Mary Mehegan, BSN, RN, CCRN
For pediatric patients with a VAD and their families, hospital discharge can be frightening; for the hospital VAD team, the process can be daunting. Creating a detailed outline of objectives, including pre-implant education, in-patient education, discharge readiness, follow-up planning, and community reintegration, will help ease this transition to life outside the hospital for VAD patients. The out-of-hospital follow-up and community outreach are key aspects that may not be as visible to inpatient practitioners – so I am excited to share some of those processes with you.
VAD education should begin with the family at the pre-implant phase, preferably away from the bedside so that the family can focus on the discussion. This is an opportunity to introduce the family to life with a VAD and walk them through the goals of care. After the VAD implant, for the inpatient VAD education, we try to schedule our educational sessions with the patient as well as the family and begin as soon as possible. Leaving mandatory education until the end of their stay lessens the value of it and the opportunity for the family and patient to “practice” while inpatient. The frequency of these sessions can be modified to cater to certain individual needs, however, setting a standard of the expected educational sessions will help the educator and the families stay on track. When speaking to families, using language such as “when you are home” can help prepare and remind families of the goal to get there. Acknowledge that in the beginning all of it will feel overwhelming, but the more they learn, the more prepared they will feel.
For clinic follow-up after discharge, the frequency of appointments will be set in order to fit the medical needs of the patient. Patients that live far from the implanting center may be well served to stay in town for a brief time so when they leave the hospital for the first time, they are not so far away from the implanting center. Generally speaking, a monthly check-in is usual for all patients, and we consider virtual visits for families that live far away and also partner with the local cardiologist to help patients feel supported at home.
For community outreach, we consider VAD education to local cardiologists and pediatricians, emergency medical services, and school staff. Doing what you can to help inform the community of a child with a VAD will go a long way in successful transitions home.
VAD Community Outreach Examples:
- Meet with local cardiologist and pediatrician to offer VAD education
- Contact local Emergency Medical Services to notify of a child in their service area with a VAD and provide educational materials. Will meet with the team if requested.
- When the child returns to school, on-site education is provided to the school nurse, school administrators, bus drivers, etc.
- Electric company notification (parents usually have to do this)
Getting back to life outside the hospital should mean engaging in almost all activities of daily living, including going to school. This can be very helpful for the child’s emotional well-being.
School Outreach Examples:
- Outreach to school to begin early to prepare the school to accept a child back into the classroom.
- Review the available resources at school.
- Schedule a day at the school to complete all necessary training with available individuals to support the child. School nurses, teachers, and administrators. Education focused on emergency management of the device and child. Demo equipment is used to ensure understanding is complete.
- The emergency action plan for the school is written and signed by the cardiologist to meet the requirements of the school.
- Review restrictions. No attendance to physical education class. This can be tough as exercise is always encouraged, but it may be difficult for the gym teacher to evaluate what activities are safe at school with many kids running around. Remind kids that some activity restrictions are temporary.
- Some students may want to check in with the school nurse in the morning so they know they have a resource there, but after a time it may subside after the child is more comfortable.
- It is not necessary to have a school nurse, it is necessary to have the child supported at school with a few people that can perform emergency management of the device.
- The school should not have to “assume medical care” if the child is unwell or has VAD alarms, call the parents to pick up the child. VAD children should be well at school. If there is a medical emergency, call 911 like you would for other students.
- We let the child share their own medical information as they wish with other students – it is their choice.
Collaboration and communication between families, local support services, and the VAD team are critical for successful transitions home. All of your teams’ efforts will be well served for the comfort and safety the patient will enjoy at home.