Psycho-Oncology Psycho-Oncology 16: 10031009 (2007) Published online 31 January 2007 in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/pon.

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Positive and negative consequences with regard to cancer during adolescence. Experiences two years after diagnosis
r1, G Ljungman3 and L von Essen1 E Mattsson1,2*, A Ringne
1 2

Department of Public Health and Caring Sciences, Psychosocial Oncology, Uppsala University, Uppsala, Sweden rdal Institute, Lund University, Lund, Sweden The Va 3 Department of Womens and Childrens Health, Paediatric Oncology, Uppsala University, Uppsala, Sweden * Correspondence to: Department of Public Health and Caring Sciences, Psychosocial Oncology, Uppsala University, Uppsala Science Park, S-751 83 Uppsala, Sweden. E-mail: elisabet.mattsson@ pubcare.uu.se

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 by content analysis. RESULTS: Four categories of negative experiences were identied: a problematic body; unpleasant thoughts and feelings; outside the circle of friends; and diculties with schoolwork. Six categories of positive experiences were identied: a more positive view of life; good selfesteem; 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

Received: 14 August 2006 Revised: 4 December 2006 Accepted: 16 December 2006

Background
Childhood cancer can lead to long-term physical [1,2] and psycho-social distress [3] as well as positive experiences [4]. Amputation and deformities of limbs [5], overweight [6], scars [6], loss of muscles [6], change in hair colour and quality [5,6], problems with coordination [6], as well as being too short [6] are some aspects of physical distress that may be of concern for childhood cancer survivors. As a consequence of physical limitations survivors may not be able to attend sports activities to the extent that they want to [7] or pursue previous career plans [8]. It has also been reported that survivors know their own body better and are more aware of their body than before the disease [9]. Survivors may feel overprotected by their parents [6], lack friends [6], and perceive that the disease has had a negative impact on their attainment of social goals [10]. They may also experience stronger and closer bonds to family [8,9,11,12], that family members value each other more [8], more attention from parents [6,8], stronger bonds to friends [11], being more socially

active and popular [9], and a heightened level of sensitivity to friends feelings [8] than before the disease. Problems with catching up with school [5] as well as having become more serious about school [9] have been reported by survivors. Being more cynical, less condent, and more introvert [13] than before the disease has been reported by survivors who may also experience that they are stronger [6,12,14], have a greater goal orientation [9], are more mature [6,7,9,13], reective [8,9], optimistic [9,14], and empathic than before the disease [11]. Survivors may experience valuing [8,11] and appreciating life more [11,13,14] and being more orientated towards enjoying life today vs worrying about the future [8,11,14] than before the disease. In conclusion, those who have survived childhood cancer may experience negative as well as positive consequences of cancer and its treatment. However, the aims and designs of the abovementioned studies do not allow any conclusions about which bad as well as good consequences those struck by cancer during adolescence experience at certain times after diagnosis. The purpose

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of this study is to add some information to the existing knowledge about consequences of cancer during adolescence experienced two years after diagnosis.

Table 1. A presentation of the participants N 38 characteristics

N Gender Male Female Age at interview (years) 1516 1719 2021 Mean (SD) Age at diagnosis (years) 1316 1719 Mean (SD) Diagnoses CNS tumour N 1 Astrocytoma Leukaemia N 12 ALL AML CML Lymphoma N 15 Hodgkin Non-Hodgkin Other solid tumour N 10 Bone sarcoma Soft tissue sarcoma Nasopharyngeal carcinoma On treatment Off treatment Recurrence 22 16

Methods
The study is part of a longitudinal research project aiming at investigating psychosocial and health economic consequences of cancer during adolescence. Sixty-one adolescents have been included in the project and data have been/are collected at: 48 weeks (T1); 6 (T2); 12 (T3), and 18 (T4) months and 2 (T5); 3 (T6); and 4 (T7) years after diagnosis. Findings based on data collected at T5 (from June 2001 until December 2005) are presented in this report.
13 22 3 18 (1.7)

20 18 16 (1.6)

1 8 3 1 10 5 5 4 1 9 29 6

Participants
Swedish-speaking adolescents (1319 years) newly diagnosed with cancer or with a recurrence of cancer treated with chemotherapy, and who were cognitively, emotionally, and physically capable of participating, were recruited (from June 1999 until October 2003), from three of the six Swedish paediatric oncology centres. Those diagnosed with a recurrence were eligible if they had been diseasefree and o treatment for at least one year. A coordinating nurse at each centre assessed, in collaboration with the treating physician, whether potential participants were cognitively, emotionally, and physically capable of participating. Of 90 adolescents newly diagnosed and 10 with a recurrence, 11 were not asked about participation as they did not speak Swedish well enough to participate and/or were considered too cognitively or physically aected by the disease or by a neurological co-morbidity to participate. Of the remaining 89 eligible adolescents, 65 agreed to participate. 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 newly diagnosed and ve with a recurrence). Thirty-eight persons participated at T5, see Table 1 for a presentation of their characteristics. Reasons for attrition at T5 were: 12 had died, six were missed due to administrative reasons, and ve had withdrawn from the study.

Data collection and procedure

The study was approved by the research ethical committee at the faculties of medicine at the , and Uppsala. The Universities of Lund, Umea co-ordinating nurse at each centre provided eligible adolescents and their parents with oral and written information about the study approximately three
Copyright # 2007 John Wiley & Sons, Ltd.

weeks after the diagnosis. A few days later the same nurse asked the adolescent whether he/she accepted participation. In case the adolescent was younger than 18 years, parents were asked to provide consent on his/her behalf. Adolescents who agreed to participate were subsequently contacted by telephone by the rst author or by another doctoral student. Data were, at all assessments, collected over the telephone. At the end of the interviews at T1T6, the participant was asked whether he/she agreed to be contacted for another interview at T2T7. Before the interviews at T2T7, the rst author or another doctoral student contacted the co-ordinating nurse at the relevant centre to check whether the participant was alive and considered capable of participating. The rst author, who is a trained and experienced interviewer, conducted all interviews at T5 N 38: All participants were asked the same questions in the same order. They were rst asked to report background data, then to answer the Short Form 36 (SF-36) and the Hospital Anxiety and Depression Scale (HADS), and nally to answer the following questions: 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?
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The interviewer was supportive and asked followup questions in order to help the respondents to elucidate their answers. Respondents were asked to answer according to their present situation. The answers were tape-recorded and transcribed verbatim. Participants received a small gift in appreciation of their participation.

A problematic body

Data analysis
To ensure that all respondents had an equal chance to describe negative and positive experiences of cancer disease, structured open-ended questions were asked. The answers were analysed with content analysis, a method that can be used to draw valid conclusions about a manifest message in a communication by systematic identication of specied communication characteristics [15]. The analysis was performed in the following steps [16]: (1). The rst and the second author read the transcribed text. Words and sentences (recording units) containing relevant information regarding the interview question were identied. (2) The rst and second authors grouped recording units into exclusive categories reecting central messages. Recording units in the same category are assumed to have a similar meaning, on the basis of either the precise meaning of the words or of words sharing the same connotations. (3) The rst, second, and fourth authors dened the boundaries of each category and developed nal descriptions of the central characteristics of each category. Even if a respondent mentioned a certain recording unit several times, it was only counted once in the results.

The body is not as the respondents would like it to be. Various physical problems limit them in their lives: I have had a muscle removed from my leg, so I have problems walking on uneven surfaces. (Respondent 54, male, 19 years) and And then part of my jawbone further down (was removed in an operation), so I cant open my mouth so well. But its damned awkward eating. I have to eat with a fork in a dierent way. (36, male, 16 years) Physical problems such as tiredness, feeling a wreck, and being in bad shape are described: Im in terrible shape and my legs are too weak. (40, male, 15 years) and Its time to rest for a while. Im knackered all the time. (61, female, 18 years) Physical problems may lead to problems taking part in activities: Ive had to put my bicycle away for 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 bad immune system since I got better, then, so I have been ill on and o, lots of colds. (61, female, 18 years) Operations have led to scars and a changed appearance: The eyebrow. . .has sunk. It has sunk there. . .They have taken away the bone behind my ear. Yes, I have a woollen hat on all the time. I dont like that. (36, male, 16 years) and In that case, its when I get changed and people see my scars, where I had my operation. (41, female, 17 years) The fear of damaging the area that has been operated on is described: Im a bit more careful with my arm, but they are going to operate fairly soon and put in a bone. Because Ive got a metal thing in now. (37, male, 17 years)
Unpleasant thoughts and feelings

Findings What, if anything, is bad for you due to the cancer disease?
See Table 2 for a presentation of categories and category content in response to the question: What, if anything, is bad for you due to the cancer disease? Seven respondents stated that at present nothing was bad due to the cancer disease.

Dicult memories and unpleasant thoughts and feelings are described: Yes, and thoughts about the time when I was ill, that tough time of pain and everything. (48, female, 16 years) and Yes, there is always a bit, some kind of worry there. (27, male, 21 years) Worry about being aected by a relapse is described: No, it can sometimes be when you have a 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 the cancer disease? N 38
Category A problematic body Unpleasant thoughts and feelings Outside the circle of friends Difficulties with school work Content Physical and appearance problems and the consequences of these Unpleasant thoughts and feelings, e.g. with regard to relapse and memories from hospital visits and in connection with questions about the disease Being isolated or having lost touch with friends School work takes a lot of effort and energy and extra work is necessary to catch up on missed time at school n 25 17 5 4

Copyright # 2007 John Wiley & Sons, Ltd.

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then sometimes, when I dont really get better, I want to think: I see, what is it now, why arent I getting better? (47, male, 20 years) and Its probably thoughts mainly. . . that its coming, that you 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 before them, like. . .but you get a little worried the days before and some butteries like, but it passes really quickly. I dont think about it so much otherwise. Its the week before that I get a few butteries, like. (50, female, 15 years) Getting questions about the disease and talking about it is experienced as dicult: Yes, I get a few questions (about the scars) but I have said that it was a car accident. (37, male, 17 years) and Then its also when you start to get back to your social life, among friends you dont know so well, who you only have supercial contact with. When you start to socialize with them like that it can be a little dicult sometimes too (to talk about the cancer disease). (29, female, 19 years)
Outside the circle of friends

cognitive ability has deteriorated: Well, some exams 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, language get worse, more empty words just to ll in. (53, male, 16 years)

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

See Table 3 for a presentation of categories and category 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 not experience anything that was good for them due to the disease.
A more positive view of life

The respondents describe that they are isolated and have lost touch with former friends: Yes, you kind of get a bit isolated. . .from people. . .so that you. . .mmm. . . think that they dont kind of want to know about you any more like. That maybe they cant handle knowing about it or something like that. So then you stay at home. . .They kind of just disappear. They kind of look away when you come like. (25, female, 18 years) and Right now. . .its mainly that I havent been able to socialize so much with friends as I have wanted. . .Yes, a bit that I. . .dont really have any great contact with really as many friends as I had before I became ill. (12, male, 17 years)
Difficulties with school work

The respondents describe that the school work takes a lot of eort and energy, work is necessary to catch up on missed time at school and that their

The respondents describe that they have a dierent view of life after the disease. An increased awareness of death is described: I dont think its as self-evident that Ill be alive tomorrow as I thought before. Before I didnt think about it, now I think more about the fact that you are not immortal. (28, female, 15 years) and What is good is that you have found out that you are not Superman, but that the cancer disease can aect anyone. (47, male, 20 years) Values and the view of life have changed: I have another way of seeing life maybe. And problems and so on. (29, female, 19 years) Everyday events are appreciated in another way than previously: That is Im happy just to be sitting here now. . .that is, yes, its mainly the physical side of things, that is that I think about my own progress and so on in that way. . .Being able to walk and all those common things, like. (62, female, 18 years) and I think like more about positive things like, really appreciate day-to-day life. . .and that you appreciate all the small things more, I think that is denitely 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 to the cancer disease? N 38
Category A more positive view of life Good self-esteem Knowledge and experience with regard to disease and hospital care Good relations Broader perspectives Material gains Content 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 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 Knowledge and experience of disease and a secure relationship with hospital care n 19 16 14

Good ability to understand and thus help other people. Values close relations with friends and other people New leisure-time activities and occupational plans New things, social insurance, etc.

11 4 2

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Living more in the present is described: I live life more than others maybe do. I take advantage of all opportunities. (26, female, 17 years) Problems that previously gave rise to irritation are now seen in a new way and assume other proportions: I take everything easier, those tries and so on that you could argue with your brothers and sisters and mother about before, I dont care about them now. (20, female, 17 years) and And the same thing if you get a little ulcer in your mouth. Before you could, you could really go and moan a whole week about that ulcer (47, male, 20 years)
Good self-esteem

terrible time, so I have learnt. . . But it is actually so that I, I dont really know how to put my nger on it, but I have so much more, so much more understanding or empathy for people who are in a bad. . .or worse way or whatever. . . (27, male, 21 years) Experiences of appreciating and valuing family and friends are described: And I maybe take more care of my family kind of and those who I like and so on. In another way. (26, female, 17 years)
Broader perspectives

Maturity, mental strength, and better selfcondence 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 more mature, maybe you mature more quickly, I dont know if that is good or bad. It is always good to be young, as young as you can. . .But I dont think that it is wrong to have matured. I think that it is, in my opinion it is only positive that you have matured in advance and so on. (30, male, 18 years) It is easier to focus and prioritize: Well, I take things a little more seriously than. . .know that. . .and then its just as well to do things seriously and not go around. . .doing things halfheartedly. (12, male, 17 years) and Since May school has been more important. (59, male, 16 years) The mental strength is described as nding it easier to keep in good spirits and a general experience of having become stronger: I feel mentally stronger. It is kind of like nothing can stand in my way. I can manage everything. . . (20, female, 17 years) Positive feelings toward the own body are expressed: . . .must be that I now have nicer hair. (28, female, 15 years)
Knowledge and experience with regard to disease and hospital care

The disease has resulted in new occupational plans and leisure-time activities: It has made me think. . .that I maybe will become a doctor. (65, male, 17 years) and But I have learnt that you dont need to be so physically active to be able to have fun. (19, male, 18 years)
Material gains

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

Discussion
Along with physical impairment, intrusive thoughts, feelings of alienation, and problems catching up with school, a majority of the respondents experience that something good has come out from the disease and its treatment. This nding illustrates, as previously concluded by Cordova et al. [17], that research focusing solely on detection of distress may paint an incomplete and potentially misleading picture of adjustment to cancer. Several physical and appearance problems were mentioned. Some will decline or disappear over time whereas others, for example, deformities after operations, will demand life-long adaptation. Positive experiences with regard to what the persons body looked like were described. This nding agrees with previous results indicating that survivors of childhood cancer have a better selfesteem with regard to physical appearance than healthy controls [18,19]. However, others have concluded that survivors have a lower self-esteem with regard to physical appearance than healthy controls [20,21]. As demonstrated by others [57,10,12] the survivors reported experiencing unpleasant memories from hospital stays and treatment sessions, and worries about relapse. They also, as previously reported [11,22], experienced that they had a more positive view of life, and that they were more mature and responsible than before the disease as well as in comparison with peers. These changes
Psycho-Oncology 16: 10031009 (2007) DOI: 10.1002/pon

Knowledge and experience have been acquired due to the disease and its treatment: Yes, I have kind of 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 hospital care are described: So I like it when I can go in for check-ups, meet the children, the doctors and the nurses. (20, female, 17 years)
Good relations

Experiences of being able to help and understand other people better after the disease are described: When I hear others say that: I have had such a
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were reported as positive. It can, however, be discussed whether growing up fast during adolescence is positive. Feeling more mature than peers may have long-term social costs, e.g. a feeling of not tting in with former peer groups [23] and some respondents reported feeling isolated and having lost touch with friends. Not only feeling more mature than peers but also absence from school and physical problems limiting the opportunities to take part in activities may cause social isolation. An increased ability to understand other people was reported. Whether this has a positive impact on the respondents relations cannot be concluded. The ndings also demonstrate that questions about the disease may cause worry and some survivors try to hide the disease from new friends. When asked why, a common explanation was 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 a positive outcome of the disease. Existential uncertainty may be a catalyst for growth possibly resulting in an increased appreciation of life but may also cause distress [14]. The respondents positive experiences may be understood within the concept of posttraumatic growth (PTG) [24] i.e. a positive psychological change experienced as a result of a struggle with a highly challenging circumstance. Tedeschi and Calhoun [24] have identied three broad categories of positive changes: changes in self-perception and interpersonal relationships and a changed philosophy of life. Another possible explanation may be an adaptation process, i.e. a response-shift which involves changed internal standards, values, and the conceptualisation of e.g. quality of life [25]. This adaptation process may also explain ndings demonstrating that survivors of childhood/adolescent cancer do not report a dierent quality of life than comparison groups [26]. Whether the positive changes identied in this study persist at three and four years after diagnosis and whether these are associated with quality of life and emotional distress is presently investigated within our longitudinal research project. A challenging question for paediatric oncology care is how to integrate the ndings of negative as well as positive consequences in the care and support for adolescents with cancer. Recent reviews of psychosocial outcome after childhood cancer conclude that most survivors do not experience more problems than comparison groups [26,27]. However, attention needs to be given to adolescents who risk or who have already developed psychosocial problems because of their cancer. Psychosocial interventions focusing on these problems should be tailored in a way that enhances positive outcomes [28].
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Methodological reflections
Methodological strengths of the present study is that all participants were interviewed two years after diagnosis and the relative homogeneity of the sample with regard to age. Seven respondents stated that their lives had returned to normal and that presently nothing was bad for them due to the cancer disease. These adolescents were all o treatment, with no sign of recurrence. Two respondents stated that nothing good had come out from the disease. These adolescents were both on treatment and one had a relapse. Due to an unequal number of respondents on vs o treatment no conclusions with regard to what they experience as bad vs good with regard to cancer can be drawn. Due to geographical reasons interviews were conducted over the telephone. Our impression is that most respondents appreciated the relative anonymity of the telephone contact. This circumstance together with the fact that they previously had been interviewed four times within the same project, at least once by the same interviewer, may have increased their willingness to respond to the questions. This in turn may have contributed to the detection of a large part of the investigated phenomena. In order to minimise the risk of only one perspective determining how data were categorized, at least two persons, the rst and the second authors, both experienced in content analysis, one with and one without experience of working within the eld of paediatric oncology, took part in the data analysis. When labelling categories and describing their content we tried to keep close to the data [29] and to avoid interpretations. In order to ensure that the categories were clearly distinguished from each other and were given appropriate names and descriptions, i.e. reecting the content of the included recording units, an additional assessor, the last author, participated in this part of the data analysis. Taken together we consider the ndings credible and worth taking into account when considering what impact, negative and positive, cancer during adolescence may have two years after diagnosis. We consider it reasonable that the ndings can be transferred to similar populations who have experienced a life-threatening event during adolescence.

Conclusion
Adolescents struck by cancer experience a number of good as well as bad consequences of the disease two years after diagnosis. Physical diculties, unpleasant thoughts about disease and treatment, problems catching up with school, missing former
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friends as well as a more positive outlook on life, increased self-esteem, and better relations are experienced.

Acknowledgements
The authors thank the participants who agreed to share their experiences with us and the Swedish Cancer Society and the Swedish Childrens Cancer Foundation who provided generous nancial support.

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Psycho-Oncology 16: 10031009 (2007) DOI: 10.1002/pon