Worrying about medical appointments, tests, having your blood drawn, or being admitted to the hospital is common. People with cystic fibrosis often experience anxiety related to the frequent medical procedures that are part of their CF care.
Unlike general anxiety, which affects how you function in daily life, procedural anxiety is associated with medical procedures or hospital admissions. When anxiety builds to where it causes distress
or interferes with a procedure, you may be experiencing an anxiety disorder that should be treated.
Procedural anxiety can start to build before the procedure and can even last after the procedure is finished. This anxiety can get worse over time if left untreated. Fortunately, you can partner with your CF care team to find ways to manage this common anxiety as part of your CF care.
"Our bodies are biologically designed to have reactions to things that are new, unexpected, potentially harmful, or uncomfortable, and so most people will have these sorts of reactions. They are normal and can be treated …" -- Stephanie Filigno, PhD, clinical psychologist at Cincinnati Children's Hospital Medical Center
What Triggers Procedural Anxiety?
People with cystic fibrosis experience many medical appointments and procedures -- that can begin as early as infancy. Given the frequency of procedures that occur over the lifetime of a person with CF, having a negative experience that leads to future anxiety is more likely than it is for people without CF.
Procedural anxiety can be triggered by:
Anticipation of pain or discomfort from needles, or placement of a vascular access device, such as a peripherally inserted central catheter (PICC) or port.
A sense of losing control, like not knowing what to expect in an unfamiliar setting, working with a new clinician, or when the procedure is performed differently than what you're used to.
Fear of something going wrong during the procedure, like having to undergo the wrong test.
Something that reminds you of a negative experience like a sight, sound, or even a smell. A person's procedural anxiety could start as they walk into the hospital or when they smell rubbing alcohol.
Performance anxiety, often related to worry about results from tests like pulmonary function tests (PFTs) that can signal a health decline or a hospital admission,
A doctor may not diagnose you with it, but -- like other kinds of anxiety -- I really believe it is a real thing, and I have had this anxiety for as long as I can remember. 'What did you blow?' 'What were your numbers?' 'What are you breathing at?' So much pressure ... -- Somer Love, an adult with CF, from the CF Community Blog
Parents Can Be Triggers
Parents can increase anxiety in their children, especially young children, without intending to when they, themselves, appear highly nervous or try to minimize their children's fear. Children can pick up on these emotions from body language and tone of voice. When children are made to feel ashamed or punished for having these feelings, it often makes these feelings harder for them to manage.
Hearing someone say 'it's not that bad' or 'you need to sit still,' … those interactions can make people feel alone or that they've done something wrong.” -- Stephanie Filigno, PhD, clinical psychologist at Cincinnati Children's Hospital Medical Center
Adults and children can experience procedural anxiety differently. Adolescents and adults may have developed the ability to use logic and can reassure themselves from positive past experiences to cope (“I have done this before, and it went fine.”) For younger children, talking about a procedure may bring more attention to their fears, making it worse. Children rely on their parents or caregivers to show them how to manage their anxiety.
Noticing when your procedural anxiety -- or your child's -- is happening, or what is triggering it, can help you or your child better manage the feelings.
No matter what we do to help prepare Dean, we know he still has emotions to deal with and there still may be a meltdown. We are not always able to comfort and prepare him. We take lots of deep breaths, give lots of hugs, and stay as positive as possible.” -- Rachael Havey, mother of a child with CF, from the CF Community Blog
What Are the Symptoms and When Do They Become a Problem?
Although triggers for procedural anxiety are associated with medical procedures or hospital admissions, many of the symptoms are the same for general anxiety. Symptoms of procedural anxiety include:
Feeling of breathlessness.
Heart palpitations, pounding heart, or increasing heart rate.
Loss of appetite.
Inability to speak or think clearly.
A sensation of detachment from reality.
Fear of fainting.
Fear of losing control.
These symptoms can be so overwhelming that it disrupts a person's ability to function before, during, or even after the medical procedure has ended.
Procedural anxiety becomes a problem when the symptoms:
Interfere with your ability to start or complete a procedure.
Lead you to avoid the procedure altogether.
Prevent you from coping effectively after the procedure is completed.
What Can I Do About it?
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.
Use this handout to help recognize the signs of procedural anxiety and what you can do to cope with it.
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.
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:
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.
Your care team can help coordinate your care with other health professionals, including mental health experts and child life specialists. These specialists may be part of your multidisciplinary CF care team or someone whom your care team refers you to.
A mental health professional can help you or your child learn and practice techniques to manage difficult thoughts, feelings, and behaviors that interfere with your ability to participate in your CF care.
These techniques may include:
Deep breathing exercises that involve breathing in deeply through your nose, holding the breath, and breathing out slowly through your mouth
Progressive muscle relaxation, such as tensing and relaxing different groups of muscles
Imagery where you close your eyes and imagine the sights and sounds of a pleasant place
Exposure therapy, which is a self-guided way to practice relaxation and other skills to build confidence when facing fears. Exposure therapy takes time and practice to build skills that are yours to keep once you have them.
We can help you calm the body's reaction down and put some skills in place to think about these things in a more helpful way.” -- Stephanie Filigno, PhD, clinical psychologist at Cincinnati Children's Hospital Medical Center
Health Care Professionals
Health care professionals who can help you cope with procedural anxiety include:
Social workers may screen people with CF for depression and anxiety. They also provide counseling and support and help coordinate care by referring to mental health professionals for diagnosis and treatment of conditions like procedural anxiety.
Psychologists have expertise in identifying and treating problems with behavior and emotional challenges such as depression or anxiety, including procedural anxiety. Your CF psychologist can teach you strategies and coping techniques.
Psychiatrists are medical doctors with specialized training in diagnosing and treating psychological issues. In addition to teaching strategies and coping techniques, psychiatrists can prescribe medications to help alleviate anxiety.
Child life specialists are specially trained to help children and families cope with physical and psychological challenges by teaching skills through play and practice that is tailored to a child's developmental level. They often help children prepare for an upcoming hospital procedure.
Other members of the clinical team, like the nurse or specialist, can help explain a medical procedure, including why it is recommended, what to expect before, during, and after the procedure, and what you can do to prepare or recover from it.
… it is the entire team's responsibility to coordinate and build trust between the team and the patients ... I think it is extremely helpful for us clinicians and members of our care team to express empathy toward a patient who is experiencing procedural anxiety, to hear how we can best help them with this anxiety.” -- Isabel Neuringer, MD, pulmonologist and co-director at Massachusetts General Hospital Adult CF Center
If anxiety levels before procedures do not improve, oral or injected medications may be recommended to promote relaxation and include:
Sedatives called benzodiazepines, which may be prescribed to be taken before a procedure.
Nitrous gas (also called laughing gas), which is a colorless, odorless gas that helps you relax shortly after you inhale it.
General anesthesia, which is typically used during invasive procedures, such as surgery, puts you in a state of unconsciousness so that you don't feel pain during the procedure.
Most health insurance policies cover treatment related to mental health. Specific coverage depends on the type of insurance you have (i.e., private, public, or if you have no insurance).
You can ask a Cystic Fibrosis Foundation Compass case manager to help you determine if you have coverage to treat procedural anxiety with a mental health professional. Your coverage may also include general wellness options, such as meditation or yoga.
Questions a Compass case manager can help answer include:
My care team referred me to a mental health specialist to help me manage anxiety related to an upcoming medical procedure. Can you help me find out if this provider is covered by my insurance?
Do I need to be diagnosed with anxiety before my insurance will cover the treatment for it?
Will you help me find out if cognitive behavioral therapy is covered as part of my child's medical care?
I would like to try mindfulness yoga to reduce stress and to help me relax. Is this offered as a benefit through my current insurance?
Even if you don't have insurance, CF Foundation Compass case managers can help you explore coverage options, as well as help identify available local resources based on your situation. The CF Foundation offers this free and personalized service to help people with CF and their families with insurance, financial, legal, and other issues.
Much of the research to date regarding procedural anxiety has been published on pain management in children. One study found that using a program throughout a hospital, known as the Children's Comfort Promise™, was associated with a significant decrease in overall pain and improved the use of evidence-based practices for managing pain from needles.1 Several studies have found that distraction, cognitive behavioral therapy, hypnosis, and breathing strategies helped children decrease their pain, distress, and fear of needles.2, 3
One small CF-specific project found that people with CF who tried tools to manage stress during lung function testing said that they would be willing to use them in future tests. In addition, PFTs didn't take more time when people used the tools than when people didn't.4
Friedrichsdorf SJ, Eull D, Weidner C, Postier A. A hospital-wide initiative to eliminate or reduce needle pain in children using lean methodology. Pain Rep. 2018 Sep; 3(Suppl 1): e671. Published online 2018 Sep 11. doi: 10.1097/PR9.0000000000000671
Birnie KA, Noel M, Chambers CT, Uman LS, Parker JA. Psychological interventions for needle-related procedural pain and distress in children and adolescents. Cochrane Database Syst Rev. 2018 Oct 4;10:CD005179. doi: 10.1002/14651858.CD005179.pub4.
Taddio A, McMurty CM. Psychological interventions for needle-related procedural pain and distress in children and adolescents. Paediatr Child Health. 2015 May; 20(4): 195-196. doi: 10.1093/pch/20.4.195
Nusbaum K, Filigno SS, Feldstein J, et al. Assessing and responding to stress related to pulmonary function testing in cystic fibrosis through quality improvement. Pediatr Pulmonol. 2020 Feb 10. doi: 10.1002/ppul.24673. [Epub ahead of print]
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