A Conceptual Framework and Key Research Questions in Educational Needs of Blood and Marrow Transplantation Patients, Caregivers, and Families

• Published in: Biology of blood and marrow transplantation Vol. 25; no. 7; pp. 1416 - 1423
• Main Authors: Schoemans, Helene M., Finn, Laura, Foster, Jackie, Roche-Green, Alva, Bevans, Margaret, Kullberg, Susan, Lee, Everett, Sargeant, Cindy, Schatz, Barry A., Scheeler, Kristin, Shaw, Bronwen E., Shereck, Evan, Murphy, Elizabeth A., Burns, Linda J., Schmit-Pokorny, Kim
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01.07.2019
• Subjects: Blood and marrow transplantation; Caregivers; Education needs; Patients; Self-management; Caregivers; Self-management; Education needs; Blood and marrow transplantation; Patients
• ISSN: 1083-8791; 1523-6536
• DOI: 10.1016/j.bbmt.2019.02.017

•Blood and marrow transplantation patients and caregivers have unique education needs.•Patients and caregiver engagement is critical to assess educational needs.•Patient-centered research priorities in education focus on self-management. Patient, caregiver, and family education and support was 1 of 6 key areas of interest identified by the National Marrow Donor Program/Be The Match 2-year project to prioritize patient-centered outcomes research (PCOR) goals for the blood and marrow transplantation (BMT) community. PCOR focuses on research to help patients and their caregivers make informed decisions about health care. Therefore, each area of interest was assigned to a working group with broad representation, including patients, caregivers, and clinicians. Each working group was charged with identifying gaps in knowledge and making priority recommendations for critical research to fill those gaps. The report from this working group presents a conceptual framework to address gaps in knowledge regarding patient and caregiver education in BMT and recommendations for priority research questions on this topic. [Display omitted]