In Appalachia, Building Relationships is Key for Women’s Health Providers
Penn Nursing’s Center for Global Women’s Health raises health awareness in West Virginia
by Michele Berger
On Bonnie’s Bus, parked in a lot at Camp Caesar in Webster Springs, W. Va., Chana Schaffer is in a bit of a bind.
The University of Pennsylvania midwifery graduate student is visiting this small Appalachian community as part of a service-learning project spearheaded by Wendy Grube, director of the Center for Global Women’s Health and a School of Nursing associate professor. Schaffer’s all set to perform cervical cancer screenings and examine women when the generator in the mobile mammography unit shorts, leaving her and her colleagues without power.
Undeterred, Schaffer improvises.
Mammograms are out; without electricity they simply can’t happen. But pap smears only require the right light.
“I ended up using a flashlight. I had a headlamp in my pocket. We also had a flashlight, which seemed to be the brightest,” she says. “Wendy held the flashlight and I did the exams.”
Schaffer downplays the measure, brushes it off as what any determined health-care provider would do. Then she expertly veers the conversation toward the patient connections she made.
“What I really loved more than the actual act of doing the exams — which as a student, of course, it’s a great learning opportunity — was being able to talk to the women.”
In the nine years that Grube and groups from Penn Nursing have traveled to West Virginia, the Cervical Cancer Prevention Coalition has morphed into a project centered around such relationships. Sure, 20 or so students from the women’s health nurse practitioner and nurse-midwifery programs offer their clinical skills, providing free exams and screenings. And it’s true that two years ago, the participants added a “Ladies’ Day Out” that includes a large plenary talk in the morning and afternoon breakout sessions. But on this annual trip to one rural, underserved part of America, they get as much as they give.
“I really don’t believe in academic voyeurism,” says Grube, who started the program in 2008. “If I’m going into a community it’s got to be providing something that they need, not just serving my own purpose. This happened to fulfill both.”
The opportunity came by way of the Centers for Disease Control and Prevention. The agency tracks national data about who dies from which diseases where. In the early 2000s, the CDC determined that Appalachia had higher death rates from cervical cancer than corresponding numbers across the country and, in response, opened additional free clinics there. Unexpectedly, and despite the effort, screening numbers dropped.
Challenged by the CDC data showing a distinct health disparity in West Virginia, Grube designed a research study in which she spent four months living in the southern coalfields. This work revealed a complex array of sociocultural circumstances that kept women from receiving cervical cancer screenings. For several years, she had traveled there frequently to present at medical conferences about cervical cancer and human papillomavirus, so she already had some sense of the situation’s complexity.
“I decided to approach this from the perspective of an anthropologist rather than a medical person or a statistician,” she says. “We knew where the problem was. We knew what the problem was. We just didn’t know why.”
During her stay, she learned a great deal about the people: Communities are extremely tight-knit and warm, despite a poverty rate of more than 30 percent and an average family income hovering around $25,000. Religion plays a big role in the lives of individuals and to the overall society. Before the Affordable Care Act many women didn’t have insurance and those who did had almost zero options for providers specializing in women’s health.
Perhaps most crucial of all, Grube began to understand the importance of trusted clinicians in getting people to participate in preventive care.
“I got to look at how complex this really is. It’s not just, ‘If you build it, they will come,’” she says. “A lot of providers there are temporary, completing requirements for paying back school loans but having no real commitment to the people or the community.”
Grube began watching communication from the Appalachian scholarly network. She came across a request from a social worker for experienced health-care professionals who could help with a local health fair. That was an ideal entre into the community; a group of Penn Nursing students got involved, presenting on topics like breast and cervical cancers. At the end of the fair, an impromptu conversation broke out.
“The women in the community wanted to talk to the students. They were giving their personal experiences about reproductive cancer screenings. They were being so candid and fabulous,” Grube recalls. A student asked what would prod them to seek care, and one replied she would do it if Penn Nursing returned. Others chimed in their agreement.
“We did do that,” Grube says, “and we’ve done that for all of these years.”
Schaffer, the flashlight-yielding midwifery student, went on the trip this past March, along with Alexis Pitcairn, who graduated in August from the women’s health nurse practitioner program and was the project’s most recent student liaison. Pitcairn says part of the intrigue of Penn Nursing as a program had to do with this service-learning opportunity.
“One pap smear isn’t going to do that much in the larger scale, but this kind of ongoing relationship with Wendy and with Penn Nursing…” Pitcairn trails off. “I don’t think a single pap smear or me personally going is what matters. It’s the ongoing relationship and the support of people that’s needed to come to more sustainable solutions.”
If the students are the blood pulsing through the body of this coalition, maintaining its momentum, then Grube is its heart and soul. “She has very deep roots in that place,” Pitcairn says.
It’s a sentiment Schaffer echoes. “Wendy is very invested in her work in West Virginia,” she says. “It’s inspiring to me as a student to see what she does, the impact that she’s made over the years and the relationship that she’s developed with this community.”
For her part, Grube is unwaveringly proud of the program’s role in helping vulnerable populations and exposing Penn Nursing students to rural communities, but she barely takes credit for it. Instead, she gushes like a proud parent about what the students accomplish when they participate, the respect they show the people they treat, and she looks ahead to what else they can do.
To this spring’s program, she plans to add legal representatives and those in the financial industry to discuss topics like a woman’s rights after she leaves an abusive relationship and different opportunities to earn a living. She’d also love to incorporate dentistry, make the fair even more of a one-stop-shop for the busy women of Appalachia.
“This is multi-factorial, it’s very complex, and, if we’re going to make an impact, we have to develop relationships with people in communities that are long-standing, that are trustworthy, that are dependable and reliable and subsidized to get women to engage,” Grube says. “I’m hoping that will make some change.”
Back on Bonnie’s Bus, Schaffer completes the pap smears, then heads over to listen in on a discussion about menopause. She feels content, honored to have been welcomed into such a place. Even lacking power on the mobile unit, the Penn Nursing participants did what they came to do, increasing the knowledge of the women in the community and empowering them to protect their health.
Michele Berger is a science news officer at Penn’s Office of University Communications