Closing the Gap: Knowledge and skill acquisition through nursing leadership in support of intracerebroventricular therapy in the Neuronal Ceroid Lipofuscinosis Type 2 population
Summary
My overall learning goal for my RNAO ACPF was to build leadership skills, increase my educational development skills, and through this work, position myself as a nationwide expert in the nursing care of Neuronal Ceroid Lipofuscinosis Type 2 (CLN2) patients through Brineura® therapy. Through this fellowship I had the pleasure of establishing a national standard of care for Brineura® therapy by creating a SickKids branded e-learning module intended to distribute to new hires, and nationwide healthcare facilities to teach the nursing management of Brineura® therapy. I also spent time crafting our hospital’s policy and developing two online information documents to be housed on www.aboutkidshealth.ca.
To begin, I was able to improve my educational development skills by conducting a thorough review of the literature and a needs assessment. I was able to establish differences between our practice and current recommendations from other centres worldwide, and consulted with experts at SickKids (infection control, risk management, etc.) to determine our plan of action going forward. I spent a good amount of time networking with key leaders in the field (MDs worldwide, drug companies, foundations, etc.).
Next, I spent time developing an understanding of how to build an educational module by speaking with professionals in the Learning Institute at SickKids. I hired SickKids Creative Services to assist me in producing two original digital illustrations, photography of our procedures, and a professional instructional video. Finally, I produced an e-learning module and am awaiting the digitization of this module by the Digital Learning Program Manager.
I was able to increase my leadership skills through becoming a champion of intracerebroventricular Brineura® therapy at SickKids, networking with members of the interdisciplinary team at the hospital, and with organizations nation, and world-wide. I was asked to present at a Rare Disease Symposium in December and will be present at SickKids’ upcoming Pediatric Neurology conference. I am also currently working on creating a case report alongside our Neurology Nurse Practitioner to publish our recent work involving treating Ommaya port infections in a way not described in current literature. This program has been an incredible experience of personal and professional growth.
Outcomes
One of the major outcomes noted by this fellowship has been a significant increase in trust from families in our hospital’s abilities to care for their children. I have heard from parents of most of our families that they feel relief knowing that our practices have been vetted, researched, and are backed by solid evidence and updated approvals from key stakeholders within the organization.
During my fellowship I also came across a new pediatric filter that, due to its smaller size, decreases the number of times the line is accessed during treatment, decreasing the chances of infection.
Thanks to my protected fellowship time, I was able to produce two documents for our family-oriented website www.aboutkidshealth.ca outlining in layman’s terms what CLN2 is, and what Brineura® treatment at SickKids looks like. Families now have a trusted pediatric, Canadian, resource to turn to for information when newly diagnosed.
Through the establishment of a standard of care at SickKids, hospitals nationwide will now have a resource on which to rely for information as they establish their programs. This program will improve knowledge transfer and skill acquisition to hospitals who have never administered Brineura® treatments. I expect that the establishment of a national standard of care, and together with this e-learning module will allow patients to access treatment much quicker than before. Hospitals nationwide now don’t have to create a new program when taking on new CLN2 patients but can rely on our research and experience when onboarding new patients. This establishment of a national standard of care will improve the family and caregiver experience during the establishment of care. Families will no longer have to turn to online platforms such as Facebook chats to determine what other centres across the country are doing.
The major organizational outcome of my fellowship was how SickKids has now been established as a leader in the care of CLN2 Brineura® treatments nationwide. As an example, we were recently in contact with Children’s Hospital of Eastern Ontario as they had a potential patient arriving to them, and they turned to us as a resource. With this e-learning module, hospitals nationwide have a trusted source to whom they can turn to as they establish their new programs. As a result of being the face of this project, I have been propelled to the forefront of the field as an expert on the nursing care of CLN2 patients.
The establishment of our institution as a voice of authority on the subject has increased trust between families and the hospital. Prior to this, families anecdotally felt that we were sometimes “flying by the seat of our pants”. While our practice has previously been based on scientific evidence, it was good to solidify and formalize the work we have been doing since the start of our program. It was also very important to do a deep dive into the literature to ensure that the work that we are doing on 4C is up to date, and still meets current IPAC standards. Working through this fellowship, I have been able to establish much greater communication and improved networking with other organizations worldwide who perform Brineura® treatments. I was able to present at the Rare Disease Symposium (through the Isaac Foundation) and will be presenting at SickKids’ upcoming Pediatric Neurology Conference. These experiences have not only helped increase my confidence and leadership skills but have also allowed SickKids to liaise with other key stakeholders worldwide such as MDs from Children’s Health of Orange County (USA), Nationwide Children’s Hospital (USA), the University Medical Centre Hamburg-Eppendorf (Germany), the Isaac Foundation and Cure for Claire.
The creation of the e-learning module will be used in our upcoming new hire orientation to ensure that they are receiving concise, up-to-date, consistent and standardized information across the board. This will streamline their orientation to Brineura® treatments and will lighten the load on their preceptors.
Overall experience
This fellowship has been an absolute blessing to have been granted. I have been privileged to make so many incredible networking opportunities and solidify connections with experts in the field. I have gained confidence in my abilities to reach out and make said opportunities as well. Before I would have thought “who am I to reach out to this prominent expert?”. Now I know that experts in their field LOVE to talk to others about the topic they’re passionate about! They love to see other people passionate about their area of expertise.
I have been continually amazed by the fact that reaching out and trying to do something new and scary has led to so many wonderful opportunities and new learning. If an opportunity presents itself, TAKE IT! What is there to lose? You may just surprise yourself with your abilities. Impostor syndrome is real, and I have realized that if you push through with a little bit of faked confidence, you can find yourself in new and wonderful places you never would have reached otherwise, learning things of yourself you never knew before. Seizing this opportunity has allowed me to stretch my leadership wings far more than I ever could have without it. I am now our unit’s “go-to” person on the topic and will be the “go-to” person for hospitals nationwide looking for more information on the nursing care of CLN2 patients. While I never wish the diagnosis on anyone, I am excited about future opportunities to help other centres develop their programs, and therefore helping kids across the country receive the treatment and care they deserve.
Some other highlights of my fellowship include being asked to speak at the Rare Disease Symposium put on by the Isaac Foundation. I was incredibly honoured, and flabbergasted that they asked me, but found my presentation was beloved and appreciated by all! I had so many people reach out with appreciation for my work.
It has been a beautiful thing to watch my unit surround me with pride, love, and support for my work. My manager was nothing but supportive, enthusiastic, and helpful in every step of the way. My heart was warmed with how my going out on a limb was lovingly uplifted by my team. Women supporting women—one of my favourite things in the world.
Working with my primary mentor Elisa Nigro has been such a blessing. She is such an absolute wealth of knowledge and is my #1 cheerleader. She has become not only a coworker but a cherished friend. Another example of women supporting women! I look forward to working with her closely going forward. I am especially excited to participate in her case report on the groundbreaking antibiotic treatment of a recent port infection in the coming months. She has been a wonderful support and has taken me under her wings every step of the way.
Creating a 5 min professional instructional video, including a voiceover track was another lighthearted highlight for me. Working with Creative Services through the hospital in their film studio, reading from a teleprompter, and doing things I never would have dreamed I would be doing when I went into nursing was so much fun.
A bittersweet moment of my fellowship was early on finding out that despite my contacts and communications with BioMarin (drug company) about my fellowship prior to my start date, BioMarin had already put out an instructional video very similar to what I was planning on creating. This was a slick, high budget version as well. I was crestfallen. I spent time consulting with my manager and primary mentor Elisa and figured out how to pivot my work. It helped me to really focus my work on the nursing care of CLN2 patients and fill in some of the gaps the BioMarin video left. In the end it stretched my creativity, resilience and in the end made my project even more focused. I came up with a better product because of this setback.
If I’m being perfectly honest, when I first started, my main goal was to advance the medical community through my work. I wasn’t that focused on my own growth and learning. I am typing this with tears in my eyes, saying that I have received so, so, so much more than ever expected coming out of this. I have created an incredible piece of work that I am SO proud of that will help the medical community, but I have gained confidence, grown as a human being, grown as a nurse, created deep friendships and connections, networked, and have been blessed by such support I am honestly blown away. I am forever grateful to the RNAO for providing me with such a wonderful opportunity. Thank you, a hundred times over.
