This may be one of the coolest and most challenging innovator articles I have written yet! I want to make sure I give justice to this awesome group of nurses who came together with interest in one specific population and developed an idea that gives comfort and strength to the emotions and symptoms of this very underserved patient population. These five ladies come from different institutions, backgrounds, states, and educational and nursing experiences, but share one common interest, AYA patients (Adolescents and Young Adults) with cancer. Their interest in this group comes from their recognition that AYA are not the same as children with cancer or older adults with cancer. This population has unique needs. They are tech savvy and use their own style of language and communication. They like to be connected with others of similar age and experiences. So, who are these nurses, how does a group like this come together, and what is their idea?
What Have These Innovators Created?
These five nurses from 5 different parts of the country have come together to create an "IPad app that allows adolescents and young adults with cancer to share their symptom experience (presently at one time point) as they complete the app." The idea behind this is that they are able to
"See their symptom experience for themselves- which they have noted to be helpful in 'putting it all together' and thus, managing the symptoms they are experiencing"
"Have the ability to share it with others such as caregivers and healthcare providers so that they might help"
"At present the tool is used exclusively for AYA cancer patients (and a different iteration that was used in menopausal women) but we have had interest from others who manage other chronic diseases who see its potential utility in other groups as well."-notes Kristin Stegenga.
Who Are These Entrepreneurs?
Catherine Fiona Macpherson PhD,RN,CPON
"I am a staff nurse on an inpatient pediatric oncology unit and have been for my entire career. During my doctoral program at the University of Washington School of Nursing, our faculty encouraged us not only to contemplate what established path we might choose but to consider crafting our own path. My 3 dearest mentors Dr. Kristen Swanson, Dr. Pam Hinds, and Dr. Nancy Woods supported my desire to remain in clinical practice as a staff nurse while simultaneously pursuing clinical research as a nurse scientist, which is an unusual combination. I would advise other nurses to follow their passions and surround themselves with people who share those passions. During my formative years in my undergraduate program at the University Faculty of Nursing, I learned that as a nurse you could be whatever you wanted to be and do whatever you wanted to do, and that nursing as a service to humanity depended on innovation."
Suzanne Ameringer PhD, RN
"I am as associate professor at a school of nursing where I teach and conduct research. I have been in this position for nearly 10 years. Prior to this position I have practiced as a pediatric nurse in a variety of settings, including inpatient and outpatients units, pediatric primary care, and public health. After many years of practice, I decided to go back to school and obtain a PhD so that I could conduct research on issues that I found most troublesome in practice. Some current barriers in my position are the significant amount of resources (e.g.' funds, university infrastructure, personnel) it takes to conduct meaningful research. While working on my masters, I met a nurse researcher who would eventually be my mentor. Her work was in pain management with adults, and I thought about how I wanted to make a difference for adolescents with cancer and sickle cell who experience pain. This experience led to my decision to get a PhD and conduct research with this population. Dr. Sandra Ward was my mentor in my doctoral program and she was an excellent role model of a successful scientist. Dr. Deborah McGuire has been a role model and mentor these past 4 years and exemplifies how to be a senior faculty member and scientist. I have felt very fortunate to be with these amazing individuals".
Jeanne Erickson, PhD, RN, AOCN
"I am currently on the faculty at the University of Wisconsin-Milwaukee College of Nursing. In this academic role. I teach undergraduate and graduate students and maintain a program of research related to symptom management of adolescents and young adults with cancer. I have been an oncology nurse for my entire career; I have had positions as a staff nurse, clinical nurse specialist, nurse educator, and I previously taught at the University of Virginia before moving to Milwaukee 3 years ago. The barriers that I face today are related to conducting research in an academic health system where I am not formally employed. I need clinical partners to help me navigate the systems where I recruit and enroll patients for my research studies. I encourage other innovators to keep a list of research questions and ideas that interest you. Find opportunities to discuss your ideas and interests with colleagues who share similar interests, but also be open to discussing your ideas with others who are different from you or who have a different set of skills or perspectives. Nurses need to develop partnerships and work on interprofessional teams in order to bring about that are needed in health care. One of my personal career role models is Dr. Pamela Hinds is a nurse scientist whose work has made a difference to nurses and to young patients with cancer. She has been a mentor to many nurses, educators, and researchers, and she inspires me with her intellect, productivity, generosity, and warmth."
Lauri Linder PhD, APRN,CPON
"I am an Assistant Professor at the University of Utah College of Nursing. My position also includes a 20% appointment as a Clinical Nurse Specialist with the Cancer Transplant Center at Primary Children's Hospital. I have actually been working at Primary Children's since I graduated with my bachelor's degree in 1989. In 1996, I moved to a joint appointment with the College of Nursing to serve as a clinical track faculty member teaching pediatric clinical nursing to our undergraduate students. After finishing my PhD, I accepted my current tenure track position in 2010. For me, my clinical practice drives my research questions. Remaining immersed in the clinical setting keeps me current on clinical practice issues and positions me as a team member for conducting my research. It can at times be challenging to balance expectations and responsibilities at both sites. I am fortunate to have leadership teams who support this joint appointment at both the academic and practice settings. As for role models, two individuals come to mind. I first became acquainted with Dr. Pamela Hinds work during my master's degree studies. I actually became a participant in one of the studies she was supporting. Throughout the years Dr. Hinds has become a mentor and role model both in terms of the quality and quantity of her research and the manner in which she invests in the up-and-coming generations of nurse scientists. Dr. Nancy Woods became a mentor in 2010. Although the primary focus of her research is in a separate population, she has invested in our team with our shared interest in symptoms and symptom clusters. She has challenged our team and served as a source of encouragement."
Kristin Stegenga PhD, RN, CPON
"I am a nurse researcher at Children's Mercy Hospital in Kansas City. I have always worked in hematology/ oncology/bone marrow transplant. It is the one thing I said I would never do when I started nursing school but I found that I had a passion for kids and teens with cancer and never looked back. I recognized early on that there was never a good time to get cancer but the teen years were particularly bad! I also realized that I had a lot of questions about why we did what we did and how we could help our patients more. I think we need to recognize just how important we are to solving the issues that surround health care. Often people think of nurses as somehow secondary in the healthcare world but our position so close to patients makes us so very primary that we may well be positioned BEST to understand what is needed to provide safe, meaningful and cost-effective healthcare in the future. Funding for research is tight and so it is hard to do all the important research that needs to be done. The work we are doing now has come from as a group has been funded three different ways in smaller bits. With tight funding, you also find yourself tight on time. You find yourself doing much of the work yourself because there isn't money to have a lot of help. I love the interaction with patients 1:1 but I do most of my own work so I track patient appointments, do data collection and work with the research team across the country all in the same workday! My mentor Dr. Pam Hinds has been instrumental in helping me learn to be an excellent nurse and nurse researcher. She has been my role model ever since I met her!"
How Did This Group of Innovators Come Together?
They all got together bit by bit. Some knew each other from working on their PhD's at the same school, some knew each other from the same nursing organizations, APHON and ONS. They noted that they had similar interest in symptom management and the AYA population, and began to come together.
Some of the reason that they came to work together is, shared interest, some is that they really enjoy each other and the different strengths they bring to the table and some is the realization that group is not large, so cooperation is key to reaching the population. "Together we are incredibly strong and apart, it would take us a long time to get this kind of work done, both because we are individual researchers at individual institutions and because the populations are so small at most places."
Why the AYA Population?
"What we are seeking to do with our work is to meet AYA in their own realm, with technology because they are tech savvy, and language that is appropriate to their world and recognition that they are just starting to become aware of their symptom experience. We want to give them the tools to make sense of the experience for themselves and to make it possible for them to reach out to those around them as they want/ need to in order to manage their cancer experience in the best way for them", notes Stegenga.
This is a fantastic example of innovation, teamwork and collaboration from different areas of knowledge and expertise. These 5 nurses have found each other through shared experiences and professional organizations, and what was born from this is a voice to an often lost group in the medical world. What an amazing blessing to those AYA who are able to reach each out to each other in a way that would never have been possible before this group of minds came together. I have been so eager to share this story with readers and my own daughter as a spectacular example of women in science AND nursing as well as the capabilities that result from innovative, brave, strong minds coming together!
From Left to Right:
Fiona Macpherson, Nancy Woods (mentor), Kristin Stegenga, Lauri Linder, Jeanne Erickson, Suzanne Ameringer, Pam Hinds (mentor)