Mayo Clinic Caregiver Support Program: Putting the needs of the caregiver first

By Nicole Brudos Ferrara

In 2023, Toni Acosta relocated to Phoenix to become a caregiver while her mother received cancer treatment at Mayo Clinic, including a bone marrow transplant. It was a trying time for Acosta, whose home is 90 miles away.

"I had to stay away from my family for months, and my mom didn't want much company. There were times when I had nobody to talk to. There were times when I wanted to pack my bags and leave. It was hard and scary," says Acosta.

To help family caregivers like Acosta, Mayo Clinic launched the Caregiver Support Program at Mayo Clinic Hospital in Phoenix in December 2021. This is its origin story.

It's about the caregiver — not the patient.

Joan Griffin, Ph.D., a Mayo Clinic healthcare delivery researcher, developed the Caregiver Support Program with her team after seeing a similar program at another hospital. "My colleagues and I did a site visit, and I was blown away. It was 100% for the caregiver," she says.

Dr. Griffin and her team shadowed a team of volunteers who visited patient rooms. If a caregiver was in a room with a patient, they asked if the caregiver would like to come out to the hallway for a conversation. "When I first heard the concept, I thought, 'Caregivers aren't going to leave the room to talk to a stranger.' But I realized people were dying to have somebody to talk to," she says.

"When I first heard the concept, I thought, 'Caregivers aren't going to leave the room to talk to a stranger.' But I realized people were dying to have somebody to talk to."

Joan Griffin, Ph.D.

Back at Mayo Clinic, Dr. Griffin and her team spoke to caregivers to learn more about their needs. They realized that when social workers, chaplains, and other support staff speak to caregivers, they often focus on the patients' needs. The caregivers' needs are rarely, if ever, addressed.

Dr. Griffin felt that a program focused on caregiver needs could make a real difference in the lives of Mayo Clinic patients. "The needs of the patient include the needs of the caregiver," she says.

To launch the program, Dr. Griffin used her research funds and support from the Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery. She secured additional funding to evaluate the program's effectiveness from the Mayo Clinic Values Research Council, which promotes Mayo Clinic Values across the institution. Benefactors provided critical support through the Department of Development. Dr. Griffin also partnered with Care Management and Volunteer Services at Mayo Clinic in Arizona, which provided staff and volunteers. Together, they started the Caregiver Support Program on a single floor of the Mayo Clinic Hospital in Phoenix, where people with cancer receive care.

Building a program that cares for the caregiver.

Lynne Vitagliano, a Mayo Clinic social worker, was hired part-time to lead the Caregiver Support Program. Angela Wold, another Mayo Clinic social worker, was brought on as the program grew and now shares the job with Lynne. They train and supervise volunteers who meet with caregivers. They also meet with caregivers themselves when volunteers aren't available.

Every day, Caregiver Support Program volunteers walk from room to room in the hospital, introducing themselves and offering to support the caregivers of the patients they meet. When a caregiver accepts the offer, volunteers take them to a consultation room for privacy. "Depending on the caregiver, these can be short or lengthy visits — 45 minutes, an hour and a half. Sometimes longer," says Wold.

"We make it clear that this is just for them, and what we talk about will not go in the patient's chart or be shared with the patient's care team," says Vitagliano. "This hopefully gives them a sense of confidentiality and space to talk and allows us to validate how important their caregiving is."

"There are so many layers to being a caregiver," Vitagliano adds. "It's not just caring for the patient. Caregivers also take on additional household responsibilities or care for kids or elderly parents. They may also be juggling work responsibilities. They're burned out. When we meet with them, they can let that out. And we hold it for a little while, so they don't have to carry it alone."

"There are so many layers to being a caregiver. It's not just caring for the patient. Caregivers also take on additional household responsibilities or care for kids or elderly parents. They may also be juggling work responsibilities. They're burned out. When we meet with them, they can let that out. And we hold it for a little while, so they don't have to carry it alone."

Lynne Vitagliano

Like Toni Acosta, patients often come from out of town or state to receive care at Mayo Clinic — sometimes for months. This means they cannot always continue to work; they need to pay for a place to stay, and they may have children or spouses at home who need their support. Caregiving can be an emotional and financial burden.

In addition to providing emotional support, volunteers do what they can to support caregivers' financial needs with help from donations. "We've had several benefactors who have stepped in and are excited and actively involved in the work," says Dr. Griffin.

Acosta is grateful for the support she received through the program. "They would come to see me in my mom's room and say they were there for me, and I would start crying," she says. "They were amazing. They helped me with everything — stress relief, getting gas and food cards — they helped me with my mom and dad's rent."

While bone marrow transplant patients like Acosta's mother have plans for caregiving and lodging before they arrive at Mayo Clinic in Arizona, those plans are focused on the patient. "Sometimes those plans break down, and there's a mad scramble to find resources. Our fund is just for the caregiver. We're an additional resource to pull from," says Vitagliano.

Training and caring for program volunteers.

Tish Mailloux, a Mayo Clinic Volunteer Services manager, helps identify volunteers for the Caregiver Support Program. "Most of our volunteer positions are task-oriented or involve interacting with patients and visitors on a customer service level. This program is unique. It's one-on-one with a caregiver. It's intimate," she says.

"Most of our volunteer positions are task-oriented or involve interacting with patients and visitors on a customer service level. This program is unique. It's one-on-one with a caregiver. It's intimate."

Tish Mailloux

In selecting volunteers, Mailloux looks for people who can actively listen and express empathy. Some have been — or are — caregivers themselves. Others have been hospice volunteers. "They all want to make a difference. They're giving their time to listen to someone talk, cry and get mad. They validate caregivers and normalize their experiences in a comforting and nonjudgmental way. It takes a special person to do that," she says.

Vitagliano and Wold spend several months training volunteers. "We have a long training process. We want volunteers to communicate empathetically, conveying Mayo Clinic's values. And we want to ensure they know how to offer comfort without making promises they can't keep," says Vitagliano.

Training starts with classroom sessions followed by several weeks of shadowing Vitagliano and Wold. "First, they watch us as we meet with caregivers. Then we switch, watch them, and act as a safety net until they're ready to be alone," says Vitagliano.

Once volunteers are ready, they work two-hour shifts followed by a debrief with Vitagliano or Wold.

"The debrief is for two reasons: First, to ensure volunteers have offered caregivers all the resources we can offer. Second, to make sure volunteers are OK. These conversations can be tough. We don't want them to go home upset," says Vitagliano.

An extension of the patient's needs.

In March 2022, the team expanded the Caregiver Support Program to include a second floor of Mayo Clinic Hospital in Phoenix, where people receive bone marrow transplants. In August 2023, they expanded again to a third floor where people receive solid organ transplants. Nineteen volunteers now work with the program.

"Caregivers are sharing things they haven't told anyone. Risks around food insecurity. Risks around homelessness because they've had to leave their jobs. Family discord. Things that weigh on caregivers as they sit at the patient's bedside. The unmet needs this program addresses are significant," says Dr. Griffin.

"Caregivers are sharing things they haven't told anyone. Risks around food insecurity. Risks around homelessness because they've had to leave their jobs. Family discord. Things that weigh on caregivers as they sit at the patient's bedside. The unmet needs this program addresses are significant."

Joan Griffin, Ph.D.

The team surveyed caregivers in 2022 to assess how well the program met their needs. Survey results showed that 91% of caregivers said the program was either extremely or very helpful.  "I think that's indicative of the need and the benefit of having a compassionate ear," says Vitagliano.

Dr. Griffin is exploring how the program can expand and evolve to meet a broader scope of caregiver needs. "This program is really good for some caregivers. How do we develop services that fit the needs of other caregivers? Can we provide effective online or virtual services or services for caregivers of patients in our outpatient practice?" She and her team are working to build a set of evidence-based resources that they can scale up or down to meet the needs of caregivers across Mayo Clinic locations.

"It helps to be pulled away for a little bit to decompress and have someone listen to you and help you through it," says Acosta. "They (the Caregiver Support Program team) helped me through so much that my family couldn't help me through."

Learn more

Join the Caregivers Support Group on Mayo Clinic Connect, an online community connecting patients and caregivers.

Find information, support and resources through these websites:

• AARP
• Caregiver Action Network
• Family Caregiver Alliance
• U.S. Department of Health and Human Services

Also, read these articles:

• "Cancer caregivers: 3 tips for communicating with your loved one's care team"
• "Cancer and the holidays: Tips for understanding and coping with your emotions"
• "What to expect when caring for someone with cancer"