For many with cystic fibrosis, balancing life with daily CF treatments can be hard. Talking about it with your CF care team can also be tough, especially when you're afraid of letting others down or being judged for “non-adherence.”
This is why the Cystic Fibrosis Foundation brought together adults with CF, parents, researchers, and care team clinicians to promote helpful conversations between people with CF, their families, and care teams to better understand and address what it takes to sustain daily CF care. They call this effort Partnerships for Sustaining Daily Care (PSDC).
Recently, we were invited to present this work at five Family Education Days across the country. While visiting these care centers, we heard from adults with CF, families, and care teams about how they talk about sustaining daily CF care.
Here's some of what we heard:
- Relationships between people with CF, their families, and care teams are strengthened when they recognize each other's unique roles and expertise, working together as a team.
- “A partnership is where we all work together to maintain [my son's] health. Ideally, it's a situation where our care team views us as part of their team. … They are our coaches, cheering us along and providing us guidance as we need it, while we do the heavy lifting and understand life with CF.” -- Mother of a young son with CF
- “All of us work together to develop the most effective treatment plan. The team listens to my daughter as well as me, considers the amount of time it takes to do treatments, and takes both of our feedback into consideration.” -- Mother of two daughters with CF
- Taking the time to understand what it's like to live with CF is appreciated and encourages a shared humanity.
- “I like making a daily schedule because it shows the huge time commitment.” -- Adult with CF
- “We only see part of someone's life with CF, so we invite them and their families to share more about what they're doing, their tips and techniques, and their expertise.” -- CF clinician
- “I appreciated knowing that the team realized the difficulties of living with a child with CF and the time it takes to do all the things involved in taking care of her.” -- Parent of child with CF
- Little moments matter.
- “Little moments show that you care. For example, knowing that I am in college or that I just had a birthday, introducing yourself when you walk in the room, asking me how I am doing, and showing that you are listening make a big difference.” -- Adult with CF
- “When my kids were really little, … I would appreciate when the team would come in the room and ask me how I was doing. I was a new mom with a young baby, and I really appreciated that.” -- Mother of two children with CF
- People with CF, their families and care teams share a common goal, that is to improve the quality of life for people living with CF.
- “My CF care team is more than just a group of doctors and nurses. They have become people I call family -- people my family now calls family.” -- Adult with CF
- “At the end of the day, we want to see what's best for the family. Their success is our success. We care about what is going on in their lives that isn't related to their CF. We get sad when they get sad, because we want to see the best for them.” -- CF clinician
- Partnerships happen when people can be open and honest about what's going on in their lives.
- “I believe focusing on open lines of honest communication is the key. Break the 'doctor-patient' barrier of 'We'd better tell them what they want to hear.' Instead, say 'this is the way we are' -- don't judge!” -- Parent of child with CF
- “I go to our doctors and say, 'I'm not comfortable with this plan, or have you thought of that plan? Could you explain this to me?' They are very receptive and willing to listen and provide their medical expertise.” -- Mother of a young man with CF
So, what does this mean for our community?
What we heard added to our understanding and will be used to move this work forward. We will conduct research over the next several months to learn how conversations about daily treatment plans between care teams and people with CF and their families can be supported. We are also developing solutions that work in the real world through the Success with Therapies Research Consortium -- a need the community expressed at each of our visits.
Together, we will find the tools and resources necessary to support individuals with CF and their families in managing daily CF care. Our collective learning as a community is just beginning, and we hope you will join us by sharing your own stories and ideas. We're listening at PSDCteam@cff.org.