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.

PMG Caregiver Study
: Christina Mangurian
Collaborators: Eleni Linos

It has been well documented that caregiving negatively impacts physical and mental health, and that the health care delivery system might consider caregivers “invisible” or “hidden” patients. Caregiving for an ill child can be particularly stressful and has been linked with parental post-traumatic stress disorder (PTSD), depression and anxiety. Although health care systems increasingly recognize the stress of caregiving for an ill child, there is a lack of knowledge about how best to alleviate caregiver burden. Physicians who become caregivers for their own seriously ill children may have a unique insight into how the delivery system could be improved to better meet the needs of caregivers. The online community “Physician Moms Group” has approximately 55,000 physicians who self-identify as mothers. In prior work, we identified that 20% of the members have cared for seriously ill family members or friends in the past month. Using this unique repository of clinicians with caregiving experience, we will use mixed methods techniques to understand physician mothers’ perspectives on systemic solutions to improve caregiver support.