This summer brought a unique opportunity for The Painted Turtle to provide much needed medical resources to parents and caregivers, which is typically only offered during Family Weekends. In going virtual, through our six Camp at Home summer sessions, our Medical team adapted to meet the needs of camper families during these more challenging times. We learned quickly and to no surprise that as a result of the pandemic, parents and caregivers were overwhelmed, which was coupled with the loss of respite, behavioral support, and in-home services for their child. 

Working alongside hospital and medical specialist partners, our Medical Team facilitated illness-specific and general content discussions (such as Learning Independence/Transition to Adulthood and Mental Wellness) and created safe spaces for parent and caregiver conversation through Medical Specialist Meet and Greets, as well as Caregiver Discussion Groups. Before each session, a resource landing page was disseminated and included prerecorded “Specialist Presentations.” During the session, specialists were available to answer medical questions. Topics included:

• Kidney Research & Policy Update, by Dr. Ken Sutha, Pediatric Nephrologist at Lucile Packard Children’s Hospital Stanford
• The Role of the HLS Laboratory and Organ Transplant, by Dave Lowe, PhD, FRC Path, Thermo Fisher
• COVID-19 and Hemophilia, by Dr. Gavin Roach, CHLA
• Managing Long-Term Immunosuppression, by Dr. Sue McDiarmid, UCLA Mattel Childrens Hospital
• COVID Concerns: Pediatric Rheumatology Perspective, by Dr. Suhas Radhakrishna at Rady ChIldren’s Hospital San Diego
• Epilepsy: An Overview, by Dr. Deborah Holder, CHLA

Though the details may differ, we know that caregivers of a child with chronic illness have much in common. The Caregiver Discussions provided time to connect, while being supported by Licensed Clinical Social Workers, Laura Garcia and Susan Klein-Rothschild, and an Education Counselor, Hilary Craw. They facilitated discussions on coping skills, balancing work, school, and home life, identifying resources, and encouraging networking among families.

“Learn from those who have gone before you; give back to those who follow after you.” – Camper Parent

All of these more medically focused opportunities and conversations were truly appreciated by caregivers. It was shared that the access alone to a medical specialist during this time was invaluable. We look forward to continuing to support parents and caregivers in new and innovative ways.