Transition from disease to survival: accounts of adolescents who have experienced cancer

Abstract Objective: to understand the transition from disease to survival of adolescents who had experienced cancer. Method: qualitative study, developed with the theoretical framework of symbolic interactionism, conducted with 14 adolescent cancer survivors treated at an outpatient clinic after cancer therapy, in the city of São Paulo. Individual in-depth interviews were performed and recorded, and the data were analyzed and interpreted using the methodological framework of the thematic analysis. Results: four themes were identified: going back to school, being able to live like other adolescents, living in the present moment, and seeking a purpose in life. Conclusion: the transition from disease to cancer survival was full of insecurities, difficulties, and challenges. After the disease, survivors acquire new values and new priorities in life, a reconstruction of the self. They also feel thankful to God and the people who were part of their treatment journey.


Introduction
Until recently, cancer was considered a fatal disease.
Currently, it has become a disease with high chances of survival (1)(2) . Childhood cancer treatment has improved significantly over the past 50 years, and therefore, the survival rate has increased steadily. Children and adolescents aged 0 to 19 years diagnosed with cancer have presented an increase of over 85% in the overall survival rate (2)(3) .
The concept of survivor was first described by a cancer survivor physician, Fitzhugh Mullan. In his article "Seasons of survival", he defined survivor with a general idea that applies to everyone diagnosed with cancer, regardless of the course of the disease.
For him, survival begins at the moment of diagnosis, because at that moment patients are forced to face their own mortality and begin to make the necessary adjustments for their future (4) . Mullan described three phases of survivorship: acute survivorship, the period when a person is diagnosed and treated; extended survivorship, the period after the end of treatment, when the patient handles the physical and psychological consequences of treatment; and permanent survivorship, the period in which remission is unlikely to happen (4) .
Survivor, in the biomedical concept, refers to an individual who has had a life-threatening disease and remains free of such disease for at least five years after finishing treatment (2)(3) . This is the concept used in this study.
With an increasing number of cancer survivors and high demand for health needs, the National also emphasize the relevance of follow-up for cancer survivors, which includes a survivor care plan structured by its accredited institutions (7) .
Cancer survivors in childhood are susceptible to late effects of cancer. These health problems affect the body or mind and can occur months or even years after the end of cancer treatment (6,8) . Late effects can include a second cancer; organ and tissue disease; growth and developmental disorders; learning and memory problems; social and psychological maladjustment; as well as changes in mood, feelings and behavior (6,8) .
Late effects contribute to a high rate of morbidity among cancer survivors in childhood. Between 60% and 90% of these patients develop one or more chronic health conditions and may present serious complications, with risk of death during adulthood (3,6,9) .
Such data justify the need for evaluation and long-term follow-up of persistent physical and psychosocial effects related to treatment (10) .
However, for an effective follow-up of the late effects of cancer, the transition process should be understood and monitored, considering that a disease such as cancer involves uncertainty, affecting the survivor and his/her family. Monitoring survivors in this transition requires establishing a long-term relationship between health services and adolescents in order to provide global, targeted, multidisciplinary follow-up that involves the survivor and his/her family (9,11) . Understanding the transition can prepare health professionals for a more comprehensive approach, focused on the needs of survivors. Today, rehabilitation efforts are being increasingly used in pediatric oncology wards to support the transition of patients who return to daily routine as early as possible in order to minimize the damage caused by the treatment (10) .
In international studies, transition has been discussed as the turning point, which is the period after the end of treatment and just before becoming a survivor (12) .
It is used to describe the turning point of care after the end of treatment and the return to a "normal life" (12) .
In our study, the turning point refers to the transition from disease to survival, the moment when adolescents are no longer sick and become cancer survivors.
Understanding the transition from disease to survival of adolescents who had cancer is important so these aspects can be included in the planning of specific health care interventions focused on this stage of life. Therefore, this study aimed to understand the transition from disease to survival of adolescents who had experienced cancer.

Study design
This is a secondary interpretive process that sought to answer a research question, with an objective and focus that transcends the original study (13) . We conducted www.eerp.usp.br/rlae 3 Ichikawa CRF, Szylit R, Cunha MLR, Rossato LM, Gesteira ECR.
this secondary analysis to understand the transition from disease to survival of adolescents who had cancer. The idea to conduct a secondary analysis emerged from questions raised in the original research, which aimed to learn more about the experience of adolescent survivors of childhood cancer. We sought to go beyond the description of how the experience is supported by the team and the family for an interpretive analysis to discover patterns of human behavior or subjective experience (14) . This analysis helped understand the strategies used by adolescents to face this transition and survive childhood cancer. This systematic approach provides resources for a deeper look at the daily routine of these adolescents who experience an extremely difficult situation and seek care strategies focused on the challenges experienced at the moment of transition, without discussing survival (14) .
Symbolic interactionism was used as the theoretical framework in this qualitative study. This theoretical framework was selected due to the possibility of understanding the "turning point" phenomenon, as it aims to understand the cause of human action and how individuals act in relation to their definitions and beliefs (15) . The meaning of the "turning point" event is attributed by individuals through relationships made during social interactions (15) .

Study setting
Data collection in the primary study was performed from March 2018 to January 2019 using individual interviews.
This study included adolescent cancer survivors who were discharged from the oncology service of a public hospital specializing in pediatric oncology in São Paulo who remain under follow-up at the outpatient clinic, and who had finished the treatment at least five years before, with no sign of recurrent disease. The period of five years has been highlighted in the literature as a sign of healing and survival (2)(3) .
The outpatient clinic selected as the study setting is a reference service in childhood cancer care. Adolescents    considers adolescence the period of 10 to 19 years (17) , authors have used the expanded age group from 12 to 25 years (16) .
The exclusion criteria were: adolescents with cognitive deficit, communication difficulty, hearing impairment or mutism, and adolescents with other associated diseases.
This study had no participant exclusion.

Data collection
The interviews were performed by the main researcher, who used the Original Romance technique, an intensive in-depth interview method where an interviewee narrates his/her own story, which can be considered as novelistic construction, a historical reconstitution told in first person (18) .
The guiding question for this study was: Participants were identified by the capital letter A (adolescent) followed by the sequential number of the interview and the participant's sex.

Data analysis
Inductive thematic analysis was used because it is a flexible technique that allows rich and detailed data analysis. The thematic analysis had six stages (19) : (1) Familiarization with data, which consisted of data transcription, and interview reading and rereading; (2) initial coding, when the first codes were created and After the analysis, four themes were identified: going back to school, being able to live like other adolescents, living in the present moment, and seeking a purpose in life.

Ethical aspects
This study was approved by the ethics committee (approval number: 68985317.3.0000.5392). An informed consent form was signed by the legal guardian of the adolescent and the researcher. The assent form was signed by the adolescent and the researcher.

Rigor
The rigorous analysis of data produced by the researchers and supported by the narratives of interviewees ensured credibility to the study (20)(21) , the characterization of participants indicated transferability, the criteria in the checklist Consolidated Criteria for Reporting Qualitative Research (COREQ) (22) ensured reliability, and the study limitations and positive aspects showed reflexivity of the researchers and study confirmability (20)(21) .

Results
The Going back to everyday life may not be an easy task for cancer survivors, since isolation and loneliness are common in this period (10,23) .
Adolescent cancer survivors have many personal challenges after the treatment: they feel emotionally unstable, socially disconnected, and physically tired.
In addition, they feel the lack of empathy from their peers (12) , which was also mentioned by the participants of this study.
The phase of social isolation, especially from school, can create significant delays in life goals of these adolescent cancer survivors. Physical and social effects of cancer treatment that appear in this stage can significantly impact well-being (24) . Inappropriate approaches or attitudes from other people, both in the school and family environment, can affect their perspectives, reducing quality of life and causing distress (23)(24)(25)(26) , changing the return to school into an obstacle.
Interaction with other adolescents is among the challenges found in returning to school activities. Support from colleagues and teachers is very important in this process of school reinsertion; however, changes in appearance cause demotivation, anxiety, and negative thoughts (26) , leading to social withdrawal (25) .
Being able to return to school is an important component of the survival period; it is associated with www.eerp.usp.br/rlae 7 Ichikawa CRF, Szylit R, Cunha MLR, Rossato LM, Gesteira ECR.
improved quality of life and represents the return to normal life. Adolescents and young adults who are cancer survivors (27) significantly value living "like everyone else", seeking a focus on their well-being and distance from future concerns (26)(27)(28)(29) . Their perceptions of a normal life are based on good social interactions, building good relationships, playing sports, going out with friends, going to school. These activities are considered by adolescents as part of their positive and healthy growth.
Living with the feeling of normality, of something culturally acceptable by society, related to feeling whole and able to set goals and have a purpose in life -this is part of a balanced life. For cancer survivors, preparation is necessary to achieve such balance.
Over time, most survivors of our study learned that, as they aged or started a new phase of their lives, they continually faced situations that brought back their cancer experience again (28) .
The possibility of new symptoms and the uncertainty regarding the future are stressors that can trigger negative emotions (29) . Feelings of uncertainty during the period of transition to survival involve multiple factors -not only medical, but social, and personal factors. They may not be limited to the disease itself, fear of recurrence and late effects, but also involve psychosocial aspects about what to expect when returning to life after treatment (12,28) .
Continuous monitoring programs are necessary to identify possible late effects, offer emotional support and health education, and improve the quality of life of these adolescent cancer survivors (12,(29)(30)(31)(32)(33)(34) . Care management models for cancer survivors are being developed around the world to support these patients handle the consequences of the treatment and help with required adaptations in the period of transition from disease to cure (12,(28)(29)(30)(31)(32)(33)(34) .
Health professionals and patients have to be prepared for the transition from being a cancer patient to becoming a survivor (12,24) . Maintaining the psychosocial health and psychological well-being of survivors is a task to be understood and developed by health professionals.
Nurses are key professionals to support survivors in the transition period and understand the main demands and anxieties of survivors in this stage (11) .
With the end of treatment, care management is no longer focused on the disease, it is centered on well-being.
Cancer survival care mainly manages comorbidities, preventing cancer recurrence and secondary cancer, and promoting quality of life (12) . Guidance and education of survivors and their families during the transition period are based on providing access to resources, support for a change in health behaviors, always aiming to achieve a state of well-being (12) .
The transition period addressed in international studies as a "turning point" can be described as the moment to return to a normal life, a restart with usual care from a primary care provider or change from disease-centered care to care focused on well-being or recovery, a return to normal health (12) .
Understanding the turning point can be used to recognize evolving portraits of the self and identify changes in the identity of adolescents, especially among young survivors, who may identify with other identities as part of the process of starting adulthood (31) .
The transition to post-treatment care can be more difficult than expected, as some adolescents try to process the cancer experience and find a "new identity" (33) . Factors such as physical and psychosocial challenges associated with continuous symptoms related to cancer or treatment lead adolescent survivors to seek self-reconstruction (33) . Survivors may seek to change their identities due to the need for psychological well-being and improved self-esteem (31) .
Childhood cancer is an experience that is closely associated with a process of identity construction or reconstruction (28)(29) . The past identity may reflect a struggle, an identity paradox between not wanting cancer to define the survivor's current life and creating a present identity, which includes reflecting on and honoring the cancer experience while seeking to be distant from that experience, taking the survivor to post-cancer life (29) .
Childhood cancer survivors have their identities altered during the course of the disease. The adolescents of this study, despite believing that they are not represented by the disease, knew that cancer was very important in their lives (31) . They could see the biographical disruptions of cancer have changed over time, moving from a need for self-protection and not being destroyed by the disease to defining their cancer disease as partial integration into their sense of self.
After the end of treatment, as patients restart life, self-identity is reformed, reintegrated, and renegotiated, sometimes as a survivor, victim, or just a person who has had cancer. This moment of identity reform involves recovering the ability to see oneself beyond cancer (12) .
Survivors acquired a more flexible and optimistic way of thinking. These behaviors are attributed to the cancer experience and described in the literature as traits of personal growth and maturity (24) .
Childhood cancer survivors show a high level of satisfaction with their current lives (28,35) , and this satisfaction may be related to the way they identify themselves as adults (24) . Promoting the ability to achieve  (24) .
Gratitude to God is also important in the statements of adolescents, who reveal having had a second chance, a divine gift or a blessing. Adolescents believe they were healed for a divine purpose and show a high perception of hope in life (36) . Similar accounts have been described in a study conducted with the indigenous population in Canada, in which survivors attributed cure to a gift, a plan from the Creator or considered it part of a spiritual journey (37) .
Perception of hope among childhood cancer survivors was correlated with psychological well-being and quality of life in a study conducted in Hong Kong. This study found that lower levels of hope are associated with depressive symptoms and low self-esteem (33) . Belief in the divine destiny and the search for a purpose become factors that encourage adolescents, minimizing the negative effects related to survival.
In the general population, spiritual well-being is related to the presence of a purpose or meaning in life and has been associated with reduced anxiety and other health benefits, such as improved memory, lower risk of disability, and lower mortality rate (38) . Then, a stronger sense of meaning in cancer survivors is also associated with better quality of life, better physical and emotional well-being, and mental balance (38) .
An existential meaning is sought, integrating the changes and creating a new self in the process of becoming a cancer survivor. This search for meaning in life or process of creating meaning is linked with psychological well-being. Patients may develop the so-called "existential distress in cancer" as the "search for meaning" after experiencing a disease such as cancer (36)(37)(38)(39) . However, this process is only beneficial when meaning is found, while a search without finding a meaning can negatively affect the well-being of the survivor (39) .
The search for meaning can reach segments of altruism. Adolescents tend to volunteer and help other sick people; they also reveal the desire to take health courses aiming to help cancer patients. Young people who experience cancer tend to choose university health courses encouraged by their experiences (28) . Some survivors support causes such as brain tumors and lung cancer, and others engaged in the struggle for policies and care practices to improve the visibility and understanding of cancer patients and survivors (31) . The cancer experience allowed them to understand the priceless value of life (28) ; the experience of childhood cancer made them understand the importance of new opportunities and experience the feeling of gratitude, encouraging them to seek a more meaningful life with clear goals (36) .
This study helps expand the knowledge about adolescents who experience the transition from the end of treatment to healing, a topic that is still little explored in the Brazilian context. It is important to expand programs for survivors, which must be articulated with hospital services and community actions in order to improve the well-being and quality of life of this population.
As a study limitation, data collection was conducted in only one cancer treatment service in the city of