Q: There are many barriers patients face when they’re seeking adequate health care. What do those barriers look like and how can we help address them?
A: Discrimination is alive and well in a variety of forms, such as institutional racism and implicit bias. The devastation of slavery, Jim Crow laws, current inhumane immigration policies and other discriminatory policies and acts continue to haunt our communities, including our health care system. In the U.S., we’re near the bottom of the list in terms of health equity even though we spend the most on health care. There are large health disparities in patients of color based on decades of discrimination and inadequate care, which contributes to a distrust of the medical system and poor communication. When your health care provider comes from your neighborhood or has a similar background, though, patients may feel that the provider has their best interests at heart and trust can start to be rebuilt.
We also need a laser focus on fixing the inequities in our public-school systems. Children of color are more likely to be learning in overcrowded classrooms at underfunded schools with teachers who are often poorly supported. The cures and treatments for some of our nation’s most severe diseases are in the minds of children who are currently getting inferior education. When we invest in schools, we are investing in our health care system.
Lastly, as nurses, we need to look for opportunities to bring people in and actively diversify. We all know what it’s like not to be included, so we cannot pull up the ladders once we get over the wall. It’s a recognition of, “I am privileged, and not everyone has had the opportunities I’ve been given.”
Q: Speaking of education, how has your work shown that increasing students’ access to higher quality schooling can improve their lives — and improve their communities?
A: Ten years ago, there was a devastating earthquake in Haiti. It was an awful, traumatic event for the country and for the people who have experienced great trauma. I traveled to Haiti with a group of nurses and health care providers, and we were very inspired by the children we met, who were incredibly optimistic. We returned after the trip passionate about helping children with developmental disabilities in the country. In Haiti, these children suffer higher rates of malnutrition, discrimination and social isolation. They are rarely enrolled in schools. We went on a fact-finding trip to the country and saw an opportunity to implement a special needs program at a school in the city of Croix-des-Bouquets. Enabling Minds was founded as a nonprofit to aid in creating, coordinating and funding the program.
We hired a permanent teacher and three aides, partnered with dentists and physical therapists and teamed up with the Special Olympics for an after-school sports program. It really has changed how children with disabilities are treated in the community. The superintendent says it’s made everything better, and it’s a more fair, inclusive environment. Our Big Brothers Big Sisters® program has been so important in showing individuals without disabilities the abilities of these students, and it has shown them that these students can be important and influential members of the community. Most importantly, the self-esteem of the children with disabilities has improved immensely. Compared to staying at home all day, they now feel that they’re being included.
It’s now the seventh year of classes; our model has been replicated in another nearby Haitian school; and 75 children have had access to education, nutrition, physical fitness, agricultural education, field trips and a Big Brothers Big Sisters program in the Santos and Corail neighborhoods. Most are going to school for the first time in their lives, and we have raised nearly $100,000 to support these children, which has all been donated to their education.
Q: Your research is focused on an another underserved, often forgotten, segment of the population: family caregivers. How can health care providers work to improve health care outcomes for these members of our community?
A: Specifically, my research concerns family caregivers of patients with Alzheimer’s disease. Alzheimer’s can be a cruel disease, and family caregivers for adults with Alzheimer’s are some of our nation’s most unsung heroes. Caregivers give up so much to take care of their loved ones, and they can suffer a lot for it. Their health outcomes are often worse than those of non-caregivers, they commonly face tremendous financial strains from out-of-pocket expenses and from cutting back on work and they can experience significant stress due to caring for someone who needs a lot of support — and yet, there isn’t a lot of support for caregivers.
Too often, caregivers need to perform medical and nursing tasks they’ve never been trained for, which can be intimidating. I’m researching an evidence-based, advanced practice nurse-led intervention called the Transitional Care Model to see if it can help increase the self-efficacy of caregivers. As the older adult population is expected to increase, we’ll be facing an even worse crisis for patients, caregivers and our economy if we don’t actively address the looming crisis. Nursing has a huge role in mitigating this.
My goal is to highlight these champions and call attention to these caregivers who are saving the U.S. billions of dollars in year in labor. As health care providers of influence, we need to make the case to lawmakers for a moonshot-like investment into the cure of Alzheimer’s and focus on funding evidence-based interventions that alleviate the burden for caregivers.
Q: As vice president of The Pennsylvania State Nurses Association, how would you advise NPs on becoming better advocates for equitable, accessible, affordable health care?
A: First, all nurses and NPs should definitely register to vote and exercise their right to vote at each election, which are held at least twice a year. It’s also important to teach other nurses what our role is in advocacy. We’re taught when we take the oath that our goal is to look out for the welfare of our patients. That includes not just as a nurse in the clinic or hospital, but by advocating for them in the community and policy arenas. We don’t always realize our own power as nurses, but speaking up on behalf of patients and saying, “this is part of our duty to take care of these individuals,” helps legislators know what we need.
It’s critical to build working relationships with lawmakers and key stakeholders on policy and gathering support for health care reform. We don’t always realize the power of coming together, which is why I’ve helped lead an effort to unite our professional organization with other health care organizations. There are nearly four million nurses in the U.S. — that’s a huge force, and I don’t think we rally together enough. We are on the front lines of health care; we see what the holdups are, the issues patients are dealing with and what patients are asking for and need.
There’s also a lot of work to be done to address the lack of equitable care. Teaching implicit bias and trauma-informed care to all those who serve in health care roles is integral. For example, despite one in five patients in the U.S. having a disability, consideration for the care needs of these individuals is rarely taught in medical or nursing schools. For patients with disabilities, having a provider with an understanding of how to provide equitable care isn’t always guaranteed. I’ve developed lecture content that heeds the Centers for Disease Control and Prevention's (CDC) call to better train providers to care for persons with disabilities, and I am heavily advocating to get this training more integrated into nursing and medical school curriculum.
Q: Why is it important that we have diverse leaders — and leaders who support and encourage diversity and inclusion — in health care?
A: I think it’s important for people from minority groups to see that someone who looks like them can reach leadership positions and succeed. As persons who have faced oppression, they are more likely to understand social discrimination and be able to identify it and advocate effectively. Reflecting our diversity is not only about doing what is right; it gives organizations richer experiences and perspectives, and it puts them at a significant strategic advantage to solve problems and achieve innovative solutions.
One of the reasons why our nation is so strong and resilient is because we are a nation of immigrants and indigenous peoples. It’s our guiding moral principles, like “E Pluribus Unum” (Latin for “out of many, one”), and our unique ways of creating that make us collectively stronger. We want our patients, and our colleagues, from all backgrounds and abilities to be welcomed and included as the fundamental members of our health care community that they are.