As a child, Sue No was careful not to tell her parents if she was sick or injured. Her parents, Korean immigrants who were struggling to support a family on a limited income, did not have health insurance and could not afford health care without it.
When No was in middle school, for example, she put off getting care for her broken toes because she did not want to burden her parents with medical expenses. She did not tell her parents about her problem, even though she knew she needed medical attention. When her parents eventually realized how much pain she was in, they took her to a walk-in clinic, where she got a foot cast.
Growing up without easy, affordable access to the health care system spurred No to become part of it, first as a volunteer and now as an emerging nurse advocate. A fellow in the Robert Wood Johnson Foundation (RWJF) Nursing and Health Policy Collaborative at the University of New Mexico (2013-2017), No, BSN, RN, is working toward her PhD in nursing with a concentration in health policy. When she graduates, she plans to work to narrow health disparities and improve access to care. “Growing up without health insurance has influenced me to focus on identifying key health policy issues and solutions to strengthen and meet the nation’s health care needs,” she says.
No is not alone. Like so many others, nurses, too, have bad personal experiences with the health care system—or, in No’s case, outside of it. And while many of these experiences are trying and even tragic, occasionally they have a silver lining. Some nurses who have witnessed or overcome health-related challenges go on to become passionate and effective advocates for change.
Beth Ann Swan, PhD, CRNP, FAAN, is one of them. A dean and professor at the Jefferson School of Nursing at Thomas Jefferson University and an alumna of the RWJF Executive Nurse Fellows program (2007-2010), Swan is devoting time and energy to improving the system. She is raising awareness through the media, educating policy-makers and decision-makers, and more.
Two years ago, Swan’s husband suffered a stroke. That event thrust her instantly into the “unreal world” of coordinating her husband’s incredibly complex care and managing his many transitions in and out of health care facilities and home.
She calls the job a “Herculean task”—even for someone as highly qualified as herself—and shared her experiences in a 2012 narrative article in Health Affairs, a leading health policy journal.
The piece “struck a nerve,” she says. Swan received dozens of reader responses and opportunities to share her story in the Philadelphia Inquirer, Washington Post, Los Angeles Times, and other print, radio, and television outlets around the country. She has spoken about care coordination and transition management to a number of professional organizations and has drafted a policy brief she plans to use to educate lawmakers and their aides on the subject.
Fixing the System
“This story is not about our family,” she says. “It’s about fixing a system that appears to have an immunity to change...It’s about being the voice, speaking up for people who have no resources, no connections, no ability to navigate through a system.”
Swan adds: “I believe that as a whole, working together, we can create and sustain change.”
Cole Edmonson, DNP, RN, FACHE, chief nursing officer at Texas Health Presbyterian Hospital Dallas and another RWJF Executive Nurse Fellow (2012-2015), is also working to change the health care system.
Earlier in his career, Edmonson witnessed the effects of nurse bullying when a physician berated a colleague for making an error. The emotional abuse devastated the young nurse—and left an impression on Edmonson, who was involved in a similar situation the following day but was not treated in the same way by the physician. Edmonson has witnessed numerous incidents of uncivil and abusive behaviors between nurses over the course of his career.
Now an executive, Edmonson is committed to raising awareness, providing education, and preventing bullying in health care, a problem that he says is especially prevalent in nursing and that has profound implications for health and health care. Nurse bullying, he says, reduces productivity and causes nurses to resign from their jobs or leave the profession entirely. That leads to higher turnover rates, exacerbates nurse shortages, and ultimately undermines the quality of patient care. He strongly believes it is one of the greatest unrecognized threats to patient safety.
Evidence supports his view. New nurses who are verbally abused by nursing colleagues report lower job satisfaction, unfavorable perceptions of their work environment, and greater intent to leave their current jobs, according to a study of newly licensed registered nurses. The study was conducted by the RN Work Project, an RWJF-supported program, and was published online in the Journal of Nursing Scholarship.
To address the problem, Edmonson launched a movement to end nurse bullying and create more civil and safe working environments for all nurses. At the center of the movement is a website where nurses can share stories, recognize heroes, access resources, and request red wristbands that symbolize a commitment to end nurse bullying.
So far, he has collected more than 500 stories, both tragic and heroic, and has mailed more than 5,000 wristbands to supporters all over the world.
“It really has been a life-changing experience for me,” he says. “Most of these nurses just want to be heard. It’s been incredibly rewarding for me to listen to their stories of recovery and healing, and then to hear how they will help stop the cycle in nursing and health care”
Rosa Gonzalez-Guarda, PhD, RN, MPH, an assistant professor at the University of Miami School of Nursing and Health Studies and an RWJF Nurse Faculty Scholar (2011-2014), uses a different tool—scientific research—to create health system change.
Gonzalez-Guarda experienced dating violence in college and decided to join a research project addressing dating violence among inner-city Black middle-school children while in graduate school. Now a nurse faculty member, she’s been studying the subject ever since. “Working on that project and going through my personal experience at the same time made me interested in understanding all the cultural influences that come into play in healthy and unhealthy relationships,” she says. “It really changed the trajectory of my career.”
After graduate school, Gonzalez-Guarda, a Latina, returned to Miami, her hometown, and began researching violence in vulnerable populations. She is currently studying the link between substance abuse, intimate partner violence, and risky sexual behaviors among Latinos as well as culturally sensitive interventions to address these problems.
She is also leading a study to develop community-based domestic violence prevention programs for Latinos in and around Miami. “I didn’t feel I was able to provide evidence-based care for the Latino community because the evidence wasn’t there,” she says. “I realized that if I wanted to provide the best quality care, I needed to create the evidence myself.”
Like No, Swan, and Edmonson, Gonzalez-Guarda is turning a negative experience with health and health care into an effort to make positive change. Each is a nurse, and an advocate for change, too.