Findings and recommendations from the organ transplant caregiver initiative: Moving clinical care and research forward

Michelle T. Jesse*, Beverly Hansen, Heather Bruschwein, Gloria Chen, Camilla Nonterah, John Devin Peipert, Mary Amanda Dew, Charlie Thomas, Adilia D. Ortega, Wendy Balliet, Keren Ladin, Stacee Lerret, Alexander Yaldo, Tiffany Coco, Jorge Mallea

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

1 Scopus citations

Abstract

Lay-caregivers are essential to the continuum of care in adult organ transplantation. However, we have a limited understanding of the experiences, exigencies, and outcomes associated with lay-caregiving for organ transplant patients. While much discussion and debate has focused on caregiver requirements in relation to transplant candidate selection, little focus has been given to understanding the needs of caregivers themselves. In response to this, the Organ Transplant Caregiver Initiative was created, and a meeting was held during October 6–7, 2019. Transplant healthcare professionals, researchers, and lay-caregivers discussed the experiences, educational needs, existing research, and research recommendations to improve the experience of lay-caregivers for adult organ transplant patients. In this report, we summarize the Organ Transplant Caregiver Initiative and meeting findings, providing a preliminary action plan to improve education, research, and advocacy for organ transplant caregivers.

Original languageEnglish (US)
Pages (from-to)950-957
Number of pages8
JournalAmerican Journal of Transplantation
Volume21
Issue number3
DOIs
StatePublished - Mar 2021

Keywords

  • editorial/personal viewpoint
  • education
  • ethics and public policy
  • mental health
  • patient education
  • social sciences

ASJC Scopus subject areas

  • Immunology and Allergy
  • Transplantation
  • Pharmacology (medical)

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