The Engraft Journey Map: Co-Designing a Roadmap for Patients and Caregivers Undergoing Bone Marrow Transplant

Patients and caregivers undergoing bone marrow transplantation (BMT) face overwhelming emotions, complex medical information, and significant uncertainty. Despite the availability of accurate medical details, families often report difficulty understanding how individual procedures and risks fit within the broader transplant trajectory. To address this gap, the Engraft Learning Network partnered with patients, caregivers, and providers to co-design a visual journey map that supports shared understanding and communication throughout the transplant process. A human-centered design approach was used to co-create the Engraft Journey Map. Participants included patients (n=7), caregivers (n=11), and transplant providers (n=24) from multiple Engraft centers. Iterative design sessions captured lived experiences, pain points, and desired supports across the transplant journey. Themes were translated into visual elements depicting milestones, potential complications, and pathways from initial transplant discussions through long-term survivorship. The final Engraft Journey Map provides an accessible roadmap for patients and caregivers beginning with the decision to pursue BMT, extending through engraftment, recovery, complications, and survivorship. The map illustrates both expected milestones and potential detours, such as infection, graft-versus-host disease, and hospital readmissions. Families valued the map’s ability to show the “big picture” while remaining relevant at specific stages. Providers reported its utility as a communication aid during consent and follow-up discussions. The process of co-design ensured that the tool reflected real-world concerns, including emotional readiness, health literacy, and the need for clear orientation amidst uncertainty. The next phase involves development of a digital platform embedding the journey map with stage-specific educational resources, patient videos, caregiver tips, and provider explanations. By grounding design in the voices of patients and caregivers, the Engraft Journey Map establishes a shared language for families and clinicians, transforming uncertainty into preparedness and strengthening trust across the care continuum. Co-designing educational tools with patients, caregivers, and providers ensures they are not only informative but also supportive and empowering. The Engraft Journey Map exemplifies how patient- and caregiver-centered design can enhance communication, reduce overwhelm, and improve the transplant experience for families.