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

Helene M. Schoemans, L. Finn, Jackie Foster, Alva Roche-Green, Margaret Bevans, S. Kullberg, Everett Lee, C. Sargeant, Barry A. Schatz, Kristin Scheeler, Bronwen E. Shaw, Evan Shereck, Elizabeth A. Murphy, Linda J. Burns, Kim Schmit-Pokorny

Research output: Contribution to journalArticlepeer-review

11 Scopus citations

Abstract

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.

Original languageEnglish (US)
Pages (from-to)1416-1423
Number of pages8
JournalBiology of Blood and Marrow Transplantation
Volume25
Issue number7
DOIs
StatePublished - Jul 2019

Keywords

  • Blood and marrow transplantation
  • Caregivers
  • Education needs
  • Patients
  • Self-management

ASJC Scopus subject areas

  • Hematology
  • Transplantation

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