Charleen Jacobs-McFarlane, PhD, RN, ANP-BC

The Center for Nursing Research and Innovation at Mount Sinai recently interviewed Charleen Jacobs-McFarlane, PhD, RN, ANP-BC, a Nurse Practitioner in the Mount Sinai Health System Adult Sickle Cell Program, who has published abstracts in Practical Implementation of Nursing Science focused on the knowledge gaps in sickle cell disease pain treatment and on the factors influencing the decision to seek curative treatment.

What drew you to sickle cell disease research earlier in your career, and what sustains your interest today?

I was drawn to sickle cell disease (SCD) research by coincidence when I had my first NP clinical rotation at Mount Sinai’s Sickle Cell Program as a student nurse practitioner. At that time it was a much smaller program, but there were some research projects going on that sparked my interest. While taking care of people with SCD there were many different phenomena that were occurring simultaneously—in particular, the physiological manifestations of the disease, the complex care management involved, and most importantly, the patient’s experience living with a chronic illness. I thought it would be best to enroll in a PhD in nursing program to gain skills as a nurse researcher and to be better equipped to pursue the unanswered questions I encountered.

Can you give an example?

A small number of the patients I cared for received a bone marrow transplant to cure the disease and alleviate one of the most prominent features of SCD—pain. However, while these patients were technically cured, some continued to have pain. They expressed to me that they felt lost and disconnected from the SCD community because they did not have SCD anymore, and they wondered if they made the right choice in curing their disease because of their continued pain. My dissertation focused on the experience of deciding to pursue curative therapies in SCD. I believe the findings of that study could help us clinicians understand how patients move through making such a life-changing decision and how we can be better equipped to guide them through that experience, and determine what resources are needed to support them along the journey. The patients are what continue to sustain my interest today, because there are so many unanswered questions and gaps in SCD research that need to be addressed. People with SCD continue to have poor outcomes compared to others. I believe that through continued research, we can improve the lives of people with SCD.

In your experience, how has your clinical work been informed by pursuing a PhD, and vice versa?

The longer I practice, the more I refine my research. And since my research in SCD focuses on specific clinical problems and nursing practice within this space, the direct application of my research informs my clinical practice. Pursuing a PhD has sharpened by ability to critically analyze clinical situations, identify underlying patterns and phenomena, and apply evidence-based practice more effectively as a nurse practitioner. My knowledge base in SCD care deepened as I found myself going to the literature more frequently to get answers and to seek clarity with complex cases to ensure that an intervention was grounded in research. Additionally, the rigor of the PhD program inspired me to take on a more analytical mindset while caring for patients, and opened a path for me to generate questions for future research and to imagine how I would approach answering those questions. But while my PhD was research based, there was a heavy focus on leadership and advocacy as well. Using the latest research to inform best practices, influence policy changes, and promote clinical innovation to advance care was of utmost importance, and I continue to make sure I am doing that in my day-to-day practice. Additionally, another clinical influence on my PhD was the opportunity to work with people with SCD, which was a huge advantage. I had experience, insight, and practical perspectives to inform my research. Working directly with patients and various members of the health care team allowed me to identify gaps in current knowledge and where I could focus my research and methodologies.

What strategies have you adopted or developed to balance your clinical and academic pursuits?

It all comes down to time management. I try to stay organized using planners and jotting down my goals for the week. On my clinical days, I am fully immersed in the activities of the sickle cell program. A large majority of my research questions come from clinical practice, and if something of interest comes up clinically, I write it down as a potential project to explore at another time. I have a running list of research questions that are saved in my notes for future reference. On my academic days, I try to focus solely on academic pursuits—no clinical work at all. The questions saved from my clinical days are researched on my academic days. Allocating specific days and times for clinical and academic work has helped me a lot in maintaining structure and reduces the cognitive load of switching between roles. My mentor, Jeffrey Glassberg, MD, advised me on the idea of identifying and prioritizing tasks that are of “critical importance” to achieving my most pressing goals. It has helped me clear a lot of mental clutter, refocus my energy on my research career, and identify parts of my clinical role that can be delegated to others. I started a post-doctoral training program earlier this year and, honestly, I struggled for a few months switching between both worlds. Over time the balance has improved, but it is something on which I am continually working.

How have your research interests been affected by working with an interdisciplinary team at Mount Sinai?

I am fortunate to collaborate with an interdisciplinary team of clinicians who are also National Institutes of Health-funded sickle cell researchers. Their expertise and research achievements are inspiring and bring a culture of high academic and clinical standards to the program. Our interdisciplinary work focuses on delivering high-quality, equitable, patient-centered care for all patients with SCD. The collaboration between physicians, nurse practitioners, nurses, social workers, research staff, and others allows the team to gain invaluable insights from one another on how to best implement our research findings into practice. It creates a feedback loop for our team, and also helps ensure that my own research remains relevant and beneficial to our patients. Research does not get done in silos. Collaboration between team members is essential to advance the research and the care of people living with SCD. Being a nurse practitioner on such a dynamic team has highlighted how crucial this role is, as we often integrate research activities into our clinical work.

Your abstracts published in Practical Implementation of Nursing Science focused on the knowledge gaps in SCD pain treatment and on the factors influencing the decision to seek curative treatments—how did your clinical relationship to your patients help identify these topics, and what advice would you give to other nurses looking to develop a research question?

My advice for nurses looking to develop a research question would be to start with your clinical area of expertise or interesting things that continue to occur in your area. Because SCD is a chronic illness, and we follow patients through the continuum of care (inpatient and outpatient), I have developed long-term relationships with our patients and their families. They not only share their struggles, but also their successes in overcoming adversity while living with SCD. As I follow patients longitudinally, I am acutely aware of the lack of treatment options for chronic SCD pain, and while curative therapies are a hot topic, they remain inaccessible for many people with SCD. In “Descriptive Analysis of Buprenorphine Inductions in Adults with Sickle Cell Disease,” we investigate the small number of our patients with SCD who often have pain, repeated hospitalizations, and a poor response to the standard treatment with opioids who are in need of additional treatment options. Some of those patients were frustrated with the lack of pain control, and the use of buprenorphine to reduce acute care visits was emerging in SCD treatment. We were curious to see the outcomes of acute care visits and opioid use before and after starting buprenorphine at our institution. In “The Lived Experience of Deciding Curative Treatments for Adults With Sickle Cell Disease,” building on discussions about curative therapies with patients with severe cases of SCD, I found that while this population was aware of the severity of their disease, they often expressed feeling overwhelmed by the decision to move forward with curing their disease for a multitude of reasons, and they often had repeated conversations over months, and sometimes years, about being referred to a transplant therapist. There was some existing research on this phenomenon, but little that focused on adults with SCD and the complex factors behind making such a high-risk, high-reward decision. I sought to understand the reasons patients might hesitate in pursuing curative SCD therapies, and to identify the potential impact of clinical nurses and nursing leadership in the decision-making process.