Wednesday, June 24, 2015

Clinical Rotations - Reflections from a Pitt GC student

Doing anything for the first time can be a challenge, and for many of us (especially novice genetic counselors) it can be difficult to allow yourself to make mistakes. At the end of April my classmates and I prepared to begin rotations. At Pitt we spend our first year in the classroom, and at the start of May through the following March we spend the vast majority of our time in rotations.  What this means for those of you who are perfectionists with high personal expectations, like me, is this: even armed with all of that new knowledge, you will not be an expert counselor when you walk through the door of your first or even your second rotation.

I spent a lot of time fretting over this concept, worrying and rehearsing what I would say (the rehearsing part is actually very helpful!). I went into my first rotation nervous and a little afraid; I wondered often: what if I say the wrong thing? What if I scare the patient? Or worse, what if I make them cry? My first day counseling patients was definitely frightening, and I certainly was not an expert. I stumbled through my first explanation of chromosomes, and my explanation of how a patients’ family history can contribute to their risk is still evolving. What I did learn is that we all have to start somewhere, and if you are afraid to be a beginner you can’t learn anything new either. I also found that the counselors are there to help, and I have felt this from each counselor I have come across. They give excellent feedback and are sincerely invested in our success. They often helped me craft a better way to explain things when I got stuck; they were also open and willing to share their own struggles as a student.

In short, I survived and so did all of my patients. In the process I also learned quite a bit about how to counsel patients, tears and all. Even more importantly, I found that when I didn’t take on something new I felt a little stuck and uncertain. Trying new ways to explain concepts helped to boost my confidence, and I was excited to see the next patient so I could try out my new skill. Many of us enter this field because we want to share what we know with others to help them make decisions, but the trick is that we have to allow ourselves to be new, to accept that we do not know everything, and that if all else fails, the counselor is there as a safety net.

-Nikki Walano, class of 2016 

Friday, June 5, 2015

NYMAC Summit 2015

I was very fortunate to attend the New York-Mid-Atlantic Consortium for Genetics and Newborn Screening Services (NYMAC) Summit 2015 from May 28-29 in Baltimore, MD. NYMAC is one of seven regional collaboratives within the United States that aims to improve access to genetic services for families affected by heritable disorders.

More than 30 speakers including parents, genetic counselors, geneticists, physicians and other health-care providers, policy makers, and additional stakeholders such as public health professionals and LEND faculty presented a wide range of topics that focused on overcoming barriers that prevent individuals and families from receiving genetic services.

Some of the themes that emerged from the conference included improving interdisciplinary care for patients through better communication between providers, addressing language and cultural barriers that may prevent individuals from accessing genetic services, evaluating different educational resources available for families to improve their quality of care, implementing distance strategies such as telemedicine models, and using genetic technologies on a population-based scale.

I especially enjoyed hearing about family perspectives from parents who have a child with a genetic condition. These individuals have become extraordinary advocates for children with special health care needs and their families, and have been involved in creating resources and programs to help other parents and families. When designing new policies to improve patient care, it is essential to understand parental perspectives because parents are the main healthcare provider in their child’s “medical home”.

During the breakout sessions, I attended the Primary Care and Linkages Workgroup session regarding interdisciplinary care. We discussed inclusion and diversity, and the importance of self-perception when providers consider the definition of “cultural humility”. Faculty from the University of Pittsburgh discussed the LEND program as an example of how to incorporate genetic education and the concept of family-centered care into a training program for future health-care providers.

Lastly, it was impressive to see the collaboration between numerous different stakeholders, and the different roles that genetic counselors can have within this multi-disciplinary public health team.

My participation in the NYMAC 2015 Summit was made possible by the NYMAC-Genetics Public Health Fellowship program. This program provides graduate level education to genetic counseling and LEND students, in order to create future leaders in genetics, and improve advocacy for the translation of genetic information and services in the public health realm.

For more information about the NYMAC-GPH Fellowship Program, please email Kunal Sanghavi at ksangha1@jhmi.edu

 -Amy Davis, class of 2016