Manejando los cambios de la apariencia resultante del cáncer

7/28/2019 Manejando los cambios de la apariencia resultante del cncer

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

Melissa L. Wallace1 *, Diana Harcourt 1 , Nichola Rumsey 1 and Annabel Foot 21

Centre for Appearance Research, University of the West of England, Bristol, UK 2

Bristol Childrens Hospital, United Bristol NHS Trust, UK

* Correspondence to: CORE,Department of Psychology,University College London,1-19 Torrington Place, LondonWC1E 7HB, UK. E-mail:[email protected]

AbstractTypically, adolescence is marked by cognitive and physical developments impacting on self-esteem, independence and sexual awareness, often resulting in increased appearance awarenessand dissatisfaction. Adolescents with cancer have the additional burden of illness, treatmentsand resultant appearance changes. This study aimed to explore the impact of these changes onadolescents who have had cancer. In depth, semi-structured interviews were conducted with sixfemales between 14 and 19 years who had completed treatment within the previous two years,and analysed using Interpretative Phenomenological Analysis (IPA). Concerns around analtered appearance were signicant during treatment, serving as a constant reminder of difference and a marker of illness. However, since treatment, participants expressed anapparent shift in views and expectations of their appearance, as well as the value placed onit} expressing increased satisfaction with their own appearance and a decrease in itsimportance. While important to acknowledge the distress and challenges experienced byparticipants, results highlight the need for research and care to focus on positive experiences of patients, rather than simply maladjustment. Explanations for the ndings 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 decadeshave resulted in increased survival rates forchildren and adolescents with cancer [1].

Experiencing cancer during adolescence presentsunique difficulties. This phase is usually marked bythe achievement of a stable self-image, increasingautonomy and independence from the family, a

growing awareness of sexuality, and the ability tothink in more abstract terms [2]. Physical changesat puberty are partly responsible for an increasingawareness of appearance and attractiveness, oftenleaving the adolescent with a more negative bodyimage [3,4]. An adolescent with cancer has theadded burden of dealing with a potentially life-threatening illness, treatments, the disruption thesecause, and any consequent physical changes [5,6].

All treatments for cancer impact on appearance.Surgery can result in scarring and disgurementand possibly limb loss. Radiotherapy can affectgrowth and development, the normal occurrence of puberty, and result in temporary or permanent hairloss. Chemotherapy can result in temporary hairloss weight loss and gain [79]

Psychosocial research has examined cancersimpact on young people, including the late effectsof cancer treatment, such as its impact on cognitivedevelopment and functioning, growth and fertility,social functioning and self-esteem. Recent reviewshave concluded that survivors of childhoodcancer do not exhibit higher levels of depressionand anxiety or lower levels of self-esteem thancontrol groups or population norms [10], althoughsome inconsistencies in ndings relating to the

emotional functioning of survivors has beenacknowledged [11].An aspect that has been overlooked in existing

research is the effect the disease and its treatmenthas on adolescents appearance and how thisimpacts on their lives. This is surprising when ithas been noted that, . . .the greatest stress of illnessfor adolescent cancer patients is the disruption of body image [12, p. 536]. Eiser [9] notes thatchildren often recount alopecia to be the mostdistressing aspect of cancer treatment. While theimpact of physical changes to appearance is oftenunderestimated, studies have repeatedly conrmedthat physical appearance contributes more thanany other factor to levels of overall self-esteem inthe normative adolescent population [13 14]

Received: 17 August 2006Revised: 12 January 2007Accepted: 23 January 2007

Psycho-OncologyPsycho-Oncology 16 : 10191027 (2007)Published online 28 February 2007 in Wiley InterScience (www.interscience.wiley.com). DOI : 10.1002/pon.1176


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In addition, Reiter-Purtill and Noll [15] concludedthat adolescents whose cancer treatment impactson their central nervous system or their physicalappearance are most at risk for difficulties inrelationships with peers.

Yet assessment of body image is rarely includedin studies examining the psychosocial effects of cancer amongst adolescents. Pendley et al . [16]found no differences in levels of body imagesatisfaction, loneliness and social anxiety amongstadolescent cancer survivors than amongst acontrol group. However, cancer survivors whohad completed cancer treatment less recentlyshowed poorer scores on all measures, suggestingthat body image difficulties may increase withtime after treatment. Puukko et al . [17,18] foundthat female teenage survivors of leukaemia had apoorer body image than control groups, and a

study of 30 adolescents nine months after cancerdiagnosis [19] found that a more positivelyperceived 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-socialfunctioning with the exception of concerns aroundappearance [2022].

Despite methodological problems and variationsin the measures used to assess body image,these studies indicate that body image and appear-ance issues are likely to be of concern toadolescents surviving cancer, and may impact onaspects of social functioning and self-esteem.However, none have attempted to address whyand how this occurs. Body image has mostlybeen assessed using questionnaires and scales, andwhere interviews have been conducted, theyhave largely been analysed and coded quantita-tively. However, qualitative research has beenrecommended as far more useful and informingin this area, creating a more comprehensiveunderstanding of the adolescents experiencesand their personal meaning, [23,24] and as amethod of highlighting problems that would

not have been identied by the use of question-naires alone [10]. In addition, qualitativeapproaches provide participants with more free-dom to express their own views [25], and areparticularly appropriate because the topicunder investigation is potentially sensitive andemotive. Additionally, such approaches offerthe opportunity to understand how body imageand perceptions of appearance have beenaltered by the experience of cancer. Despiterecommendations for qualitative research, verylittle exists.

A qualitative study was therefore conductedwith adolescents who had completed cancertreatment in order to identify and explore appear-

Method

Ethics approval was sought and granted by theUnited Bristol Healthcare Trust Local ResearchEthics Committee.

After discussions with oncology staff at BristolChildrens Hospital (BCH), it was decided to focuson those adolescents who had completed treatmentfor cancer within the last two years. BCH treatsaround 120 new cancer patients each year, most of whom are under six years of age. Consequently thepotential sample group was small and a sample of 10 adolescents was considered realistic. The WorldHealth Organisation (WHO) denition of adoles-cents (as those between 10 and 20 years of age, [26])was adhered to for the purposes of this study, sothat the experiences of a wider age range of youngpeople could be considered. Patients with any

cancer type were included to allow for the multi-plicity of appearance changes resulting from cancerand its treatments.

Eleven female and 12 male adolescents and theirparents were contacted by their consultant at BCH,informed of the study and asked whether theywould like to participate. Patients considered toovulnerable by their consultants to participate inthis 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 participantshomes across the south-west of England. Parentswere not present in the interview room, allowingfor greater condentiality. The interview scheduleincluded three sections, with general questionsdesigned to learn more about the lifestyle of participants and establish rapport, questions con-cerning the cancer and its treatment, and a sectionregarding appearance and the impact of appear-ance changes. Interviews were semi-structured,enabling the interviewer to pursue areas of interestas they arose, and lasted between 45 and 75 min.

Interviews were transcribed verbatim and ana-lysed using Interpretative Phenomenological Ana-

lysis (IPA) [27]. IPA aims to explore in detail, theparticipants views of the area being investigated.Therefore, it is described as phenomenological inthat it deals with the personal perception of individuals, rather than attempting to offer anobjective explanation of what is being investigated.However, it is recognised that in order to makesense of what participants are saying, the indivi-dual interpretation of the researcher is required[28]. A key principle of this method assumes thatthe way people talk about their illness will relate totheir cognitions and behaviour [29]. Smith et al .[28] argue that IPA is particularly suited toinvestigation where attempting to establish anunderstanding of individuals thought processes in

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strongly idiographic and while identifying generalthemes appearing across interviews is important, sois attention to each individual account, therebymaking it suitable for smaller sample sizes [30].

In keeping with the emphasis on the importanceof the analysts interpretation in IPA, analysis wascompleted by a single researcher, also responsiblefor conducting the interviews [1]. Each transcriptwas read several times and initially, any points of interest were noted. Links were made between thesepoints and were summarised to form a set of themes. The transcript was then reread to testthese. Overarching themes were then developedfrom the set of sub-themes. This was done witheach transcript and common themes appearingacross all transcripts formed the nal set presentedhere. In order to increase the internal validity andreliability of the data, evidence is presented from

the data to enable the reader to evaluate theinterpretation of the data themselves [31]. How-ever, data presented need to be clearly distinct frominterpretation [27,32] and in order to achieve thisthere is a heavy emphasis on quotations fromparticipants to illustrate each theme. While it isrecognised that interpretation of data may differwith another analyst, this practice assists inincreasing the transparency of analysis.

Results

Despite aiming to recruit 10 adolescents, a nalsample size of eight was achieved, of which six werefemale. The two male participants were 12 and 13years, while the female participants varied between14 and 19 years.

This paper focuses on the interviews with femaleparticipants because they were markedly differentfrom those with male participants. This may bebecause male participants were somewhat youngerthan the females (reected by their level of maturityand ability to reect on their experiences), as wellas the different meanings that appearance is likelyto have for males and females in our society [33,34].

Table 1 summarises participants backgrounddetails, highlighting the range of ages and experi-ences of treatment and appearance changes.Participants diagnosis is not included as it wasoften not raised by participants during their

interviews and was not necessary in order tohave an understanding of participants experiencesof appearance changes when vivid descriptionsof treatment and side-effects provided ampleinformation.

Five main themes emerged; the rst deals directlywith identifying appearance changes of signicanceto participants and how these were responded toduring treatment, in order to provide somebackground or context for the reader. Themes24 provide a more in-depth analysis of the illnessexperience and the impact of having cancer and analtered appearance. The nal theme relates torecommendations for future psychosocial careand 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. Allparticipants had lost their hair as a result of chemotherapy and several described how thisaspect of treatment caused them the most anxietyand was the worst part of treatment, despiteexperiencing numerous other extremely painfuland uncomfortable side-effects.

I thought more about my hair than you know, am I goingto get through this.Carrie, 17

. . .I dont like being sick or anything like that, but thatside didnt seem to . . .seem as important as the fact that Iwas going to lose my hair.Rachel, 16

Most dealt with the difficult process of losingtheir hair by cutting it very short and eventuallyshaving it off. Participants negotiated their alteredappearance by using practical strategies includingwearing caps and scarves, wigs and hair extensionsand would not go out in public without coveringtheir 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 headbasically.Anna, 19

Other changes included scarring, bloating, rapidweight 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 13Vicky 15 Chemotherapy, surgery Alopecia, scarring 12Rachel 16 Chemotherapy, surgery Alopecia, scarring, weight gain 13Carrie 17 Chemotherapy Alopecia, scarring, weight gain, bloating 14Sarah 18 Chemotherapy Alopecia weight gain scarring 16

1021Appearance changes in female adolescents treated for cancer


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These impacted on behaviour by restricting socialactivity, mediated by changes in self-esteem andperceptions and expectations of others responsesto 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 socialcontext. Although Sarah is able to engage inhiding by wearing hats all the time, this behaviourin itself draws attention to her and marks her outas different and conspicuous, impacting on her self-esteem.

. . .it did knock my self-condence, cause . . .I think itsum . . .its an obvious thing that people could see whenyou were out. Cause I always had hats onSarah, 18

2: Rejection of an illness identity: Holding on tobeing normal

It was very important for participants to feel thatthey were able to remain normal and unchangedin the eyes of those around them, and this wasevident in their relationships with family, friendsand health professionals. Participants rejectedbeing identied as ill and where possible, deniedtheir sick role. Strong negative reactions wereexpressed in response to sympathy, special treat-

ment or interactions with others that might serve tohighlight their difference. Appearance changeswere an obvious indication of illness (e.g. hair lossis commonly associated with chemotherapy), en-abling people to identify them as different. Analtered appearance made being perceived as normaland unchanged more difficult.

Participants spoke of how they disliked anypreferential treatment by family.

I think people are a bit nicer to me, like . . .mum and dadare always like, Anna are you alright, and its like, ohyeah Im ne. I dont need you fussing or anything. So

its like all attention, was just like, I had loads of attention, and stuff like that. And I think people thoughtthey had to give me attention, but you know, they dont.Anna, 19

However, this desire to be perceived as normaland unchanged was perhaps strongest in interac-tions with friends and peers. When asked whethershe would have liked to be able to discussappearance changes with her friends, Sarah re-sponded:

. . .no, not really, I dont think so. Its quite nice justbeing normal and not needing to talk about any of it.

Sarah, 18

Carrie wrote something for her class on her return

. . .I said Id rather you be open and I said I dont wantanybody treating me different, cos . . .Im the same personinside you know, I just look a bit different for the minuteyou know, and I, Ill be willing to talk to anybody, so, I, Imade it clear . . .Carrie, 17

3: The meaning of appearance after cancer

There are two aspects of this theme. One refers to ashift that appears to have taken place inparticipants perceptions of their own appearance,since having cancer and experiencing what it is liketo have an appearance outside of the norm for aperiod of time. They view their own appearancedifferently than before, and although they are notnecessarily objectively happier with their post-cancer appearance, they express a new appreciationand satisfaction with the way they look. Impor-tantly, much of this centred around lookingnormal and average, viewed in very positiveterms by participants.

Im not the worlds thinnest person, or like . . .the prettiestperson, not the biggest, not the smallest. Im in themiddle, just the way I like it really. I think, everythingabout my body I like almost.Vicky, 15

. . .Ive got hair now and you dont take it for grantedanymore and . . .my gure, I try and watch it, because youknow I was so puffed up, and you realise, you know . . .Idont worry about it cause . . .I know what I have beenlike when I was ill, its horrible, but now . . .Im justnormal, so, I can appreciate that. Im just a normalperson with a gure and hair.Carrie, 17

Hair featured largely in participants newfoundappreciation for their bodies. Many mentioned it asa favourite part of their appearance.

. . .cos I didnt like my hair at the time, before I knewobviously. 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 positiveway. Here, Vickys scar becomes a positive symbolof 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 andthe one where my long line went in and came out. But I, I just think, like, Ive got a scar to prove it really. Ive gotthe memory that will last forever . . .Yeah . . .but Im quiteproud of my scar.Vicky, 15

The second aspect of this theme refers to a shift inthe way appearance as a concept is valued.Participants reported considering it less important



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altered appearance and observed the reactions of others. Participants had occasionally been treateddifferently based on the way they looked andthrough this, realised how tenuous an indicatorappearance is of the value of a person. In reachingthis conclusion, they have been able to discard theopinions of those making judgements based solelyon appearance. In addition, this newfoundknowledge has enabled them to free themselvesfrom the need to follow the crowd, and they havebeen able to express an individuality perhaps noteasily available to other adolescents.

There were numerous instances where partici-pants expressed how the way in which they viewedappearance had been altered in some way.

Well, the way I look now, I just think . . .looks isnteverything. Cos I remember when I had no hair, and Iwas really . . .skinny and like really . . .ill, I thought, I feltlike a freak really . . .but then I just thought about it and Ithought well, if people cant accept you for who you are,not what you look like, then it aint worth it. My view tolife really is, dont worry about your looks, it aint worthitVicky, 15

Expressions of increased individuality were com-mon and although, not all were directly related toan altered appearance, being different andstanding out had certainly inuenced this. Whilethey were relieved to be perceived as normal byothers once again, they were now prepared to be

different and individual in ways that were morepositive for them and had not previously beenaccessible.

. . .Im not afraid to be different anymore, you know I . . .Inever used, before I used to be quite, you know, jeans,t-shirt girl, you know, just normal. Now Id go out andbuy you know, something wacky, just if I liked it, Id buyit, you know, who cares, you know? Ive never been likethat before.Carrie, 17

In addition, participants expressed more indivi-duality, assertiveness and self-condence in their

interactions with others. Having been forciblyseparated from their peer group } both aestheti-cally through appearance changes, and physicallythrough hospitalisation, they have perhaps had theopportunity to develop a more individual approachto aspects of their lives.

Yeah, someone said Im a lot more cheeky. Im not afraidto say what I think anymore. Yeah, if like someonesdoing 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-threateningillness [35] participants spoke of how they appre-

their view of life had been altered in a way thatenabled them to see things in a more positive light.Some participants also spoke of their ability to putthings in perspective and not get as easily upset byeveryday stresses.

I appreciate a lot more things now, in life. I mean, Iappreciate being here, for one. Um . . .um, I always think,sometimes I, Ill sit down and I will think about what Ivebeen through and you know, Ill just, Ill be happy, Illthink, Ill feel really happy that you know, Im betternow.Carrie, 17

Participants also felt stronger through havingexperienced cancer and survived and in manyinstances they felt this had equipped them withthe condence and the belief that they could dealwith other stressful situations more effectively as aresult.

. . .one thing that I always think now is, you know, whatcan anything be worse than having cancer, you know,you cant . . .if youre feeling low now in life aboutsomething, you think, well, for Gods sake, Ive hadcancer, you know.Carrie, 17

However, the meaning given to the cancer experi-ence and the ability to take something positivefrom it, was not without ambivalence in somecases. 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 perspectiveallowed everyday stresses such importance.

I want to be one of those people that fuss about stupidlittle things . . .because I dont know about . . .the bigthings.Debbie, 14

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

5: Aspects of healthcare provision

Most participants felt they would have benetedfrom being able to talk to another teenage cancersurvivor about their experiences, including mana-ging a changed appearance, both at diagnosis andthroughout treatment. They needed to hearsuccess stories and speak to someone who theyfelt could understand what they were goingthrough. There was a strong feeling that only thosewho had personally experienced cancer could knowwhat it was like, and in emphasising this, partici-

pants were identifying themselves as members of agroup, with an illness experience as the commondenominator. This seems to contradict their rejec-



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to hold on to their familiar, well selves, whileneeding to acknowledge the reality of the illnessthey were facing and all the challenges it posed.

I think denitely, denitely having someone else therewhos had it, and knows all about what youre goingthrough is beer, than having someone who says, Ivetreated someone with the same thing as you, if you knowwhat I mean.Anna, 19

Participants also spoke about their relationshipswith their doctors and the empathy and under-standing expressed by their consultants as theirrelationship built up over time. The importance of choice and control that consultants were sometimesable to provide was key. Participants appreciatedbeing spoken to directly, rather than discussionsabout treatment being directed at their parents.This enabled them to feel informed and alsoallowed them to feel some control over a veryuncontrollable situation. This seems especiallyimportant at a phase of development associatedwith seeking further independence and inuenceover their lives.

. . .theyd say what it meant, instead of just telling youwhat it was. Or speaking to my parents even. They spoketo me every time.Anna, 19

Discussion

This study explored the impact of an alteredappearance resulting from cancer treatment duringadolescence. Altered appearance was of enormousconcern during cancer treatment and impacted onthe self-esteem, thoughts and behaviour of partici-pants, particularly involving social interaction withpeers. However, over time, participants experi-enced a shift in the way they perceived andmanaged their own appearance, and their percep-tion of the value of appearance as a means of

evaluating themselves and others. In addition, theirexperience of being different activated a degree of individuality previously unexplored by them. Fi-nally, aspects of healthcare provision that couldimprove the treatment experience of adolescentswere identied.

The ndings relating to the shift in perceptionand value of appearance are extremely positive,particularly in light of previous studies amongst thenormative adolescent population, where levels of appearance dissatisfaction are typically high[34,36,37]. Current ndings support research con-

ducted by Van Dongen-Melman et al . [38], whereadolescent cancer survivors scored signicantlyhigher on appearance competence on Harters

Dahlquist [40] points out that researchers tend tohunt for signs of maladjustment (p. 45) and thendings here suggest that such preconceptions maybe misguided, evidenced by the recent move awayfrom decit-centred research and clinical practice,to an emphasis on the resilience of those facingcancer, and the ways in which this is achieved [41].Interestingly, similar debates abound in the recentliterature on those dealing with an altered appear-ance [33].

Several theories do attempt to explain thehealthy personal growth [42, p. 1] reported bythose who have experienced a traumatic life eventsuch as cancer. One such model is the AdolescentResilience Model (ARM; [43]). Resilience, withinthe context of adolescents experiencing cancer, isdened by Haase et al . [44] as a process foridentifying and developing resources or strengths

to manage stresses in order to gain positiveoutcome from the experience (cited in [45; p.305]). Haase [43] proposes that resilience isinuenced by protective and risk componentsincluding illness, family and social-related factors,individual coping and derived meaning. This modelmay be a useful framework on which to basefurther research. However, situating resilience as anal goal of adjustment suggests that those who donot derive meaning from their experience andachieve resilience are not fully adjusted.Pathologising those who do not nd 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 signies apromising area for further research regardingpositive psychosocial outcomes after cancer. It isdened as the change of internal standards, valuesand the conceptualization of quality of life,occurring when individuals experience a changeto their health status and need to accommodatethis [46, p. 1507]. Schwartz et al . [47] andLangeveld et al . [48] suggest that standards andvalues may be lowered as a result of response shift,

so that even when cancer survivors report a similarquality of life to healthy controls, this may not be atrue reection of their quality of life, due to theirlowered expectations. Similarly, young peoplereport increased satisfaction with their appearanceafter experiencing cancer because their expecta-tions about appearance may have been lowered,thereby leaving them more satised with the waythey look, especially once they return to their pre-cancer appearance (e.g. when hair grows back).

While these two theories attempt to explainoverall positive psychosocial outcomes, Moss and

Carrs [49] description of the organisation of self-concept refers specically to appearance-relatedadjustment. They propose that the self is comprised



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as more important than others. More inuentialself-aspects will form the overall way peopleperceive themselves and be more readily availableto draw upon when interpreting unclear stimuli. If self-aspects relating to appearance are fairlycentral, experiencing a negatively perceived changein appearance is more likely to result in pooradjustment than if these self-aspects are organisedless centrally in the self-concept. This suggests thatparticipants in the current study may have experi-enced a shift in the organisation of their self-concepts relating to appearance, with these aspectsbecoming more peripheral than they once were. Itis unclear how this process occurs, but thisexplanation suggests extremely adaptive copingmechanisms and deserves further exploration.

It is important to acknowledge the particularsituation of the participants in this study. All have

experienced a life-threatening illness impacting ontheir values and outlook on life and possibly on theway they perceive and value appearance. Inaddition, while they experienced an altered appear-ance during their cancer treatment, this wastemporary in all but one case and they no longerappear visibly different. The capacity to return toan appearance no longer outside of the norm mayhave enabled them to express more positive viewsabout their own appearance, rebuild their con-dence and feel at ease to express positive,individual behaviour. This option is not availableto everybody and the temporary nature of some of these appearance changes may be an importantissue.

One way of examining these issues in more detailmight be to explore the experiences and concerns of adolescents with conditions affecting appearancethat are life-threatening or non-life-threatening andresult in permanent or temporary appearancechanges. It would be useful to look at some of these issues within the context of different condi-tions fullling these criteria. Examples includeconditions such as meningococcal septicaemia,scoliosis (curvature of the spine) and acne.

It is important not to devalue or downplay thenegative experiences of these participants and thechallenges they faced. Their suggestions for theimprovement of care, such as being able to talk toanother adolescent cancer survivor is worthfurther exploration [50]. However, this approachto support will not necessarily suit everyone andshould not be assumed to be universally helpful(see [51]).

This study does have some methodologicalweaknesses. Hospital staff stipulated that theyshould select which patients were contacted regard-

ing this study. For ethical reasons, they did notwish to contact patients whom they thought wereparticularly vulnerable and who might nd the

known. Although having a biased sample is less of a concern in qualitative research, it does mean thatthose patients for whom appearance and bodyimage may be of particular concern, might nothave been invited to participate.

Furthermore, it is difficult to know whetherthose who responded were more or less concernedabout changes in their appearance than those whodid not. Patenaude and Kupst [23] suggest thatyoung cancer survivors refusing invitations toparticipate in research may be those who areexperiencing more difficulties. However, the oppo-site could also be true. Rumsey and Harcourt [33]suggest that those who have fewer problems withor place less emphasis on appearance may be lesslikely to participate in appearance-related research.In addition, Patenaude and Kupst [23] point outthat people differ in the degree to which they want

to identify as someone who has experienced cancer,and this will inuence who responds to researchrequests. However, the problem of self-selection inresearch is not easily overcome.

Related to this, is the issue of low male responserate. Whilst a similar number of males and femaleswere contacted, six females (55%) respondedcompared with only two males (17%). It is possiblethat this reected the subject of the research.Although changing, society places greater pressureon women to conform to an appearance ideal, andwomen are therefore constructed as being moreconcerned about appearance than men. This mayexplain why males tend to participate less inappearance and body image research [52]. Inaddition, awareness that the interviewer was femalemay have discouraged males from taking part in astudy about a potentially sensitive issue.

All participants had completed cancer treatmentwithin the previous two years. Body image andappearance concerns are unlikely to be static and itis possible that their impact and the priority theyare given might vary depending on time sincetreatment. Participants may have still felt euphoriaat having survived and received the all clear,

possibly de-prioritising appearance concerns for aperiod of time.

Notwithstanding these shortcomings, this studyoffers rich data in an area previously unexplored ingreat detail. The interviews have resulted in awealth of information about the experience of having cancer during adolescence, particularly interms of appearance changes. The ndings raisequestions regarding resilience, response shift andchanges in self-concept, and the conditions underwhich these occur amongst people diagnosed withcancer is a fruitful area for further research.

Acknowledgements



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Manejando los cambios de la apariencia resultante del cáncer

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