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Cancer and stigma: experience of patients with chemotherapy-induced alopecia
Patient Education and Counseling 52 (2004) 333–339
Review
Cancer and stigma: experience of patients with chemotherapy-induced alopecia Sophia Rosman∗ INSERM U 537-CREGAS, 80, Rue du Général Leclerc, 94276 Le Kremlin Bicˆetre Cedex, France Received 12 September 2002; received in revised form 8 January 2003; accepted 13 January 2003
Abstract Chemotherapy-induced alopecia is one of the most distressing side-effects of chemotherapy. In this article we examine how patients react to hair loss due to chemotherapy; for women in particular, the reaction involves a confrontation with the lethal nature of cancer, whilst for men it is a normal and inevitable consequence of treatment. We then analyse the strategies used to cope with alopecia. One strategy involves camouflaging and hiding; the patients wear wigs in an attempt to partially or completely hide their hair loss. Another strategy is to treat it as commonplace: wearing a wig is played down and banalised. Sometimes this can take the form of provocation, in which case baldness is seen as the symbol of the cancer patient’s new identity. © 2003 Elsevier Science Ireland Ltd. All rights reserved. Keywords: Cancer; Chemotherapy-induced alopecia; Qualitative analysis; Illness experience
1. Introduction As part of a research programme run in partnership with the cancer hospital Institut Gustave Roussy (France) on the symptom of fatigue among cancer patients, we carried out an exploratory qualitative study among 35 persons with lung or breast cancer. The purpose of this study was to use in-depth interviews to analyse how fatigue is experienced, e.g. the way in which it is perceived by the patients, what they believe to be the cause, its impact on their everyday lives and the strategies used to reduce this impact. During the interviews another issue spontaneously emerged, one which for many patients was a greater problem than that of fatigue or pain: chemotherapy-induced alopecia. Eighty percent of the interviewees had undergone chemotherapy, and almost all of them had lost all of their hair. The impact of this event on their everyday lives and on their social relations led me to take a closer look at this issue. 1.1. Problem and theoretical context The impact of hair loss on the lives of cancer patients is something which has mainly been examined by healthcare professionals. The aim of these works was to understand and
∗ Tel.: +33-1-49-59-19-54; fax: +33-1-46-71-32-70. E-mail address: [email protected] (S. Rosman).
measure the consequences of hair loss within such frameworks as “self-esteem”, “body image” and “self-perception”. They are based upon measurement scales or narrative analysis. Among the works using measurement scales one might mention those of Carpenter and Brockopp [1], whose purpose was to examine the concept of self-esteem within a population of women suffering from chemotherapy-induced alopecia. They did a study combining qualitative and quantitative methods among 30 female cancer patients. Self-esteem was measured using the Cantrill Self-Anchoring Scale (CSA), a 10-point scale that allows collection of qualitative data as subjects define the endpoints of the scale. Subjects were also asked to rate the levels of self-esteem they had at the time of the interview and, retrospectively, prior to the diagnosis of cancer. This study finds that when alopecia occurs during active treatment with chemotherapy, self-esteem is significantly lower than it was prior to diagnosis. Age was not significantly correlated with self-esteem scores, nor did the degree of hair loss influence self-esteem. Another study using measurement scales is that of Münstedt et al. [2]. They carried out a prospective longitudinal study in which self-concept and body image were analysed in 29 patients who, after histological confirmation of gynaecological cancer, were to receive complete alopecia-inducing chemotherapy. The analysis was made before the commencement of treatment and repeated both when alopecia was complete and after the termination of therapy when patients had already experienced re-growth of hair. The
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study used the Frankfurt self-concept (FSKN) and Frankfurt body-concept scales (FKKS), the FSAP scale (general ability to solve problems), the FSSW scale (general self-esteem) and the SGKB (state of health) and SKEF (physical fitness) scales. For all of the above scales, results worsened during chemotherapy and did not return to normal or improve when patients experienced re-growth of hair. It was found that 73% of the patients did not feel as self-confident as they had prior to treatment, and that for 46% alopecia was the most traumatic side effect of chemotherapy. Williams et al. [3] did a qualitative study on alopecia, using personal narratives to illustrate the need to understand the impact of alopecia on the person’s identity as well as on everyday activities. The study sample consisted of 15 adults (13 women and 2 men) who had been treated with chemotherapy for a variety of cancers. The results of this study show that the patients were unprepared for hair loss and that they had an altered sense of self. Hair loss influenced professional role performance, whilst the loss of facial hair interfered with the patients’ ability to express themselves. The authors of this article also conducted a focus group with women who had experienced chemotherapy-related alopecia. The findings indicated that the following reactions were experienced by most of the group: (1) not being prepared, (2) shock, (3) personal embarrassment, (4) loss of a sense of self [4]. Some studies, such as Freedman’s [5], show that among patients with breast cancer, hair loss can be harder to cope with than the loss of a breast. Hair is a symbol of life and identity, and plays an important role in social communication. It can reflect social class, sex, profession, religious belief, and social or political conviction. For women in particular, hair is an important indicator of personality, attractiveness and femininity. The symbolic importance of hair may be clearly observed when it is cut upon entry into a “totalitarian institution” [6] (prison, psychiatric asylum, concentration camp, armed forces) as a sign of submission and of loss of personal identity [7]. Hair is a major aspect of body image and plays a role in social interaction. Hair loss means a loss of personality and self-esteem which, as we have seen above, also leads to a loss in self-confidence which may persist even after the hair has grown back [2]. People with chemotherapy-related alopecia frequently suffer from depression and anxiety [8], both of which are enhanced by the fact that alopecia is a constant reminder of the presence of cancer [3]. In addition, not only is there a change in the patients’ physical appearance due to baldness, but also a change to their faces as a whole, in as much as they lose both eyebrows and eyelashes. This is a traumatic experience because it not only affects the way one sees oneself, but also one’s social interaction. Whilst chemotherapy-related alopecia continues to be widely explored by healthcare professionals, as far as I am aware there have never been any sociological studies on this theme. I would like to use the Stigma [9] conceptual framework to analyse the data. In this study Goffman looks
at how people with a distinguishing difference (illness, handicap, etc.) cope with their stigma in terms of social interaction. He distinguishes between the “discredited” and the “discreditable” individual; in the one case the stigma is instantly visible, whereas in the other the person is afflicted with an invisible stigma. The former have to integrate their stigma into social interaction and cope with social judgements, whilst the latter are faced with what Goffman calls “the management of information”: who should one tell that one has a stigma? When and how should one tell them? Having kept it secret, when due to his stigma the discreditable person decides to tell his family/friends/colleagues, Goffman talks of “disclosure etiquette”. In this particular analysis, the persons with chemotherapyinduced alopecia are suffering from the stigma of the alopecia with which they have to deal during social interaction. They are discredited when the alopecia is instantly visible, and discreditable when they hide their hair loss by, for example, wearing a wig. In this article I will look at how the interviewees cope with their hair loss, how they perceive it, and what strategies they use to “live with it” depending on whether the stigma is discredited or discreditable.
2. Methods The exploratory qualitative study took place in a cancer hospital in the suburbs of Paris (Villejuif). Thirty-five patients were interviewed before or after their consultation with the specialist. The selection criteria for the sample were as follows: having breast or lung cancer and having been aware of the diagnosis for at least 1 year (it was important that persons in the sample had sufficient time since their diagnosis to position their experiences along their illness trajectory). All patients who met these criteria and who, during the period of the study, had an appointment with one of the study’s cancer specialists, were contacted by telephone at least 15 days before their appointment. When so contacted, they were asked if they would agree to a sociological interview as part of a study on fatigue. This meant that the patient had to come to his or her appointment 1 h early, or remain 1 h afterwards. Out of 50 persons who were contacted, 10 refused to take part (mostly due to availability, it being impossible to come earlier and their wishing to leave the hospital immediately after the appointment). Five previously agreed interviews could not take place due to the appointments being cancelled. Women were more ready to accept than men, which is why almost three quarters of the sample are female. 2.1. Interviewee profile and interview guide I interviewed 19 women with breast cancer and 16 persons with lung cancer (7 women and 9 men). The average age of the first group was 51.5 years old; that of the second group was 58 years old. Eighty percent of the interviewees had
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been treated by chemotherapy and 74% by radiotherapy. The majority had received both treatments. The semi-directive interviews took place in an office made available by the doctor participating in the study. I followed an interview guide which covered two main issues: the history of the illness and the experience of fatigue. With regard to the first issue, the objective was to gain a better understanding of: the context in which the illness had been detected, how the person learned that he or she had contracted cancer, how the patient and his or her family/friends/colleagues reacted, how the illness affected everyday life, and what strategies had been developed to cope with the cancer. Regarding the second issue, the questions targeted the perception of the origin of the fatigue, how and when the fatigue appeared, how the patient coped with the fatigue, the reactions of family/friends/colleagues, and the therapeutic strategies used to treat it. The subject of hair loss spontaneously appeared in the very first interviews and I rapidly became aware that this was an important issue. From that moment on I therefore integrated it into the interview guide. Two questions guided the exploration of alopecia experience: how patients deal with this particular consequence of treatment and what strategies they develop to cope with it. The interviews lasted an average of 1.5 h, were recorded on a tape recorder, typed out word for word, and analysed under Glaser and Strauss’s ‘grounded theory’ approach [10].
3. Results 3.1. Hair loss: the patients’ perception Hair loss is a traumatic experience for most cancer patients. We have already mentioned the symbolic importance of hair, and later on we will see that hair loss can lead to a feeling of loss of personality. Alopecia symbolises the seriousness of cancer, and is not easy for patients to cope. In order to avoid having to face up to alopecia, four persons resorted to current hair preservation techniques, such as scalp hypothermia. This technique involves wearing a cold cap on one’s head during chemotherapy, preventing hair loss in 37% of cases [8]. Two people saw this technique through to the end, despite the suffering and side effects that it causes: It’s an cold cap that you wear on your head to avoid hair loss. You wear it during perfusion, for an hour and a half. It is taken out of the freezer, and just thinking about it is enough to give me a headache. I admit that it isn’t easy and I’m not sure I’d do it again . . . I kept most of my hair so the objective was achieved, but it was pretty tough. I had major migraines that lasted almost a week . . . (woman, 44 years old, breast cancer). Scalp hypothermia enabled these two interviewees to keep their hair, which meant that they could maintain their physical appearance—a factor which was important to both of
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them. Yet paradoxically, the absence of alopecia also means that one is less conscious of the illness itself: I had the cap, which meant I only lost a bit of hair on top. People who didn’t know about it didn’t notice anything (. . . ). I wouldn’t have liked to lose my hair. I think it would have shocked me. But I’d have been more conscious of the fact that I had cancer. Maybe that would have made me tell myself ‘you have cancer’, whereas in fact I am not yet really aware of it (woman, 60 years old, breast cancer). Two other women found scalp hypothermia to be “unbearable” and stopped the preventive treatment. After weighing up the pros and cons of the technique, they preferred to lose their hair rather than suffer the side effects which they felt to be too severe: They started giving me cold caps, but towards the end I couldn’t stand them any longer, they were very heavy, very cold, and I had headaches so I stopped. And as I was losing my hair anyway, I thought ‘I may as well lose it all’. So I bought a wig (woman, 75 years old, breast cancer). The first time, they gave me the cap, but because I have sinusitis it was very painful. So the second time I told them ‘the cap is useless, don’t put in on me, I’ll buy a nice wig’ (woman, 49 years old, breast cancer). All of the interviewees who did not use these preservation techniques lost their hair. Alopecia was a more traumatic experience for women than for men, the latter considering hair loss to be a ‘normal’ and ‘inevitable’ side effect of cancer treatment. Analysis of the interviews showed that there are two ways of perceiving and dealing with hair loss. 3.1.1. Direct confrontation with the seriousness of cancer Patients are deeply distressed when their hair begins to fall out. In most cases, after the second chemotherapy session they lose all their hair within just a few days. Patients sometimes wish to retain some sort of control over their hair loss, and cut their hair very short in order to avoid having to cope with sudden massive loss: It was very upsetting for me to lose my hair. I literally cut it all off so that I didn’t have to see it falling out all over the place (woman, 48 years old, breast cancer). Most patients feel that hair loss symbolises loss of vitality, of physical strength and of health. The shock is aggravated by the feeling that only a fatal illness could provoke such losses. Next to being told the diagnosis, the start of hair loss is an important moment in becoming aware of the cancer: When I began to lose my hair, I really understood that I was very very ill; that was when I realised I had a fatal illness (woman, 41 years old, breast cancer). The process of losing one’s hair enhances the awareness that one has a fatal illness. This awareness is accompanied
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by a sort of “disgust” due to the fact that physical change is visible proof of the consequences of the illness: I had a feeling of disgust. Because I had the impression I was looking at the results of my illness. I could see it and I didn’t want to see it. I was looking at something negative (woman, 37 years old, breast cancer). Patients also feel somewhat “disgusted” with their bodies, which in its weakened and changed state becomes the field of their battle with cancer. This is particularly true of women; during the interviews, some of them became highly emotional when talking about hair loss: It was important not to lose it, for my family, for my children (crying), I’d have looked less ill with hair (crying), I’d have fought harder against the illness, I’d have been stronger . . . (woman, 45 years old, breast cancer). This perception can also go hand in hand with a change in the person’s identity; alopecia increases one’s identity as a cancer patient. The person is then faced with what Charmaz [11] calls ‘loss of self’; he or she no longer feels the same, no longer recognises him/herself and is not recognised by others. The bald individual is labelled “a cancer patient”. This stigma makes the person vulnerable to negative self identification and self definition. In certain extreme cases, hair loss can lead to loss of self. Hair and face are integral parts of one’s personality and the person can experience this change of appearance as a confirmation of his identity as a cancer patient: Seeing myself in a mirror, when I had always had hair, I’d say to myself: ‘this isn’t me, I really look ill (woman, 65 years old, breast cancer). This perception runs parallel to the experience of “illness immersion” [11]: cancer is no longer simply a part of the patient’s life, it becomes the main element of his everyday life and identity. Patients describe their experience of the illness in terms of “psychic distress”, “depression” and “emotional instability”. This feeling is mainly related to the treatment, and in particular to chemotherapy which is seen as being extremely harmful, attacking the body more than healing it. Memories of the treatment (hair loss, the smell of the product, nausea, fatigue) leave their mark upon these patients for many a long year, and they come to develop a very strong rejection of chemotherapy: You are injected with chemicals, and the simple smell when I go to give a sample—it’s right next to the chemotherapy room—just the smell makes me sick! It may be good for the illness, but the body doesn’t react very well. It must be very aggressive for one to be so ill afterwards (woman, 38 years old, lung cancer). This perception of chemotherapy-induced alopecia is more prevalent among women than men. Indeed, we find a difference between the two sexes. Women tend to relate hair loss to loss of vitality, strength and health, and
have a negative view of chemotherapy. Men—and a few women—see alopecia as a normal and logical consequence of chemotherapy. 3.1.2. A logical and normal consequence of chemotherapy We can distinguish two ways in which hair loss is experienced. First of all, alopecia can be accepted as a “logical consequence of treatment”. Hair loss following chemotherapy is thus felt to be the “price one pays for having treatment”. It is not associated with suffering, but as an inevitable result of treatment and a necessary step towards being cured: I didn’t really suffer from my loss of hair, I wanted to get better and I didn’t give a stuff about hair loss. Some people make a big thing about it, but I don’t see any problem, it grows back after chemotherapy. Nothing matters, it’s like fatigue, it’s temporary, a difficult period to get through, the price you have to pay for being treated (woman, 37 years old, breast cancer). In this case hair loss is “played down” and “banalised”. First and foremost for the individual: self image is not changed and the person can cope with a temporarily modified body. Secondly, hair loss can be perceived as something positive, when it is linked to the hope of being cured. This hope comes from believing in the treatment; the patients have a positive attitude towards chemotherapy and radiotherapy, which despite their side effects are seen as “the price to pay for being cured”. In certain cases the level of loss is directly related to the presumed strength and effectiveness of the treatment. The greater the loss the more effective the treatment seems to be, so the confidence in being cured increases. When chemotherapy is perceived as a treatment which increases one’s chances of being cured, hair loss can therefore be seen as a positive event: I didn’t mind losing my hair; I knew I was being treated, that I was being properly treated, so I saw it as the price to pay for being cured (. . . ). I never saw chemotherapy as my enemy; I felt it to be a treatment that was very hopeful, and I hoped to get better (man, 65 years old, lung cancer). Yet it is sometimes difficult to convince family and friends of the banalisation strategy. Some people had to “educate” those close to them in order to be accepted with their new appearance. Such an education involves psychological preparation and a “non-dramatic” confrontation: When I lost my hair, I had a wig, but I told them (her grandchildren) it was a wig and that I had no hair. I told them: ‘when you feel brave enough to see me without my wig, just tell me’. One day they said: ‘we’d like to see now, so I took it off. They looked and I hope it didn’t upset them. I planned it so that it wouldn’t be seen as a tragedy, but as if it were chickenpox (woman, 46 years old, breast cancer).
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In such cases, patients do not turn to strategies to avoid hair loss. Indeed, solutions (such as scalp hypothermia) offered by the hospital to avoid chemotherapy-induced alopecia are refused. Yet patients develop strategies to repair their physical appearance, such as wearing a wig which will restore their corporal integrity. In some cases this not only allows them to recover their physical appearance, but even to enhance it: I went to see a wigmaker, and ordered a beautiful wig. It was expensive. I chose exactly the same colour as my own hair (. . . ) but asked for it to be cut into a bob. I’d been wanting a cut like that for a long time, but never managed it, so this was the perfect opportunity (woman, 49 years old, breast cancer). 3.2. A discredited or discreditable stigma: strategies to cope with social interaction Patients suffering from chemotherapy-induced alopecia are discredited when they do not hide their hair loss; their stigma is instantly visible. They therefore have to deal with social relationships that revolve around this visibility. How do they deal with the alopecia which makes them so different from other individuals whilst at the same time making their cancer visible? What strategies do they use to cope with this stigma and preserve the cohesion of their social interactions? When people hide their hair loss—mainly by wearing a wig—they are discreditable; their stigma is not immediately visible. In such cases it is important to avoid other people discovering that they are wearing a wig, or being seen without the wig. In the case of the discreditable individual, the person has to cope with information management: who can be told about the wig, when, and how? I found two strategies used to deal with the stigma of alopecia, depending on the situation. 3.2.1. Hide and camouflage The discredited individual can hide the stigma by wearing a wig, a hair band or a scarf. There are 2◦ of camouflage: partial and total. Partial camouflage involves the patient deciding when to wear the wig, depending on the presence of those who Goffman refers to as the “initiates” or “non-initiates”. The patient hides his alopecia when he is with non-initiates, e.g. those with whom he does not wish to share his visible stigma. On the other hand he does not hide his alopecia when in the presence of initiates—the family and friends who know about the stigma: I was very quick to remove my wig when at home. I didn’t need to hide my baldness from my husband and children. But I remember one day when I opened the door to my uncle, and I wasn’t wearing my wig. He saw me without my wig and had the shock of his life. I quickly put my wig back on (woman, 37 years old, breast cancer).
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I’ve never let my grandchildren see my baldness. Never. I only removed my wig once my hair was back to what it was “before” (woman, 68 years old, breast cancer). In cases of maximum camouflage, the wig is worn “always and everywhere”, in the presence of both initiates and non-initiates. Although such cases are rare, patients do not always make this distinction, and systematically protect themselves from other people’s eyes: I wear my wig all the time, at home and outside . . . I only feel right if I have my wig. I am embarrassed by my baldness, I’m ashamed of it and I don’t want to look like someone who is ill. Not even for my children or my husband. So I wear it all the time (woman, 40 years old, breast cancer). Wigs can also become a symbol of the stigma and carry a social message. When it is obvious that a wig is being worn, it can indicate that something “is wrong” with the person’s identity. In which case the person is no longer discreditable, but discredited: You know, even with my wig they saw that something wasn’t right. They said: ‘Régine, you’re not acting normally, there’s something going on’. People start wondering (woman, 68 years old, breast cancer). 3.2.2. Banalisation and provocation This strategy is used by both discredited and discreditable persons. The alopecia is accepted and considered as a normal and inevitable consequence of chemotherapy: wearing a wig is also taken to be nothing unusual, and in many cases there is not even any attempt to hide baldness. When an individual decides to hide the alopecia, it is not so much to protect himself from others (as in the previous case) as to protect his family and friends—and his (grand)children in particular: I bought a wig, but I didn’t wear it at home. Just to go out, and even then I only did it to protect my children from other people’s remarks. I knew it upset them for other people to see me without hair (woman, 39 years old, breast cancer). Men do not hide their alopecia; indeed they tend to actively put it forward as a banality. Nor do they tend to protect their families and friends from other people’s eyes. Everything takes place as if baldness is socially more acceptable for men than for women, and there is no feeling of being the victim of social judgment: I was bald, but I never ever wore a wig. It didn’t bother me to be bald, and I never had any unpleasant remarks. Everyone accepted me the way I was, it’s not as if I was ugly . . . (man, 63 years old, lung cancer). Other interviewees firmly tout the wearing of a wig as a banality. These tend to be those who are open about their cancer, adopting a strategy of total disclosure:
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Being a member of many associations, I meet a lot of people; I had talked to friends about it and everyone knew I had cancer, that I was going to have chemotherapy, that I was going to lose my hair. Which meant that when I started wearing my wig, no-one said anything, no-one looked at me. Everyone knew about it, no-one was surprised (woman, 49 years old, breast cancer). In some cases the banalisation approach is the result of two successive cancers. One example is that of a young woman who suffered from chemotherapy-induced alopecia during her first cancer and decided to wear a wig the whole time except when at home. When being treated for her second cancer she once again lost her hair, but this time decided to wear a hair band instead of a wig, and to remove even that when in the company of initiates. It is interesting to note that her circle of initiates has grown since her first cancer: The first time I wore a wig I only took it off at home. The second time I bought a wig but never wore it; I wore berets or hair bands. I often removed my hair band, I never felt awkward, everyone knew I had cancer, I had nothing to hide (woman, 42 years old, breast cancer). In certain cases, patients push the banalisation strategy so far that it almost becomes provocation. They deliberately choose never to hide their baldness. They use provocation to manage their role of discredited persons: How did I feel about having a shaven head? Fine, I even enjoyed it. I felt a bit different from everyone else. In any case, that’s part of who I am. I like to be different from everyone else, so I wasn’t shocked, I thought it was great. I thought it suited me. And I wanted to show people I was being treated (woman, 37 years old, breast cancer). Sometimes the provocation can give baldness a militant dimension; baldness has become the symbol of cancer and the patient uses it to demand recognition of his/her identity as a cancer patient: I was living on a housing estate when I was ill, and I made a point of going out with my bald head. I wanted everyone to see me like that, I wanted them to know I had cancer. You shouldn’t be ashamed of having cancer, it’s an illness like any other (woman, 53 years old, breast cancer).
4. Discussion and conclusion Most women in our study sample experience hair loss as a confrontation with a serious and fatal illness. In order to cope, they adopt a strategy designed to hide and camouflage their stigma. The main tactic employed is to wear a wig. Yet there are several levels of camouflage: partial camouflage, where the wig is systematically worn in the presence of non-initiates, and total camouflage, where it is also worn in the presence of initiates.
Men (and some women) on the other hand see baldness as a logical and inevitable consequence of treatment. The main strategy used is that of banalising their stigma. Hence the men do not wear wigs and they do not feel their identity changes due to baldness. The women wear wigs in certain situations, but this is not so much to protect themselves from other people as to protect their family and friends (especially (grand)children). In some extreme cases, banalisation can become provocation. The patients add a militant dimension to their baldness; the latter becomes a symbol of their cancer, and the patients use it to lay claim to their new identity of cancer sufferers. 4.1. Practice implication The interviews show that doctors and healthcare professionals pay little attention to chemotherapy-induced alopecia. Indeed, the medical profession tends to underestimate just how big an impact this phenomenon has on patients’ everyday lives. For most of the interviewees it is a real sufferance. Our study indicates that health communication should be more focused on everyday symptoms, with special attention being paid to chemotherapy-induced alopecia. In this context it is important to note that alopecia is strongly linked to the way in which the treatment is perceived. If chemotherapy is seen as a harmful and destructive treatment, the alopecia will be perceived as a sufferance and as a loss of self which considerably affect the patient’s quality of life. On the other hand, if treatment is considered to be beneficial, and linked to the hope of being cured, alopecia will be accepted as a price which has to be paid, and the patient will banalise the impact that baldness has on his or her everyday life. Communication with the patient regarding cancer treatment would therefore appear to be vital.
Acknowledgements This study is a part of a research conducted with Catherine Le Gales (INSERM), Ellen Benhamou and Valérie Lapierre (Institut Gustave Roussy). It has been supported by Intercommission 2 of the French Institute of Health and Medical Research (INSERM).
References [1] Carpenter J, Brockopp D. Evaluation of self-esteem of women with cancer receiving chemotherapy. Oncol Nurs Forum 1994;21:751–7. [2] Münstedt K, et al. Changes in self-concept and body image during alopecia induced cancer chemotherapy. Support Care Cancer 1997;5:139–43. [3] Williams J, Wood C, Cunningham-Warburton P. A narrative study of chemotherapy-induced alopecia. Oncol Nurs Forum 1999;26(9):1463–8. [4] Garvey E, et al. Psychological sequelae and alopecia among women with cancer. Cancer Pract 2001;9:283–9.
S. Rosman / Patient Education and Counseling 52 (2004) 333–339 [5] Freedman T. Social and cultural dimensions of hair loss in women treated for breast cancer. Cancer Nurs 1994;17:334–41. [6] Goffman E. Asile. Paris: Minuit; 1967. [7] Pollak M. L’expérience concentrationnaire, Paris: A.M. Métailié; 1989. [8] Pickard-Holley S. The symptom experience of alopecia. Semin Oncol Nurs 1995;11:235–58.
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[9] Goffman E. Stigma. Englewood Cliffs, NJ: Prentice Hall; 1963. [10] Glaser B, Strauss A. The discovery of grounded theory: strategies for qualitative research. New York: Aldine; 1967. [11] Charmaz K. Good days, bad days. The self in chronic illness. New Brunswick: Rutger University Press; 1991.
Review
Cancer and stigma: experience of patients with chemotherapy-induced alopecia Sophia Rosman∗ INSERM U 537-CREGAS, 80, Rue du Général Leclerc, 94276 Le Kremlin Bicˆetre Cedex, France Received 12 September 2002; received in revised form 8 January 2003; accepted 13 January 2003
Abstract Chemotherapy-induced alopecia is one of the most distressing side-effects of chemotherapy. In this article we examine how patients react to hair loss due to chemotherapy; for women in particular, the reaction involves a confrontation with the lethal nature of cancer, whilst for men it is a normal and inevitable consequence of treatment. We then analyse the strategies used to cope with alopecia. One strategy involves camouflaging and hiding; the patients wear wigs in an attempt to partially or completely hide their hair loss. Another strategy is to treat it as commonplace: wearing a wig is played down and banalised. Sometimes this can take the form of provocation, in which case baldness is seen as the symbol of the cancer patient’s new identity. © 2003 Elsevier Science Ireland Ltd. All rights reserved. Keywords: Cancer; Chemotherapy-induced alopecia; Qualitative analysis; Illness experience
1. Introduction As part of a research programme run in partnership with the cancer hospital Institut Gustave Roussy (France) on the symptom of fatigue among cancer patients, we carried out an exploratory qualitative study among 35 persons with lung or breast cancer. The purpose of this study was to use in-depth interviews to analyse how fatigue is experienced, e.g. the way in which it is perceived by the patients, what they believe to be the cause, its impact on their everyday lives and the strategies used to reduce this impact. During the interviews another issue spontaneously emerged, one which for many patients was a greater problem than that of fatigue or pain: chemotherapy-induced alopecia. Eighty percent of the interviewees had undergone chemotherapy, and almost all of them had lost all of their hair. The impact of this event on their everyday lives and on their social relations led me to take a closer look at this issue. 1.1. Problem and theoretical context The impact of hair loss on the lives of cancer patients is something which has mainly been examined by healthcare professionals. The aim of these works was to understand and
∗ Tel.: +33-1-49-59-19-54; fax: +33-1-46-71-32-70. E-mail address: [email protected] (S. Rosman).
measure the consequences of hair loss within such frameworks as “self-esteem”, “body image” and “self-perception”. They are based upon measurement scales or narrative analysis. Among the works using measurement scales one might mention those of Carpenter and Brockopp [1], whose purpose was to examine the concept of self-esteem within a population of women suffering from chemotherapy-induced alopecia. They did a study combining qualitative and quantitative methods among 30 female cancer patients. Self-esteem was measured using the Cantrill Self-Anchoring Scale (CSA), a 10-point scale that allows collection of qualitative data as subjects define the endpoints of the scale. Subjects were also asked to rate the levels of self-esteem they had at the time of the interview and, retrospectively, prior to the diagnosis of cancer. This study finds that when alopecia occurs during active treatment with chemotherapy, self-esteem is significantly lower than it was prior to diagnosis. Age was not significantly correlated with self-esteem scores, nor did the degree of hair loss influence self-esteem. Another study using measurement scales is that of Münstedt et al. [2]. They carried out a prospective longitudinal study in which self-concept and body image were analysed in 29 patients who, after histological confirmation of gynaecological cancer, were to receive complete alopecia-inducing chemotherapy. The analysis was made before the commencement of treatment and repeated both when alopecia was complete and after the termination of therapy when patients had already experienced re-growth of hair. The
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study used the Frankfurt self-concept (FSKN) and Frankfurt body-concept scales (FKKS), the FSAP scale (general ability to solve problems), the FSSW scale (general self-esteem) and the SGKB (state of health) and SKEF (physical fitness) scales. For all of the above scales, results worsened during chemotherapy and did not return to normal or improve when patients experienced re-growth of hair. It was found that 73% of the patients did not feel as self-confident as they had prior to treatment, and that for 46% alopecia was the most traumatic side effect of chemotherapy. Williams et al. [3] did a qualitative study on alopecia, using personal narratives to illustrate the need to understand the impact of alopecia on the person’s identity as well as on everyday activities. The study sample consisted of 15 adults (13 women and 2 men) who had been treated with chemotherapy for a variety of cancers. The results of this study show that the patients were unprepared for hair loss and that they had an altered sense of self. Hair loss influenced professional role performance, whilst the loss of facial hair interfered with the patients’ ability to express themselves. The authors of this article also conducted a focus group with women who had experienced chemotherapy-related alopecia. The findings indicated that the following reactions were experienced by most of the group: (1) not being prepared, (2) shock, (3) personal embarrassment, (4) loss of a sense of self [4]. Some studies, such as Freedman’s [5], show that among patients with breast cancer, hair loss can be harder to cope with than the loss of a breast. Hair is a symbol of life and identity, and plays an important role in social communication. It can reflect social class, sex, profession, religious belief, and social or political conviction. For women in particular, hair is an important indicator of personality, attractiveness and femininity. The symbolic importance of hair may be clearly observed when it is cut upon entry into a “totalitarian institution” [6] (prison, psychiatric asylum, concentration camp, armed forces) as a sign of submission and of loss of personal identity [7]. Hair is a major aspect of body image and plays a role in social interaction. Hair loss means a loss of personality and self-esteem which, as we have seen above, also leads to a loss in self-confidence which may persist even after the hair has grown back [2]. People with chemotherapy-related alopecia frequently suffer from depression and anxiety [8], both of which are enhanced by the fact that alopecia is a constant reminder of the presence of cancer [3]. In addition, not only is there a change in the patients’ physical appearance due to baldness, but also a change to their faces as a whole, in as much as they lose both eyebrows and eyelashes. This is a traumatic experience because it not only affects the way one sees oneself, but also one’s social interaction. Whilst chemotherapy-related alopecia continues to be widely explored by healthcare professionals, as far as I am aware there have never been any sociological studies on this theme. I would like to use the Stigma [9] conceptual framework to analyse the data. In this study Goffman looks
at how people with a distinguishing difference (illness, handicap, etc.) cope with their stigma in terms of social interaction. He distinguishes between the “discredited” and the “discreditable” individual; in the one case the stigma is instantly visible, whereas in the other the person is afflicted with an invisible stigma. The former have to integrate their stigma into social interaction and cope with social judgements, whilst the latter are faced with what Goffman calls “the management of information”: who should one tell that one has a stigma? When and how should one tell them? Having kept it secret, when due to his stigma the discreditable person decides to tell his family/friends/colleagues, Goffman talks of “disclosure etiquette”. In this particular analysis, the persons with chemotherapyinduced alopecia are suffering from the stigma of the alopecia with which they have to deal during social interaction. They are discredited when the alopecia is instantly visible, and discreditable when they hide their hair loss by, for example, wearing a wig. In this article I will look at how the interviewees cope with their hair loss, how they perceive it, and what strategies they use to “live with it” depending on whether the stigma is discredited or discreditable.
2. Methods The exploratory qualitative study took place in a cancer hospital in the suburbs of Paris (Villejuif). Thirty-five patients were interviewed before or after their consultation with the specialist. The selection criteria for the sample were as follows: having breast or lung cancer and having been aware of the diagnosis for at least 1 year (it was important that persons in the sample had sufficient time since their diagnosis to position their experiences along their illness trajectory). All patients who met these criteria and who, during the period of the study, had an appointment with one of the study’s cancer specialists, were contacted by telephone at least 15 days before their appointment. When so contacted, they were asked if they would agree to a sociological interview as part of a study on fatigue. This meant that the patient had to come to his or her appointment 1 h early, or remain 1 h afterwards. Out of 50 persons who were contacted, 10 refused to take part (mostly due to availability, it being impossible to come earlier and their wishing to leave the hospital immediately after the appointment). Five previously agreed interviews could not take place due to the appointments being cancelled. Women were more ready to accept than men, which is why almost three quarters of the sample are female. 2.1. Interviewee profile and interview guide I interviewed 19 women with breast cancer and 16 persons with lung cancer (7 women and 9 men). The average age of the first group was 51.5 years old; that of the second group was 58 years old. Eighty percent of the interviewees had
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been treated by chemotherapy and 74% by radiotherapy. The majority had received both treatments. The semi-directive interviews took place in an office made available by the doctor participating in the study. I followed an interview guide which covered two main issues: the history of the illness and the experience of fatigue. With regard to the first issue, the objective was to gain a better understanding of: the context in which the illness had been detected, how the person learned that he or she had contracted cancer, how the patient and his or her family/friends/colleagues reacted, how the illness affected everyday life, and what strategies had been developed to cope with the cancer. Regarding the second issue, the questions targeted the perception of the origin of the fatigue, how and when the fatigue appeared, how the patient coped with the fatigue, the reactions of family/friends/colleagues, and the therapeutic strategies used to treat it. The subject of hair loss spontaneously appeared in the very first interviews and I rapidly became aware that this was an important issue. From that moment on I therefore integrated it into the interview guide. Two questions guided the exploration of alopecia experience: how patients deal with this particular consequence of treatment and what strategies they develop to cope with it. The interviews lasted an average of 1.5 h, were recorded on a tape recorder, typed out word for word, and analysed under Glaser and Strauss’s ‘grounded theory’ approach [10].
3. Results 3.1. Hair loss: the patients’ perception Hair loss is a traumatic experience for most cancer patients. We have already mentioned the symbolic importance of hair, and later on we will see that hair loss can lead to a feeling of loss of personality. Alopecia symbolises the seriousness of cancer, and is not easy for patients to cope. In order to avoid having to face up to alopecia, four persons resorted to current hair preservation techniques, such as scalp hypothermia. This technique involves wearing a cold cap on one’s head during chemotherapy, preventing hair loss in 37% of cases [8]. Two people saw this technique through to the end, despite the suffering and side effects that it causes: It’s an cold cap that you wear on your head to avoid hair loss. You wear it during perfusion, for an hour and a half. It is taken out of the freezer, and just thinking about it is enough to give me a headache. I admit that it isn’t easy and I’m not sure I’d do it again . . . I kept most of my hair so the objective was achieved, but it was pretty tough. I had major migraines that lasted almost a week . . . (woman, 44 years old, breast cancer). Scalp hypothermia enabled these two interviewees to keep their hair, which meant that they could maintain their physical appearance—a factor which was important to both of
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them. Yet paradoxically, the absence of alopecia also means that one is less conscious of the illness itself: I had the cap, which meant I only lost a bit of hair on top. People who didn’t know about it didn’t notice anything (. . . ). I wouldn’t have liked to lose my hair. I think it would have shocked me. But I’d have been more conscious of the fact that I had cancer. Maybe that would have made me tell myself ‘you have cancer’, whereas in fact I am not yet really aware of it (woman, 60 years old, breast cancer). Two other women found scalp hypothermia to be “unbearable” and stopped the preventive treatment. After weighing up the pros and cons of the technique, they preferred to lose their hair rather than suffer the side effects which they felt to be too severe: They started giving me cold caps, but towards the end I couldn’t stand them any longer, they were very heavy, very cold, and I had headaches so I stopped. And as I was losing my hair anyway, I thought ‘I may as well lose it all’. So I bought a wig (woman, 75 years old, breast cancer). The first time, they gave me the cap, but because I have sinusitis it was very painful. So the second time I told them ‘the cap is useless, don’t put in on me, I’ll buy a nice wig’ (woman, 49 years old, breast cancer). All of the interviewees who did not use these preservation techniques lost their hair. Alopecia was a more traumatic experience for women than for men, the latter considering hair loss to be a ‘normal’ and ‘inevitable’ side effect of cancer treatment. Analysis of the interviews showed that there are two ways of perceiving and dealing with hair loss. 3.1.1. Direct confrontation with the seriousness of cancer Patients are deeply distressed when their hair begins to fall out. In most cases, after the second chemotherapy session they lose all their hair within just a few days. Patients sometimes wish to retain some sort of control over their hair loss, and cut their hair very short in order to avoid having to cope with sudden massive loss: It was very upsetting for me to lose my hair. I literally cut it all off so that I didn’t have to see it falling out all over the place (woman, 48 years old, breast cancer). Most patients feel that hair loss symbolises loss of vitality, of physical strength and of health. The shock is aggravated by the feeling that only a fatal illness could provoke such losses. Next to being told the diagnosis, the start of hair loss is an important moment in becoming aware of the cancer: When I began to lose my hair, I really understood that I was very very ill; that was when I realised I had a fatal illness (woman, 41 years old, breast cancer). The process of losing one’s hair enhances the awareness that one has a fatal illness. This awareness is accompanied
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by a sort of “disgust” due to the fact that physical change is visible proof of the consequences of the illness: I had a feeling of disgust. Because I had the impression I was looking at the results of my illness. I could see it and I didn’t want to see it. I was looking at something negative (woman, 37 years old, breast cancer). Patients also feel somewhat “disgusted” with their bodies, which in its weakened and changed state becomes the field of their battle with cancer. This is particularly true of women; during the interviews, some of them became highly emotional when talking about hair loss: It was important not to lose it, for my family, for my children (crying), I’d have looked less ill with hair (crying), I’d have fought harder against the illness, I’d have been stronger . . . (woman, 45 years old, breast cancer). This perception can also go hand in hand with a change in the person’s identity; alopecia increases one’s identity as a cancer patient. The person is then faced with what Charmaz [11] calls ‘loss of self’; he or she no longer feels the same, no longer recognises him/herself and is not recognised by others. The bald individual is labelled “a cancer patient”. This stigma makes the person vulnerable to negative self identification and self definition. In certain extreme cases, hair loss can lead to loss of self. Hair and face are integral parts of one’s personality and the person can experience this change of appearance as a confirmation of his identity as a cancer patient: Seeing myself in a mirror, when I had always had hair, I’d say to myself: ‘this isn’t me, I really look ill (woman, 65 years old, breast cancer). This perception runs parallel to the experience of “illness immersion” [11]: cancer is no longer simply a part of the patient’s life, it becomes the main element of his everyday life and identity. Patients describe their experience of the illness in terms of “psychic distress”, “depression” and “emotional instability”. This feeling is mainly related to the treatment, and in particular to chemotherapy which is seen as being extremely harmful, attacking the body more than healing it. Memories of the treatment (hair loss, the smell of the product, nausea, fatigue) leave their mark upon these patients for many a long year, and they come to develop a very strong rejection of chemotherapy: You are injected with chemicals, and the simple smell when I go to give a sample—it’s right next to the chemotherapy room—just the smell makes me sick! It may be good for the illness, but the body doesn’t react very well. It must be very aggressive for one to be so ill afterwards (woman, 38 years old, lung cancer). This perception of chemotherapy-induced alopecia is more prevalent among women than men. Indeed, we find a difference between the two sexes. Women tend to relate hair loss to loss of vitality, strength and health, and
have a negative view of chemotherapy. Men—and a few women—see alopecia as a normal and logical consequence of chemotherapy. 3.1.2. A logical and normal consequence of chemotherapy We can distinguish two ways in which hair loss is experienced. First of all, alopecia can be accepted as a “logical consequence of treatment”. Hair loss following chemotherapy is thus felt to be the “price one pays for having treatment”. It is not associated with suffering, but as an inevitable result of treatment and a necessary step towards being cured: I didn’t really suffer from my loss of hair, I wanted to get better and I didn’t give a stuff about hair loss. Some people make a big thing about it, but I don’t see any problem, it grows back after chemotherapy. Nothing matters, it’s like fatigue, it’s temporary, a difficult period to get through, the price you have to pay for being treated (woman, 37 years old, breast cancer). In this case hair loss is “played down” and “banalised”. First and foremost for the individual: self image is not changed and the person can cope with a temporarily modified body. Secondly, hair loss can be perceived as something positive, when it is linked to the hope of being cured. This hope comes from believing in the treatment; the patients have a positive attitude towards chemotherapy and radiotherapy, which despite their side effects are seen as “the price to pay for being cured”. In certain cases the level of loss is directly related to the presumed strength and effectiveness of the treatment. The greater the loss the more effective the treatment seems to be, so the confidence in being cured increases. When chemotherapy is perceived as a treatment which increases one’s chances of being cured, hair loss can therefore be seen as a positive event: I didn’t mind losing my hair; I knew I was being treated, that I was being properly treated, so I saw it as the price to pay for being cured (. . . ). I never saw chemotherapy as my enemy; I felt it to be a treatment that was very hopeful, and I hoped to get better (man, 65 years old, lung cancer). Yet it is sometimes difficult to convince family and friends of the banalisation strategy. Some people had to “educate” those close to them in order to be accepted with their new appearance. Such an education involves psychological preparation and a “non-dramatic” confrontation: When I lost my hair, I had a wig, but I told them (her grandchildren) it was a wig and that I had no hair. I told them: ‘when you feel brave enough to see me without my wig, just tell me’. One day they said: ‘we’d like to see now, so I took it off. They looked and I hope it didn’t upset them. I planned it so that it wouldn’t be seen as a tragedy, but as if it were chickenpox (woman, 46 years old, breast cancer).
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In such cases, patients do not turn to strategies to avoid hair loss. Indeed, solutions (such as scalp hypothermia) offered by the hospital to avoid chemotherapy-induced alopecia are refused. Yet patients develop strategies to repair their physical appearance, such as wearing a wig which will restore their corporal integrity. In some cases this not only allows them to recover their physical appearance, but even to enhance it: I went to see a wigmaker, and ordered a beautiful wig. It was expensive. I chose exactly the same colour as my own hair (. . . ) but asked for it to be cut into a bob. I’d been wanting a cut like that for a long time, but never managed it, so this was the perfect opportunity (woman, 49 years old, breast cancer). 3.2. A discredited or discreditable stigma: strategies to cope with social interaction Patients suffering from chemotherapy-induced alopecia are discredited when they do not hide their hair loss; their stigma is instantly visible. They therefore have to deal with social relationships that revolve around this visibility. How do they deal with the alopecia which makes them so different from other individuals whilst at the same time making their cancer visible? What strategies do they use to cope with this stigma and preserve the cohesion of their social interactions? When people hide their hair loss—mainly by wearing a wig—they are discreditable; their stigma is not immediately visible. In such cases it is important to avoid other people discovering that they are wearing a wig, or being seen without the wig. In the case of the discreditable individual, the person has to cope with information management: who can be told about the wig, when, and how? I found two strategies used to deal with the stigma of alopecia, depending on the situation. 3.2.1. Hide and camouflage The discredited individual can hide the stigma by wearing a wig, a hair band or a scarf. There are 2◦ of camouflage: partial and total. Partial camouflage involves the patient deciding when to wear the wig, depending on the presence of those who Goffman refers to as the “initiates” or “non-initiates”. The patient hides his alopecia when he is with non-initiates, e.g. those with whom he does not wish to share his visible stigma. On the other hand he does not hide his alopecia when in the presence of initiates—the family and friends who know about the stigma: I was very quick to remove my wig when at home. I didn’t need to hide my baldness from my husband and children. But I remember one day when I opened the door to my uncle, and I wasn’t wearing my wig. He saw me without my wig and had the shock of his life. I quickly put my wig back on (woman, 37 years old, breast cancer).
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I’ve never let my grandchildren see my baldness. Never. I only removed my wig once my hair was back to what it was “before” (woman, 68 years old, breast cancer). In cases of maximum camouflage, the wig is worn “always and everywhere”, in the presence of both initiates and non-initiates. Although such cases are rare, patients do not always make this distinction, and systematically protect themselves from other people’s eyes: I wear my wig all the time, at home and outside . . . I only feel right if I have my wig. I am embarrassed by my baldness, I’m ashamed of it and I don’t want to look like someone who is ill. Not even for my children or my husband. So I wear it all the time (woman, 40 years old, breast cancer). Wigs can also become a symbol of the stigma and carry a social message. When it is obvious that a wig is being worn, it can indicate that something “is wrong” with the person’s identity. In which case the person is no longer discreditable, but discredited: You know, even with my wig they saw that something wasn’t right. They said: ‘Régine, you’re not acting normally, there’s something going on’. People start wondering (woman, 68 years old, breast cancer). 3.2.2. Banalisation and provocation This strategy is used by both discredited and discreditable persons. The alopecia is accepted and considered as a normal and inevitable consequence of chemotherapy: wearing a wig is also taken to be nothing unusual, and in many cases there is not even any attempt to hide baldness. When an individual decides to hide the alopecia, it is not so much to protect himself from others (as in the previous case) as to protect his family and friends—and his (grand)children in particular: I bought a wig, but I didn’t wear it at home. Just to go out, and even then I only did it to protect my children from other people’s remarks. I knew it upset them for other people to see me without hair (woman, 39 years old, breast cancer). Men do not hide their alopecia; indeed they tend to actively put it forward as a banality. Nor do they tend to protect their families and friends from other people’s eyes. Everything takes place as if baldness is socially more acceptable for men than for women, and there is no feeling of being the victim of social judgment: I was bald, but I never ever wore a wig. It didn’t bother me to be bald, and I never had any unpleasant remarks. Everyone accepted me the way I was, it’s not as if I was ugly . . . (man, 63 years old, lung cancer). Other interviewees firmly tout the wearing of a wig as a banality. These tend to be those who are open about their cancer, adopting a strategy of total disclosure:
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Being a member of many associations, I meet a lot of people; I had talked to friends about it and everyone knew I had cancer, that I was going to have chemotherapy, that I was going to lose my hair. Which meant that when I started wearing my wig, no-one said anything, no-one looked at me. Everyone knew about it, no-one was surprised (woman, 49 years old, breast cancer). In some cases the banalisation approach is the result of two successive cancers. One example is that of a young woman who suffered from chemotherapy-induced alopecia during her first cancer and decided to wear a wig the whole time except when at home. When being treated for her second cancer she once again lost her hair, but this time decided to wear a hair band instead of a wig, and to remove even that when in the company of initiates. It is interesting to note that her circle of initiates has grown since her first cancer: The first time I wore a wig I only took it off at home. The second time I bought a wig but never wore it; I wore berets or hair bands. I often removed my hair band, I never felt awkward, everyone knew I had cancer, I had nothing to hide (woman, 42 years old, breast cancer). In certain cases, patients push the banalisation strategy so far that it almost becomes provocation. They deliberately choose never to hide their baldness. They use provocation to manage their role of discredited persons: How did I feel about having a shaven head? Fine, I even enjoyed it. I felt a bit different from everyone else. In any case, that’s part of who I am. I like to be different from everyone else, so I wasn’t shocked, I thought it was great. I thought it suited me. And I wanted to show people I was being treated (woman, 37 years old, breast cancer). Sometimes the provocation can give baldness a militant dimension; baldness has become the symbol of cancer and the patient uses it to demand recognition of his/her identity as a cancer patient: I was living on a housing estate when I was ill, and I made a point of going out with my bald head. I wanted everyone to see me like that, I wanted them to know I had cancer. You shouldn’t be ashamed of having cancer, it’s an illness like any other (woman, 53 years old, breast cancer).
4. Discussion and conclusion Most women in our study sample experience hair loss as a confrontation with a serious and fatal illness. In order to cope, they adopt a strategy designed to hide and camouflage their stigma. The main tactic employed is to wear a wig. Yet there are several levels of camouflage: partial camouflage, where the wig is systematically worn in the presence of non-initiates, and total camouflage, where it is also worn in the presence of initiates.
Men (and some women) on the other hand see baldness as a logical and inevitable consequence of treatment. The main strategy used is that of banalising their stigma. Hence the men do not wear wigs and they do not feel their identity changes due to baldness. The women wear wigs in certain situations, but this is not so much to protect themselves from other people as to protect their family and friends (especially (grand)children). In some extreme cases, banalisation can become provocation. The patients add a militant dimension to their baldness; the latter becomes a symbol of their cancer, and the patients use it to lay claim to their new identity of cancer sufferers. 4.1. Practice implication The interviews show that doctors and healthcare professionals pay little attention to chemotherapy-induced alopecia. Indeed, the medical profession tends to underestimate just how big an impact this phenomenon has on patients’ everyday lives. For most of the interviewees it is a real sufferance. Our study indicates that health communication should be more focused on everyday symptoms, with special attention being paid to chemotherapy-induced alopecia. In this context it is important to note that alopecia is strongly linked to the way in which the treatment is perceived. If chemotherapy is seen as a harmful and destructive treatment, the alopecia will be perceived as a sufferance and as a loss of self which considerably affect the patient’s quality of life. On the other hand, if treatment is considered to be beneficial, and linked to the hope of being cured, alopecia will be accepted as a price which has to be paid, and the patient will banalise the impact that baldness has on his or her everyday life. Communication with the patient regarding cancer treatment would therefore appear to be vital.
Acknowledgements This study is a part of a research conducted with Catherine Le Gales (INSERM), Ellen Benhamou and Valérie Lapierre (Institut Gustave Roussy). It has been supported by Intercommission 2 of the French Institute of Health and Medical Research (INSERM).
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