Deciding about Lung Transplantation: Informational Needs of Patients and Support Persons

Abstract

Information is essential for informed decision making. To date, the informational needs of patients and support persons making the lung transplant decision are unexplored; in addition, the role of support persons in the transplant decision is unknown. To identify the informational needs of patients and support persons attending a transplant clinic for consultation on lung transplantation, and to identify the involvement of support persons in the decision. A qualitative descriptive study and qualitative content analysis. Participants were recruited from the Toronto General Hospital Lung Transplant Program. Twenty-two patients (8 candidates, 14 recipients) and 16 support persons. Most patients made the lung transplant decision in collaboration with their support person and reported receiving adequate information to make an informed decision. Diverse learning needs were identified among and between patients and support persons. Many participants identified the need for more information on practical issues, life after transplantation, and the experiences of transplant recipients. Most patients attending a transplant clinic for consultation on lung transplantation felt they made an informed decision; however, modifications to the content, timing, and ways of providing information could enhance the decision-making process for patients and support persons. Specifically, the transplant team can provide information on core lung transplant topics with access to supplementary information to meet specific needs and use materials that vary in source, formats, and time points during the decision-making period.