Psychological Support

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contents

23.1 introduction. . . . 365

23.2 From diagnosis to aftercare .. . . . 365

. 23 2 1. Diagnosis. . . . 366

23.3 Pediatric-, adolescent- or adult-Based care?. . 367

. 23 3 1. When.Treatment.Ends. . . . 367

. 23 3 2. Follow-up.Care.. . . . 367

23.4 long-term issues. . . . 368

. 23 4 1. Body.Image.. . . . 368

. 23 4 2. Fertility.. . . . 368

. 23 4 3.. Employment. . . . 369

23.5 adolescence to young adulthood – the developmental transition. . . . 369

. 23 5 1. Unique.Challenges.of.Adolescence.. . . 369

. 23 5 1 1. Positive.Body.Image. . . . 369

. 23 5 1 2. .Sense.of.Identity.and.. Independence. . . . 369

. 23 5 1 3. Sexual.Identity.. . . . 370

. 23 5 1 4.. Future.Career.Goals.. . . . 370

23.6 treatment approaches to Meet the developmental challenges of adolescents and young adults . . . . 370

. 23 6 1. Impact.Cancer,.a.Transition.Model. . . . 371

23.7 conclusions.. . . . 372

references . . . .372

23.1 introduction

Diagnosis of cancer during adolescence is especially challenging. Typically, adolescence is a time of major freedom and increasing independence from parents and family. A diagnosis of cancer challenges adolescents’ views about their invulnerability, threatens their self-esteem, and compromises all aspects of quality of life. Treatments are associated with major changes in physical appearance and physical energy. Long-term educational goals can be seriously compromised by hospitalization and health complications. These obstacles and roadblocks may derail normal adolescent development and interfere with transition into adulthood. These potential difficulties merit the establish- ment of innovative specialized programs to ensure treatment management and create a seamless transition from adolescence to young adulthood. This chap- ter will highlight the challenges of transitioning from diagnosis to long-term survivorship, pediatric to adult medical care, and psychological and economic dependence to independence. Due to limited space, we will be unable to cover issues relating to end-stage disease in adolescence, which is covered in Chap. 24. From empirically based studies and descriptive articles, those psychological approaches that have been, in our experience, the most useful will be discussed.

23.2 From diagnosis to aftercare

The cancer experience has been likened to a journey, or progression through the seasons of the year. The focus following diagnosis is on acquisition of informa-

Psychological Support

Christine.Eiser.•.Aura.Kuperberg

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tion, acute care, and management. This is followed by an extended period from the end of intensive treatment through to a period of watchful waiting and fear of relapse, then a period of permanent survival with concern for adverse late effects, and finally an ultimate resolution. Obviously, the journey is long, if not a life- time, and rarely is it fully completed.

23.2.1 diagnosis

Any negative life event creates changes that can be stressful and that require adaptation on the part of the individual. The initial period after such an event is critical, and the inability to cope during that period can be a precipitating factor in the development of long-term problems. Behavior patterns exhibited during this period are likely to become fixed and may shape behavior during subsequent phases [1], suggest- ing the benefits of an early and ongoing rehabilitation program [2]. Kaplan et al. [3] have emphasized the importance of developing appropriate “psychosocial tools” during the initial period, which can be utilized throughout the treatment course and beyond. Ross [4]

emphasizes the need to be aware of the critical phases through which the adolescent cancer patient and family pass, and to determine the nature of the intervention based on a clear understanding of those phases.

Efforts directed at mitigating developmental dis- ruption and increasing quality of life must begin at the time of diagnosis [2]. Normalcy and belonging to a peer group is paramount, yet the onset of illness and treatment side effects make the adolescent patient feel and look different. The loss of normalcy in terms of appearance, body integrity, and daily activities is often of greater concern for the adolescent than the potential loss of life [5].

A sense of control plays a part in adolescent development, and has implications for treatment adherence [6–8]. Giving adolescents options and choices is one way to regain a sense of control for young patients and foster the adolescent’s cooperation, and this can best be achieved through a concerted effort by staff and family. To enhance a patient’s sense of mastery and sense of control, List et al. [2] suggest education regarding the illness, simple and understandable explana- tions about the cancer experience, written directions

on treatment procedures and medical schedules [6–8], and teaching coping strategies, such as guided imag- ery.It is inevitable that adolescents will have much more difficulty accepting a diagnosis of cancer compared with children. Their greater cognitive competence, knowledge, and experience mean that they are likely to be much more aware of the potential seriousness of the disease. Adolescents typically see themselves as invul- nerable [9], and knowledge of a life-threatening disease is therefore extremely challenging.

In addition to accepting the diagnosis, adolescents may be expected to make decisions about treatment or participation in clinical trials. These are very difficult decisions for anyone. Adolescents may take into account different considerations compared with those of adults. For example, in making decisions about amputations or limb salvage, adults may focus on long- term issues, body image, and potential impact on interpersonal relationships. Adolescents may put more weight on whether they can continue contact sports.

In the longer term, they may come to regret this deci- sion.

Social support has been linked to positive adjustment [10, 11], and reduced feelings of uncertainty [11, 12] found adolescents able to adapt to cancer in the context of strong family and social support. Yet adolescent patients can experience emotional isolation both within their families [5] and from their peers [13].

Adolescents report that parents expect to see them as strong, upbeat, and pleasant [14]. Social isolation is a major concern of adolescents, and peer reactions leave many adolescents feeling very lonely [14]. In an effort to counteract isolation, Haluska et al. [15] suggest that the medical staff allow the adolescent patient every opportunity to maintain social networks of friends and family by encouraging visits, providing social opportunities in the hospital, and emphasizing the importance of attending school. However, not all sources of support are perceived as positive. Manne and Miller [16] suggest that mother-adolescent conflict be an appropriate target for psychosocial interventions.

Other factors influence adjustment and a positive transition through the treatment course. A sense of hopefulness [17, 18] and maintenance of self-esteem

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[10] have been identified as “protecting mechanisms”

and relevant in the care for adolescents during treatment [10]. Developing care strategies to promote self- esteem and hope includes identifying the patient’s positive abilities, giving genuine and honest feedback [10], and encouraging certain self-initiated behaviors [18]. Haase [19] found that resilient adolescents fre- quently use the defensive coping strategy of denial in dealing with their cancer experience. Although denial plays an important role in adjusting to a cancer diagnosis, if left unchecked it may have a long-term adverse effect.

23.3 Pediatric-, adolescent- or adult-Based care?

Typically, adolescents are cared for in pediatric wards, although some may be admitted to adult care units.

Neither is optimal. On pediatric units, adolescents may be disturbed by the noise and crying of younger children, and they usually find the toys and books unsuitable. On the other hand, adolescents on adult wards can be highly distressed, finding little to talk about with elderly and sometimes dying patients [20].

Teenagers typically want personal space to play music or use personal computers, for example, and an opportunity to be with others of the same age.

The solution is provision of adolescent units wher- ever possible. In the United Kingdom, the first Teenage Cancer Unit opened in 1990 and has been followed by similar units in major oncology centers. The advantages of such units include specialist medical care of cancers that typically affect this age group: acute leuke- mias, Hodgkin and non-Hodgkin lymphomas, brain tumors, sarcomas, and germ-cell tumors. In addition, the medical staff is specially trained to deal with the social and psychological consequences of cancer for this age group. The units seem to be well received by patients [21]. Advantages for patients include contact with specialist nurses who are not only experts in cancer care but also in touch with teenage issues, opportunities to share experiences with similar others, involve- ment of parents, and opportunities to take part in activities and education. More formally, there is little evidence that survival rates are improved. However,

given the excellent rates of survival in conditions such as Hodgkin lymphoma, it is “unnecessarily narrow to consider this as exclusive justification for Units”

[22].

23.3.1 When treatment ends

Given the frequent report of anxiety, fear, and feelings of vulnerability, MacLean et al. [23] suggest psychological care target patients as they transition from on- treatment to off-treatment. The authors suggest imple- menting a formal conference to address unfinished business, accurately assess relapse, and administer a quality of life assessment to determine an intervention plan that will enhance long-term psychological adjustment. This transition is covered in Chap. 30.

23.3.2 Follow-up care

As described in Chap. 30, many survivors experience physical or psychological late effects depending on treatment received. Follow-up care is therefore considered essential for many survivors, with the aim to identify problems early and provide appropriate intervention, as well as to inform them about risks to future health.

Although the nature of the problems survivors face is increasingly well described, there is as yet no con- sensus on how best to provide long-term care. Proce- dures are far from standard across centers [24, 25]. The results from a postal questionnaire in the United States concluded that few programs exist that focus on long- term care for survivors into adulthood [24]. Indeed, only 44% of responding institutions had mechanisms in place for continued care of adult survivors. The vast majority employed pediatric staff in the follow-up care, and only 13% of programs involved adult oncologists.

According to the survey respondents, the major barri- ers to providing long-term follow-up care were:

patient’s uncertainty about the need for follow-up;

unwillingness to be followed up; and difficulties locat- ing adult survivors. In a similar study in the United Kingdom, Taylor et al. [25] also found large disparities in care between treatment centers.

Thus, the evidence suggests that follow-up is far from systematic and more needs to be done to assess

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how long-term care should be provided to this patient group, as described in Chaps. 31 and 32. Taylor et al.

(2004) advise that a subset of survivors may benefit from permanent transfer to primary care, whereas a proportion of patients with complex needs should receive specialist-led hospital-based care in an adult environment. Likewise, strategies have been proposed for the development of follow-up programs [26]. For example, telephone or postal surveys may be adequate for those who receive low-risk chemotherapy or sur- gery alone. Rosen [27] argues that adult clinics for adolescents and young adults with cancer have several major benefits. First, the transition to adult care can provide a positive and optimistic sense of future that indicates life after a serious illness; a sense of gradua- tion. Second, adult clinics can provide a more suitable environment in which to discuss age-relevant health information, such as contraception, sexuality, and fertility. Third, given the importance placed on follow-up care for cancer survivors, an adult environment can avoid having the young adult cancer survivors feeling that they have outgrown the service provided by pediatricians and consequently become lost to follow-up.

Several authors have suggested multidisciplinary clinics that combine the skills of pediatricians, adult oncologists, and nursing staff to provide comprehensive care for the range of medical issues survivorship can entail [23, 28].

In terms of psychological support, follow-up clinics need to offer reassurance as well as advice and education [29]. Traditional health promotion advice is needed regarding the risks associated with smoking or sunbathing, for example. In addition, these young people face additional risks to their health depending on past treatment. Problems that require some psychological intervention include those related to weight- gain following treatment, infertility, or reduced cardiac function. As more is learned about possible late effects, questions need to be asked about how such risk information is best communicated to survivors. They have a right to know about such risks, but care must be taken not to create unnecessary anxiety. Where possible, information about risk needs to be associated with information about what the individuals can realisti- cally do to ensure their own health. Some examples are given in the following section.

23.4 long-term issues 23.4.1 Body image

Many survivors are at risk of obesity, low bone density, and have poor body image. A healthy lifestyle involv- ing exercise may be a first step toward minimizing these late effects of cancer. Participation in sports activities among survivors seems to be similar to the general population. Survivors who participate in sports were more likely to report having access to health insurance and medical care by a local physician, although there were no differences based on age, race, socioeconomic status, body mass index, time since diagnosis, length of treatment, and time since completed treatment [30]. Males were found to exercise more than females, a difference typically also found in the general population.

Survivors who are overweight need particularly sen- sitive counseling and motivation to take part in regular activity. As these problems are recognized in the general community, several community-based programs are being reported. It is likely that similar approaches will also be beneficial for survivors of cancer.

23.4.2 Fertility

Infertility is potentially a side effect, especially for those treated with radiotherapy below the diaphragm or chemotherapy with alkylating agents, as covered in Chap. 27 and considered in Chaps. 24, 25, and 30 . It is established in other settings that infertility can cause considerable distress, although individuals differ sub- stantially in their psychological reactions [31]. Infor- mation about possible infertility and its impact on psychological function in cancer survivors was investigated by Green et al. [32]. Interviews conducted with 15 male survivors suggested that survivors varied greatly in how prepared they were for such information, with some being well prepared while others regarded it as “a bolt from the blue.” The most common emotional response was anger. However, emotional responses varied greatly.

Three coping styles were identified. A first group wanted no further counseling and chose to get on with their lives as best as possible. A second group included those who were prepared to think about infertility to a

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limited degree. This group reflected at length about the information but chose not to discuss the matter further with friends or medical staff. The third group wanted more information (about alternative routes to parent- hood) and engaged important others in discussions about what to do.

Of significance is the finding of great and unpredict- able variability in reactions that makes it difficult to rec- ommend a single approach to information giving and counseling about infertility in the clinic. Undoubtedly there is a certain amount to be learned from the experience of those working in other infertility clinics, and it is likely that the importance of this issue will become greater as greater numbers of survivors reach adult life.

23.4.3 employment

Survivors of childhood cancer report prejudice in the workplace and indeed may be less likely to be employed than peers or healthy siblings [33]. Particularly for those with physical or cognitive disability, realistic vocational guidance is essential. In addition, other research is needed to determine survivors’ attitudes to work and employment.

23.5 adolescence to young adulthood – the developmental transition 23.5.1 Unique challenges of adolescence Adolescents with cancer are faced with several interre- lated developmental challenges that impact transition to adulthood and must be considered in the provision of psychological care. These include: (1) developing a positive body image, (2) forming a sense of identity and achieving economic and emotional independence, (3) developing a firm sexual identity, and (4) attaining a clear goal orientation with regard to a future career [14].

23.5.1.1 Positive Body image

Many adolescents report that the treatment is worse than the disease [1], and the bodily changes that accompany chemotherapy and radiation make it more difficult to develop a positive body image [34]. While

on treatment, satisfaction with body image was found to be related to gender, age, education level, and the frequency of changes in appearance caused by chemotherapy [35]. The effect on physical appearance is especially disruptive for females [36]. Pendley et al. [37]

examined body image in adolescents who completed treatment and found that adolescents who had been off treatment longer reported more negative body image perceptions. Findings suggest that body image concerns do not develop until several years after treatment termination. Persistent negative perceptions may result in a loss of sex appeal and virility [34]. A dis- torted body image, whether based on reality or not, produces feelings of inferiority, low self-esteem, and incompetence. These findings suggest that more atten- tion should be paid to adolescents who perceive changes in their appearance and help them develop a positive body image [35].

23.5.1.2 Sense of identity and independence During adolescence, individuals struggle to separate and formulate their own unique identity [38]. Identity formation among adolescent survivors of childhood cancer has been found to differ from that of healthy adolescents, with a greater frequency of survivors than healthy peers falling within foreclosed identity status and tendency to foreclose prematurely on a career choice [39, 40]. Factors associated with the foreclosed identity status include a cancer diagnosis, symptoms of posttraumatic stress disorder, and family functioning characterized by greater levels of conflict. The tendency to foreclose may be adaptive in adolescent cancer survivors by serving a protective function in assisting survivors to cope with the stressors of the cancer experience [39]. Counseling is recommended to mitigate the stressors of cancer and its treatment [40].

The onset of illness threatens attempts to establish independence [41] with imposed dependence on family and medical staff, compliance to treatment, and loss of control [2]. Emotional separation from parents is often complicated by parental overprotectiveness [14]. Fur- thermore, the new and unfamiliar role as “patient”

increases dependence and can lead to a sense of helpless- ness at the very time when normal development involves breaking away and establishing independence [36].

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Cancer necessarily restricts the freedom normally typical of adolescence [42]. Adolescent cancer patients can be resentful about the sudden restrictions imposed upon them, which are seen as symbolic of the perceived lack of control over their own lives and their dependent role [43].

23.5.1.3 Sexual identity

The course of normal sexual development is also likely to be affected by a diagnosis of cancer during adolescence. The inherent lack of privacy that accompanies the illness is likely to inhibit or delay social exploration, while overprotective parents may limit the time spent away from the family. At the same time, there may be fewer peer contacts in the school environment and fewer opportunities for social exploration. Koocher et al. [41], for example, found that adolescent girls with physical impairments had more difficulty establishing intimate relationships than similar girls without impairments. Concerns about late effects from the disease and treatment are superimposed on age-related issues such as establishing intimate relationships, defining physical attractiveness, and preparing for marriage and family [14].

23.5.1.4 Future career goals

The development of future goals and clear objectives is influenced by the way the adolescent feels about him or herself, about the physical limitations brought about by the illness, and by ongoing socialization and peer group experiences. The constant need to “catch-up” in school and the general unpredictability of the future can frus- trate and demoralize the adolescent cancer patient. The sense of uncertainty and ambiguity about the future and the threat of recurrence of the disease may taint the future outlook [14].

23.6 treatment approaches to Meet the developmental challenges of adolescents and young adults

Various forms of psychosocial support have been suggested in working with adolescents and young adults

as they attempt to cope with cancer, including individual therapy, camps, cognitive behavioral techniques, and support groups. Given the significance of peer relationships and the reality that a cancer diagnosis may lead to physical and emotional isolation, peer- based interventions can play an important role in psychological adjustment. Therapeutic group work appears to have several advantages over individual psychotherapy. Group interaction allows members to feel that they give, as well as receive, which can serve to enhance self-esteem and lessen feelings of powerless- ness. The experience of sharing with others provides a sense of community and reduces the sense of isolation so common among cancer patients. However, most intervention studies have examined primarily group treatment for adult cancer patients, concluding in general that such group interventions can be effective [42].

Little empirically based knowledge is available regarding adolescent and young adult survivors and the benefits of group treatment models [43a] Moreover, encouraging adolescent cancer patients to participate in a group program is a major challenge [5].

There is limited evidence that individual counseling may be appropriate in some cases. Cain et al. [44]

studied adult female cancer patients who attended psy- choeducational counseling sessions over a 6-month period. After the 6-month period, the patients were significantly less depressed and anxious, had more knowledge about their illness, developed better relationships with their caregivers, experienced fewer sexual difficulties, and participated in more leisure activities.

The psychosocial needs of adolescents with cancer can be met through a variety of support programs focusing on school reintegration, learning coping methods such as relaxation and hypnosis techniques, and participating in peer-based programs. Such programs should be offered routinely rather than in a response to a crisis. While there is a need for crisis- initiated interventions, such programs are a last resort and tend to foster stigmatization, alter effective treatment, and discourage self-help [45].

Studies on the effectiveness of camping programs suggest that this type of program can enhance a cancer patient’s self-esteem as well as improve family commu- nications [46]. This line of research was extended in

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two studies of adolescents with cancer who participated in a summer camp [47, 48]. These researchers found that camp participation improved adolescents’

knowledge about cancer, even in the absence of formal educational programs. They also found that relationships formed at the camp were maintained after the camp itself. Their key finding was the shared experience with other camp participants; it was valuable in bringing about better quality peer relationships and a higher degree of knowledge about the medical and psychological aspects of cancer.

Most studies on group treatment for adolescents with chronic illness are descriptive, but in general, show that group interventions can be effective. The opportunity to actively participate and to have recipro- cal relationships can be a welcome respite from the nonreciprocal and passive roles patients play in the typical medical environment [49]. This is a particularly significant issue for adolescents. Ross [4] observed that adolescents who associated with others having similar medical conditions were more successful in developing positive self-images. Moreover, the use of groups for adolescents can give them an opportunity for peer reinforcement not otherwise available [50]. Given the fact that the adolescents’ mode of coping is often associated with their support from a peer group, organized but informal groups can play an important role in this area.

23.6.1 impact cancer, a transition Model For over 16 years, the Teen Impact program – housed at Children’s Hospital Los Angeles – has served thou- sands of adolescents and young adults on and off cancer treatment throughout the Southern California area [50]. The program is appropriate both for those on treatment as well as survivors.

Capitalizing on the adolescent need for peer relationships and groups, Teen Impact has developed a comprehensive multidimensional psychosocial treatment model that provides age-appropriate activities such as support groups, 3-day retreats, and special events to help the adolescent navigate the obstacles of illness and treatment.

To assist with the transition into young adulthood, the program has established a three-tiered transition

model of care for adolescents across the developmental path. To incorporate the issue of transition very early, a support group was developed for patients in the latency age range, 9 to 11 years. Conducted con- currently, the adolescent group serves patients between 12 and 22 years of age. Trained mentors, 18 to 22 years of age, who are former Teen Impact participants, attend adolescent group meetings to help younger members, recruit new patients, and assist with program design and supportive activities on the 3-day retreats. Long-term young adult survivors serve as counselors and cocounselors on the retreats. The con- cept of reciprocity, giving rather than always receiving, plays a major role in helping adolescents with cancer begin to define who they are and where they are going – important developmental tasks. Through curricu- lum-based training and ongoing supervision, the maturing adolescent is given the opportunity to help younger members and the newly diagnosed patient to cope with the onset of illness. Thus, this model paral- lels the targeted developmental needs of the population, while fostering the transitional process from adolescence to adulthood.

Teen Impact incorporates a family-centered approach, based on research that, despite the increased need for peer support during adolescence, families, and particularly mothers, play a major role in the lives of these patients. Cancer is a family disease and all members need help. Supporting all family members will not only help the family as a whole, but will also enhance com- munication between parents and the adolescent patient to prevent parent-adolescent conflict and encourage honest dialogue. Teen Impact provides a bilingual parent group and a sibling group to meet the unique needs of individual family members and enhance the functioning of the family system.

Clinical observations and patient testimonials suggest that group-related participation encourages discussions associated with being an adolescent and young adult with a life-threatening illness, creates a sense of normalcy by belonging to a supportive net- work of peers, empowers through cancer-related education, enhances coping skills by sharing strategies on how to deal with the illness, builds self-esteem through positive interpersonal interactions, and encourages treatment adherence by providing hope. The finding

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that Teen Impact members used a broader variety of strategies for coping than the comparison group of nonparticipants implies that the intervention may have been successful in teaching a range of coping skills [51].

Several underlying mechanisms may contribute to the overall effectiveness of the group experience, with the most apparent being the fact that group members model coping behavior and provide mutual support for one another. Whatever the specific mechanisms, however, it seems clear that group approaches can be effective in working with adolescents with cancer.

23.7 conclusions

The diagnosis of cancer during adolescence threatens normal physical and psychological development.

While younger children may be somewhat protected by their limited ability to understand the implications of the illness, adolescents may be well-informed and fully aware about the seriousness of their condition. As a group, therefore, they may be more vulnerable psy- chologically than either children or adults. For this reason, comprehensive programs of care must involve provision for psychological support, both in the imme- diate period after diagnosis and in the long-term.

acknowledgments

Christine Eiser is supported by Cancer Research-UK (CP 1019/0104). Aura Kuperberg is supported by Health Promotion and Outcomes, Children’s Center for Cancer and Blood Diseases, Children’s Hospital Los Angeles

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