Invisible Healthcare
One in four Americans in the United States is currently an informal caregiver—someone who routinely cares for a loved one without getting paid. Yet although caregiving is everywhere, it remains largely unseen. Through new and continuing research, a team of Ƶ professors and students has set out to change that.
Ƶ psychology professor Julie Vos Yonker ’82 is no stranger to caregiving. At 39, her husband Jeff Yonker ’82 sustained a spinal cord injury that altered both their lives.
“Whenever Jeff comes home from the hospital, he says, ‘Okay, Julie, now you have to do the job of five people at the hospital.’ He’s not saying that in a mean way. He’s just acknowledging that this is what I do.” Yonker says that although the intensity of giving care fluctuates, the responsibility is ever present.
Ken Nydam ’71 and his wife, Judy Tjapkes Nydam ’74, who has fibromyalgia and a host of related health challenges, agree caregiving is a 24-hour-a-day, 7-day-a-week role. Leaving the house to play a round of golf, for example, takes careful preparation. “Judy has to increase her risk or inconvenience levels so I can get away for a couple of hours,” Nydam says.
The pair have grown accustomed to planning ahead and frequently relying on family members so that, in Judy’s words, “Ken doesn’t have to worry about me. He can just go out and relax.”
Yonker and Nydam say many caregivers feel overwhelmed and unseen by both the healthcare system and their own communities, and better support is needed.
Research That Responds to Real Need
Yonker distinguishes informal caregiving from other types of caregiving relationships, such as caring for children with disabilities and memory care. That’s partly because the nature of those relationships can be very different. It’s also because there is significantly less research available about informal caregiving, a gap Yonker and her team hope to close.
For the last three years, she and Professors Toluwani Adekunle and Dawn Frambes have co-led a research group spanning three academic departments and involving undergraduate students to investigate the unmet needs of informal caregivers.
Conducting both quantitative and qualitative research, the team collects data on three primary groups connected to informal caregiving: acute care nurses, faith leaders, and informal caregivers themselves.
The Weight of Caregiving
Informal caregivers routinely experience emotional, physical, and financial burdens associated with care. Yonker says the well-being of informal caregivers is a public health concern, since “if we’re not in good health, our care recipient won’t be in good health either.” Themes of grief, isolation, loneliness, physical strain, anxiety, and stress were woven through informal caregivers’ interview responses.
Nydam, who is a pastor and a licensed mental health counselor, says there are two sides to caregiving: the visible and the invisible. “You can always work around the physical barriers. But the personal feeling of loss, the ability to be angry at the person who is sick, and the space to process those feelings—that’s where the deeper suffering is. You know, I didn’t sign up for this kind of retirement,” he says, with Judy by his side. “It’s the work of the Holy Spirit empowering me to walk Judy to the grave and to do it well.”
Yonker identifies another aspect of feeling invisible. “In some of the posters and presentations we have given, we have called the informal caregiver the invisible healthcare provider.” She describes that feeling of invisibility during appointments with Jeff that include care decisions or instructions. “Oftentimes, when they address my husband’s needs, they only look at him and not me.”
Yonker emphasizes the importance of small gestures: “The first two minutes matter.” Eye contact, tone, and attentive listening help caregivers who are exhausted, overwhelmed, or unsure what to ask to feel both seen and heard.
Barriers to Care
Dr. Toluwani Adekunle, assistant professor of public health in the social work department, draws on her personal and professional expertise for her research. She notes that, as the U.S. population ages and the rate of chronic illnesses rises, society increasingly relies on unpaid, informal caregivers, who save the healthcare system billions of dollars a year.
In a 2026 study published in the medical journal Nursing Outlook, Yonker, Adekunle, Frambes and two additional collaborators summarize nurse to caregiver engagement as “relational labor that health systems often fail to recognize.” That resonates with Yonker and Nydam’s personal experiences.
In all, the team’s findings point to three critical needs for reform: integrating caregivers into the care team, ensuring continuity beyond discharge, and providing relational training for nurses.
“In many cases, informal caregivers are expected to step into complex medical roles without being meaningfully included in the full spectrum of care,” says Adekunle, who, at one time, served in a caregiving role for a relative needing an organ transplant. “Without a clinical background, informal caregivers may not have the necessary information to care for a loved one when they leave the hospital.”
Adekunle says systemic change is essential. “It goes beyond individual interactions. It’s really the system allowing for these types of relationships to thrive, recognizing that interaction with informal caregivers is critical to patient success.”
Student researcher Mesa Tsurho ’26, who helped transcribe the interviews with acute care nurses, observed a need for greater trust between healthcare providers and informal caregivers. But building trust requires time—something many acute care nurses said they don’t have enough of. The team also found that medical providers’ ability to empathize with patients and caregivers, as well as their religiosity, impacted the quality of their interactions with informal caregivers.
Tsurho, now a clinical research coordinator at Mass General Brigham Hospital in Boston, Massachusetts, plans to devote her career to improving healthcare at this structural level. Her undergraduate research experience gave her a new perspective about the need to integrate informal caregivers into the continuum of care. Although she grew up well-acquainted with the medical field (both her parents are doctors in India), she says, “This is a side of healthcare I had never seen.”
Faith Communities Can Do Better
The work of supporting caregivers requires knowledge, empathy, and support beyond the hospital setting. Informal caregivers desire visibility within their own communities, too. Eighty percent of caregivers surveyed said a small gesture like sending a card goes a long way. “It’s a glimmer of hope,” says Yonker, “when it’s oftentimes hard to think of hope for the future.”
Faith communities are well-positioned to help, but it’s essential to understand the kinds of help needed. Aside from making church buildings physically accessible, Nydam says it’s also important to create intentional spaces where informal caregivers can safely express vulnerability and lament. For many years, he led a small support group at the church he pastored in Cadillac, Michigan, and wrote a curriculum that can be replicated in other faith communities. “Whatever you do, when caregivers leave the group, they need to know they’re not alone.”
Yonker says it’s sometimes hard for faith leaders to move beyond talking about the recipients of care. She conducted interviews with leaders of multiple faiths and frequently found herself redirecting the conversation from a focus on care recipients to a focus on caregivers.
Yonker, who retired from teaching in May, plans to spend some of her time in retirement writing a research-based guidebook to help faith communities better support informal caregivers.
'Sowing Seeds, Trusting God for the Increase'
A career highlight for Yonker has been taking students to the national Medicine and Religion Conference. At this year’s event in Houston, four students, including Tsurho, presented poster research. The attendee feedback was consistent. “So many people approached me, saying, ‘These are the most outstanding undergraduate students I’ve ever met.’ And I would say, ‘We have a lot of them here at Ƶ.’ It just gave me so much pride.”
The experience also gives her hope that real, research-based change is possible.
Adekunle admits it’s easy to get overwhelmed by the many problems in healthcare that need solving, but when she begins feeling that way she reminds herself and her students of the Pauline metaphor, “Sow the seeds; trust God for the increase. Not everyone can change everything, but we can do some things.”
Caregiving is a universal human experience; all people either give or receive care. Yonker, Adekunle, and their research team hope to make informal caregivers more visible within the systems and communities best positioned to support them. The long-term impact? Fostering a healthcare system and a culture that see caregivers as essential partners.