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NAC — Transplant Caregiving in the U.S.: A Call for System Change (2023)

National Alliance for Caregiving. "Transplant Caregiving in the U.S.: A Call for System Change." 2023. First report in the NAC Transplant Caregiving Collaborative.

Key findings used in wiki

The invisible caregiver at the center of transplant care

  • The U.S. transplant system depends on family caregivers: most solid-organ and non-solid-organ transplants require the recipient to identify an available caregiver who will provide around-the-clock support before, during, and after transplant.
  • An estimated 60,000 transplant patients in the U.S. — alongside a waitlist of over 100,000 names at end of 2023 — rely on family caregivers for referral, evaluation, waitlist maintenance, and pre- and post-surgery support.
  • In 2022, over 42,000 solid-organ transplants and almost 23,000 stem cell transplants were performed in the U.S.; caregivers are essential to each.
  • Despite this, transplant caregivers are under-studied, under-resourced, and under-supported. Educational and psychosocial interventions exist but rarely follow caregivers for the several years during which they remain vulnerable to distress.

The experience

Findings from the literature review, subject-matter expert panel, and focus groups converge on five themes:

  • Significant time and effort commitment — often around-the-clock care, juggled with work and other family responsibilities.
  • High stress and anxiety — about the patient's health, the transplant process, and potential complications.
  • Lack of support — from family, friends, and healthcare professionals, leading to isolation and overwhelm.
  • Inequity — burden falls disproportionately on socioeconomically disadvantaged caregivers and caregivers of color, yet most research to date is on non-Latino white, formally educated caregivers.
  • Psychosocial consequences that can impair caregiver functioning and jeopardize transplant outcomes — though some caregivers also report meaningful growth.

Recommendations to transplant centers

  1. Standardized screening and caregiver identification during the waitlist period to reduce bias and ensure every family has equitable access to caregiver support.
  2. Caregiver-specific data sharing and coordination across transplant centers so support is consistent.
  3. A dedicated family-caregiver coordinator on the transplant team as a named point of contact throughout pre- and post-transplant.
  4. Routine caregiver screenings and delivery of support services at critical points along the transplant journey — not only at diagnosis.
  5. Policies for financial assistance, workplace protection, and appropriate medical coverage for transplant caregivers, including comprehensive paid family and medical leave beyond FMLA.

Why it matters for the wiki

  • Establishes transplant caregiving as a distinct condition area for conditions/transplant.md, with specific structural pressures (hospital-adjacent relocation, immune-compromised patient isolation, long post-transplant horizon, transplant-center navigation).
  • Anchors the wiki's policy-facing framing of caregiver identification and screening — "you cannot support a caregiver you have not identified" — which is load-bearing for domain/ and evidence/.