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Managing appearance changes resulting from cancer treatment: resilience in adolescent females

Melissa L. Wallace1*, Diana Harcourt1, Nichola Rumsey1 and Annabel Foot2 1 Centre for Appearance Research, University of the West of England, Bristol, UK 2 Bristol Children’s Hospital, United Bristol NHS Trust , UK

* Correspondence to: CORE, Department of Psychology, University College London, 1-19 Torrington Place, London WC1E 7HB, UK. E-mail: m.wallace@ucl.ac.uk

Abstract

Typically, adolescence is marked by cognitive and physical developments impacting on self- esteem, independence and sexual awareness, often resulting in increased appearance awareness and dissatisfaction. Adolescents with cancer have the additional burden of illness, treatments and resultant appearance changes. This study aimed to explore the impact of these changes on adolescents who have had cancer. In depth, semi-structured interviews were conducted with six females between 14 and 19 years who had completed treatment within the previous two years, and analysed using Interpretative Phenomenological Analysis (IPA). Concerns around an altered appearance were significant during treatment, serving as a constant reminder of ‘difference’ and a marker of illness. However, since treatment, participants expressed an apparent shift in views and expectations of their appearance, as well as the value placed on it}expressing increased satisfaction with their own appearance and a decrease in its importance. While important to acknowledge the distress and challenges experienced by participants, results highlight the need for research and care to focus on positive experiences of patients, rather than simply maladjustment. Explanations for the findings are explored, including the temporary nature of many appearance changes and the life-threatening nature of cancer. Copyright # 2007 John Wiley & Sons, Ltd.

Keywords: appearance; adolescents; qualitative; cancer; resilience

Introduction

Dramatic improvements in the development of treatments for cancer over the last two decades have resulted in increased survival rates for children and adolescents with cancer [1]. Experiencing cancer during adolescence presents

unique difficulties. This phase is usually marked by the achievement of a stable self-image, increasing autonomy and independence from the family, a growing awareness of sexuality, and the ability to think in more abstract terms [2]. Physical changes at puberty are partly responsible for an increasing awareness of appearance and attractiveness, often leaving the adolescent with a more negative body image [3,4]. An adolescent with cancer has the added burden of dealing with a potentially life- threatening illness, treatments, the disruption these cause, and any consequent physical changes [5,6]. All treatments for cancer impact on appearance.

Surgery can result in scarring and disfigurement and possibly limb loss. Radiotherapy can affect growth and development, the normal occurrence of puberty, and result in temporary or permanent hair loss. Chemotherapy can result in temporary hair loss, weight loss and gain [7–9].

Psychosocial research has examined cancer’s impact on young people, including the late effects of cancer treatment, such as its impact on cognitive development and functioning, growth and fertility, social functioning and self-esteem. Recent reviews have concluded that survivors of childhood cancer do not exhibit higher levels of depression and anxiety or lower levels of self-esteem than control groups or population norms [10], although some inconsistencies in findings relating to the emotional functioning of survivors has been acknowledged [11].

An aspect that has been overlooked in existing research is the effect the disease and its treatment has on adolescents’ appearance and how this impacts on their lives. This is surprising when it has been noted that, ‘. . .the greatest stress of illness for adolescent cancer patients is the disruption of body image’ [12, p. 536]. Eiser [9] notes that children often recount alopecia to be the most distressing aspect of cancer treatment. While the impact of physical changes to appearance is often underestimated, studies have repeatedly confirmed that physical appearance contributes more than any other factor to levels of overall self-esteem in the normative adolescent population [13,14].

Received: 17 August 2006

Revised: 12 January 2007

Accepted: 23 January 2007

Copyright # 2007 John Wiley & Sons, Ltd.

Psycho-Oncology Psycho-Oncology 16: 1019–1027 (2007) Published online 28 February 2007 in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/pon.1176

In addition, Reiter-Purtill and Noll [15] concluded that adolescents whose cancer treatment impacts on their central nervous system or their physical appearance are most at risk for difficulties in relationships with peers. Yet assessment of body image is rarely included

in studies examining the psychosocial effects of cancer amongst adolescents. Pendley et al. [16] found no differences in levels of body image satisfaction, loneliness and social anxiety amongst adolescent cancer survivors than amongst a control group. However, cancer survivors who had completed cancer treatment less recently showed poorer scores on all measures, suggesting that body image difficulties may increase with time after treatment. Puukko et al. [17,18] found that female teenage survivors of leukaemia had a poorer body image than control groups, and a study of 30 adolescents nine months after cancer diagnosis [19] found that a more positively perceived appearance predicted lower levels of depression and social anxiety, mediated by self- esteem. Three more studies have found evidence of adaptive responses in other areas of psycho-social functioning with the exception of concerns around appearance [20–22]. Despite methodological problems and variations

in the measures used to assess body image, these studies indicate that body image and appear- ance issues are likely to be of concern to adolescents surviving cancer, and may impact on aspects of social functioning and self-esteem. However, none have attempted to address why and how this occurs. Body image has mostly been assessed using questionnaires and scales, and where interviews have been conducted, they have largely been analysed and coded quantita- tively. However, qualitative research has been recommended as far more useful and informing in this area, creating a more comprehensive understanding of the adolescents’ experiences and their personal meaning, [23,24] and as a method of highlighting problems that would not have been identified by the use of question- naires alone [10]. In addition, qualitative approaches provide participants with more free- dom to express their own views [25], and are particularly appropriate because the topic under investigation is potentially sensitive and emotive. Additionally, such approaches offer the opportunity to understand how body image and perceptions of appearance have been altered by the experience of cancer. Despite recommendations for qualitative research, very little exists. A qualitative study was therefore conducted

with adolescents who had completed cancer treatment in order to identify and explore appear- ance-related concerns and ascertain their psycho- social impact.

Method

Ethics approval was sought and granted by the United Bristol Healthcare Trust Local Research Ethics Committee. After discussions with oncology staff at Bristol

Children’s Hospital (BCH), it was decided to focus on those adolescents who had completed treatment for cancer within the last two years. BCH treats around 120 new cancer patients each year, most of whom are under six years of age. Consequently the potential sample group was small and a sample of 10 adolescents was considered realistic. The World Health Organisation (WHO) definition of adoles- cents (as those between 10 and 20 years of age, [26]) was adhered to for the purposes of this study, so that the experiences of a wider age range of young people could be considered. Patients with any cancer type were included to allow for the multi- plicity of appearance changes resulting from cancer and its treatments. Eleven female and 12 male adolescents and their

parents were contacted by their consultant at BCH, informed of the study and asked whether they would like to participate. Patients considered too vulnerable by their consultants to participate in this research were not approached. Patients ex- pressing interest then contacted the researcher, queries about the study were addressed and inter- views were conducted and recorded at participants’ homes across the south-west of England. Parents were not present in the interview room, allowing for greater confidentiality. The interview schedule included three sections, with general questions designed to learn more about the lifestyle of participants and establish rapport, questions con- cerning the cancer and its treatment, and a section regarding appearance and the impact of appear- ance changes. Interviews were semi-structured, enabling the interviewer to pursue areas of interest as they arose, and lasted between 45 and 75min. Interviews were transcribed verbatim and ana-

lysed using Interpretative Phenomenological Ana- lysis (IPA) [27]. IPA aims to explore in detail, the participants’ views of the area being investigated. Therefore, it is described as phenomenological in that it deals with the personal perception of individuals, rather than attempting to offer an objective explanation of what is being investigated. However, it is recognised that in order to make sense of what participants are saying, the indivi- dual interpretation of the researcher is required [28]. A key principle of this method assumes that the way people talk about their illness will relate to their cognitions and behaviour [29]. Smith et al. [28] argue that IPA is particularly suited to investigation where attempting to establish an understanding of individuals’ thought processes in relation to their bodies, making it an appropriate method to employ here. In addition, IPA is

Copyright # 2007 John Wiley & Sons, Ltd. Psycho-Oncology 16: 1019–1027 (2007) DOI: 10.1002/pon

1020 M. L. Wallace et al.

strongly idiographic and while identifying general themes appearing across interviews is important, so is attention to each individual account, thereby making it suitable for smaller sample sizes [30]. In keeping with the emphasis on the importance

of the analyst’s interpretation in IPA, analysis was completed by a single researcher, also responsible for conducting the interviews [1]. Each transcript was read several times and initially, any points of interest were noted. Links were made between these points and were summarised to form a set of themes. The transcript was then reread to ‘test’ these. Overarching themes were then developed from the set of sub-themes. This was done with each transcript and common themes appearing across all transcripts formed the final set presented here. In order to increase the internal validity and reliability of the data, evidence is presented from the data to enable the reader to evaluate the interpretation of the data themselves [31]. How- ever, data presented need to be clearly distinct from interpretation [27,32] and in order to achieve this there is a heavy emphasis on quotations from participants to illustrate each theme. While it is recognised that interpretation of data may differ with another analyst, this practice assists in increasing the transparency of analysis.

Results

Despite aiming to recruit 10 adolescents, a final sample size of eight was achieved, of which six were female. The two male participants were 12 and 13 years, while the female participants varied between 14 and 19 years. This paper focuses on the interviews with female

participants because they were markedly different from those with male participants. This may be because male participants were somewhat younger than the females (reflected by their level of maturity and ability to reflect on their experiences), as well as the different meanings that appearance is likely to have for males and females in our society [33,34]. Table 1 summarises participants’ background

details, highlighting the range of ages and experi- ences of treatment and appearance changes. Participants’ diagnosis is not included as it was often not raised by participants during their

interviews and was not necessary in order to have an understanding of participants’ experiences of appearance changes when vivid descriptions of treatment and side-effects provided ample information. Five main themes emerged; the first deals directly

with identifying appearance changes of significance to participants and how these were responded to during treatment, in order to provide some ‘background’ or context for the reader. Themes 2–4 provide a more in-depth analysis of the illness experience and the impact of having cancer and an altered appearance. The final theme relates to recommendations for future psychosocial care and support for adolescents with cancer. Pseudo- nyms have been used throughout.

1: Appearance changes

Appearance concerns were an important part of the illness process and were of high concern. All participants had lost their hair as a result of chemotherapy and several described how this aspect of treatment caused them the most anxiety and was the worst part of treatment, despite experiencing numerous other extremely painful and uncomfortable side-effects.

I thought more about my hair than you know, am I going

to get through this.

Carrie, 17

. . .I don’t like being sick or anything like that, but that side didn’t seem to. . .seem as important as the fact that I was going to lose my hair.

Rachel, 16

Most dealt with the difficult process of losing their hair by cutting it very short and eventually shaving it off. Participants negotiated their altered appearance by using practical strategies including wearing caps and scarves, wigs and hair extensions and would not go out in public without covering their head. Most preferred not to go out alone, even with their heads covered.

I used to wear a hat all the time. It was glued to my head

basically.

Anna, 19

Other changes included scarring, bloating, rapid weight changes and resultant stretch marks.

Table 1. Participant details

Name Age Treatment Appearance changes Age at diagnosis

Debbie 14 Chemotherapy, surgery Alopecia, shortening of one leg, scarring 13

Vicky 15 Chemotherapy, surgery Alopecia, scarring 12

Rachel 16 Chemotherapy, surgery Alopecia, scarring, weight gain 13

Carrie 17 Chemotherapy Alopecia, scarring, weight gain, bloating 14

Sarah 18 Chemotherapy Alopecia, weight gain, scarring 16

Anna 19 Chemotherapy, surgery Alopecia, weight gain, scarring 16

1021Appearance changes in female adolescents treated for cancer

Copyright # 2007 John Wiley & Sons, Ltd. Psycho-Oncology 16: 1019–1027 (2007) DOI: 10.1002/pon

These impacted on behaviour by restricting social activity, mediated by changes in self-esteem and perceptions and expectations of others’ responses to their appearance.

Yeah, I went out, I went out less than when I had hair.

Anna, 19

The quote below suggests that it is the visibility of alopecia that makes it difficult within a social context. Although Sarah is able to engage in ‘hiding’ by wearing hats all the time, this behaviour in itself draws attention to her and marks her out as different and conspicuous, impacting on her self- esteem.

. . .it did knock my self-confidence, ‘cause. . .I think it’s um. . .it’s an obvious thing that people could see when you were out. ‘Cause I always had hats on

Sarah, 18

2: Rejection of an illness identity: Holding on to being ‘normal’

It was very important for participants to feel that they were able to remain ‘normal’ and unchanged in the eyes of those around them, and this was evident in their relationships with family, friends and health professionals. Participants rejected being identified as ill and where possible, denied their ‘sick role’. Strong negative reactions were expressed in response to sympathy, special treat- ment or interactions with others that might serve to highlight their difference. Appearance changes were an obvious indication of illness (e.g. hair loss is commonly associated with chemotherapy), en- abling people to identify them as different. An altered appearance made being perceived as normal and unchanged more difficult. Participants spoke of how they disliked any

preferential treatment by family.

I think people are a bit nicer to me, like. . .mum and dad are always like, ‘Anna are you alright, and it’s like, ‘oh

yeah I’m fine. I don’t need you fussing or anything. So

it’s like all attention, was just like, I had loads of

attention, and stuff like that. And I think people thought

they had to give me attention, but you know, they don’t.

Anna, 19

However, this desire to be perceived as ‘normal’ and unchanged was perhaps strongest in interac- tions with friends and peers. When asked whether she would have liked to be able to discuss appearance changes with her friends, Sarah re- sponded:

. . .no, not really, I don’t think so. It’s quite nice just being normal and not needing to talk about any of it.

Sarah, 18

Carrie wrote something for her class on her return to school, emphasising her desire to be treated the same.

. . .I said I’d rather you be open and I said I don’t want anybody treating me different, cos. . .I’m the same person inside you know, I just look a bit different for the minute

you know, and I, I’ll be willing to talk to anybody, so, I, I

made it clear. . . Carrie, 17

3: The meaning of appearance after cancer

There are two aspects of this theme. One refers to a shift that appears to have taken place in participants’ perceptions of their own appearance, since having cancer and experiencing what it is like to have an appearance outside of the ‘norm’ for a period of time. They view their own appearance differently than before, and although they are not necessarily objectively happier with their post- cancer appearance, they express a new appreciation and satisfaction with the way they look. Impor- tantly, much of this centred around looking ‘normal’ and ‘average’, viewed in very positive terms by participants.

I’m not the world’s thinnest person, or like. . .the prettiest person, not the biggest, not the smallest. I’m in the

middle, just the way I like it really. I think, everything

about my body I like almost.

Vicky, 15

. . .I’ve got hair now and you don’t take it for granted anymore and. . .my figure, I try and watch it, because you know I was so puffed up, and you realise, you know. . .I don’t worry about it ‘cause. . .I know what I have been like when I was ill, it’s horrible, but now. . .I’m just normal, so, I can appreciate that. I’m just a normal

person with a figure and hair.

Carrie, 17

Hair featured largely in participants’ newfound appreciation for their bodies. Many mentioned it as a favourite part of their appearance.

‘. . .cos I didn’t like my hair at the time, before I knew obviously. Now I would have cherished my hair.

Carrie, 17

Even where participants expressed some dissatis- faction with an aspect of their current appearance, they were able to reinterpret this in a more positive way. Here, Vicky’s scar becomes a positive symbol of her experience and what she has endured.

The one thing that bothers me, is probably my scars,

which I got from my operation, one across my belly and

the one where my long line went in and came out. But I, I

just think, like, I’ve got a scar to prove it really. I’ve got

the memory that will last forever. . .Yeah. . .but I’m quite proud of my scar.

Vicky, 15

The second aspect of this theme refers to a shift in the way appearance as a concept is valued. Participants reported considering it less important than they did before having cancer. This shift occurred gradually, as they dealt with their own

1022 M. L. Wallace et al.

Copyright # 2007 John Wiley & Sons, Ltd. Psycho-Oncology 16: 1019–1027 (2007) DOI: 10.1002/pon

altered appearance and observed the reactions of others. Participants had occasionally been treated differently based on the way they looked and through this, realised how tenuous an indicator appearance is of the value of a person. In reaching this conclusion, they have been able to discard the opinions of those making judgements based solely on appearance. In addition, this newfound ‘knowledge’ has enabled them to free themselves from the need to ‘follow the crowd’, and they have been able to express an individuality perhaps not easily available to other adolescents. There were numerous instances where partici-

pants expressed how the way in which they viewed appearance had been altered in some way.

Well, the way I look now, I just think. . .looks isn’t everything. Cos I remember when I had no hair, and I

was really. . .skinny and like really. . .ill, I thought, I felt like a freak really. . .but then I just thought about it and I thought well, if people can’t accept you for who you are,

not what you look like, then it ain’t worth it. My view to

life really is, don’t worry about your looks, it ain’t worth

it

Vicky, 15

Expressions of increased individuality were com- mon and although, not all were directly related to an altered appearance, being ‘different’ and ‘standing out’ had certainly influenced this. While they were relieved to be perceived as ‘normal’ by others once again, they were now prepared to be ‘different’ and ‘individual’ in ways that were more positive for them and had not previously been accessible.

. . .I’m not afraid to be different anymore, you know I. . .I never used, before I used to be quite, you know, jeans,

t-shirt girl, you know, just normal. Now I’d go out and

buy you know, something wacky, just if I liked it, I’d buy

it, you know, who cares, you know? I’ve never been like

that before.

Carrie, 17

In addition, participants expressed more indivi- duality, assertiveness and self-confidence in their interactions with others. Having been forcibly ‘separated’ from their peer group}both aestheti- cally through appearance changes, and physically through hospitalisation, they have perhaps had the opportunity to develop a more individual approach to aspects of their lives.

Yeah, someone said I’m a lot more cheeky. I’m not afraid

to say what I think anymore. Yeah, if like someone’s

doing something which I think is wrong, I will tell them.

Debbie, 14

4: Increased appreciation and enjoyment of life

As is common after experiencing a life-threatening illness [35] participants spoke of how they appre- ciated what they had and wanted to make the most of it, as alluded to in the above theme. In addition,

their view of life had been altered in a way that enabled them to see things in a more positive light. Some participants also spoke of their ability to ‘put things in perspective’ and not get as easily upset by everyday stresses.

I appreciate a lot more things now, in life. I mean, I

appreciate being here, for one. Um. . .um, I always think, sometimes I, I’ll sit down and I will think about what I’ve

been through and you know, I’ll just, I’ll be happy, I’ll

think, I’ll feel really happy that you know, I’m better

now.

Carrie, 17

Participants also felt stronger through having experienced cancer and survived and in many instances they felt this had equipped them with the confidence and the belief that they could deal with other stressful situations more effectively as a result.

. . .one thing that I always think now is, you know, what can anything be worse than having cancer, you know,

you can’t. . .if you’re feeling low now in life about something, you think, well, for God’s sake, I’ve had

cancer, you know.

Carrie, 17

However, the meaning given to the cancer experi- ence and the ability to take something positive from it, was not without ambivalence in some cases. Despite the gains in strength and determina- tion, and the value of being able to see everyday stresses in perspective, there was still some nostal- gia for a time when ignorance of this perspective allowed everyday stresses such importance.

I want to be one of those people that fuss about stupid

little things. . .because I don’t know about. . .the big things.

Debbie, 14

Therefore, although participants clearly recognised that they had gained much from their experience with cancer, there was also an awareness of something else having been lost.

5: Aspects of healthcare provision

Most participants felt they would have benefited from being able to talk to another teenage cancer survivor about their experiences, including mana- ging a changed appearance, both at diagnosis and throughout treatment. They needed to hear ‘success stories’ and speak to someone who they felt could understand what they were going through. There was a strong feeling that only those who had personally experienced cancer could know what it was like, and in emphasising this, partici- pants were identifying themselves as members of a group, with an illness experience as the common denominator. This seems to contradict their rejec- tion of an illness identity and highlights the tensions experienced by these adolescents in trying

1023Appearance changes in female adolescents treated for cancer

Copyright # 2007 John Wiley & Sons, Ltd. Psycho-Oncology 16: 1019–1027 (2007) DOI: 10.1002/pon

to hold on to their familiar, well selves, while needing to acknowledge the reality of the illness they were facing and all the challenges it posed.

I think definitely, definitely having someone else there

who’s had it, and knows all about what you’re going

through is be’er, than having someone who says, ‘I’ve

treated someone with the same thing as you’, if you know

what I mean.

Anna, 19

Participants also spoke about their relationships with their doctors and the empathy and under- standing expressed by their consultants as their relationship built up over time. The importance of choice and control that consultants were sometimes able to provide was key. Participants appreciated being spoken to directly, rather than discussions about treatment being directed at their parents. This enabled them to feel informed and also allowed them to feel some control over a very uncontrollable situation. This seems especially important at a phase of development associated with seeking further independence and influence over their lives.

. . .they’d say what it meant, instead of just telling you what it was. Or speaking to my parents even. They spoke

to me every time.

Anna, 19

Discussion

This study explored the impact of an altered appearance resulting from cancer treatment during adolescence. Altered appearance was of enormous concern during cancer treatment and impacted on the self-esteem, thoughts and behaviour of partici- pants, particularly involving social interaction with peers. However, over time, participants experi- enced a shift in the way they perceived and managed their own appearance, and their percep- tion of the value of appearance as a means of evaluating themselves and others. In addition, their experience of being ‘different’ activated a degree of individuality previously unexplored by them. Fi- nally, aspects of healthcare provision that could improve the treatment experience of adolescents were identified. The findings relating to the shift in perception

and value of appearance are extremely positive, particularly in light of previous studies amongst the normative adolescent population, where levels of appearance dissatisfaction are typically high [34,36,37]. Current findings support research con- ducted by Van Dongen-Melman et al. [38], where adolescent cancer survivors scored significantly higher on appearance competence on Harter’s self-perception profile [39] than did a control group, although reasons for this were not explored.

Dahlquist [40] points out that researchers tend to ‘hunt for signs of maladjustment’ (p. 45) and the findings here suggest that such preconceptions may be misguided, evidenced by the recent move away from ‘deficit-centred’ research and clinical practice, to an emphasis on the resilience of those facing cancer, and the ways in which this is achieved [41]. Interestingly, similar debates abound in the recent literature on those dealing with an altered appear- ance [33]. Several theories do attempt to explain the

‘healthy personal growth’ [42, p. 1] reported by those who have experienced a traumatic life event such as cancer. One such model is the Adolescent Resilience Model (ARM; [43]). Resilience, within the context of adolescents experiencing cancer, is defined by Haase et al. [44] as ‘a process for identifying and developing resources or strengths to manage stresses in order to gain positive outcome from the experience (cited in [45; p. 305]). Haase [43] proposes that resilience is influenced by protective and risk components including illness, family and social-related factors, individual coping and derived meaning. This model may be a useful framework on which to base further research. However, situating resilience as a final goal of adjustment suggests that those who do not derive meaning from their experience and achieve resilience are not fully adjusted. ‘Pathologising’ those who do not find the experi- ence of having cancer in some way positive, may be just as unhelpful as pathologising those experien- cing psychosocial difficulties. The construct of response shift also signifies a

promising area for further research regarding positive psychosocial outcomes after cancer. It is defined as the ‘change of internal standards, values and the conceptualization of quality of life’, occurring when individuals experience a change to their health status and need to accommodate this [46, p. 1507]. Schwartz et al. [47] and Langeveld et al. [48] suggest that standards and values may be lowered as a result of response shift, so that even when cancer survivors report a similar quality of life to healthy controls, this may not be a true reflection of their quality of life, due to their lowered expectations. Similarly, young people report increased satisfaction with their appearance after experiencing cancer because their expecta- tions about appearance may have been lowered, thereby leaving them more satisfied with the way they look, especially once they return to their ‘pre- cancer’ appearance (e.g. when hair grows back). While these two theories attempt to explain

overall positive psychosocial outcomes, Moss and Carr’s [49] description of the organisation of self- concept refers specifically to appearance-related adjustment. They propose that the self is comprised of numerous self-aspects (roles, relationships, attributes and traits), some of which are perceived

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Copyright # 2007 John Wiley & Sons, Ltd. Psycho-Oncology 16: 1019–1027 (2007) DOI: 10.1002/pon

as more important than others. More influential self-aspects will form the overall way people perceive themselves and be more readily available to draw upon when interpreting unclear stimuli. If self-aspects relating to appearance are fairly central, experiencing a negatively perceived change in appearance is more likely to result in poor adjustment than if these self-aspects are organised less centrally in the self-concept. This suggests that participants in the current study may have experi- enced a shift in the organisation of their self- concepts relating to appearance, with these aspects becoming more peripheral than they once were. It is unclear how this process occurs, but this explanation suggests extremely adaptive coping mechanisms and deserves further exploration. It is important to acknowledge the particular

situation of the participants in this study. All have experienced a life-threatening illness impacting on their values and outlook on life and possibly on the way they perceive and value appearance. In addition, while they experienced an altered appear- ance during their cancer treatment, this was temporary in all but one case and they no longer appear visibly ‘different’. The capacity to return to an appearance no longer outside of the ‘norm’ may have enabled them to express more positive views about their own appearance, rebuild their con- fidence and feel at ease to express positive, individual behaviour. This option is not available to everybody and the temporary nature of some of these appearance changes may be an important issue. One way of examining these issues in more detail

might be to explore the experiences and concerns of adolescents with conditions affecting appearance that are life-threatening or non-life-threatening and result in permanent or temporary appearance changes. It would be useful to look at some of these issues within the context of different condi- tions fulfilling these criteria. Examples include conditions such as meningococcal septicaemia, scoliosis (curvature of the spine) and acne. It is important not to devalue or downplay the

negative experiences of these participants and the challenges they faced. Their suggestions for the improvement of care, such as being able to talk to another adolescent cancer survivor is worth further exploration [50]. However, this approach to support will not necessarily suit everyone and should not be assumed to be universally helpful (see [51]). This study does have some methodological

weaknesses. Hospital staff stipulated that they should select which patients were contacted regard- ing this study. For ethical reasons, they did not wish to contact patients whom they thought were particularly vulnerable and who might find the subject of the research upsetting, although the extent to which this practice was followed is not

known. Although having a ‘biased sample’ is less of a concern in qualitative research, it does mean that those patients for whom appearance and body image may be of particular concern, might not have been invited to participate. Furthermore, it is difficult to know whether

those who responded were more or less concerned about changes in their appearance than those who did not. Patenaude and Kupst [23] suggest that young cancer survivors refusing invitations to participate in research may be those who are experiencing more difficulties. However, the oppo- site could also be true. Rumsey and Harcourt [33] suggest that those who have fewer problems with or place less emphasis on appearance may be less likely to participate in appearance-related research. In addition, Patenaude and Kupst [23] point out that people differ in the degree to which they want to identify as someone who has experienced cancer, and this will influence who responds to research requests. However, the problem of self-selection in research is not easily overcome. Related to this, is the issue of low male response

rate. Whilst a similar number of males and females were contacted, six females (55%) responded compared with only two males (17%). It is possible that this reflected the subject of the research. Although changing, society places greater pressure on women to conform to an appearance ideal, and women are therefore constructed as being more concerned about appearance than men. This may explain why males tend to participate less in appearance and body image research [52]. In addition, awareness that the interviewer was female may have discouraged males from taking part in a study about a potentially sensitive issue. All participants had completed cancer treatment

within the previous two years. Body image and appearance concerns are unlikely to be static and it is possible that their impact and the priority they are given might vary depending on time since treatment. Participants may have still felt euphoria at having survived and received the ‘all clear’, possibly de-prioritising appearance concerns for a period of time. Notwithstanding these shortcomings, this study

offers rich data in an area previously unexplored in great detail. The interviews have resulted in a wealth of information about the experience of having cancer during adolescence, particularly in terms of appearance changes. The findings raise questions regarding resilience, response shift and changes in self-concept, and the conditions under which these occur amongst people diagnosed with cancer is a fruitful area for further research.

Acknowledgements

The work was sponsored by the University of the West of England, Bristol.

1025Appearance changes in female adolescents treated for cancer

Copyright # 2007 John Wiley & Sons, Ltd. Psycho-Oncology 16: 1019–1027 (2007) DOI: 10.1002/pon

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