There remain substantial gaps in the understanding and implications of the illness experience for children with disabilities and their families. Recognizing these gaps, this pilot project, focused on identity formation and narrative shaping, supports the foundational process of designing, implementing and evaluating narrative medicine workshops for family caregivers of children with disabilities and the clinicians who provide their care. Utilizing experts in the field, family and community members as well as invested healthcare professionals, the aim of these workshops is to develop an effective narrative medicine curriculum that will serve as the first step in recognizing medical humanities and narrative practices as a central element in holistic clinical practice for the community of caregivers of children with medical complexity and disability and the clinicians that seek to help them.
