Transcend the Death of Child with Cancer: Professional Health Experiences Trascender la muerte del niño con cáncer: Experiencias profesionales de la salud Que transcende a morte de uma criança com cancro: experiências de profissionais de saúde

Objective: To reveal the perception of grief support of professionals in pediatric oncology units, after the death of the patients. Method: Qualitative phenomenological study. 22 in-depth interviews were conducted with professionals from 5 pediatric oncology units of public hospitals in Santiago. Once the narratives were transcribed, the comprehensive analysis and subsequent triangulation of the data was performed, achieving saturation. Results: Professionals perceive themselves supported in their grief by being able to experience the losses in a protected environment and feeling supported by their surroundings. They recognized the existence of external and internal factors that facilitated the process of grief. However, this support is perceived as insufficient, as there is a lack of formal support from the institution, as well as a protected grief period, or support from mental health professionals to the teams. All death experiences allow professionals to transcend their pain based on lifelong learning and to give meaning to their work. Conclusion: Grief support felt by the professionals is generated from their own initiatives of re-encounter within the teams, which is insufficient. Therefore, training in coping with death is necessary from undergraduate level, which would allow greater cohesiveness in coping and greater self-care within the teams.


Introduction
Since the 20th century, modern medicine has experienced great technological advances that have allowed a paradigm shift in relation to the ultimate goal of this discipline; curing diseases and prolonging life, which has led to a focus on the number of years of life rather than the quality of life during those years. (1) From this, a progressive increase in the distancing of health professionals with death has been observed in the West, giving it a negative connotation and transforming it into a "taboo" subject. (2) This situation occurs especially in pediatric teams, who show difficulty in addressing, understanding, and accepting the death of a patient. (3) Cancer in children under 14 years of age accounts for 1.06 % of all cancers diagnosed worldwide. According to figures provided by the World Health Organisation (WHO), more than 27,000 cases of cancer are diagnosed annually in children under 14 years of age in the Americas, and of these, approximately 45% die, making cancer the second leading cause of death in this age group. In Chile, the incidence of cancer in children under 15 is 12.5 per 100,000 children, with approximately 540 new cases diagnosed each year, and a mortality rate of 2.5 per 100,000. (4,5) Death is therefore a reality that is faced by teams caring for children with cancer, so it is a situation that can be conceived as a failure in the workplace or as the loss of someone significant. (3,6) It is this sense of loss and the perception of delivery of less-effective care or attention, which can generate impotence, suffering, anger, sadness, and insecurity, (7) leading the professional to greater emotional exhaustion. (8,9) This adds to the appearance of physical health problems such as headaches, excessive nervousness, abdominal disorders, and disturbances in sleep, which translates into a decrease in the quality of care, job dissatisfaction and greater absenteeism. (9) For some participants, this problem responds both to a lack of professional training in the areas of palliative care and grief support (11,12) as well as to the inadequate support that exists from the health institutions themselves, to the health teams in the process of coping with the loss of patients. (12,13) In the case of pediatric oncology care, it should be taken into account that the treatments are prolonged and have many side effects for patients, requiring a growing demand for care, to which organizational factors are added such as fatigue due to lack of personnel, communication deficit, surrogate decision making, role conflicts and insufficient vacation time. (11) In contrast to the above, some nursing studies have revealed that the death of a patient can also generate positive attitudes, which are related to the satisfaction generated by providing quality care to people at the end of life, which is considered rewarding and a learning situation, reducing the risk of emotional fatigue and with it, Burnout Syndrome. (14,15) Following what has been described, several studies have indicated that social support to health professionals can be an important mediator in facing the death of patients, especially in the area of child healthcare. (16,17) However, this support should not only be mediated by the recognition of the emotional tie to the patient, but by the possibility of expressing the pain of the loss and feeling real support that responds to expectations and needs. (18) Therefore, the objectives of this study were to reveal what it means for health professionals working in a pediatric oncology unit to feel supported in grief after the death of a patient and to identify the favoring and hindering factors in the grief process.

Method
This research was conducted under the constructivist paradigm, based on Husserl's descriptive phenomenology. (19) This emphasizes describing the experience that becomes conscious through the subject's discourse, and thus reaching the essence of the experiences in the most original way possible. (20,21) In the case of this research, the perception of feeling supported in professional grief.

Participants
The study sample was by convenience. University and technical professionals working in pediatric oncology units of five public hospitals in Santiago, Chile, were invited to participate. These were contacted between the months of May and September 2017. Among the inclusion criteria were: Having worked for more than a year in the unit, having witnessed the death of patients, to acknowledge having had professional grief and, having expressed their participation voluntarily. All workers with recent personal grief were excluded.

Procedures
The professionals were invited by email, and those who agreed to participate were contacted by the researchers to attend the interview and take informed consent. The technique used to generate and analyze the data was according to the ten stages described by Helen Streubert, (22) based on Husserl' philosophy.
This began with the bracketing of each of the project researchers. Each interviewer met with one of the participants in a private place. Prior to starting the interview, a consent was read and signed.

Measure/script/data gathering technique
The data was collected through in-depth audio recorded interviews, carried out by 4 of the researchers trained for this purpose, who shared a unified script whose pinnacle question was: How have you experienced the grief support received, after the death of patients in your unit? On average, the interviews lasted 45 minutes, and field notes were taken during these meetings. All the narratives were transcribed literally.

Data analysis
The comprehensive analysis process was carried out through several readings of the narratives that allowed to "dwell with the data". (24) Subsequently, meetings were held between the researchers to triangulate the data revealed and thus reach consensus on the basis of similar units of meaning, considering the same environment and period. The essence of the phenomenon was structured once data saturation was reached. To confirm the findings, these were shared with the participants, who stated that they felt recognized with the units of meaning. During the process, compliance with the methodological rigor proposed by Guba & Lincoln was ensured, (23) in terms of credibility, confirmability, dependability and transferability.
During the research, compliance with ethical requirements was ensured according to Emanuel. (24) Additionally, it was approved by the Scientific Ethical Committee, MEDUC (N° 16-329) and funded by the National Health Research Fund (FONIS-SA16 I0189).

Participant characteristics
In the present study 22 professionals and health technicians participated, who through their narratives shared their experiences. The sociodemographic characteristics of the participants are presented in Table 1.

Findings
Based on the accounts provided by the participants, it was revealed that the pediatric oncology professionals and technicians perceive support in their grieving when they are able to experience the loss of patients in a protected environment and feel supported by people around them. In turn, they recognize that there are external and internal factors that facilitate the process of dealing with grief within the teams. However, this support is perceived as insufficient, given that there is no formal support from the institution; there is a lack of a protected grief period and deficiency of support from mental health professionals to the teams. All the experiences described above, help professionals to transcend their pain based on lifelong learning and achieve to give meaning to their daily work. Next, each of the units of meaning revealed will be analyzed ( Figure 1) Transcend the death of a child with cancer after having support in professional grief. Source: Own elaboration (2020)

To be able to experience the loss of the patients in a protected environment
The professionals who work in pediatric oncology, express that they can experience their grief, due to the death of their patients, thanks to the fact that they felt free to create their own parting rites and had the possibility of participating in funerals, which favors closure in the loss process. Actually

Feeling supported by people from your personal and clinical environment
Participants consider that they have received support within their own team, and support from their family and friends, which has allowed them to share their experiences of loss. The possibility of speaking and expressing their emotions makes them feel understood and recognized in their relationship with the patients, thus being able to freely express their sorrow.
We support each other. During  In turn, the internal factors experienced by professionals is self-care in the face of grief and the search for spiritual support.
Because when one comes out into reality that is something else, it is a materialistic world ... So, those of us who live here and know that children are struggling to live… I believe that this has helped me to grow spiritually. To empathize, to look where the rest do not. And being the person that I´m, I believe that… thanks to this I´m the person that I'm. (Nursing technician,37 years)

Support in professional grief is perceived as insufficient
Although oncology professionals feel supported in their grief, they say that this support could be of better quality and timelier, especially when it comes from the institution's authorities. In addition, they experience lack of a protected grief period to develop closure rituals with all patients and, lack of formal psychological interventions to the team, which allows for the development of adequate emotional accompaniment.

Transcend your pain
All the experiences described above, allow professionals to transcend their pain in facing loss of a patient that was significant to them, based on lifelong learning and they achieve to give meaning to the work done on a daily basis, both to their patients and to the families; even providing support to their own colleagues within the health team.

Lessons learned after experiencing the losses
The experiences surrounding the death of children in the unit are considered by professionals as an education that allows them to improve professional care based on the experiences of loss and in turn, understand that death is part of life. I

Discussion
This study revealed that the professionals of pediatric oncology units agree and express that they experience grief with the death of patients, experiencing feelings of regret and loss. The place where the participants say to find the support to transcend and work through the grief process, is in their same unit of work. In this, they share rituals of closure in a protected environment and with people who are meaningful to them. In this regard, several studies indicate that the development of this type of ritual inside the teams is a revealing instance, which allows professionals to feel involved and contained in their grief. (25,26) Rituals would be activities that favor satisfaction within a positive work environment, encouraging the perception of a collective effort and, recognition of the work done. (27) These closures or farewells allow for coping with feelings of disappointment, grief, anguish, and failure after a death, (28,29) especially when the professional prepares for this. (2) Some of these aspects are part of the stories expressed by the participants.
It is relevant that the support of significant persons in the environment is considered, in several investigations, as one of the main strategies used by health professionals, as a protective factor against emotional burnout, (26,30) generating greater satisfaction for compassion. (25) As in the present study, Forster (31) and Papadotau, (7) revealed that peer support provides a positive validation within spaces of reflection in their practice, improving self-confidence and job satisfaction. Also, the family of the professional can fulfil an important role of containment of the suffering; a partner being the one who usually provides the most support, (31,32) and help in the face of work stress. (33) Regarding the factors considered as facilitators of professional grief, this study revealed that effective communication, monitoring of the team and co-participation in decision making, provides the foundations for teamwork where the emotional expression of the loss is facilitated, as other investigations refer to. (18,34,35) However, these elements within the teams must be motivated and framed in a joint venture with the authorities of the institutions, (12,30) situation perceived by the participants of this study as one of the weaknesses of the process. On the other hand, self-care and active work on the losses experienced in the workplace and personal environments, promotes self-reflection and acceptance in the professionals and thus recognize death as something natural, (36) which was narrated by some of the participants. In this sense, the accompaniment of a mentor, who guides and supports those who have less experience in the area, generates confidence, security, and emotional containment, which is key in the first experiences of death. (27,28) Another of the facilitating factors mentioned by the participants is spiritual support, which allows them to reconsider the experiences of loss, reassess the assumptions about the world, the purpose of life and develop compassion, (18,30,31) and with it, be able to more effectively deal with end-of-life patient care. (26,37) Despite all the above, grief support within some teams is perceived as insufficient, given the low perception in recognition of professional losses by the institution's authorities, and with it, the perception of minor support in situations of loss, (38,39) as stated also by professionals in this study. Therefore, they expect from the authorities the creation of formal interventions to strengthen and develop coping strategies, as well as specialized psychological care in relation to grief. (18,31,38) To this is added the lack of protected periods to develop end-of-life care, which is hindered by obstacles in the work environment and organizational aspects that threaten the possibility of facilitating a dignified death for patients and families. (36) In addition, the lack of greater communication between the different levels worsens collaborative work, given by vertical dynamics and where nurses assume a passive role in decision-making. (34,40) It is important to note that the experiences described by the study participants, allowed them to recognize that what they lived helped them transcend their pain and transform it into a life learning experience, which favored becoming aware of the relevance of getting involved with a substantial other, (26,34) through a greater commitment and compassionate relationship in their work, (9) which for some oncology nurses would be "loving care-giving". (14) For some researchers, the coping with death generates a deep existential reflection in professionals, which helps to find meaning in the face of their experiences of loss, cultivating their spirituality based on their values and belief. (28,31)

Clinical implications
The grief support received by pediatric oncology unit professionals is generated from their own initiatives of re-encounter within the teams, especially those that count with the creation and development of rites of closure within the unit, which are described as "Sacred Pause". (25) This has allowed for a significant parting to be had with both the patient and the family. This re-encounter necessitates the formation of cohesive and close teams, with respectful, inclusive, effective and trustworthy communication, where the vulnerable professional feels protected and free to express their emotions and opinions.
It should not be forgotten that professionals of pediatric oncology units demand the spaces and times to provide patient-centered care, from a compassionate, comprehensive and humanized approach, especially when in an end-of-life process. To respond to these demands, the active participation of the authorities of the institutions is required, who must provide psychological support and continuous training in this type of thematic, in particular to teams that are exposed to loss of patients.
This study revealed that the confrontation of the duel is being carried out within the teams, without adequate supervision of the institutions. It should be they and the authorities who must ensure the creation of policies within the units, where accompaniment and mental health support programs should be developed for workers, which would help in their selfcare and thus prevent compassion fatigue or early detection of personnel who are at risk of burnout.
On the other hand, this research, together with the studies found, showed that this issue has not yet been fully addressed. There are many gaps between what the teams experience and the understanding of how they face it personally and collectively, which should be developed in future research to know what the long-term effects are against the perception of loss by professionals, and what the consequences may be in the care and attention provided.

Study limitations
The authors acknowledge that a limitation of this research was that a limited group of 22 professionals in the pediatric area belonging to 5 hospitals in the capital of Chile, which do not represent all the hospitals in the country. However, it corresponded to half of the centers dedicated to childhood oncology and the data saturation criterion was met.
Furthermore, another limitation was the low participation of men and physicians that could have affected the findings, which has been observed in other research about death.

Conclusion
This study describes the experience lives in depth by the professionals of pediatric oncology units, for those feel supported by their grief allows them to transcend the loss and give meaning to their work, favoring job satisfaction and self-perception.
For this reason, the incorporation of this thematic in the training of new professionals becomes relevant, integrating it in the curriculum of the different disciplines, and subsequently in continuous training. These strategies will allow early work on the theme of death; accept the right to mourning and acquire tools to deliver timely and high-quality care to patients and families in an end-of-life situation.