Table 2.

Coordination role of informal caregiver for a pediatric patient by coordination area: pain management, academic accommodations, mental health support, and future planning.

Coordination area		Relevant providers	Coordination activities	Exemplar
	Pain management	Primary care physician (PCP), orthopedic gastroenterology, etc.	Schedule and preparea for appointments; implement adjustments to care plan and home care, including medication management. Respond to acute medical needs, including emergency services.	Share new peer reviewed studies with PCP related to hEDS treatments and pain management methods which serves as the basis for discussion at the next appointment.
	Academic accommodations	School teachers, counselor, physical therapist, school nurse, PCP	Prepare for, attend and follow up on Individualized Education Plan (IEP) meetings and progress reports; provide school team with updates from medical team; problem-solve challenges that come up and which impact academic work, e.g., fatigue, pain, anxiety, etc.	Proactively reach out to core team members to share updates to plan of care, including recommendations from specialists. Schedule phone calls with individual teachers who are unable to attend team meetings to share knowledge. Send emails with home updates related to pain management.
	Mental health support	Therapist, PCP, music teacher, school counselor	Schedule and prepare for therapy sessions, including parent huddles to provide updates and debrief sessions and to iterate the plan of care.	Access private music instruction and opportunities outside of school district. Initiate discussions with multiple teachers and leaders in the school district about how to provide more supports around music and arts as a form of expressive, socioemotional learning.
	Future planning	Genetics, PCP, school, financial advisor, insurance company	Schedule, attend and follow up on meetings with financial advisor; engage with case manager to optimize access to health benefits; engage in genetic counseling and testing to identify risk factors that have potential to impact future financial and healthcare plans.	Identify, access, and engage financial planner to provide guidance on long term financial needs based on current health information and future health needs, including genetic testing results; conduct in-depth research on healthcare plans to meet anticipated future needs.

^aAppointment preparation includes, but is not limited to, uploading/emailing/photocopying visit summaries or notes from other provider appointments/meetings, developing a list of discussion items, and/or questions that have come up since last appointment and having a conversation with the patient regarding the appointment itself, what to expect and any concerns she may have.