As someone who has been a cystic fibrosis nurse practitioner for many years, I've witnessed a lot of changes when it comes to our understanding of the disease and how we treat it. Perhaps one of the most noticeable examples of this is infection prevention and control (IPC), which has come a long way since the CF camps of the '90s. It is no surprise, then, that the recent Five Feet Apart movie trailer has been raising some questions about IPC and IPC hospital policy among the CF community.
But first, let's start with the basics. Germs are everywhere. They can spread by shaking hands, hugging, or kissing, and by touching something that already has germs on it like doorknobs, computers, cups, or pens. When people sneeze or cough, they can also spread germs -- as far as 6 feet, in fact -- which land on surfaces and can sometimes stay in the air for hours for other people to breathe in.
For people with CF, being close to others with the disease puts them at greater risk of getting and spreading dangerous germs and bacteria. This is known as “cross-infection." Depending on the situation, cross-infection can lead to worsening symptoms, lung function decline, and even death.
Because of new knowledge and information about CF pathogens (i.e., bacteria, viruses, or other disease-causing agents), a multidisciplinary team of CF experts -- including a person with CF and the parent of a child with CF -- met in 2013 to update the Guidelines for Infection Prevention and Control. The recommendations that came out of this included:
- All health care professionals caring for CF patients should wear gowns and gloves regardless of the hospital setting
- People with CF should wear a surgical or isolation mask in all common areas of the hospital, such as hallways, elevators, and waiting rooms
- People with CF need to be at least 6 feet apart in all settings
- People with CF, their families, and friends should use either alcohol-based hand rub or antimicrobial soap and water to clean their hands before and after entering hospital or clinic rooms, doing procedures like pulmonary function tests (PFTs), and after coughing or touching common items throughout the hospital
As CF care team members, we felt it was very important to empower and educate our patients and families about these updated guidelines and the implications they would have for them both in and out of the hospital. To ensure we were hearing their voices, we included a patient and several parents on our committee to figure out how to best implement these changes. They were the ones who reminded us about putting masks at many different entry points to the hospital, helped us communicate the changes via a special edition newsletter, and guided the education process.
We also provided a special “pass” that people with CF could show to anyone in the health care system outlining the need for contact precautions (i.e., the use of gowns and gloves), explaining why they should be placed in a room when possible to keep a safe 6-foot distance from others with CF, and highlighting the importance of environmental cleaning.
The upcoming Five Feet Apart movie, which is about the lives of two teenagers with CF, touches on how people with CF are affected by the many rules and requirements that go into IPC -- especially in the health care setting. Oftentimes, people are not always aware of all the changes that CF centers and their hospitals made to implement these guidelines and to continue to make sure they are followed today.
Although the IPC guidelines can add to feelings of isolation and make it more difficult for people with CF to connect, I am happy to say that many CF centers have developed strategies such as online social networking, support groups via Skype or FaceTime, and CF blogs. In addition, CF Foundation programs like CF Peer Connect and virtual events provide space for people with CF and their family members to build relationships in real time with those who understand their experiences best.
At our center, we recently had a family ask about taking their preteen daughter to see Five Feet Apart, as they were concerned about the possibility of multiple people with CF being in the same movie theater and whether it would be appropriate for her age group. To help address these fears, we suggested that parents and family members could go and see the movie first and then rent it at home with their children or teens with CF a later time. We are also thinking about having a live Facebook event at the end of the month to encourage people to ask questions and clarify any confusion.
As we know with TV shows and movies, some of the story may not be depicted in the same way as what you may experience at your CF center. There can be several ways to accomplish the same recommendations or guidelines.
That's why I want to empower you as a patient, family member, or friend to ask your CF team about what you have seen or read if it was different than what you have experienced.
After all, this is the perfect opportunity for you to ask your care team the “difficult questions,” start a conversation, and ensure that you are receiving the best possible care for you.
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