Childhood cancer survivors have gone through tough life experiences during their therapies and rehabilitation. Such experiences leave them curious to know more about their illness and the therapeutic process. Furthermore, they realize that inadequate education might lead to their being less than compliant with their cancer care:

“Firstly, I wonder why I got this illness… then of course I wonder why such disease develops…” (Faras).

Adolescent cancer survivors have long-standing interactions with the health care services. Growing up in such circumstance places the adolescent in profound need of a friendly, compassionate health care service, housed in proper facilities. The childhood cancer survivors also expect the health care facilities to be convenient. Some of our participants expressed these needs as follows:

“I want toys. I want entertainment, so it will not be boring” (Tara).

This necessity arises from the volatile emotional condition that is common in adolescent cancer survivors. The following statements show the survivors’ need for supportive psychological care:

“Actually I do not really remember it, as I get hurt when I remember my past. I feel sad, sometimes hurtful…” (Faras).

Friends and families are ‘significant others’ to the adolescent cancer survivor. The family is an inseparable part of the pediatric oncology patient's life, while peer support is critical during the adolescent period. Our participants pointed this out in some of the following statements:

“My friends have been understanding and supportive. They really take care of me” (Laksmi).

School is a second home for children, including those surviving childhood cancer, at which they spend much of their time. Furthermore, cancer survivors need to readapt to the school environment after they have undergone the exhaustive process of cancer therapies. Therefore, support from the school is particularly necessary for this group of adolescents:

“When I was in elementary school, I was so close to my teacher, there was once a teacher who often asked me if I was allowed to eat this and that…” (Faras).

Social services in Indonesia are commonly provided by the community, by a foundation for cancer patients, or even by other survivors. Nearly all the participants in this study agreed that they needed social services. They would benefit from such a service by gaining a circle of support, not feeling alone, and having recreational activities, or new knowledge.

“Yes it is important. To keep up our spirit. And when, for example, we are in the recovery phase, we can get more spirit from knowing that we are not alone but there are many that suffer from the disease” (Ayata).

This study elucidated seven needs of adolescent cancer suvivors in relation to health care and psychosocial services. Those needs are: follow-up care, patient and family education, friendly health care services, psychological counseling, family and peer support, support from school, and social community activity support. Overall, these findings are consistent with the requirements listed in the guidelines for long-term health care services for childhood cancer survivors13.

Childhood cancer survivors who experience physical deformity or have a history of organ removal tend to have multifaceted health problems. In the current study, for instance, a participant with a history of Wilms Tumor with renalectomy had more complex problems than most of the other cancer survivors. However, an adolescent survivor of juvenile hyaline fibromatosis, who had had facial cartilage removal and was still undergoing reconstructive surgery, had been suffering from pain in the mouth since the surgery and had lost both his hearing and sight due to neurological injuries. These and similar problems were also found in a previous study among 11 481 childhood cancer survivors with various types of cancer. That study mentioned that 10% of childhood cancer survivors suffer from disturbed sensory perceptions including loss of hearing and blindness14.

The magnitude of the physical problems faced by childhood cancer survivors provides the background to their need for continuous physical support by the health care services. A prior study called the Childhood Cancer Survivor Study highlighted the risk of chronic health problems, including life-threatening problems, among childhood cancer survivors as being between 3.3 and 8.2 times higher than the risk for their siblings15. Another study reported on the need for cancer survivors to go through a structured follow-up program since they are susceptible to late effects from their cancer therapy, to lowered health status, and to premature death16.

Education is essential for adolescent cancer suvivors. This study found that these cancer survivors were aware of their need for information regarding their illness, their past and current therapies, and all the related processes happening in their bodies. All this informations should be provided and discussed with the patients, the survivors, the families, and the health care team17. The educational material should be presented in a handy form for the cancer survivor and family to carry home. The material should cover all necessary information, including the therapy regimen, the importance of routine follow-up care, a healthy lifestyle, the risk of long-term effects, and their home management17. In addition, the health care team could adopt other methods of education for childhood cancer survivors, such as psychoeducational interventions, which have been shown to lower levels of stress in cancer patients18.

Failure to comply with health care management emerged as a subtheme in this study. This adds to the underlying need for health education. Sufficient education for both patient and family raises their self-awareness about the need to maintain health19. Some survivors in this study confessed they did not follow the recommended eating pattern or physical activity and skipped the follow-up schedule, sometimes for reasons due to past unpleasant experiences with health care facilities, without realizing the risks to which they were subjecting themselves. Similar reasons were reported in a previous study in addition to feelings of weariness in relation to the health care service20.

The participants in the present study reported that they found the health care facilties uncomfortable. They also described the health care providers as being stiff, fussy, and bad-tempered. They wanted a friendy hospital environment which also provided entertainment or media to distract them from their stressful experience during the treatment or care. Moreover, they wanted more communicative and friendly health care providers who would have more positive interactions with them. A study on the experiences of Latino adolescent and young-adult cancer survivors in the United States points out that survivors view the support received from the health care providers, including the nurses, as a substantial part of their treatment, since they see the hospital as their second home and feel at ease talking with anyone there5. They experience it as such a pleasant environment that they go to the hospital not so much for their cancer therapy as for fun. This shows that the support and encouragement of the health care team and a comfortable hospital environment may become a source of strength for adolescent cancer survivors.

Childhood cancer survivors have been through traumatic experiences during their battle with cancer and its therapies, together with their side effects, some of which remain long after the treatments cease. In consequence, they have to limit their daily activities and maintain a healthy lifestyle. They frequently feel afraid of the cancer reccuring, and suffer from fatigue, physical disabilities, and other physical symptoms. Therefore, they are prone to psychological trauma. One of the findings of this study was the need for psychological counseling. This might arise from a maladaptive response, or the risk of a maladaptive response, in an adolescent cancer survivor, such as negative coping mechanisms, low self-esteem, and a sense of powerlessness. Similar results were found in a study conducted in Hong Kong, where the risk of depression and signs and symptoms of depression were identified in more than half the participants, who were childhood cancer survivors aged 9-16. The childhood cancer surivors in that study were also found to have lower self-esteem than their peers. Some participants in the study, however, showed adaptive responses and did not require psychological counseling. Different conditions, such as cancer type, personality, and peer and family support, might all contribute to an adaptive response. A previous study that compared the psychological condition of leukemia and non-hodgkins lymphoma survivors with that of their siblings, found that the cancer survivors were at risk for depression and somatic distress as much as 1.6 to 1.7 times more often than their siblings, even though their overall psychological condition was considered to be fine21.

All participants in this study agreed with the idea that support from significant others is crucial during the times of survivorship. All participants credited their mothers as having played the most vital role in helping them through their illness and survivorship, while acknowledging the role other family members. At the same time, as with other teenagers, the peer group strongly influences the self identity and social life of adolescent cancer survivors. They need to be accepted in their peer group if they are to build sufficient self confidence. A study in United States by American Society of Clinical Oncology mentioned that brain tumor and leukemia survivors commonly have problems related to school, socialization, and having close friends22. Other research has highlighted that adolescent cancer survivors often feel lonely, anxious about socializing, and have an altered body image23. The current study, interestingly, found that almost all participants had no issues with socialization and gained positive supports from their peers. There was one participant, however, who reported experiencing physical and verbal bullying at school, despite being reasonably good at building close relationships with the other students. All participants in this study mentioned that they had close friends.

Differences in this area might be influenced by the characteristics of Eastern and Western cultures. A qualitative study in a Western context, which focused on the transition of cancer survivors, found that many adolescent cancer survivors restricted their peer interactions due to their physical appearance24. On the other hand, in Indonesia as one of the Eastern country, the values of tolerance and communality are strongly held by the people from a very young age. In the Western culture, people tend to mind their own business, to be individualistic, and independent. This type of culture may contribute to the different issues experienced between east and west and requires further study.

School is the place where children spend the second largest amount of time. It is also a place where childhood cancer survivors can reestablish their previous routines, in line with the other children, after completing their cancer therapy. A theme that emerged in this study was the need for support from the school for childhood cancer survivors, for instance, by giving them permission to attend follow-up care or treatment during the school day and by teachers providing support. Two of the participants expressed concern about problems they were experiencing with a teacher or the school in obtaining leave to attend their routine follow-up treatment at the hospital. A consistent finding, also shown in a previous study, was that adolescent cancer survivors need support from their schools and actually believe that with support from their teachers, family, and peers they will be able to return to normal school life24.

Another finding from the current study was pertinent to community support. All participants in this study stated that they benefited from social services. They were able to share their experiences with the other childhood cancer survivors and learn new things and self-actualize through the activities of the social services. They also got great encouragement and optimism from this social circle. Shared and supportive activities are indeed beneficial for childhood cancer survivors25. Meeting with other cancer survivors may help an adolescent to become more comfortable with themselves, to have greater self-esteem, and to get the feeling that they are not alone as they suffer from cancer.

This study, however, has some limitations. One of them is a lack of heterogeneity among the participants in terms of their cancer types. Different cancer types might lead to different experiences, thus enriching the qualitative data, but we found few childhood cancer survivors of those other cancer types. In addition, two of the interviews in our study were abruptly interrupted by the mothers and that might have distracted the focus of the participants.

Nurses should play an active role in addressing the needs of the adolescent cancer survivor as described in this study. Further interventions and strategies should be developed, for instance, by applying the guidelines of follow-up care, or by providing nursing care that takes into account the risk of late effects from cancer treatments. Nurses should also emphasise their role as patient educators and provide the patient and family with education according to their needs and priorities. In addition, there is an expectation that nurses should become both more compassionate and more jolly when interacting with adolescent cancer survivors.