Caregiver Support Critical to the Nephrology Workforce

Caregiving stigma

Caregiving is a common experience. Forty percent of US households include children, and nearly one in five US adults provides care for another adult (3). Despite the ubiquity of caregiving, those shouldering these responsibilities in biomedical fields face a strong stigma and often lack necessary support, the second NASEM report notes.

Robert L. Phillips, Jr., MD, MSPH, founding executive director of The Center for Professionalism & Value in Health Care, Washington, DC, and a member of the committee that drafted the NASEM reports, explained that clinicians may feel that it is unprofessional to take time away for caregiving. He explained that they often feel that their mission to care for patients is very important and feel pressure to carry their weight and not let their teams down. “That ideal worker model in STEMM [science, technology, engineering, mathematics, and medicine] is so pervasive that it is difficult for us to even think about being caregivers and giving ourselves a break to do that,” Phillips said.

Michelle Rheault, MD, director of the Division of Pediatric Nephrology and director of the Center for Women in Medicine and Science at the University of Minnesota in Minneapolis, noted that one of the biggest challenges for clinicians may be having the flexibility to attend to caregiving needs as they arise. For example, clinic schedules may be set weeks in advance, but school-related events or other caregiving needs may come up on much shorter notice. Elder care can pose similar challenges.

Phillips noted that failing to account for these challenges fuels attrition and may also contribute to pervasive burnout in these fields. “Those that we don't lose, we lose their hearts,” Phillips said. “They feel so torn and unsupported in those new roles. It affects their well-being.”

The second of the two NASEM reports lays out recommendations for best practices for academic institutions. One of them is to ensure that their institutions are following applicable state and federal laws, such as the Family and Medical Leave Act, Title IX, and the Pregnant Workers Fairness Act. “A lot of academic health centers are not always following the federal or state laws already in existence,” Phillips noted.

Institutions should also go beyond compliance to provide students, trainees, faculty, and staff with options that offer flexibility or ease their work burden. Prochaska said that she appreciates her section chief's flexibility and willingness to schedule meetings around the team's children's school or childcare drop-off and pick-up times.

Having parental leave and equal access to support both parents are also important, Rheault said. Her institution recently extended 6 weeks of parental leave for all parents. Previously, men were eligible for 2 weeks, whereas women were eligible for 6 weeks. To alleviate stress on caregivers taking leave, she has also advocated for her institution to create coverage plans that avoid requiring “make-up” time before or after leave. She noted that covering extra shifts before or after leave can unnecessarily add to caregivers’ stress.

Institutions should also consider direct support for caregiving, such as on-site care and subsidies for off-site care, the second NASEM report recommends. Rheault remembers having to rush to wrap up her end-of-the-day clinical duties in order to pick up her children on time because of her childcare center's limited hours. On-site childcare aligned with the clinician's schedule can help, particularly for early career staff who cannot afford a nanny or other live-in care and who may struggle to find childcare for evening or weekend shifts. Prochaska said that she relies on her parents, who live nearby, for help in a pinch, but she noted that The University of Chicago also offers on-site childcare and emergency drop-in care, which colleagues who do not have family or other support nearby find very helpful.

Ultimately, Phillips said that institutions need to create the internal infrastructure to support the needs of individuals who may temporarily need to step away from some of their work to address caregiving needs. He said that building that infrastructure supports caregivers and allows the enterprise to run smoothly. It helps reduce burnout and turnover, attract new talent, and improve clinician well-being. “This is an investment in attracting and retaining an excellent workforce,” he expressed.

“Helping hands”

The second NASEM report also recommends piloting innovative approaches to tackling these problems. One example cited in the report is the Fund to Retain Clinical Scientists, a pilot program launched by the Doris Duke Foundation in 2015 to help reduce attrition among early career investigators with caregiving challenges (4). Gbadegesin, who codirected the program at Duke University, noted that these challenges are often transient, lasting 6 to 12 months, but can derail researchers just getting started. “People are faced with the choice of either you continue with your career and neglect your life, or you forget about your career, and you continue with your life,” he said. “That is absolutely wrong.”

In its first round, the Fund to Retain Clinical Scientists selected 10 institutions to receive grants that would allow them to provide $30,000–$50,000 to investigators with caregiving challenges. Women made up approximately 75% of the scholars who received support, noted Sindy Escobar Alvarez, PhD, program director for medical research at the Doris Duke Foundation. In 2021, the Doris Duke Foundation expanded the program to 22 institutions, with additional funding from the American Heart Association, the Burroughs Wellcome Fund, the Rita Allen Foundation, and the Walder Foundation to help offset the increased caregiving burden that many investigators faced during the pandemic.

Gbadegesin, who also directed Duke University's COVID-19 Fund to Retain Clinical Scientists, the pandemic-targeted program funded by the Doris Duke Foundation and its partners, and his colleagues received an overwhelming response to their calls for applications for assistance. They were able to fund 30% of them. All of the applicants received mentoring and coaching. Those who received grants could spend the money on helping hands, such as hiring a research technician, a grant writer, a research coordinator, or a statistician to help free up the investigator's time. Escobar Alvarez noted that other institutions also allowed investigators to use the funds to “buy back” clinical time to free up time for research. An evaluation of the Fund to Retain Clinical Scientists program found several benefits for participating institutions (5). “It normalizes the discussion [about caregiving] institutionally,” Escobar Alvarez said. “It also endorses that you are important; your contributions are important.”

As the seed funding from the Doris Duke Foundation ends, many participating organizations are looking for ways to continue their programs. Duke University has agreed to continue supporting a smaller scale version, Gbadegesin said. He and his colleagues also want to create an endowment to help fund the program. “Our ultimate goal is to make it sustainable,” he explained. “Any academic institution in the United States that is serious about building the biomedical research workforce, attracting and retaining people, should invest in this program.”

Gbadegesin also urged funders like the National Institutes of Health to consider offering small supplemental grants to its grantees facing caregiving challenges. He noted that spending $25,000–$50,000 to help an investigator facing a temporary caregiving challenge is a small investment compared with the $800,000 or $1 million that the National Institutes of Health may have already committed to funding these investigators over 5 years. “This is a career and a lifesaving program,” he said. He noted that three-quarters of the participants at Duke University were on the verge of leaving their careers when they entered the program. But everyone has continued their research, including three kidney disease investigators, and many have gone on to receive additional grants for their research.

Normalizing caregiving

It has become the norm at pediatric nephrology conferences for investigators to have children in tow and for conferences to have on-site childcare. “They are super family-friendly,” Rheault said. “People don't feel bad about bringing their kids.”

Child-friendly conferences can help early career investigators to participate in vital continuing education, networking, and sharing their work, notes a document by the Women in Nephrology organization (6). It also recommends that nephrology meetings become more family-friendly, including by allowing children into conference sessions, having on-site childcare, and providing lactation facilities. Some associations, including ASN, have adopted more child-friendly policies. For example, Kidney Week allows meeting attendees to register children to attend Kidney Week with them and has links to information on childcare in the area (7).

Rheault highlighted the benefits of such policies in helping to recruit individuals to the profession and urged conferences do even more to support caregivers. “If medical students and residents see women and men who are [at meetings] with their children, it shows the family-friendly nature of the specialty,” she said.

Last September, Women in Nephrology hosted a leadership conference and offered caregiver grants of $200–$300 to help defray caregiving-related meeting costs, Rheault said. For example, the grants covered the costs of additional childcare at home or helped to cover the costs of bringing someone along to help. Rheault noted that her mother tagged along to meetings when her children were infants to help with their care.

Women in Nephrology also offers a mentor match program. Rheault shared that many women who apply for the program are looking for mentoring on work-life balance. They want to talk with others with a career in nephrology and who have children about how they balance it, she said.

Rheault suggested that there is also a place for leaders to normalize caregiving in their institutions, for example, not scheduling early or late meetings that may interfere with school or childcare pick-up or drop-off times. She also keeps pictures of her children in her office and is open with colleagues about when she cannot stay late—for example, because she must attend her child's soccer game. “We need more people to role model that caregiving is normal,” she said.