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NAC — Gaps and Opportunities: Transplant Center Programs (2024)

National Alliance for Caregiving. "Gaps and Opportunities: Family Caregiver Programs in U.S. Transplant Centers." 2024. Second report in the NAC Transplant Caregiving Collaborative.

Key findings used in wiki

National survey of transplant centers (114 sites, 2024)

  • NAC surveyed 114 transplant centers between April 30 and May 18, 2024, including academic and non-academic sites serving urban and rural communities and a range of income levels.
  • 143 provider respondents represented those centers — a mix of transplant nurses (18%), social workers (22%), psychologists (17%), and program directors (43%) — all of whom engage in caregiver support.

The specific gaps

The survey identified concrete, quantifiable gaps in how transplant centers support family caregivers, across three domains:

  1. Caregiver needs assessment practices — most centers do not have a standardized screening for caregiver-specific support needs; where screening happens, practices differ enough that outcomes cannot be compared across centers.
  2. Support and service delivery methods — the types of programs offered (individual counseling, group psychotherapy, education, complementary medicine) vary widely by center, and actual caregiver uptake is moderate rather than high.
  3. Education and training programs — inconsistent, often patient-focused with caregiver as an afterthought, and rarely follow the caregiver across pre-transplant, peri-transplant, and long-term post-transplant phases.

What the gaps produce

  • Inconsistent caregiver experience depending on which transplant center a family ends up at.
  • Disparities in access for caregivers from socioeconomically disadvantaged or racially/ethnically minoritized communities, who are less likely to reach centers with robust caregiver programs.
  • Missed identification — many caregivers never formally enter the support system, which makes it impossible to target interventions or track outcomes.

Recommendations

  • Standardize screening and data collection across centers so caregiver experience can be measured.
  • Embed dedicated caregiver coordinators on transplant teams.
  • Make caregiver support programs targeted, consistent, evidence-based, standardized, and continuous across the transplant continuum — not just at transplant day.

Why it matters for the wiki

  • Gives a citable, survey-grade picture of how unevenly transplant centers currently support caregivers — strengthens the "system gap" claim on conditions/transplant.md and on any future evidence page.
  • Supports the broader claim across the wiki that caregiver identification is a measurable infrastructure gap, not just a sentiment.