When your child is diagnosed with cancer, where do you turn?

As a pediatric oncology nurse on the front lines of a cancer ward, Ijeoma Julie Eche-Ugwu, PhD, MPH, FNP-BC, learned first-hand what families need when faced with the unthinkable. Over years of practice, too often she saw the most vulnerable slip through the cracks in the system.

That reality sent Eche-Ugwu back to school to understand why some families were treated differently and improve psychosocial supports for all families as they navigate childhood cancer.  She pursued a master’s in nursing (nurse practitioner track), a PhD in nursing science, and then a postdoctoral fellowship. Her dissertation examined how parents’ uncertainty around their child’s illness at diagnosis influences the parents’ perceptions of their child’s quality of life. Findings indicated high uncertainty among parents and a need for early targeted psychosocial interventions.

Currently an instructor in medicine at Harvard Medical School and nurse-scientist at Dana-Farber Cancer Institute, Eche-Ugwu’s research has been supported by a two-year K12 award from Harvard Catalyst since 2023. She’s used it to chart a path that aligns her clinical work as a nurse with her research goals as a scientist.

You are developing an intervention aimed at improving psychosocial resources for families facing cancer.  Why is this work needed now?

We know, at least in the pediatric psychosocial landscape, that parents need support when their child is diagnosed with cancer. We also know many parent-level psychosocial interventions have been developed over the past two or three decades to help parents navigate their child’s illness. However, when you look at the literature, minoritized families are less likely to be adequately sampled in those intervention studies.

What that means—and the concern that led me to start this work—is that we may be employing interventions that don’t work for those families, because they’re not enrolled sufficiently in the studies to figure out if what’s being tested will help them. So I started talking to African-American parents to understand what they need.

I also felt it was critical to talk to nurses, who are essential healthcare professionals in this setting. They spend a great deal of time at the bedside and are well-situated to identify and address psychosocial needs. I interviewed nurses to learn what they need to provide care to African-American families, and more generally, how they identify families who need support. What do they do? And then, how do they do that with families who identify as African- Americans?

That’s what led me to think about an intervention that’s nurse-targeted, and eventually develop ACCOMPANI, which stands for African-American Childhood Cancer Multiprong Nurse Intervention.

What’s driving your interest in this research personally and professionally?

Throughout the course of my nursing career, my interactions with families left me with some clear observations. I noticed that we work in a system where healthcare professionals try really hard to provide care to all families, irrespective of where they come from. But there’s some subgroup that doesn’t get that same level of care.

“I wanted to learn more about providing care in the best possible way, but also to think about how best to do research that engages families who may be less likely to be involved in research studies.”

That observation, made as a bedside nurse over many years, is what pushed me to go back to get my master’s in nursing science. I wanted to learn more about providing care in the best possible way, but also to think about how best to do research that engages families who may be less likely to be involved in research studies.

Another observation was that some families, particularly Black families, would say things like they were happy to see someone like me at the bedside. This wasn’t an isolated parent saying it once; it was many parents over the years. That told me that, even though good people have great intentions for providing supportive care, there was a lack of representation in the work.

From a clinician’s perspective, I noticed that some families were more likely to be labeled negatively, and that those families who were labeled negatively were more likely to be from historically marginalized groups.

How did those observations shape your research?

They led me to think about how to change care at that level. What if it’s not necessary to identify exactly with someone racially, ethnically, gender-wise – so many factors are at play, right? What if the solution is learning how to deliver care in a way that’s patient- and family-centered? You don’t have to be someone’s family member or even know them very well, but you do things in a way that makes the family (and the child!) feel comfortable enough to trust you and share what they need.

That’s the intention behind the intervention that I’m trying to develop: to arm nurses with the ability to provide bedside care to families who may feel uncomfortable interacting with clinical staff. It empowers nurses to be able to provide the same level of care for all families.

“I think it’s important to highlight how critical this type of grant mechanism is at this point in an early investigator’s career. It really minimizes the stress that you have when you are trying to figure out a research career.”

You’ve used your K12 award to lay the groundwork for a pilot test of your intervention. What have you learned?

My focus so far has been on qualitative work. I’ve reached out to interview thought partners who I feel have a shared interest in developing an intervention like this or insights about how it should work. That includes African-American parents of children with cancer, pediatric oncology nurses, and social workers, and African-American community thought-leaders and disparity scholars. They have given me deep insights into what the intervention should look like. Then I asked pediatric oncology nurses to look at the raw intervention and offer their perspective on how to shape it.

This qualitative research is important because I don’t want to develop an intervention based on what I think should happen, right? Even though I have enough experience as a nurse to do that, I wanted to include nurses who are actively engaged in practice. Hopefully in the future, when it’s fully refined and tested, what we develop will make a difference for these families.

What has the K12 meant to your career build?

The whole K12 grant process has been absolutely incredible to be a part of. It has really allowed me to finetune the intervention. The salary support is critical, but aside from that there are so many training resources that I’ve used that have been very helpful, just on the Harvard Catalyst website. How do you run a research team? How do you manage your time? If there is a statistical or qualitative methodology I want to learn, or where I felt I had knowledge deficits, the K12 gave me the resources to do that.

Other small funds made available through the K12 for research-related uses have also been super helpful. For me, that means I’m not worried about how I pay for the research or how I fund my salary, for example. The K12 does that. Then I can hyper-focus on the research piece. I couldn’t be more grateful about that.

I think it’s important to highlight how critical this type of grant mechanism is at this point in an early investigator’s career. It really minimizes the stress that you have when you are trying to figure out a research career. My hope is that it continues to be available for other early-career investigators, because it’s been very helpful for me.