With the survival rate of childhood cancer improving and advancements in treatments allowing more of the care to take place in the home, the responsibility of caregiving is increasingly being placed on family members.
Janet Deatrick, a professor at the University of Pennsylvania School of Nursing where she is the Shearer Endowed Chair in Healthy Community Practices, began her research on family management about three decades ago with the intent to examine family functioning in a variety of health care situations, particularly among survivors of childhood brain tumors. Over the years, Deatrick and fellow researchers have found that good family functioning is central to treatment, recovery and survivorship. While empirical research has shown that family management results in better outcomes, a lack of interventions to help family caregivers remains.
She also coauthored two studies published this year in the journal Oncology Nursing Forum focused on issues affecting survivors of childhood brain tumors and their maternal caregivers.1,2
CURE recently interviewed Deatrick to discuss her research on family management as well as potential pathways to interventions.
What are some of the most difficult challenges faced by families supporting children with serious illnesses such as cancer?
First, is to get the information that they need to take care of their loved one. Second, is then being taught how to integrate that into their life. It's fine to be taught how to do a procedure or a technique, but unless we know how to integrate that into the family environment, the home environment, it's really not effective teaching.
I also think caregivers have to learn how to take care of themselves and fulfill their other responsibilities at that same time, for instance, having other children and other people that they're expected to take care of in the family, as well as having full-time jobs.
What role do nurses play in facilitating proper family management?
It’s important for nurses to recognize the family as their partners in care. There's a lot of talk about that today, but I think we need to learn about how to do that. Many times the nurse knows family best and the issues that are concerning them.
Families look to nurses to help them learn to live each day as any family would. They want to be able to say, 'OK, my family member is having cancer treatment, but how can I integrate that so I can have a life that I see as more normal than not?' In fact, we find that families who are able to do that do much better, their loved one gets better care, and everybody has better outcomes when they are what we call 'family focused' in their management. While we want to teach people how to take care of a condition, we need to reframe that as nurses and talk about how can we take care of this person in the context of ongoing family life.
How is family functioning associated with survivors of childhood brain tumors?
One of the things that we're often concerned about in childhood brain tumor survivors are the late effects of treatment and the tumor. But as nurses, we also have to be concerned about those things that can ameliorate some of those late effects. So we try to help the individual with their functioning as much as we can.
What we found in our research, especially with Matthew Hocking [who works with the Department of Child and Adolescent Psychiatry and Behavioral Sciences, the Cancer Center, and the Neuro-Oncology Program at the Children’s Hospital of Philadelphia], is that if we can help families function effectively, we can help maximize the neurocognitive functioning that the survivor has. For example, sometimes brain tumor survivors may have trouble with what we call executive functioning, or just that ability to organize, prioritize, and move forward. In other words, that's what really stops them from getting through the day. But if you have a functioning family that has some degree of organization — things are just not chaotic — that can enable the best neurocognitive functioning that's possible.
1. Lucas MS, Brawner BM, Hardie TL, et al. Assessing suicidal ideation and behaviors among survivors of childhood brain tumors and their mothers during sociobehavioral research. Oncol Nurs Forum. 2015;42(5):E319-E329.
2. Palma E, Deatrick JA, Hobbie WL, et al. Maternal caregiving demands for adolescents and young adult survivors of pediatric brain tumors. Oncol Nurs Forum. 2015;42(3):222-229.