Associate Professor of Occupational Therapy Janet Njelesani Publishes Findings on Children Who Are Caregivers

The Young Caregivers Study seeks to understand the roles of – and better support – children who take care of parents with cancer.

Janet Njelesani, associate professor of occupational therapy (OT) at NYU Steinhardt, and an interdisciplinary team of researchers have published initial findings on a study aimed at learning about the ways in which young people support and care for parents who have cancer.

For the Young Caregivers Study, Njelesani collaborated with Jean Hunleth, associate professor of surgery at Washington University in St. Louis and a medical anthropologist with public health training and professional experience working in global health. The two had previously connected on their respective projects in Zambia.

Njelesani and Hunleth’s research study recruited and interviewed cancer survivors from the Siteman Cancer Center in St. Louis, and then invited their children between ages 11 and 17 to participate in Zoom, phone, or in-person interviews in English or Spanish.

The Young Caregivers Study discovered that young people are engaged in a variety of roles for their parents with cancer, including providing emotional support, caring for younger siblings, helping with domestic responsibilities, and physically supporting the parent through daily activities. The work was supported by an American Occupational Therapy Foundation Implementation Research Grant.

“This project is a good fit for OT because children of cancer patients are not a population we think about, and we have many assumptions about what kids ‘should’ or ‘should not’ be doing,” says Njelesani. “A lot of our discoveries challenge the perspectives of healthcare service providers, which often assume there’s another adult present, but we found that the people whose cancer most affected them were in single-parent, female-headed families. While there isn’t as much recognition that children and teens are helping dose medications and managing household finances, they are capable and out there doing it.”

With these initial findings, the researchers are currently adapting interventions to better support these young caregivers through OT practices, as well as offer resources that they can seek out on their own.

“We wanted to think about where young people look for information; a lot of the resources that are out there are aimed at health care professionals or adults, and others are in the wrong format,” says Njelesani. “We’re looking at how we can post content on YouTube and create online interactions that suit these young caregivers best.”

Looking beyond resources focused on young caregivers, Njelesani and Hunleth believe a multi-level approach – with initiatives for families, medical providers, the community, and society as a whole – will have a more long-lasting impact on the financial and social difficulties of navigating cancer in the United States.