Lessons learned: Development of an organ transplant caregiver educational resource

Abstract

Background: Organ transplant lay caregivers perform an essential and complex role, but there is a paucity of comprehensive, accessible education regarding transplant caregiving. We sought to create a broad, multifaceted educational toolkit for transplant caregivers. Given the complexities of this population, we report on lessons learned by organising diverse stakeholder engagement to develop an educational resource covering the breadth and depth of organ transplantation.

Approach: Following a call from organ transplant patients and caregivers, the American Society of Transplantation (AST) formed an Organ Transplant Caregiver Initiative with the aim to develop a comprehensive educational toolkit for transplant caregivers. The AST Organ Transplant Caregiver Toolkit was created through a shared, multi-step process involving transplant professionals and caregivers, who formed an education subcommittee to develop and refine content domains. The caregiver toolkit was reviewed with relevant external stakeholders and through an internal organisational review process.

Evaluation: Lessons learned included seeking guidance from others with experience creating similar resources, flexibility in project development, creativity in engaging stakeholders and routine communication between all entities involved. Insights gained contributed to the caregiver toolkit completion despite project challenges.

Implications: The AST Organ Transplant Caregiver Toolkit can be utilised by health care professionals to educate and counsel transplant patients and caregivers. Lessons learned from the development of the caregiver toolkit can provide guidance to health care professionals and clinical teachers for the development of future education resources.