‘The Care We Share’ helps families navigate their children’s complex new medical needs

Caring for a child with a feeding tube, a ventilator, or a trach collar can be difficult. For the families of these children, knowing how to prepare for that care can be overwhelming, as available resources are often difficult to find.

That’s why the Pennsylvania Homecare Association, a statewide organization of more than 400 home care and hospice providers, has published “The Care We Share: A Family Guide to In-Home Pediatric Care.” The booklet contains 36 pages of resources for families, including a checklist for discharge before they leave the hospital and what information they should have readily available for health care providers.

Jennifer Haggerty, the association’s chief operating officer, says it worked with many different health care providers and state agencies to assemble the most important information for families.

“We put together a resource that talks about … everything you need when you get home from the hospital, things to help to organize your home, how to work with your nurses, how to develop that relationship, medical equipment,” she said. “Basically everything that’s going to be part of your new normal.”

“The Care We Share” also includes testimonials from families who have children with complex medical needs. They provide firsthand advice, helpful tips and tricks (families should check with their electric company before bringing home medical devices), and words of encouragement for when things get difficult.

“They talk parent to parent. ‘I know what you’re going through. I was there once,’” Haggerty said. “It seems like it’s insurmountable, but I can assure you we’ll make it through. We’re a community.”

To put together the guide, the association partnered with Children’s Hospital of Philadelphia, UPMC Children’s Hospital of Pittsburgh, Penn State Children’s Hospital, Children’s Miracle Network, PA Vent Camp and more. So far, these organizations have helped provide more than  2,000 copies of “The Care We Share” to families.

Before this guide, Haggerty said, families struggled to navigate the challenges of caring for a child with complex medical needs.

“They had access to all this information, but some of it came from the doctor, some of it came from the hospital before they came home, some of it came from the insurance company, some came from the home health agency. They had to figure out how everything connects and how everything works,” she said. “This guide puts everything in perspective. It’s almost like a little roadmap of how everything is connected. This outlines exactly who and what you need to have in place to make sure your child receives the best care.”

“The Care We Share” is available for free at the association’s website. Families who would like a physical copy of the booklet can call 1-800-382-1211.