A Parent's Perspective on Systemic Gaps in Supporting Complex Pediatric Care at Home

Children with complex medical needs often require substantial medical care, including at home, where family members perform many procedures typically reserved for licensed nurses. This article presents a caregivers' perspective of navigating the healthcare system while managing her daughter's care following a diagnosis of Ataxia-Telangiectasia, a rare neurodegenerative disease. It reflects on the systemic gaps in how we prepare and support family caregivers, particularly regarding end-of-life discussions. This article highlights how caregivers are uniquely positioned to identify inefficiencies, safety concerns, and innovative solutions both in hospital and home settings, often before they are recognized by the larger healthcare system. Recommendations include establishing formal caregiver feedback systems, standardizing caregiver training, and developing values-based communication training for clinicians. By integrating caregivers into formal processes, healthcare systems can become more responsive to the needs of children with complex needs and their families.