Intervention program reduces caregiver distress during hospitalization of pediatric stem cell transplant patients

Mar 9 2016

Research from an investigator at Rutgers Cancer Institute of New Jersey and colleagues from other facilities across the country, shows a social-cognitive intervention designed for parents of children undergoing a stem cell transplant had beneficial effects in reducing caregiver distress during the hospitalization period as compared with current best-practice psychosocial care. Rutgers Cancer Institute Associate Director for Cancer Prevention, Control and Population Science Sharon Manne, PhD, who is also a professor of medicine at Rutgers Robert Wood Johnson Medical School, is the lead author of the work published in the February 25 online issue of Journal of Consulting and Clinical Psychology

Q: Why is this topic important to explore?
A: This topic is important because there are no empirically-proven methods of reducing parent distress during this life-threatening event. The stem cell transplant experience is physically demanding for both pediatric and adult patients, as it includes a regimen of intense chemotherapy followed by an infusion of healthy stem cells either taken from the patient or from a donor. Immediate follow-up care includes multiple physician visits, and adherence to strict dietary guidelines and environmental cleanliness over the course of a few months. During this time, some patients experience complications ranging from hair loss and skin changes to to the more serious graft-versus-host disease. With that, previous research from our team and others has shown that between 20 and 66 percent of caregivers have elevated depression and/or anxiety prior to their child's transplant procedure. It was our aim in this study to develop and test an individual intervention program that targets cognitive and social processing strategies associated with caregiver adjustment and compare that to available best-practice psychosocial care.

Q: How was the study structured?
A: Between 2008 and 2013, 218 biological or foster parents of transplant recipients under age 19 were consented to receive the intervention, which consisted of five 60-minute, in-person sessions over a two-to-three week period following the transplant in which they viewed an interactive CD-ROM. Subjects covered included 'worries about your child,' 'coping with solvable concerns involving a stem cell transplant,' 'coping with unchangeable problems' and 'communication and the importance of expressing feelings and needs.' Participants also received current best practice materials, which included a one hour video guide to a child's bone marrow (stem cell) transplant, a pamphlet covering common caregiver issues, an offer of someone else watching the child while the caregiver left the room and walkie-talkies to communicate with the child while not in the room. A majority of caregivers attended at least three of the five sessions where the intervention was offered. Participants were then asked to complete an in-person survey within a month's time of their child receiving the transplant and to complete follow-up surveys at one month, six months and one year post transplant either by phone or mail.

Q: What did you and your colleagues learn?
Results indicate that our intervention reduced anxiety, depression and - to a marginal degree - traumatic distress more than standard best practice materials, but the beneficial effects of the intervention relative to best practices were more short term than lasting. We found that overall psychological benefits of our intervention were no longer evident at the six-month or one-year follow ups. We did find that distress declined among all caregivers over the one-year follow-up period, which is consistent with other research on caregiver distress after pediatric stem cell transplant.

Q: What is the implication of these findings?
A: Our study suggests that our intervention had an impact when primary caregivers were experiencing high levels of trauma and stress - during the time of the actual transplant and hospitalization and that the intervention was more beneficial for specific subgroups of caregivers. For instance, it was more effective in reducing traumatic distress among those caregivers who reported more anxiety at the beginning of the transplant process, and we found this reduction to have carried through to the one-year follow up. The intervention also was more effective in reducing depression in caregivers who reported higher depression at the time of the transplant, but these effects were not enduring, as they were not evident at the one-year follow up. Such immediate relief as provided through this intervention is important, as it spares caregivers additional stress and trauma during a universally stressful life experience. Our findings suggest that screening caregivers for elevations in anxiety and targeting interventions specifically to them may prove beneficial.

Q: What about future studies or applications?
A: Any future research on this topic may want to examine possible differences between mothers and fathers in the caregiver role, as most of the primary caregivers in this study were mothers. Also, if this intervention is carried into the clinical setting, methods of improving intervention attendance might be considered. Utilizing phone or web-based contact that would allow the parent to remain in the room with the child during hospitalization might enable caregivers to more easily access the intervention.