The Lived Experience of Work-Related Loss and Grief Among Pediatric Oncology Nurses

Teresa M. Conte, PhD, CPNP

Disclosures

Journal of Hospice and Palliative Nursing. 2014;16(1):40-46. 

In This Article

Findings

A total of 175 significant statements were extracted from the data yielding the following themes: connectedness, alienation, action, maintaining control, and a changed perspective.

Connectedness

The nurses in this study detailed how feeling a sense of connectedness to their patients and other nurses assisted them in finding meaning in their work and support in times of distress. For these nurses, close relationships fostered a feeling of connectedness for the nurses. However, these relationships also intensified the sense of loss and grief the nurses experienced when these patients were lost through end of treatment or death. Some nurses noted that the absence of a relationship intensified the emotional reactions at the time of the patient's death. In those situations, the nurses felt more intense feelings of guilt and helplessness. Nurses often spoke about the relationship they developed with their patients and their patients' families. The relationships also contributed to the sense of meaning that the nurses derived from interactions and directly affected their sense of loss and grief responses. As one participant described:

I think it is harder because I have been here 2 years, so the bonds (to the patients) are a lot stronger. You see these kids so often. The one that is actively dying, I have known him for 2 years since he was newly diagnosed. So not only do I have that bond with that patient, I have the bond with the entire family.

A sense of connection to coworkers was important to these nurses. They used these connections as avenues for mentorship and support throughout their careers. The connectedness that these nurses established with each other provided psychological support and assisted in the processing of their reactions to the losses they encountered during their careers. A sense of belonging to the group seemed to develop after time on the job, and belonging to this group meant that nurses had a core group of individuals from which they could draw support and empathy. One of the nurses spoke about sources of support at work:

You always want to think, "Okay, do I have another experienced nurse there that's going to be able to, hopefully, help me through this?" If I need support, it has always just been with my own colleagues on the floor because they understand the most exactly what is going on. Everybody supports everybody else even if it's informally.

Alienation

Alienation was used as a method of protection of self and loved ones. It was also the result of working in a specialty that is viewed as depressing and sad. Nurses chose to alienate their loved ones from stories relating to work-related losses in order to protect their loved ones from emotional distress. Although this use of alienation served to protect the nurses' loved ones, it in turn removed their loved ones as available sources of support. One participant described her family's reaction to her work:

I do sometimes think I take it home. I try really hard not to, and I am probably better than I used to be. My family will ask me questions about things, but they honestly really do not want to know. Maybe they want to know that I'm OK, but they really don't want to know. I never tell the stories. It upsets them too much, and then I feel bad doing that to them. When they know I lost a patient, they just can't stand it. They absolutely cannot stand it.

Alienation, for some of the study nurses, was self-imposed and functioned as a protective mechanism.

For me, to sit and tell my husband, it just doesn't—I don't feel like he is able to understand exactly what those feelings are that I have and exactly how a typical day can go, and it upsets him, so I don't tell him.

Nurses discussed feeling worried that their careers in pediatric oncology had some negative consequences on their families and loved ones. One nurse shared she used to be concerned that the grief and stress she experienced early in her tenure as a pediatric oncology nurse affected her young daughter.

It's not the same as losing a family member, but it is still a loss. I tried to not bring it home, to make sure I wasn't affecting my family. I do wonder, looking back—because my daughter was so much younger when I was a new nurse and learning to deal with my job and losing patients and being overwhelmed, I wonder how that affected her.

Participants revealed how alienation was both a consequence of their jobs and a method of protection for their own loved ones. The nature of their work as a pediatric oncology nurse also influenced the level of alienation from laypeople that the participants experienced. Participants shared their feeling of frustration regarding their loved ones' lack of understanding of pediatric oncology and the misnomers that their jobs were sad and depressing a majority of the time. A nurse explained it in the following way:

It is frustrating when I tell people what I do, and they say, "That is so sad. I don't know how you do it." I get tired trying to fight the stereotypes. While there are some aspects of my job that are sad, the majority of time there is joy and hope—but if you don't work in our profession, I don't think you really get it.

Action

Many of the nurses spoke about the concept of "doing." They reported that "doing everything" they thought they could for the patient and family gave them a better sense of peace as compared with those situations where they felt they could have "done more" for the patient and family. When the nurses actively provided care, even if it was at the end of life, they felt that they were meeting the needs of the patient and family and making meaning of the experience for themselves. In patient care situations where the nurses felt that they were not able to provide what they considered optimum care because of the patient's or family's denial or lack of a nurse-patient relationship, the nurses described feelings of guilt and helplessness. One participant shared the following:

We have a boy on our unit who is actively dying, and I think I have realized that as nurses, there has to come a time when we accept that the patient is dying, and we're able to accept that we've done all we could. I had an experience seeing mom and doing everything I could in my scope to give her what she needed, and the satisfaction I saw in her face made me think that that is what nursing is all about.

While these close bonds have been demonstrated to be mostly positive for the nurses in this study, the intimate closeness among the nurse, patient, and family was also a source of some distress for them. The empathetic response to patients can place additional psychological burden on pediatric oncology nurses, especially when patients succumb to their diseases. One participant describes the burden nurses feel when they do not think they are meeting the needs of their patients and families:

I just remember being—feeling helpless to be able to help this family to be able to cope with the most horrible experience of their entire life and driving in being on the freeway and thinking, "I don't even know if I can make it to work or not" and then, of course, always going. I felt a sense of helplessness in not being able to fix it or make it better.

Maintaining Control

Participants identified that maintaining control over their emotions was a vital skill for them in pediatric oncology. Many of the nurses highlighted how they were not afforded any time to stop and process a loss they experienced while at work and therefore needed to be in control of their emotions to successfully continue through their shifts and meet the professional responsibilities to their patients.

One participant explained how she felt after a patient loss and how she struggled with keeping her focus on the responsibilities she had to other patients:

I felt like for the rest of the day I was just going through the motions, but I was not really there. I was distracted. Little things that people were saying around me made me want to say, "Do you know what I just experienced? Do you know what happened earlier today?

One of the more experienced pediatric oncology nurses in the study explained how a nurse is always expected to continue on with professional duties, even after a difficult loss:

When you lose a patient you think, I feel wiped out, and now I need to be able to completely refocus and make sure that I'm doing the best for this patient who's coming in who's probably sick and needs me to be on my game and thinking clearly and not rethinking all the things that I just did. You go through all that when you know you should be focused on your next task at hand. I think that is not done the best way for the staff or really for the other patients.

Nurses detailed how they suppressed their emotions in order to continue working after they experienced a significant loss at work. Nurses used the phrase, "keeping it together" to describe the way they repressed emotions until they felt safe enough to express them:

Sometimes I felt like on my way to work or even on my way home that I kept it together and then cried in the car. I was crying in the car on the way to work, but then pulling it together so that I could go to work, and then, occasionally, if things happened at work, I would think how far is the bathroom? Can I make it to the bathroom before I start crying?

Many of the nurses in this study spoke about using distancing as a way of self-protection when they felt the emotions of a situation were too intense. Some achieved this by emotionally distancing themselves, whereas others physically distanced themselves from the difficult situation in order to stay in control of their emotions. The idea of using emotional distancing has been cited in previous studies as a method used by nurses to help preserve their psychological well-being.[11,12]

A Changed Perspective

Despite the challenges and emotional burdens that pediatric oncology nurses experience at times during their careers, nurses in this study reported their world and life views as being positively influenced from their involvement in pediatric oncology. They shared how their experiences with work-related losses changed the way they viewed life and illness in other areas of their lives. One participant stated that because of her work in pediatric oncology she viewed illness and death in a new way:

Sometimes when I see the patients on the general pediatric unit, I think, "Wow, there is way worse things in life than cancer." Some of these kids are totally disabled or have special needs for so much of their life. I think there are worse things than death sometimes.

Nurses spoke about how they have learned to appreciate the lives they have and their time with loved ones. They also discussed the fact that they typically do not dwell on insignificant things that otherwise would have caused them stress:

The silly, day-to-day argument stuff I just don't really have time for. It is like, okay, we disagree. My boyfriend and I really just don't fight because it's not worth that, you know, to ruin the day when this could be the last day.

Participants experienced varied reactions to the losses they encountered while caring for pediatric oncology patients. They detailed positive and negative consequences of being connected to their patients, patients' families, and other staff members. Connectedness came from the relationships that developed among the participants, patients, and the patients' families. The participants also explained how the connection to their fellow staff members served as a support system that assisted them in processing their loss and grief.

Participants were actively involved in the care of their patients and developed various coping mechanisms such as maintaining control to help themselves while providing care during emotionally difficult situations. Although the experiences of loss and grief have been intense and painful for the participants in this study, they were able to share some positive effects that have emerged from their work. New perspectives and appreciation for life have been developed by the participants as a result of their involvement in pediatric oncology.

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