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.

Table 1: Percentage distribution of participating health officials according to sociodemographic characteristics 

^Source: Own elaboration (2020)

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).

Figure 1:  Transcend the death of a child with cancer after having support in professional grief 

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, all in the team recognize our grief… In the unit, when a child dies, we get together with the people on the team who were there at that minute; speak what they thought… We have the opportunity to express and say what we feel outwardly and… It doesn't matter if he is a doctor, if he is whoever he is! In that part, it's like a horizontal thing. We are all the same in that minute! (Nurse, 43 years)

When the girl died, I had the need to do a ritual and invited the rest of the team, because it was also the need for all the team, and there I took a little plant and said, "Let's plant this little plant that our patient represents." And they all came! So, it was an individual need that became a team need. ... And the one that was a ritual not only personal, but as a team, it contains a lot of me and the team... it´s like closing a cycle. (Psychologist, 30 years)

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 my shift (a child) dies ... Therefore, we are all there, supporting each other while attending. Because of the sadness, one starts to cry. So, like we feel supported…. the conversation between us is absolutely spontaneous, it comes naturally from within. (Nurse, 52 years)

I feel that my friends, my family, are a super empathic environment and that I can discuss these issues with them. With my partner, especially. I think that for me this has been fundamental. It bothers me a little if I transfer this from work to home, but I feel that I am a nurse, but I am also a person. In the end, even if you deny it, it still affects your daily life. And when I have shared it, for me it has been more relieved than saving it. (Nurse, 25 years)

Facilitating factors of the grieving support process

Professionals recognize that there are external and internal factors that facilitate the grieving process. Among the externals is having a cohesive team, good communication between colleagues, preparation for death, activities as a team outside the workplace and support from a mentor.

It is they (the team) who help you live the loss of patients. For me, without a team I would not work here ... I´m very sensitive, so if a colleague is able to hug, to look at you, to say, "How are you?". That is more than enough for me! Therefore, this gives me the confidence to show my vulnerability... Something has happened with the team that has matured a lot, and now when one is not able to attend… they don't. Now “I can't” is not frowned upon. (Psycho-oncologist, 30 years)

All the strategies have helped me to feel supported by the rest of the team: the times we have to talk, to take care of each other, the walks, the dinners, the affection, the self-care evenings. I think that everything as a whole has helped me to cope well… At the beginning, I received support from my boss and also from my colleagues... from who we were at the time. That's why I try, with the newer girls, to be there if they need anything. Because these are difficult moments, whether one has a close bond or not, it is difficult... to manage the family or whatever has to be done at that moment, one does not have experience in the usual way of being there. (Nurse, 36 years)

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.

That management come and ask, how are we? … No, never! I've never felt it, I don't know if it touched me… let it be talked about! Let the supervising nurse ask us ... "how was it, what happened and ..." ¡No, never! They are more practical things, but not in relation to how one feels. (Nurse, 33 years)

I have felt supported, not many times… independently that there is a psychologist here, but they are for the children… So, sometimes I feel that there should be more support, such as a psychologist to guide us on how to deal with that situation. But I still feel, I need to vent with whom? ... because I feel that sometimes we feel the same: we feel sorry, the suffering, the loss, the way it left ... “why they (children) suffer so much? why do they have to suffer so much, why so much pain, why the wait so long?” Things that remain ... and we do not have a psychologist to support us. (Nursing technician, 52 years)

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.

I feel that… I feel that deep down over the years, it´s not that you end up harder but that it costs you a bit... It costs you a little to connect with the problems, as well as the basic ones of others ... Deep down, with everything that you are learning, as I feel that in your life you become much less serious ... You learn to live a much happier life because you will realize that your life has no problems ... And unfortunately, you learn it through the death of child. (Nurse, 23 years)

Then over time you learn… and I have learned… Every day here you are learning something… the value of life. I do a lot of things here and I try to help in whatever I can… I work for the children! And… yes, I try to give as much as I can. (Nursing Technician, 52 years)

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 have also learned love. The love to one of these patients, leads you to continue functioning. Because one might have lost a patient, because they died ... but there are another thirty who are there, who are still smiling. So those same smiles, those same children, help you overcome your sorrows. So, I think that love… that is the motivation, and it is what helps the most to overcome it. (Nurse, 34 years)

There are children who die, and it makes you feel more sadness, and then there are others whose death give relief, in the sense that they have now gone to rest. It is like one care more about the child ... in giving him care with dignity, that he is clean ... if he is bleeding, stop the bleeding and try to help him. (Nurse, 33 years)

Give meaning to the work carried out to children in the oncology unit

For the participants, the grieving process within the team allows them to give meaning to the work done for the children in the oncology unit, through the assessment of their own devotion to duty and being able to see life from another perspective.

I am captivated by what I do. When you love something, you commit ... I really like what I do and I think it gives me a lot back. I think it is a privilege, and that is what we try to convey to our children too ... that gives me a sense of transcendence through what I give! I think that through the lives of those children that we save. (Hematologist-oncologist, 52 years)

But the truth is that… you did your job the best you could… and I am very much at peace because I do my job at 100% and I give 120%... the place where I have had more satisfaction, both personal and professional, in spite of how painful it can be, is oncology. (Nurse specialist, 42 years)

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 self-care 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.