Tips For Communicating With Your CF Care Team
Communication with your CF care team is more important than we realize. Sure, it’s necessary to report sickness and enlist their help for treatment--but that's just the tip of the iceberg. Research shows a correlation between positive doctor-patient communication and adherence to treatment, daily functioning, and sense of control.1 In my opinion, open and effective communication can improve your overall well-being and perspective living with CF.
About my CF clinic
My experience may be unique having attended the same CF clinic since my diagnosis at 4-years-old in 1995. Over the years, I have gotten to know my clinic pretty well. While some of the members of my CF care team have come and gone, the mission and care provided by my team remains the same. (Although, there are certain members who have been there for decades.) All that time at one clinic has helped me develop a respectful and supportive relationship with my CF care team despite different personalities, positions, and bed-side manners.
Ways to communicate with your CF care team
Most dissatisfaction in a doctor-patient relationship stems from a breakdown in communication.1 Many physicians overrate their ability to communicate.1 But, it’s not only one-sided: you’re more likely to reach out if there’s more than one avenue to be heard.
My doctor feels comfortable giving her cell phone number to her patients so that we can reach her whenever we need to. It’s made a huge difference in the likelihood of me reporting when something is wrong or I need help with my care. In response, I feel heard and cared for because there’s an easy and effective avenue of communication. Cell access might not be the case for every clinic and doctor around. However, remember to utilize all the avenues of communication with your CF care team such as:
- Face-to-face meetings
- Online health portal
- Clinic telephone calls
- Text message
- Notes brought to appointments
- Telehealth appointments
Better yet, ask your clinic what is the best way to contact them to get the quickest and most thorough response. I’m sure each team member would be happy to share what works best for them, personally!
Batting for the same team
One of the most helpful tips for communicating with your CF care team is to remember that you all bat for the same team. (The team name is Kicking CF A$$.) As teammates, you share the responsibility of working towards a common goal: maximizing your care, health, and quality of life living with CF. There’s a significant level of vulnerability, honesty, and respect you share with any teammate you encounter. The same goes for CF clinic if you want to win the game.
In order to be positive and effective teammates, try the following:
- Be open about your struggles--symptoms, adherence, mental health, family situation, etc.
- Don’t be afraid to ask questions
- Share your failures and triumphs
- Be flexible
- Be responsive to their requests
- Express gratitude for their help
More than just a patient
Although being open and forthcoming with your team may seem like a lot of hard work mixed in with your typical CF care, the payoff is worth it. Over the course of years, the constant stream of positive communication has made me more than just a patient, or billing ICD code, but a family member at CF clinic. They take into account how CF may fit into my life--my hopes and dreams as well. Communicating with your CF care team can spark a transformation from just patient to uniquely wonderful person.
What are your tips for improving communication with your CF care team? Share with the community in the comments below!
Have you had a flare on Trikafta?
Join the conversation