consecuencias positivas y negativas del cáncer en la adolescencia

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Positive and negative consequences with regard to cancerduring adolescence. Experiences two years after

diagnosisE Mattsson1,2*, A Ringner1, G Ljungman3 and L von Essen1

1 Department of Public Health and Caring Sciences, Psychosocial Oncology, Uppsala University, Uppsala, Sweden2 The Vardal Institute, Lund University, Lund, Sweden3 Department of Womens and Childrens Health, Paediatric Oncology, Uppsala University, Uppsala, Sweden

* Correspondence to:Department of Public Healthand Caring Sciences,Psychosocial Oncology,Uppsala University, UppsalaScience Park, S-751 83

Uppsala, Sweden.E-mail: [email protected]

Abstract

OBJECTIVES: The purpose was to explore negative and positive consequences of cancer

during adolescence experienced two years after diagnosis.

METHODS: Two years after diagnosis 38 persons, 1521 years old, were asked two

questions over the telephone: What, if anything, is bad for you due to the cancer disease? and

What, if anything, is good for you due to the cancer disease ? The answers were analysed bycontent analysis.

RESULTS: Four categories of negative experiences were identified: a problematic body;

unpleasant thoughts and feelings; outside the circle of friends; and difficulties with schoolwork.

Six categories of positive experiences were identified: a more positive view of life; good self-

esteem; knowledge and experience with regard to disease and hospital care; good relations;

broader perspectives; and material gains.

CONCLUSIONS: Two years after diagnosis those struck by cancer during adolescence

experience not only a number of negative, but also positive, consequences of the cancer disease

and its treatment.

Copyright # 2007 John Wiley & Sons, Ltd.

Keywords: adolescence; cancer; negative; oncology; positive

Background

Childhood cancer can lead to long-term physical[1,2] and psycho-social distress [3] as well aspositive experiences [4].

Amputation and deformities of limbs [5], over-weight [6], scars [6], loss of muscles [6], change inhair colour and quality [5,6], problems with co-ordination [6], as well as being too short [6] are

some aspects of physical distress that may be ofconcern for childhood cancer survivors. As aconsequence of physical limitations survivors maynot be able to attend sports activities to the extentthat they want to [7] or pursue previous careerplans [8]. It has also been reported that survivorsknow their own body better and are more aware oftheir body than before the disease [9].

Survivors may feel overprotected by theirparents [6], lack friends [6], and perceive that thedisease has had a negative impact on theirattainment of social goals [10]. They may alsoexperience stronger and closer bonds to family

[8,9,11,12], that family members value each othermore [8], more attention from parents [6,8],stronger bonds to friends [11] being more socially

active and popular [9], and a heightened level ofsensitivity to friends feelings [8] than before thedisease.

Problems with catching up with school [5] as wellas having become more serious about school [9]have been reported by survivors.

Being more cynical, less confident, and moreintrovert [13] than before the disease has beenreported by survivors who may also experience that

they are stronger [6,12,14], have a greater goalorientation [9], are more mature [6,7,9,13], reflec-tive [8,9], optimistic [9,14], and empathic thanbefore the disease [11].

Survivors may experience valuing [8,11] andappreciating life more [11,13,14] and being moreorientated towards enjoying life today vs worryingabout the future [8,11,14] than before the disease.

In conclusion, those who have survived child-hood cancer may experience negative as well aspositive consequences of cancer and its treatment.However, the aims and designs of the above-mentioned studies do not allow any conclusions

about which bad as well as good consequencesthose struck by cancer during adolescence experi-ence at certain times after diagnosis The purpose

Received: 14 August 2006

Revised: 4 December 2006

Accepted: 16 December 2006

Psycho-Oncology

Psycho-Oncology 16: 10031009 (2007)

Published online 31 January 2007 in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/pon.1162


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of this study is to add some information to theexisting knowledge about consequences of cancerduring adolescence experienced two years afterdiagnosis.

Methods

The study is part of a longitudinal research projectaiming at investigating psychosocial and healtheconomic consequences of cancer during adoles-cence. Sixty-one adolescents have been included inthe project and data have been/are collected at: 48weeks (T1); 6 (T2); 12 (T3), and 18 (T4) monthsand 2 (T5); 3 (T6); and 4 (T7) years after diagnosis.Findings based on data collected at T5 (from June2001 until December 2005) are presented in thisreport.

Participants

Swedish-speaking adolescents (1319 years) newlydiagnosed with cancer or with a recurrence ofcancer treated with chemotherapy, and who werecognitively, emotionally, and physically capable ofparticipating, were recruited (from June 1999 untilOctober 2003), from three of the six Swedishpaediatric oncology centres. Those diagnosed witha recurrence were eligible if they had been disease-free and off treatment for at least one year. A co-ordinating nurse at each centre assessed, in

collaboration with the treating physician, whetherpotential participants were cognitively, emotion-ally, and physically capable of participating. Of 90adolescents newly diagnosed and 10 with arecurrence, 11 were not asked about participationas they did not speak Swedish well enough toparticipate and/or were considered too cognitivelyor physically affected by the disease or by aneurological co-morbidity to participate. Of theremaining 89 eligible adolescents, 65 agreed toparticipate. Of these four did not participate as:two became too ill before they were interviewed

and two were missed due to administrative reasons.Hence, 61 persons were included (56 newlydiagnosed and five with a recurrence). Thirty-eightpersons participated at T5, see Table 1 for apresentation of their characteristics. Reasons forattrition at T5 were: 12 had died, six were misseddue to administrative reasons, and five had with-drawn from the study.

Data collection and procedure

The study was approved by the research ethical

committee at the faculties of medicine at theUniversities of Lund, Umea , and Uppsala. Theco-ordinating nurse at each centre provided eligible

d l d h i i h l d i

weeks after the diagnosis. A few days later thesame nurse asked the adolescent whether he/sheaccepted participation. In case the adolescentwas younger than 18 years, parents were asked toprovide consent on his/her behalf. Adolescents whoagreed to participate were subsequently contactedby telephone by the first author or by anotherdoctoral student. Data were, at all assessments,collected over the telephone. At the end of the

interviews at T1T6, the participant was askedwhether he/she agreed to be contacted for anotherinterview at T2T7. Before the interviews atT2T7, the first author or another doctoralstudent contacted the co-ordinating nurse at therelevant centre to check whether the participantwas alive and considered capable of participating.The first author, who is a trained and experiencedinterviewer, conducted all interviews at T5N 38: All participants were asked the samequestions in the same order. They were first askedto report background data, then to answer the

Short Form 36 (SF-36) and the Hospital Anxietyand Depression Scale (HADS), and finally toanswer the following questions: What, if anything,i b d f d h di ? d Wh

Table 1. A presentation of the participants N 38characteristics

N

Gender

Male 22

Female 16

Age at interview (years)

1516 13

1719 22

2021 3

Mean (SD) 18 (1.7)

Age at diagnosis (years)

1316 20

1719 18

Mean (SD) 16 (1.6)

Diagnoses

CNS tumour N 1

Astrocytoma 1Leukaemia N 12

ALL 8

AML 3

CML 1

Lymphoma N 15

Hodgkin 10

Non-Hodgkin 5

Other solid tumour N 10

Bone sarcoma 5

Soft tissue sarcoma 4

Nasopharyngeal carcinoma 1

On treatment 9

Off treatment 29

Recurrence 6

1004 E. Mattsson et al.


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The interviewer was supportive and asked follow-up questions in order to help the respondents toelucidate their answers. Respondents were asked toanswer according to their present situation. Theanswers were tape-recorded and transcribed verba-tim. Participants received a small gift in apprecia-

tion of their participation.

Data analysis

To ensure that all respondents had an equal chanceto describe negative and positive experiences ofcancer disease, structured open-ended questionswere asked. The answers were analysed withcontent analysis, a method that can be used todraw valid conclusions about a manifest message ina communication by systematic identification of

specified communication characteristics [15]. Theanalysis was performed in the following steps [16]:(1). The first and the second author read thetranscribed text. Words and sentences (recordingunits) containing relevant information regardingthe interview question were identified. (2) The firstand second authors grouped recording units intoexclusive categories reflecting central messages.Recording units in the same category are assumedto have a similar meaning, on the basis of either theprecise meaning of the words or of words sharingthe same connotations. (3) The first, second, andfourth authors defined the boundaries of eachcategory and developed final descriptions of thecentral characteristics of each category. Even if arespondent mentioned a certain recording unitseveral times, it was only counted once in theresults.

Findings

What, if anything, is bad for you due to the cancerdisease?

See Table 2 for a presentation of categories andcategory content in response to the question: What,if anything, is bad for you due to the cancer disease?Seven respondents stated that at present nothingwas bad due to the cancer disease.

A problematic body

The body is not as the respondents would like it tobe. Various physical problems limit them in theirlives: I have had a muscle removed from my leg, soI have problems walking on uneven surfaces.

(Respondent 54, male, 19 years) and And thenpart of my jawbone further down (was removed inan operation), so I cant open my mouth so well.But its damned awkward eating. I have to eat witha fork in a different way. (36, male, 16 years)

Physical problems such as tiredness, feeling awreck, and being in bad shape are described: Imin terrible shape and my legs are too weak. (40,male, 15 years) and Its time to rest for a while. Imknackered all the time. (61, female, 18 years)

Physical problems may lead to problems takingpart in activities: Ive had to put my bicycle awayfor good. I cant be out in the woods and country

as I usually like. (19, male, 18 years)Experiences of having a worse immune system

after the treatment are described: I have had a badimmune system since I got better, then, so I havebeen ill on and off, lots of colds. (61, female, 18years)

Operations have led to scars and a changedappearance: The eyebrow. . .has sunk. It has sunkthere. . .They have taken away the bone behind myear. Yes, I have a woollen hat on all the time. Idont like that. (36, male, 16 years) and In thatcase, its when I get changed and people see my

scars, where I had my operation. (41, female, 17years) The fear of damaging the area that has beenoperated on is described: Im a bit more carefulwith my arm, but they are going to operate fairlysoon and put in a bone. Because Ive got a metalthing in now. (37, male, 17 years)

Unpleasant thoughts and feelings

Difficult memories and unpleasant thoughts andfeelings are described: Yes, and thoughts about thetime when I was ill, that tough time of pain andeverything. (48, female, 16 years) and Yes, there isalways a bit, some kind of worry there. (27, male,21 years)

Worry about being affected by a relapse isdescribed: No, it can sometimes be when you havea cold for a long time, a positive thing mind you,

Table 2. A presentation of categories and category content in response to the question: What, if anything, is bad for you due to thecancer disease? N 38

Category Content n

A problematic body Physical and appearance problems and the consequences of these 25

Unpleasant thoughts and feelings Unpleasant thoughts and feelings, e.g. with regard to relapse and memories from hospital visits and in

connection with questions about the disease

17

Outside the circle of friends Being isolated or having lost touch with friends 5

Difficulties with school work School work takes a lot of effort and energy and extra work is necessary to catch up on missed time 4

1005Positive and negative consequences


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then sometimes, when I dont really get better, Iwant to think: I see, what is it now, why arent Igetting better? (47, male, 20 years) and Itsprobably thoughts mainly. . . that its coming, thatyou can get it back. (48, female, 17 years)

Hospital check-ups can cause concern: Yes, its

mainly the check-ups, I feel a bit nervous beforethem, like. . .but you get a little worried the daysbefore and some butterflies like, but it passes reallyquickly. I dont think about it so much otherwise.Its the week before that I get a few butterflies,like. (50, female, 15 years)

Getting questions about the disease and talkingabout it is experienced as difficult: Yes, I get a fewquestions (about the scars) but I have said that itwas a car accident. (37, male, 17 years) and Thenits also when you start to get back to your sociallife, among friends you dont know so well, who

you only have superficial contact with. When youstart to socialize with them like that it can be a littledifficult sometimes too (to talk about the cancerdisease). (29, female, 19 years)

Outside the circle of friends

The respondents describe that they are isolated andhave lost touch with former friends: Yes, you kindof get a bit isolated. . .from people. . .so thatyou. . .mmm. . . think that they dont kind of wantto know about you any more like. That maybe theycant handle knowing about it or something like

that. So then you stay at home. . .

They kind of justdisappear. They kind of look away when you comelike. (25, female, 18 years) and Right now. . .itsmainly that I havent been able to socialize so muchwith friends as I have wanted. . .Yes, a bit thatI. . .dont really have any great contact with reallyas many friends as I had before I became ill. (12,male, 17 years)

Difficulties with school work

The respondents describe that the school worktakes a lot of effort and energy, work is necessary

to catch up on missed time at school and that their

cognitive ability has deteriorated: Well, someexams here and the odd course where I wasnt,which I missed as I was away that term, like. (55,male, 20 years) and Your concentration, languageget worse, more empty words just to fill in. (53,male, 16 years)

What, if anything, is good for you due to thecancer disease?

See Table 3 for a presentation of categories andcategory content in response to the question: What,if anything, is good for you due to the cancer disease?Two respondents stated that at present they did notexperience anything that was good for them due tothe disease.

A more positive view of life

The respondents describe that they have a differentview of life after the disease. An increasedawareness of death is described: I dont think itsas self-evident that Ill be alive tomorrow as Ithought before. Before I didnt think about it, nowI think more about the fact that you are notimmortal. (28, female, 15 years) and What is goodis that you have found out that you are notSuperman, but that the cancer disease can affectanyone. (47, male, 20 years)

Values and the view of life have changed: I haveanother way of seeing life maybe. And problemsand so on. (29, female, 19 years)

Everyday events are appreciated in another waythan previously: That is Im happy just to besitting here now. . .that is, yes, its mainly thephysical side of things, that is that I think about myown progress and so on in that way. . .Being able towalk and all those common things, like. (62,female, 18 years) and I think like more aboutpositive things like, really appreciate day-to-daylife. . .and that you appreciate all the small thingsmore, I think that is definitely true. (60, male, 18

years)

Table 3. A presentation of categories and category content in response to the question: What, if anything, is good for you due tothe cancer disease? N 38

Category Content n

A more positive view of life Another view of life. An awareness of death means that problems assume other proportions and

that the present and day-to-day life are at the centre of things

19

Good self-esteem An inner change with regard to maturity and development into a responsible person with good

self-esteem, amongst other things regarding the persons own body

16

Knowledge and experience

with regard to disease and

hospital care

Knowledge and experience of disease and a secure relationship with hospital care 14

Good relations Good ability to understand and thus help other people. Values close relations with friends and

other people

11

Broader perspectives New leisure-time activities and occupational plans 4



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Living more in the present is described: I live lifemore than others maybe do. I take advantage of allopportunities. (26, female, 17 years)

Problems that previously gave rise to irritationare now seen in a new way and assume otherproportions: I take everything easier, those trifles

and so on that you could argue with your brothersand sisters and mother about before, I dont careabout them now. (20, female, 17 years) and Andthe same thing if you get a little ulcer in yourmouth. Before you could, you could really go andmoan a whole week about that ulcer (47, male, 20years)

Good self-esteem

Maturity, mental strength, and better self-confidence are described: I would put it like this:I have become more adult in my thoughts, I think.(48, female, 16 years) and You are moremature, maybe you mature more quickly, I dontknow if that is good or bad. It is always goodto be young, as young as you can. . .But I dontthink that it is wrong to have matured. I thinkthat it is, in my opinion it is only positive that youhave matured in advance and so on. (30, male, 18years)

It is easier to focus and prioritize: Well, I takethings a little more seriously than. . .knowthat. . .and then its just as well to do thingsseriously and not go around. . .doing things half-

heartedly. (12, male, 17 years) and Since Mayschool has been more important. (59, male, 16years)

The mental strength is described as finding iteasier to keep in good spirits and a generalexperience of having become stronger: I feelmentally stronger. It is kind of like nothing canstand in my way. I can manage everything. . . (20,female, 17 years)

Positive feelings toward the own body areexpressed: . . .must be that I now have nicer hair.(28, female, 15 years)

Knowledge and experience with regard to disease and

hospital care

Knowledge and experience have been acquired dueto the disease and its treatment: Yes, I have kindof retained a lot from the time when I was ill.Learnt a lot from that time. (44, male, 19 years)

Experiences of a secure relationship with hospi-tal care are described: So I like it when I can go infor check-ups, meet the children, the doctors andthe nurses. (20, female, 17 years)

Good relations

Experiences of being able to help and understandh l b f h di d ib d

terrible time, so I have learnt. . . But it is actually sothat I, I dont really know how to put my finger onit, but I have so much more, so much moreunderstanding or empathy for people who are in abad. . .or worse way or whatever. . . (27, male, 21years)

Experiences of appreciating and valuing familyand friends are described: And I maybe takemore care of my family kind of and those who Ilike and so on. In another way. (26, female, 17years)

Broader perspectives

The disease has resulted in new occupational plansand leisure-time activities: It has made methink. . .that I maybe will become a doctor. (65,male, 17 years) and But I have learnt that youdont need to be so physically active to be able tohave fun. (19, male, 18 years)

Material gains

Material gains as a result of the cancer disease aredescribed: Its some consolation that I also getsocial insurance money. (37, male, 17 years)

Discussion

Along with physical impairment, intrusivethoughts, feelings of alienation, and problemscatching up with school, a majority of therespondents experience that something good hascome out from the disease and its treatment. Thisfinding illustrates, as previously concluded byCordova et al. [17], that research focusing solelyon detection of distress may paint an incompleteand potentially misleading picture of adjustment tocancer.

Several physical and appearance problems werementioned. Some will decline or disappear overtime whereas others, for example, deformities afteroperations, will demand life-long adaptation.

Positive experiences with regard to what thepersons body looked like were described. Thisfinding agrees with previous results indicating thatsurvivors of childhood cancer have a better self-esteem with regard to physical appearance thanhealthy controls [18,19]. However, others haveconcluded that survivors have a lower self-esteemwith regard to physical appearance than healthycontrols [20,21].

As demonstrated by others [57,10,12] thesurvivors reported experiencing unpleasant mem-ories from hospital stays and treatment sessions,

and worries about relapse. They also, as previouslyreported [11,22], experienced that they had a morepositive view of life, and that they were more

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were reported as positive. It can, however,be discussed whether growing up fast duringadolescence is positive. Feeling more mature thanpeers may have long-term social costs, e.g. a feelingof not fitting in with former peer groups [23] andsome respondents reported feeling isolated and

having lost touch with friends. Not only feelingmore mature than peers but also absence fromschool and physical problems limiting the oppor-tunities to take part in activities may cause socialisolation. An increased ability to understand otherpeople was reported. Whether this has a positiveimpact on the respondents relations cannot beconcluded. The findings also demonstrate thatquestions about the disease may cause worry andsome survivors try to hide the disease from newfriends. When asked why, a common explanationwas that they did not want to be treated in a special

way because of the cancer.An increased awareness of ones own mortality

i.e. existential uncertainty was reported as apositive outcome of the disease. Existential un-certainty may be a catalyst for growth possiblyresulting in an increased appreciation of life butmay also cause distress [14].

The respondents positive experiences may beunderstood within the concept of posttraumaticgrowth (PTG) [24] i.e. a positive psychologicalchange experienced as a result of a struggle with ahighly challenging circumstance. Tedeschi andCalhoun [24] have identified three broad categoriesof positive changes: changes in self-perception andinterpersonal relationships and a changed philoso-phy of life. Another possible explanation may bean adaptation process, i.e. a response-shift whichinvolves changed internal standards, values, andthe conceptualisation of e.g. quality of life [25].This adaptation process may also explain findingsdemonstrating that survivors of childhood/adoles-cent cancer do not report a different quality of lifethan comparison groups [26].

Whether the positive changes identified in thisstudy persist at three and four years after diagnosis

and whether these are associated with qualityof life and emotional distress is presently investi-gated within our longitudinal researchproject.

A challenging question for paediatric oncologycare is how to integrate the findings of negative aswell as positive consequences in the care andsupport for adolescents with cancer. Recent re-views of psychosocial outcome after childhoodcancer conclude that most survivors do notexperience more problems than comparison groups[26,27]. However, attention needs to be given to

adolescents who risk or who have already devel-oped psychosocial problems because of theircancer. Psychosocial interventions focusing onh bl h ld b il d i h

Methodological reflections

Methodological strengths of the present study isthat all participants were interviewed two yearsafter diagnosis and the relative homogeneity of thesample with regard to age.

Seven respondents stated that their lives hadreturned to normal and that presently nothing wasbad for them due to the cancer disease. Theseadolescents were all off treatment, with no sign ofrecurrence. Two respondents stated that nothinggood had come out from the disease. Theseadolescents were both on treatment and one hada relapse. Due to an unequal number of respon-dents on vs off treatment no conclusions withregard to what they experience as bad vs good withregard to cancer can be drawn.

Due to geographical reasons interviews wereconducted over the telephone. Our impression isthat most respondents appreciated the relativeanonymity of the telephone contact. This circum-stance together with the fact that they previouslyhad been interviewed four times within the sameproject, at least once by the same interviewer, mayhave increased their willingness to respond to thequestions. This in turn may have contributed to thedetection of a large part of the investigatedphenomena.

In order to minimise the risk of only oneperspective determining how data were categor-ized, at least two persons, the first and the second

authors, both experienced in content analysis, onewith and one without experience of working withinthe field of paediatric oncology, took part in thedata analysis. When labelling categories anddescribing their content we tried to keep close tothe data [29] and to avoid interpretations. In orderto ensure that the categories were clearly distin-guished from each other and were given appro-priate names and descriptions, i.e. reflecting thecontent of the included recording units, an addi-tional assessor, the last author, participated in thispart of the data analysis.

Taken together we consider the findings credibleand worth taking into account when consideringwhat impact, negative and positive, cancerduring adolescence may have two years afterdiagnosis. We consider it reasonable that thefindings can be transferred to similar populationswho have experienced a life-threatening eventduring adolescence.

Conclusion

Adolescents struck by cancer experience a numberof good as well as bad consequences of the diseasetwo years after diagnosis. Physical difficulties,

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friends as well as a more positive outlook on life,increased self-esteem, and better relations areexperienced.

Acknowledgements

The authors thank the participants who agreed to share theirexperiences with us and the Swedish Cancer Society and theSwedish Childrens Cancer Foundation who providedgenerous financial support.

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