During my internship at the CRESCENDO reference center in Paris, focusing on Silver-Russell Syndrome (SRS) research, I discovered a strong interest for the very complex field of pediatric health communication. Communicating sensitive medical information, particularly in the context of young patients was a challenge, but the incentive of bettering the lives of children and their families was a big motivation to me. This experience not only gave me practical skills in medical research but also taught me to navigate the ethical responsibilities involved in using information that impacts patients’ lives profoundly.
Silver-Russell Syndrome is a rare genetic disorder affecting growth and comes with many other important complications that can impact a patient’s lives drastically. As I engaged in communication tasks, such as explaining research findings to families, I realized the importance of clarity, empathy, and sensitivity. Children with SRS and their families navigate a journey and are faced with so many uncertainties. Thus, I learned that effective communication plays a pivotal role in providing support and fostering trust among this community, especially to families new to these challenges.
One of the most important lessons I learned was the ethical aspect of respecting patient confidentiality and privacy. Dealing with sensitive medical information requires adherence to strict regulations that protect patient identities and maintain trust within the SRS community. Every interaction demanded meticulous attention to confidentiality and informed consent.
Moreover, communicating with all of these diverse audiences, such as the medical professionals or the families still very new and unfamiliar to this genetic disorder, showed me how meaningful this line of work in health communication could be. To create tailored communication strategies – simplify complex medical concepts without oversimplification and addressing emotional concerns as well with compassion – by doing all of this I could participate in the empowerment of the families, by helping them to make informed decisions.
As I reflect on my internship, I am very inspired by the meaningful impact that health communication can have on patients. It has always been very important to me to do some kind of profound job that would better the lives of people. I hadn’t found my way of helping out, and this internship showed me that there are ways of helping out at your own scale – even indirectly – by assisting the doctors – can be extremely valuable.
Every interaction in this internship has reinforced my interest and want to work in health communication, especially with vulnerable populations like children with rare disorders.
In conclusion, my internship experience has equipped me with very valuable skills in working with ethically sensitive medical information. Moving forward, I will continue to apply these insights in order to contribute in a meaningful way to healthcare communication and research, so that every patient’s journey is supported with compassion and care.