Family Caregivers are Essential to Kidney Cancer and Transplant Care. Are we Supporting Them?

This is a guest post by Yadira Montoya, MSPH, Senior Director of Health Programs at the National Alliance for Caregiving.

A kidney cancer diagnosis affects more than the person receiving treatment. Family members and friends often step into caregiving roles with little warning, helping manage the many uncertainties that accompany cancer care. For many, it is a life-changing responsibility. Their experience reflects that of millions of people who care for a loved one facing a serious health condition, including an estimated 4.4 million people caring for someone with cancer.

For some families affected by kidney cancer, caregiving does not end with cancer treatment itself. When transplantation becomes part of a patient’s healthcare journey, caregivers often find themselves coordinating care across multiple specialties, managing complex medication regimens, monitoring complications, and supporting long-term recovery and follow-up care. This support is especially important because kidney transplant recipients are more likely to develop certain cancers, including kidney cancer. Long-term use of medicines that suppress the immune system and other effects of transplantation contribute to this risk, which results in patients need regular follow-up and continued support from caregivers.

Yet, research from the National Alliance for Caregiving (NAC) shows that many transplant centers still lack dedicated caregiver support programs and rarely assess caregiver needs.

What caregiver support is available?

NAC’s research found that although caregivers are often considered essential members of the transplant process, many do not receive the training, resources, or support they need to confidently fulfill that role:

• Nearly 3 in 10 transplant centers reported that they did not have a dedicated program to support family caregivers.
• Only 3% of transplant centers reported conducting regular caregiver assessments, even though family caregivers are often essential to a patient’s eligibility for and recovery from a transplant.

Similar challenges emerged when NAC and CancerCare spoke with cancer caregivers. Many described feeling unprepared for the medical tasks they were expected to perform, including wound care, medication management, and tube-feeding. Others described the financial strain, and the difficult choices families sometimes made to balance their own needs with their care recipient’s care. Caregivers also reported challenges accessing available resources because of complex eligibility requirements and administrative hurdles.

Taken together, these findings show the disconnect between the responsibilities caregivers’ shoulder without the preparation and resources they need. Listening to caregivers can help healthcare organizations better understand what families need and where support is falling short.

Join the conversation

Caring for someone with kidney cancer can be rewarding, overwhelming, and isolating. Connecting with others who understand those experiences can make a meaningful difference.

That is why NAC and Transplant Journey are partnering to hear directly from caregivers. If you are caring for someone with kidney cancer who has received, is undergoing evaluation for, or is awaiting a cancer-related transplant, this listening session offers an opportunity to share your experiences, connect with other caregivers, and help shape future efforts to improve resources and services for caregivers.

Your Story Matters: Supporting Family Caregivers Across the Cancer-to-Transplant Continuum

Date: Monday, October 5

Time: 2 p.m. – 3:30 p.m. ET

Learn more about and register for the listening session here.