Anticipating an altered appearance: Women undergoing chemotherapy treatment for breast cancer

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Summary

Chemotherapy treatment for cancer can have a profound impact on appearance, and is often experienced as distressing. Few qualitative studies explore experiences of chemotherapy, and seldom focus on the process of anticipation and preparation for an altered appearance. We report findings from an interview study of 19 women which explored their expectations of chemotherapy-induced hair loss, their anticipated reactions to hair loss and how women intend to prepare for an altered appearance. The results demonstrate that women are active in anticipating hair loss and adopt a range of different strategies to manage their alopecia—even before it has occurred. Four key themes were identified: (a) anticipating hair loss, (b) coming to terms with the inevitability of hair loss, (c) becoming ready, and (d) taking control. We argue that this can be seen as a form of anticipatory coping, which involves affective and behavioural rehearsal so that women can feel more in control of their experience of the side effects of chemotherapy treatment for cancer. We suggest seeing these activities as a form of anticipatory coping, and understanding the psychological reasons why women engage in these activities, may help nursing professionals to better support women through this often traumatic time.

Zusammenfassung

Chemotherapien können das äußere Erscheinungsbild von Krebspatienten erheblich verändern und werden auch aus diesem Grunde häufig als sehr belastend empfunden. Bislang existieren nur wenige qualitative Studien, in denen untersucht wurde, wie Krebspatienten ihre Chemotherapien wahrnehmen. Nur selten steht in diesen Studien der Prozess der Antizipation und der Vorbereitung auf ein verändertes Erscheinungsbild im Vordergrund. Wir berichten über die Ergebnisse einer Interviewstudie, in der die Erwartungen von 19 Frauen im Hinblick auf einen chemotherapiebedingten Haarverlust sowie die antizipatorischen Reaktionen dieser Probandinnen auf den Haarverlust untersucht wurden; ferner wurden die Probandinnen gefragt, wie sie sich auf die Veränderungen ihres körperlichen Erscheinungsbildes vorzubereiten gedachten. Die Ergebnisse zeigen, dass sich die Frauen aktiv auf den erwarteten Haarverlust vorbereiten und eine Reihe unterschiedlicher Strategien ergreifen, um das Problem des Haarverlusts bereits vor Auftreten dieses Problems zu bewältigen. Dabei wurden vier Schwerpunkte identifiziert: (a) die Antizipation des Haarverlusts, (b) das Sich-Fügen in die Unabwendbarkeit des Haarverlusts, (c) die mentale Bereitschaft, (d) die Übernahme der Kontrolle. Wir vertreten den Standpunkt, dass dies eine Form des antizipatorischen Copings darstellt, bei dem es zu einem affektiven und behaviouralen „Rehearsal“kommt. Letzteres ermöglicht den Frauen, eine bessere Kontrolle über ihre Wahrnehmung der Nebenwirkungen der Chemotherapie zu erlangen. Wir betrachten derartige mentale Aktivitäten als Ausdruck eines antizipatorischen Copings. Die Kenntnis der Gründe, weshalb bei den betroffenen Patientinnen diese psychischen Prozesse ablaufen, kann dem Krankenpflegepersonal dabei helfen, die Patientinnen in dieser oft als traumatisch empfundenen Lebensphase besser zu begleiten.

Introduction

Treatments for cancer can have a profound impact on patients’ appearance and body image (Runsey and Harcourt, 2006). Yet in comparison to the relative wealth of research into the impact of surgery on body image (see Moyer, 1997 for an overview), the psychosocial impact of chemotherapy has received relatively little attention.

Chemotherapy is recognized as having a range of side effects (including nausea, fatigue, hair loss, ulcers), which often make patients feel ill in a way that the actual disease does not (Fall-Dickson and Rose, 1999). Alopecia or hair loss is often rated as one of the most common, feared, and traumatic aspects of chemotherapy (see Batchelor, 2001; Cull, 1990; Münstedt et al., 1997), and may even be considered emblematic of the treatment and of cancer itself (Harcourt et al., 2006). Although mechanisms for preventing or reducing hair loss (such as scalp tourniquets or scalp-cooling devices) have been developed, their effectiveness is contested (see Batchelor, 2001 and Hesketh et al., 2004 for overviews), and hair loss is, for many patients, currently an unavoidable aspect of their chemotherapy treatment.

Understanding more about the experience of chemotherapy-induced hair loss enables us to inform healthcare practices and to better support patients. Two different literatures currently inform our understanding: quantitative research that attempts to establish the incidence and severity of different side effects from chemotherapy, and to assess the impact of these on psychosocial outcomes such as self-esteem, body image, and distress; and qualitative studies that aim to explore the experience of chemotherapy (including hair loss) for women themselves. These literatures, which we briefly review, tell us little about how women prepare for hair loss before it occurs.

Most studies within the nursing field have been concerned with documenting the incidence and severity of side effects, the onset and duration of symptoms, and the extent to which these are perceived as distressing or difficult. Alopecia is typically ranked as one of the most troublesome side effects of chemotherapy along with nausea and fatigue (e.g. Griffin et al., 1996; Lindley et al., 1999). Some studies suggest that the experienced side effects are not as difficult or distressing as patients anticipate (Lindley et al., 1999 see also Tierney et al., 1992), and this knowledge might go some way to reassure those receiving chemotherapy for the first time. Nonetheless, substantial numbers of patients undergoing chemotherapy find hair loss difficult or distressing.

Little research has explored the psychosocial impact of these side effects on self-esteem, depression, and body image. Carpenter and Brockopp (1994) found that women rated their self-esteem as significantly lower at the time of alopecia, although this did not necessarily mean that they had low self-esteem overall. A prospective longitudinal study that explored 29 patients’ self-concept and body image before treatment, during complete hair loss, and after hair re-growth, found that self-concept and body image were poorer during treatment and did not improve or return to pre-treatment levels when hair began to re-grow (Münstedt et al., 1997). While it is difficult to tease out whether differences in body image, self-esteem, or self-concept result from alopecia specifically, or more general adjustment to a cancer diagnosis and chemotherapy treatment, they do suggest that many women experience a range of distressing side effects from chemotherapy treatment, including alopecia, which has a significant impact on their psychosocial well-being. Further research is needed to explore the psychosocial impact of chemotherapy side effects, and how cancer patients cope with these changes.

A few qualitative studies have explored cancer patients’ (predominantly women) experiences of chemotherapy, including the meaning of hair loss (Gallagher, 1997); the social and cultural aspects of hair loss (Freedman, 1994); the experience of hair loss and re-growth (Williams et al., 1999); the meaning of chemotherapy treatment (Richer and Ezer, 2002); and experiences of fatigue (Rosman, 2004). Although not all of these studies focused specifically on hair loss, collectively they have identified a number of key elements in the experience of chemotherapy-induced alopecia.

Studies that provide descriptive accounts of the process of hair loss suggest that for many women this is traumatic. Patients describe having hair fall out in clumps, on pillows and sticking to the body in the shower or clogging up the plug hole (Gallagher, 1997). They are shocked when hair loss occurs and they are confronted by their baldness. Only two studies explicitly (but briefly) examined how women prepared for treatment side effects. In one, patients prepared by gathering information from others (people they have known, nurses, internet, etc.), going to hairdressers, shaving their hair, and buying wigs and hats—but even those who engaged in these activities still felt unprepared (Williams et al., 1999).

In order to manage or cope with alopecia, patients disguise or camouflage hair loss through the use of wigs, hats, and scarves. Rosman (2004) describes how some women engage in total camouflage where a wig is worn “always and everywhere” and partial camouflage when they decide not to wear a wig in the presence of some people (usually when at home). Looking ‘normal’ is something that takes effort, and is done for the benefit of self and the protection of others (Rosman, 2004; Williams et al., 1999). Some studies describe the problems associated with wig use, such as finding them uncomfortable, as signalling a denial of the disease, and perpetuating a feeling of being abnormal, and some women were relieved when these efforts could be abandoned and the wig discarded (Williams et al., 1999).

Studies that focus on the meaning of hair loss suggest that this can represent a visible reminder of the illness, women look like a ‘cancer patient’ and can be recognized as such by others (Freedman, 1994; Harcourt et al., 2006; Richer and Ezer, 2002; Rosman, 2004; Williams et al., 1999). Hair loss can also create a loss of self or identity, as the person in the mirror no longer looks or feels like ‘me as I normally am’ (Freedman, 1994; Williams et al., 1999). However, for some women hair loss was accepted as an inevitable consequence of treatment—part of the “price one pays for having treatment”—a temporary and manageable aspect of treatment which one just has to get through, and which can be taken as evidence of the effectiveness or strength of the treatment (Rosman, 2004).

These qualitative studies have been extremely useful for illuminating women's experiences of hair loss. Despite the small sample sizes, there is some coherence between the themes being described across these studies. However, they rarely focus specifically on the process of preparing for hair loss. Where studies do address the anticipation or preparation for hair loss this is often one among many themes, and focus on this theme in detail is sacrificed in favour of providing an overview of the chemotherapy experience (e.g. Gallagher, 1997; Williams et al., 1999). Consequently, despite the utility of these studies, we still know very little about how women prepare for the effects of chemotherapy treatment, and how this preparation might be supported by healthcare workers.

In summary, hair loss is often an unavoidable side effect of undergoing chemotherapy treatment for cancer, and it is often experienced as distressing or traumatic. Research suggests that hair loss may also have a psychosocial impact on patients self-esteem, body image, and self-concept, but little is known about which patients might be more vulnerable or resilient to these effects, and what factors might ameliorate this distress. Preparing patients for hair loss is a significant challenge for nurses and physicians, and yet little is known about the process of preparing from the perspective of women themselves. Since preparation for hair loss has been identified as a key role for healthcare professionals, understanding more about this crucial period may enhance our ability to support cancer patients through this potentially difficult time. In this paper we use data from interviews with women prior to commencing chemotherapy treatment to explore the process of anticipating and preparing for hair loss.

Section snippets

Method

The data in this paper forms part of a larger study exploring women's experiences of chemotherapy. In the wider study nineteen women were recruited on a volunteer basis from an Oncology Centre in a large city in the South West of England. The study was scrutinized and given approval both by the University of the West of England and by the South West Local Regional Ethics Committee. Details of the study were introduced by the consultant and specialist nurses during a consultation prior to

Results and discussion

For many of the women in this study, like those in other studies, chemotherapy was often seen as synonymous with hair loss. Many women found the thought of hair loss distressing but even those who seemed less distressed or anxious about losing their hair still put a great deal of thought into anticipating how they would manage and cope with hair loss. The analysis revealed three key themes: coming to terms with hair loss, becoming ready, and taking control. Each of these themes is discussed in

Anticipatory coping

We argue that this preparation could be seen as a form of anticipatory coping—coping which involves the preparation for managing the stressful consequences of an upcoming event which is likely or certain to occur (Aspinwall and Taylor, 1997). Anticipatory coping has received relatively little research attention but it is likely to involve some of the same activities as proactive coping (coping efforts to prevent potentially stressful events) but targeted towards an anticipated event. These

Acknowledgements

The authors would like to thank the women who volunteered to take part in this study and who shared their experiences of chemotherapy with us, and Consultant Oncologist Jeremy Braybrooke.

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