PI: Christina Mangurian
Collaborators: Mort Cowan, Anne Lown, Veronica Yank, Alicia Lieberman, Chris Salchunes, Brent Logan

Bone marrow transplantation (BMT) is the only current curative treatment for most infants with primary immunodeficiency disorders (PIDs). Parent caregivers undergo significant medical trauma during the BMT, and have documented long-term rates of PTSD. It is well-established that parental depression and anxiety impact the attachment between the parent caregiver and child, and attachment disturbances are a significant risk factor for development of mental and physical health problems for the child. This undermines the already large healthcare system investment of resources to improve a child’s health. Although promoting resilience among parental caregivers of infants with PID is critical to the child’s long-term wellbeing, the best method of promoting resilience in the midst of significant medical trauma is poorly understood. In this study, we plan to pursue the following two objectives: 1) characterize the well-being of parental caregivers of children with a PID who had a BMT; and 2) identify how the pediatric BMT experience could be improved to reduce psychological distress and improve well-being.

Caregiver Brochure:

- Support for caregivers_v4_website.pdf
- Survey