Caregiver Psychosocial Support during Pediatric Medical Trauma

UCSF PReMIUM is interested in all aspects of improving health through integration of services.  One area that is lacking in the current US health care system is the provision of psychosocial support during medical trauma-particularly in pediatrics.

Psychosocial Impact on Parents of SCID Infants
: Morna Dorsey
Collaborators: Mort Cowan, Christina Mangurian
Health Delivery System Partner: UCSF Health

Rare immunodeficiency disorders at birth require bone marrow transplantation.  For example, Severe Combined Immunodeficiency Disease (SCID) is a condition where patients are born with genetic abnormalities making them susceptible to serious, life-threatening infections. In California, the SCID newborn screening program identifies patients before the onset of infection, and these patients are immediately hospitalized with the goal of curative bone marrow transplantation. This takes place within 2-3 weeks of birth and patients remain in the hospital for 6 months or longer. The hospitalization period is a frightening and uncertain time for parents and families.  Our study looks at whether parents experience stress and depression as their child is diagnosed and treated for SCID. By administering a series of surveys, we aim to assess postpartum depression, PTSD, caregiver burden, caregiver resilience, and post-traumatic growth in parents at different time intervals. This is the first study where parents of newborn-screened SCID patients will be evaluated for psychological trauma, and we plan to enroll 15 families. The goal is to gain preliminary data on the psychosocial impacts of SCID on families, with the hopes of using this information to provide programs and services to reduce stress for parents and families in the future.

Wiskott-Aldrich Syndrome Quality of Life Survey
: Robert Sokolic
Collaborators: Mort Cowan, Christina Mangurian, Sumathi Iyengar, James Varni, Chris Salchunes

Wiskott-Aldrich Syndrome (WAS) is a rare genetic disorder that causes immunodeficiency, thrombocytopenia, and eczema.  This team is evaluating the impact of WAS on families, depending upon what treatment they receive.  Investigators hope that their findings will help families make informed decisions with the difficult treatment choices they are provided.

Pediatric PID BMT Caregiver Survey
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: