411 EXPERIENCES OF FAMILIES WITH CHILDREN AND ADOLESCENTS AFTER COMPLETING A CANCER TREATMENT : SUPPORT FOR THE NURSING CARE 1

The survival of children and adolescents with cancer has increased in recent years. Researchers and professionals in the health area have prioritized studies on the delayed effects of the treatment and quality of life of the survivors. This study aims to understand how parents and other family members of children and adolescents with cancer, experience the completion of the treatment. This descriptive and exploratory study adopted a qualitative methodological approach. A total of ten families whose children had completed the cancer treatment and were in follow-up in a hospital-school were selected for the study. The data were organized in two thematic axes: the memory % what was experienced and the present % what is being experienced. The study evidenced the participants’ vitality to survive the treatment and fragility to live after it. The results allowed identifying aspects that need intervention, aiming at the improvement of quality of life of children, adolescents and the whole family after the end of the treatment.


INTRODUCTION
In Brazil, the incidence of pediatric cancer is still unknown in its full extent, although national estimates from specialized services, affiliated with the Brazilian Society of Pediatric Oncology (SOBOPE) and registered at the Ministry of Health, indicate between 8,000 and 10,000 cases/year in Brazil (1) .North American statistics estimate that one in every 900 persons between 16 and 44 years old will be a survivor of child cancer.This rate is expected to reach one in every 250 by 2010 (2) .In Brazil, children and young people with acute lymphoid leukemia are cured in 80% of cases (3) .
Nowadays, being free from the disease from a medical perspective is a growing possibility for children and adolescents with cancer.However, the emotional and social dimensions of cure need to be taken into account.In this sense, if the experience of having a cancer affects all levels of the child's, the adolescent's and their relatives' lives, the same is true for the experience of surviving such a severe disease and aggressive treatment (4) .Children cured from cancer are ex-patients, who may suffer from more or less visible and disabling physical and mental sequela and preserve, for a long time, the marks of the threat that hit their body and put a burden on their lives (5) .
The term survivor emerged in the 1970's and there is no consensus in pediatric oncology literature about the definition of survivors.Some authors define the term as children and adolescents who are free from the disease for at least five years, while others use it to refer to patients who completed the therapy at least two years ago (6) .In this study, we adopt the definition that cancer survivors are people who were diagnosed with the disease and affected by the diagnosis.The latter situation also includes relatives, friends and caregivers (7)   .
In interaction in the family sphere, each family member's health and disease state affects and is affected by the family.Children and adolescents, especially with severe diseases like cancer, affect the entire family and interactions among its members.In this perspective, becoming a patient and receiving health care covers a series of events that include the interaction among different people, among which the family, friends and health professionals.Each family's role in this process varies according to the type of health problem and the relatives' degree of involvement (8-9)   .
The family represents an important source of support to its members in the health-disease process (8) .Consequently, it has assumed the daily care needed in the therapeutic process, in the home environment as well as during hospitalization episodes.As a result of the increasing emphasis on the family, the way it is perceived in the health context has changed, mainly surpassing the utilitarian definitions that used to be attributed to the family, when it was seen exclusively as a good for the patient and its presence was considered and sometimes tolerated, especially in health care environments, in view of its role in the affective sphere of the sick relative's recovery (9) .
Getting to know the family's experience in crises, the overload the disease provokes and the quality of life obtained in daily reality allows nurses, if aware of the strategies the families use, to offer support and discuss the best alternatives for coping with the disease situation (10) .Thus, this study aims to understand how parents and other relatives of children and adolescents with cancer experience the end of treatment, in order to support them to cope with this and future periods.

STUDY DESIGN
This is a descriptive-exploratory study with a qualitative methodological approach, given the nature of the study object and the proposed objective.We attempted to understand the meanings relatives of children and adolescents attribute to the experience of surviving cancer.These meanings are considered as being constructed in daily life, in the social relations with their peers.participants' permission.We departed from the premise that the home context is a sphere the families master better and would thus grant security, freedom and greater privacy during the interview.It was observed that this actually occurred, as the participants demonstrated more tranquility at home than on the day they were addressed in the hospital sphere to present the project.The interviews at home allowed us to identify the situation the families lived in, offering resources for planning interventions that approached their realities.

RESULTS
Based on the data, two thematic axes were  In this study, it was perceived that, when the organization for the child's care demands that one family member gives up his/her job, particularly when that member is financially responsible, this compromises family income.The reports show that the initial phase of the disease and the treatment caused changes in the parents and relatives' lives.All participants remembered the process of searching the diagnosis, the trajectory until they received the correct diagnosis, as well as the effect of the disease's confirmation in their lives.Thus, the parents started to obtain knowledge about cancer, the treatment and its consequences.

The present -what is experienced
The study participants mentioned joy at the end of the treatment but, at the same time, reported on their feelings and concerns related to the child's physical condition and adaptations to the sequelae.The need for special care and follow-up of medical guidelines in the first months after the end of treatment were followed by the parents, including care that was no longer necessary, in order to prevent situations that could change the child's health state.The sequelae interfere in the survivors' quality of life.The main concern seems to be with the self-image, specifically with the hair loss, perhaps because this makes the child or adolescent different from others.The period after treatment is also marked by conflicting feelings.The parents express that, after they got over the crisis of the disease and treatment, they survive, still feeling affected by different feelings and personal and emotional changes.Any severe disease confronts the child and his/her family with suffering and expectations, provoking profound and distinctive changes in their lives (11) .The study participants also reported this situation, as highlighted below.
Oh dear, when I received the news that the treatment was over.The parents try to overcome their difficulties by restarting activities they used to do and which were interrupted by the treatment.The parents experience the distancing from the health team that took care of the child during treatment in a dual way, that is, they mention that, at the same time as they celebrate the discharge, they feel threatened by the absence of the hospital and the team, which was ready to deliver care in case of problems.They indicate that they lose the ground beneath their feet when the child is discharged and question their capacity to cope with the child's health state when the treatment ends.The parents acknowledge that the new routine of their children's time and care marks a new phase, a period after the disease.They recognize the families that are starting the treatment and show their availability to help them, as presented below.To move beyond the physical, social and emotional barriers left by the disease, the parents look for support from the family, friends, the health team and religion, as shown by the reports below.cancer implies paying attention to quality of life after the therapy, in the short, medium and long term.The need for continuous follow-up of the survivors by the health team is evidenced by the possibility of detecting situations that demand intervention.

DISCUSSION
Surviving cancer contains distinct dimensions, there is the physical and the mental cure, in which the physical corresponds to the cure verified and announced by the health team, while the mental refers to the cure obtained when family members find or find back their identity (5) .In most cases, the way the patient and the family experience the disease is a unique event, a personal experience, resulting from each human being's history, way of life, being and relating, which can only be understood within that person's own history (12) .For people who have a child with a cancer diagnosis, it seems to be difficult to incorporate the disease into the family routine, although they organize themselves for daily visits to the outpatient clinic, deal with the complications of the disease or the treatment itself which maintain the family alert, and cope with the hospitalization periods (13) .The treatment period can entail positive and negative effects for the family members, like for the healthy siblings for example.They can present feelings of concern, protection, or also anger, anxiety and guilt with respect to the treatment of their sick sibling.The siblings need attention, encouraging parents to dedicate more time to their healthy children and mainly explanations about the disease and treatment (14) .
Families with experiences of living with and surviving cancer go through periods of transformations, with moments of greater disequilibrium in the family system during certain phases, which can be connected with the disease phases or with landmarks in child development.These periods demand care planning from nursing, with specificities and individualities (15) .
The constant threat of relapse and the possibility of restarting a new treatment reveal the feeling of insecurity in relatives of cancer survivors.
In view of the complexity and aggressiveness of the disease and treatment, cancer survivors start to fight in the attempt to positively conquer the coping with memories of the past, seeking a new moment of life, a life without the disease, or better, life after the disease (16) .They are concerned with their children's course, if they will overcome the limits that life itself imposes, if they will face difficulties due to the sequelae.As to the quality of survival, it should not only be based on biomedical measures, but also on criteria related to the existential dimension.Therefore, better knowledge is needed about this dimension and, more specifically, about the implications for children and adolescents who experience the changes deriving from the disease and treatment process (17) .In order to continue the survivors' follow-up, there is a need to establish a long-term relation between health professionals and patients.Continuity is defined (18) as a word used instead of longitudinality, which is defined identified: the memory -what has been experienced, and the present -what is experienced.These will be presented below.The memory -what has been experienced Remembering the past, the path traveled until the correct diagnosis, the difficulties faced because the child's health status worsened, the fear and uncertainty entailed by the diagnosis and becoming familiar with the new routine, new people, new environments were part of the relatives' lives.The start of the disease, which is generally abrupt, without an unknown cause, was identified by small and random alterations that got worse suddenly and rapidly, surprising the family.The search for the correct diagnosis was part of the history of these parents and children.As cancer is a disease with non specific signs and symptoms, this can often make the diagnosis difficult, as observed in the report below.
as "individuals' or groups' dealing with growth and changes during a number of years".This longitudinal relation between the team and the survivor allows for a greater probability of recognizing the patients' problems, by a team who is familiar with them.Nurses should integrally participate in this continuous care process for the children and their families, in order to stimulate and help to create the capacity in parents and relatives to face the diagnosis, treatment, cure and survival process.CONCLUSIONWe consider that surviving cancer represents the ground families covered with their children and adolescents who finished cancer treatment.Surviving also refers to a health state that may be accompanied by sequelae from the treatment, which can emerge early or in the long term, but in one way or another possess a distinctive meaning for the relatives, children and adolescents.In order to plan nursing interventions that involve the family, there is a need to understand the experience of the families whose children and adolescents finished the treatment in order to, during a later stage, help during the process of coping with and adapting to this new period.Surviving the treatment is complex and depends on the families' objective and subjective aspects.The experience of ending the treatment is related with coping and with the adaptation in the way the relatives lived with the disease and the treatment, in the way they attempted to recover their routine and planned the future.We indicate some intervention strategies here to contribute to the families of children Experiences of families with children... Ortiz MCA, Lima RAG. and adolescents who finished cancer treatment: training and preparation of health professionalsspecialization courses, permanent education and undergraduate programs themselves should include contents about the functional and psychosocial consequences of cancer and its treatment, emphasizing prevention and care for late effects; constitution of a multiprofessional team for care delivery to children, adolescents and relatives who survived cancer treatment; constitution of parent groups for orientation and experience exchangepromoting moments of meeting with family members to talk about their doubts and difficulties; closing partnerships with companies and the community with a view to the survivors' training and inclusion in the job market; getting to know each family's reality.Therefore, home visits should be made to get to know the reality the relatives live.The specialized oncology service should get involved with the primary health care sector -by providing a counter-referral letter with each child's or adolescent's history, highlighting the possible signs and symptoms of relapse and late effects, involving the survivors in the decision making and treatment planning process.
take him to hospital every 3 weeks and he'll have to