Surviving transition: A qualitative case study on how families adapt as their youth with medical complexity transitions from child to adult systems of care

•Families prioritize health, safety, participation and autonomy for the YMC’s future.•Families fear their YMC’s health will suffer due to lack of trained adult providers.•The culture of the adult system leaves families feeling unsafe and unwelcome.•Caregivers weather the effects of prolonged, intense caregiving/unpredictability.•Families adapt to transition through survival, sacrifice, persistence and reframing.