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Managing the CF Care Team & Caregivers’ Relationship

As a caregiver, managing relationships with the CF Care team of a child or person with CF can be a challenging dynamic. It is a delicate mixture between of trust, honesty and communication.
We asked our CF caregiver contributors to share their opinions about this topic and here is what they say about it:

“As a CF caregiver I think the number one priority in cystic fibrosis care is both yours and your child’s relationship with your team.
Establishing a trusting relationship through open and honest conversations has many benefits including medication and treatment compliance and lower anxiety, leading to better treatment outcomes.
It is important to do your research beforehand, educate yourself and have any questions and concerns you might have ready with you for your clinic appointments, let your team know what your plan is and why a specific treatment may or may not be working. This keeps the lines of communication open and equally important is to keep up your end of the bargain.
Trust in any relationship is a two-way street and if your team is making the effort to gain and keep your trust, you should follow your team’s guidance.
Lastly but certainly not least, just like old saying goes “Honesty is the best policy”. Being completely honest with your team will help better facilitate the correct diagnosis and treatments, reducing stress and helping your doctors provide you with the best quality care you deserve.”
– Melissa Gaudenzi (Mother to a teenager living with CF)

“First off know it is always scary and uneasy at first to learn to trust someone when it comes to making medical decisions with your child.
My biggest piece of advice is you know your child best and are their biggest advocate. Don’t always just agree to what the clinic team might say or suggest. If something makes you uneasy or you have questions speak up.
By being an advocate you become a part of the clinic team’s decisions and you work together as a group. By working together you become a team and the process is smoother.
We are very fortunate to have an amazing clinic team and I do not see them so much as a team but as a family. I think spending so much time with them and getting to know them has put me at ease. I know they have my daughter’s best interest at heart and it makes the process that much easier. “
– Rachel Newell (Mother to a young woman living with CF)

“As a CF caregiver, a good relationship with the CF care team is one of the most important relationships in my life. Probably even more important than my relationship with my children’s teacher, which says a lot.
I need to trust the team, and lucky for me I do have a team I can trust. I honestly don’t know what I would do if that were not the case.
Clinic visits can go by so fast, so I try to ask as many questions as I can while I am there. Any knowledge you can take home from clinic, whether it’s an updated physio technique, or a new symptom to look out for (or not be worried about!), can be very helpful for everyday life.

My clinic team has given me the confidence to make some decisions on my own at home, which can save everyone time in the end. I constantly inform them of what new trends are happening outside in the CF community. There is always something I’m hearing about… essential oils, pets, splash pads and pools, probiotics…no matter how silly these questions may be, I feel it’s really important to let them know what is being talked about outside the walls of the hospital clinic, and get a medical opinion on these latest tendency’s.
My goal is to always have that open line of communication, and be truthful about what we have been excelling at, or slacking at. At the end of the day, we all play a major role in caring for our CF patients, whether we are a parent, doctor, nutritionist, or physiotherapist, and the best way to benefit from each area of expertise is to listen, learn, and apply what we are taught.”
– Sasha Haughian (Mother to two children living with CF)

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