Washington, D.C. — The National Alliance for Caregiving (NAC) today released a new brief, “The Family Caregiver Gap: Disparities and Missed Opportunities in Support Services Across U.S. Transplant Centers,” revealing significant inequities in how family caregivers are supported throughout the U.S. transplant system.
While identifying and securing a family caregiver is often required for transplant eligibility, the analysis finds that transplant caregivers are frequently left unprepared, unsupported, and overlooked. Drawing on a 2024 survey conducted by NAC of 114 transplant centers and 143 providers, the brief examines available caregiver services, utilization rates, and persistent gaps and disparities in support.
Key findings include:
- Unequal access to caregiver support services by race, income, and age: Transplant centers serving predominantly Black/African American or low-income populations offer significantly fewer caregiver support services. Youth caregivers are especially overlooked, with only 18% of centers offering youth-specific programs.
- The practice of outsourcing Critical services like financial counseling, distress screening, and medical education are more often outsourced than delivered onsite creating delays and barriers to access, and leave caregivers unprepared, and ultimately affect the quality and follow-through of patient care.
- The moderate but uneven use of support programs indicates that critical caregiver needs are going unmet: When caregiver support programs are available, about 60% of caregivers use them, particularly peer mentoring and psychosocial groups.
- The lack of proactive screening for caregiver needs results in a reactive model of support: Only 3% of centers regularly assess caregiver needs, with most interventions triggered by crises or waitlist milestones.
- Transplant center awareness about caregivers needs remains a barrier: Nearly half of centers (48%) cite limited awareness of caregiver support needs as their top challenge.
“As a former transplant caregiver, although I was required for the process, I was underprepared and undersupported. Our research confirms that reality and our recommendations point to solutions, from regularly assessing caregivers to training caregivers for their role,” said Melina Pineyro, MPH, Senior Manager of Health Programs at NAC. “No caregiver should have to face this journey unprepared, and with the right support, we can do better to ensure positive caregiver and patient outcomes.”
The brief offers actionable recommendations for policy and practice at a critical moment of transformation in the U.S. transplant system. As the field undergoes significant changes, there is an unprecedented opportunity to address these glaring gaps in caregiver support through developing standardized caregiver screening protocols, integrating caregiver support throughout the transplant process, addressing social determinants of health, and creating incentives for caregiver support through policy and payer mechanisms.
“The support family caregivers receive shouldn’t be a lottery based on race, income, or zip code – yet our research shows that’s exactly what’s happening across the transplant system,” said Jason Resendez, President & CEO, NAC. “At this pivotal moment of transformation in transplant care, we have a once-in-a-generation opportunity to redesign the system so all caregivers get the support they need. Family caregivers are essential to transplant success, yet we’re systematically failing them when they need us most. We can’t continue to treat caregiver support as optional when it’s actually critical infrastructure for patient outcomes.”
The full brief is available now at https://www.caregiving.org/wp-content/uploads/2025/08/NA_Transplant-Disparities-Report_082625.pdf.
Davisha Davis
Associate Director of Communications
Davisha@caregiving.org
