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 language | English (US) |
|---|---|
| Pages (from-to) | 950-957 |
| Number of pages | 8 |
| Journal | American Journal of Transplantation |
| Volume | 21 |
| Issue number | 3 |
| DOIs | |
| State | Published - Mar 2021 |
Funding
We, as healthcare providers, scientists, and the greater organ transplant community, have the shared knowledge to develop, test, and refine resources and interventions for organ transplant caregivers. The OTCI identified needed areas of research focus, content, and methodology. The highest identified priority for interventional research was to determine the most efficacious timing, frequency, duration, and content of education to impact both patient and caregiver outcomes. Other high priority interventional research included therapeutic interventions, interventions aimed at mobilizing additional social supports, and the impact of financial assistance programs. Ultimately, fully powered, multi‐institutional, randomized controlled trials are necessary to clearly determine the effects of caregiver interventions. While the current literature on caregivers is an essential starting point for our understanding of caregiver‐related educational needs, well‐designed interventional research is desperately needed. To accomplish this, more research funding initiatives at the federal level should be provided for caregiver‐based research and caregiver‐focused requests for applications.
Keywords
- editorial/personal viewpoint
- education
- ethics and public policy
- mental health
- patient education
- social sciences
ASJC Scopus subject areas
- Transplantation
- Pharmacology (medical)
- Immunology and Allergy
