Amish families living with chronic disease face many hurdles to treatment, and because they come from tightknit, faith-based, low-tech communities, they often feel alienated in a clinical setting, where doctors can be inclined to disregard faith and lifestyle in favor of tried-and-true procedural medicine. This gap between Amish culture and modern healthcare is one that Angela (Oldenburg) Kueny ’02, with help from her students, is trying to bridge.
As a graduate nursing student at the University of Iowa, Kueny, who was interested in how nurses could work better with cultural communities, was invited to participate in outreach clinics for the Amish.
Her experience at those clinics encouraged her to focus on how Amish families’ beliefs shape their understanding of chronic conditions and how they interact with healthcare professionals. She could identify areas where family beliefs and the traditional healthcare system didn’t always work well together, sometimes at the expense of the family’s health.
Although the Amish don’t oppose modern healthcare, they are less likely to seek it, preferring to use home remedies when possible. Amish families’ faith in God guides their decisions about health and healing, sometimes coming into conflict with recommended medical protocols. They don’t believe in health insurance and in fact are exempt from the Affordable Care Act’s mandate to buy it. Rather, when one member of a community faces a health crisis, the community pools its money to help pay bills. Amish people can be hesitant to undergo costly medical treatment, Kueny says, especially when they don’t understand its function or necessity.
Other factors also contribute to the uneasy connection between Amish and modern healthcare. Reluctance among the Amish to use higher-tech modes of communication makes it difficult to set appointments. And the remoteness of their homes makes it difficult to keep those appointments, as do the rhythms of planting and harvesting, which the self-sufficient Amish have to respect in order to flourish. In addition, Amish people often feel uncomfortable having frank conversations in a clinical setting.
Many Amish families prefer natural treatment options, while healthcare providers rely heavily on medical protocols that Amish families may not understand or be able to afford. As one Amish father told Kueny, “Care is decided based on what people think is right.” Although many providers do cross cultural boundaries and reach out personally to their Amish patients, some healthcare providers have room to grow in sensitivity and respect for this community.
For her dissertation, Kueny worked with Amish families struggling with chronic conditions, since they were most likely to have frequent interaction with healthcare providers. She rented an apartment in an Amish community of about 1,000 and met with the community’s bishops, who were eager to increase understanding between their community and healthcare providers. She talked with families, often in front of a warm stove, sharing coffee and dessert at the end of a long day of farm chores, and learned about their lifestyle and struggles. She was taken under the wing of an Amish herbalist, who is often the first stop for families coping with illness.
Kueny started to learn which vitamins, supplements, and herbs Amish families were taking to treat themselves for certain conditions, including hemophilia, a genetic blood-clotting disorder that occurs at high rates in Amish communities. She began to see that if healthcare workers understood more about how the Amish were medicating themselves, they could provide better care.
Kueny joined the Luther nursing faculty in 2010. She continued to volunteer at the University of Iowa outreach clinics, but questions about home remedies among Amish families with hemophilia still nagged at her. Were the herbs and supplements safe? Were they effective? Did they interact with any modern medicines the Amish people might be taking? Did healthcare workers have the education they needed to guide Amish families appropriately?
When nursing major Sandy Cardenas ’16 approached the assistant professor about interning with her last summer, Kueny took advantage of a healthcare research fellowship established by an anonymous donor and put Cardenas to work surveying Amish families with hemophilia. Cardenas sent letters, collected survey responses, and did a literature review to assess which herbs, vitamins, and supplements listed in the responses seemed to increase or decrease hemophiliac bleeding, as well as which were potentially interacting with drugs like warfarin, an anticoagulant.
This research approach appealed to Cardenas, who chose nursing over becoming a doctor because she wanted a high level of interaction with patients. “I like the idea of looking at patients holistically,” she says, “so in this case looking at these patients and saying, ‘Okay, they’re Amish—what part of their background might promote or inhibit their adherence to certain treatments?’ That really touched me—that’s where I saw the healthcare gap.”
Kueny is unequivocal about the value of this kind of undergraduate research: “Until students work on these sorts of projects, they rarely really understand what it means to start with a research question or a question about how things function, then go into the minute details of handling the procedures of data collection, then analysis, then the write-up, which often becomes a book chapter. It becomes the knowledge that they read about in their textbooks. And I think that whole cycle helps them see a bigger picture of knowledge and how you work inside your field and how your field changes and how even undergraduates can be a powerful component of what professionals learn about and how they practice.”
Cardenas and Kueny have created a brochure detailing their findings, and it has been used at hemophilia outreach clinics like one in which they and nursing major McKenzie Brace ’16 participated last fall. In addition to catering to families with hemophilia, the clinic provided dentistry, physical therapy, and various screenings. Brace observed specialists catching problems in family members early. She says, “It definitely opened my eyes to the power of preventative care—and to the power of treating a community rather than just an individual.”