emphasized that ‘‘personal chemistry’’ was important, as well as ‘‘feeling safe and secure’’ in the encounter with health professionals. 4. Discussion and conclusion 4.1. Discussion 4.1.1. Validity and transferability Participants in our study were recruited from a specialist clinic for metabolic lipid disorders and had a diagnosis of familial hypercholesterolemia. As they had contacted the health service, there was probably a selection towards people with a positive attitude to medical treatment in our sample. We expected that people would talk about their experiences of guilt and shame in other terms. We have therefore interpreted some experiences of humiliation as instances where participants experienced guilt or shame in the clinical encounter. We think our results are transferable to patients with familial hypercholesterolemia who attend specialist health care. Our findings may also be transferable to patients with other chronic conditions which involve self-management and counseling by health professionals. Our sample consists of relatively young people and we do not know to which extent our findings are valid for older people. 4.1.2. What does this study add to previous knowledge? Our results suggest that patients with familial hypercholesterolemia distinguished between lifestyle and inheritance as cause of raised cholesterol, and that patients perceived themselves to be free of any blame for having the condition. We also found that patients report guilt connected with selfmanagement and particularly to dietary management. These findings are in accordance with other studies [10,18]. Our study adds to previous knowledge by suggesting that patients with familial hypercholesterolemia make efforts to emphasize that their condition is inherited and not self-inflicted or caused by an unhealthy lifestyle. Further, we think participants’ accounts suggest that health professionals may induce guilt and shame in patients with familial hypercholesterolemia. 4.1.3. Patients’ self-presentation A great emphasis on self-management and self-control is a characteristic of modern norms related to health [2,3]. Health promotion has stressed the importance of dietary management to prevent future disease [3]. A perceived failure to comply with these norms may cause guilt and shame. According to Goffman,
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individuals with a potentially discrediting condition may attempt to preserve their personal identity and dignity by controlling information about the stigmatizing attribute [19]. We found that patients emphasize that their condition is inherited. While some do not disclose that they have raised cholesterol, others refer to their condition as a disease in the liver or in the blood. A stigma represents a moral threat where something is at stake to an individual [20], and controlling information is a strategy that may prevent situations in which may induce experiences of guilt and shame. The amount of this ‘‘shame-preventive work’’ appeared to vary among patients, which suggest the social meaning of raised cholesterol is determined by other characteristics of the individual who has the trait. While raised cholesterol may be regarded as natural in old people it may be perceived as a potentially discrediting attribute that signifies lack of self-control in young people. 4.1.4. Guilt and shame in the clinical encounter Our findings suggest that some may experience health professionals’ moralizing approach as a sign of care, while others experience being humiliated. Shame and guilt are emotions that may not be recognized by a person and may transform into anger or frustration. Shame and guilt may be displayed non-verbally through body postures such as head down, slumped posture and eye gaze avoidance [21], often unconsciously and unintended on the doctor’s side [22]. Our study focused on participants’ experiences and we have no data on what actually took place in the clinical encounters our participants refer to. Patients’ experiences are, however, a valuable source of knowledge for the health service [23,24]. Assumptions about responsibility and blame are often implicit in counseling about lifestyle and diet [25], and patients may experience health professionals’ assessment of how they manage a condition as an intrusion into their private life and a threat to their dignity. Negative evaluations from health professional may cause shame if they are they are transformed into a negative self-evaluation in patients [21]. 4.2. Conclusion Patients with familial hypercholesterolemia may experience guilt and shame related to how they manage their condition. Health professionals’ counseling about lifestyle and diet may induce guilt and shame in patients. 4.3. Practice implications Patient education and counseling should be based on recognition of the patient as the authority on their own life. Recognition of patients’ preferences and resources [15] may reduce the health professionals’ risk of unintentionally inducing guilt and shame in patients [22]. Health professionals should therefore elicit patients’ readiness for counseling and health education and acknowledge the patients’ health-related preferences [25,26]. One also needs to recognize that patients’ perceived vulnerability to disease and motivation for counseling might vary over time [12,27,28].
Health professionals run a risk of inducing guilt or shame with lectures about how a condition should be managed and by confronting patients with their failures or weaknesses. The patient may reject further counseling to preserve their dignity. Communicative strategies that diminish experiences of guilt and shame in patients have been described in the literature [4,5,22]. We think that one should avoid blaming patients if they say they have followed advice for medical and lifestyle treatment. Second, health professionals may diminish guilt by emphasizing the uncertainties with self-management, and tell the patient that there may be a rise in cholesterol even with the best efforts of the patient. Third, one should encourage patients’ sense of responsibility up to a certain point, but not give the impression that everything is dependent upon his or her own health-related behavior. Fourth, if a patient expresses guilt or shame, either verbally and non-verbally, one should not confirm the emotion by telling the patient that you understand very well why the patient feels ashamed. Such a strategy may only enhance the feeling of shame in the patient. Alternatively one may use one’s authority to normalize such emotions by telling the patient that you know that it can be difficult sometimes, and that in your experiences other patients have felt the same.
Acknowledgements The research for this paper was supported by the Norwegian Research Council (grant number 130435/330), and with the aid of the EXTRA funds from the Norwegian Foundation for Health and Rehabilitation (grant number 2003/2/0239).
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