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Cancer and stigma: experience of patients with chemotherapy-induced alopecia

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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.

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.

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 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 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 chemotherapy-induced 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.

Section snippets

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

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

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

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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