Nurses’ Role in Grief Support for Pediatric Brain Cancer Survival

In order for oncology nurses to provide comprehensive support to patients and families going through pediatric brain cancer diagnosis, treatment, or survivorship, they need to understand the reality of what survival looks like for pediatric patients with brain cancer, according to Kasey Rangan, MSN, CPNP-PC, CPHON, a nurse practitioner at the Children’s Hospital Los Angeles in California.

The expectations for survival in brain cancer can vary widely from case to case. In some cases, survivors of pediatric brain cancers can still suffer from neurocognitive issues and developmental delays or have a shortened life span compared to survivors of other pediatric cancers.

These issues can change the expectations about a child’s life for both the patient and their family. Rangan, a nurse practitioner with close to 30 years of experience in pediatric oncology and 10 in pediatric brain cancers, explained that many patients and their families experience grief or PTSD following treatment, especially as they come to understand that what a patient can expect from life may not be what the family envisioned.

Rangan emphasized that not only are children with brain cancer and their support systems largely unaware of the later effects of brain cancer and the way it can change their lives, but nurses also are at times caught off guard by this realization.

As an expert who has worked in survival since 2003, Rangan advised that oncology nurses familiarize themselves with the unique struggles that patients and their families experience after treatment for pediatric brain cancer.

Transcript

I think 1 of the most common things that a lot of nurses, families, and patients don’t realize is there’s a grieving process that you have to go through with all the losses that go along with a really challenging diagnosis like glioblastoma. A lot of times, if a patient is a survivor, there are significant neurocognitive issues because of the treatment, whether it was from tumor location or the treatments we had to utilize.

With a lot of pediatric cancers, such as solid tumors or leukemias, once a patient is cured, for the most part, they can expect to go on and live a relatively normal lifespan and life, right? Whereas with pediatric neuro-oncology, patients really struggle with loss of cognition and loss of expected development.

Knowing that PTSD is an issue, grieving the loss of a child, either for the parents or for the patient themselves, knowing that their ongoing health struggles are really going to limit them in the way that they can expect their future to be: that’s not across the board, but it is way more prevalent in neuro-oncology, and 1 of the huge barriers in that we cure them, but there’s still a ton of long-term sequelae that really limits their quality of life and life expectancy. And I don’t think a lot of families understand that in the moment. And how can you, because when you’re trying to save a child’s life, you can’t say, “We’re going to do all these things, and if they live, they are going to be dependent on you for the rest of their life. It won’t be what you envisioned for your child when they were born.”

That’s a really hard thing, and nurses can play a good role in helping support the family through that—normalizing the feelings, encouraging the role of therapy and supportive services to kind of help through the continuum, really give them support.

This transcript has been edited for clarity and conciseness.