There is a lot you can do to prevent or manage procedural anxiety as part of your CF care. And, the good news is, you don't have to do it alone. You can start by:
- Discussing your previous experiences with medical procedures with your CF team, so that they understand what aspects of future procedures may be difficult and work on a plan with you
- Identifying aspects of the upcoming appointment or procedure that you can control
- Working with a child life specialist, mental health expert, or other members of your CF care team to develop skills to practice managing anxiety
- Taking medications as prescribed to help control pain or anxiety for specific procedures
Monique Wiegand, an adult with CF, pulmonologist Isabel Neuringer, MD, and Rachel Havey, mother of a child with CF, discuss how people with CF and their care teams can work together to manage procedural anxiety effectively.
If you think your anxiety is keeping you from getting the medical care you need, share your concerns with your care team. They have seen a lot of people with CF struggle with this and are there to help you. Be as specific as possible when describing your feelings.
“It's important for people to share what is happening on the inside so that we can help address that. That may be feeling comfortable saying 'I'm so anxious I can barely breathe' ... I might not be able to see that, and I want to know that. I won't know if your child didn't sleep very well last night because they were so worried about coming to clinic.” -- Stephanie Filigno, PhD, clinical psychologist at Cincinnati Children's Hospital Medical Center
Write your feelings down before or during a clinic visit or procedure to help you track and describe what you're experiencing to your care team. It may be difficult to pinpoint why you're experiencing anxiety and you may not experience it until after the procedure, when the emotions can seem unrelated. Logging your feelings over several visits may help you identify patterns that point to procedural anxiety and what is triggering it.
Learn About the Procedure
Knowing what to expect about an upcoming visit or medical procedure can provide a sense of control by increasing your familiarity with what is going to happen during the procedure, who is performing it, or where it will take place.
When you know more about what is involved, you can discuss ways to make the procedure feel less stressful with your care team or the clinician performing the procedure. People of all ages can feel more relaxed when they can control some parts of the procedure, including watching or not watching the procedure, picking where to get a shot, or if the procedure is done at the beginning or the end of a clinic visit.
Communicating with others with CF who have had the same procedures you have can also help. They can tell you what the procedure was like for them, what emotions they experienced, and what they did to cope with the procedure.
“I was at a point where I didn't just need the knowledge of experts, I needed the experience of peers … Sometimes you just need to talk about things that have to do with your shared experiences ... It makes you feel less alone.” -- Nathan, CF Peer Connect participant
For children, there are ways to explain procedures that may include play. Many hospitals offer child life specialists whose job it is to help children prepare for procedures and develop coping skills. Ask your care team if this is a service your child can benefit from.
Things your care team may want to know:
- How are you feeling emotionally before or during a procedure?
- Are you experiencing anything physically (e.g., racing heart, sweaty palms, nervousness that won't go away, trouble sleeping)?
- How long does the experience last?
- When did you first notice feeling this way (e.g., the night before a clinic visit or procedure, on the way to the clinic, during the procedure or right before it begins, after arriving home from a clinic visit or hospitalization)?
- Do these feelings interfere with normal daily activities (e.g., eating, sleeping, or focusing on important tasks)?
- Have you done anything in the past that has helped you cope with the procedure better?
Questions you may have for your care team:
- I start to sweat just thinking about doing PFTs. What can I do to relax?
- Sometimes, I feel dizzy during blood draws. How should I let you know if I start to lose control?
- Is it safe for me to take a pain killer, like aspirin, before my procedure?
- I can't sleep the night before a care center visit. What do you recommend I do to be better rested?
Questions to ask your or your child's care team are:
- My child is scared to come to clinic. Is there something we can do to reduce this fear?
- The last time a bandage was removed, my child screamed in pain. What can we do to help him have a less painful experience?
- I feel guilty and stressed when I'm asked to restrain my child for a procedure. Is there something I can do that is more comforting?
The following can be done to reduce the pain experienced with procedures:
- Numbing the skin with a topical anesthetic for needle insertions
- Using a device to reduce the sensation of pain for needle injections
- Taking medications that are prescribed by your doctor
For infants, the following is recommended:
- Breastfeeding, which helps comfort, distract, and decrease pain
- Dipping a pacifier in sugar water, which works as a pain reliever
“We asked our care team for a prescription for lidocaine cream. We now carry it with us as part of our preparation for upcoming procedures. It's one of those things we can control, making the experience less stressful.” -- Mom of a young adult with CF
Both adults and children can distract themselves from a medical procedure that causes anxiety by:
- Listening to music
- Playing video games
- Watching funny videos
- Imagining being at your favorite place (e.g., noting such things as what you see, smell, taste, or feel)
“One of the biggest things I do to help myself in terms of anxiety is distract myself. Distraction is a huge help.” -- Monique Wiegand, adult with CF
For children, choose distractions that are age appropriate. Examples include:
- Blowing bubbles
- Singing favorite songs
- Playing with toys that light up or make fun sounds
- Using smartphones or tablets with pre-loaded games or videos
Comfort positions are an alternative to holding a child down, which can be stressful and traumatic for the parent, child, and care team. There are several ways you can position your child so they feel secure while the medical professional performs the procedure, such as:
- Holding infants from birth to 12 months
- Child sitting on a bed with the parent behind for children 1-5 years old
- Child sitting on a parent's lap facing out while the parent holds the child (like a hug)
- Child sitting on a parent's lap facing the parent
Kahli Blickenstaff, CCLS, discusses techniques to help children with CF and their parents cope with procedural anxiety.
What Parents Might See
Procedural anxiety can affect a child's behavior in several ways, including:
- Stopping talking completely
- Hitting, kicking, or biting a parent or the person trying to perform the procedure
- Running around the procedure room
- Trying to leave the procedure room
- Hiding behind or under furniture
It's a Response, not a Behavioral Problem
Many people judge themselves or their child when procedural anxiety leads them to behave negatively. Procedural anxiety can cause an exaggerated “fight or flight” response when we sense danger. At a certain point, the person becomes so overwhelmed that it may be difficult to reason with them. Instead of trying to discipline a child, it's better to work through it by comforting them, and helping them develop coping skills to better manage it in the future. Your care team can help you find ways to comfort your child and build these coping skills.
Get 5 tips one mom uses to prepare her child for upcoming medical procedures.