How to Minimize Infusion Anxiety in Adults and Children With Primary Immunodeficiency

For people living with primary immunodeficiency, immunoglobulin replacement therapy is a cornerstone of treatment. These therapies help replace missing antibodies and reduce the risk of serious or recurrent infections. While some people receive immunoglobulin through intravenous infusions (IVIg), usually in a clinic, many adults and children eventually transition to subcutaneous immunoglobulin (SCIg), which can be administered at home.

SCIg offers flexibility and steadier antibody levels, but it also comes with a learning curve. Before starting, patients or caregivers are trained by a nurse or other healthcare professional on proper technique, safety, and troubleshooting.

For most people, learning to do infusions at home typically requires working through some initial hesitation and anxiety, says Danielle Nance, MD, a hematologist with Banner Health in Gilbert, Arizona.

But for most people, the payoff outweighs that initial discomfort, she says. “Taking control of primary immunodeficiency treatment with SCIg is an important step for individuals and families,” says Dr. Nance.

Fear around SCIg can come from several directions — and that’s totally understandable, says Nance.

“Anxiety about infusions, needles, and keeping track of all the medical supplies at home can be daunting,” she says.

One of the most common sources is discomfort with needles, which makes perfect sense, says Nance. “Being afraid of needles is healthy and normal.”

Concerns about doing the infusion correctly are another frequent worry. Patients may fear making a mistake, managing the pump incorrectly, or missing a step. That anxiety can be heightened early in treatment, when the process still feels unfamiliar.

For children, anxiety may be compounded because they don’t understand why infusions are necessary or by fear of pain, without the longer-term perspective adults may have.

As you work toward mastering SCIg, keep in mind that many people have had the same feelings and struggles — you are not alone in this, says Nance. Working through the process will help you gain confidence and manage your emotions.

Start With Strong Training and Support

Good training is one of the most effective ways to reduce infusion anxiety. Learning the steps in a supervised setting and knowing who to contact if questions arise can make the process feel safer and more manageable.

“It may be ideal for the first injection to be given in a provider’s office, so patients and caregivers can experience the injection with onsite help,” says Megan Ehret, PharmD, a professor in the department of practice, sciences, and health outcomes research at the University of Maryland School of Pharmacy in Baltimore.

In many cases, the training nurse will assist you with the first few injections, which will continue to get easier over time, she says. In addition to helping you get familiar with the process, nurses can help address any questions and common issues with SCIg, says Ehret.

Knowing who to call — whether that’s a nurse, pharmacist, specialty pharmacy, or physician — can also reduce anxiety if something doesn’t go as planned, says Rekha Raveendran, MD, an allergist-immunologist at the Ohio State University Wexner Medical Center.

Use Breathing and Grounding Techniques

Simple relaxation techniques can help calm nerves before and during infusions.

“Taking a few slow, deep breaths before starting can steady anxiety and help you feel more in control,” says Nance. Visualization or other calming routines may also help some patients settle into the process.

Consider Numbing Creams

For people who are anxious about pain, numbing creams can be helpful, says Ehret.

“Lidocaine-based creams are commonly used and can reduce discomfort. Apply to clean skin 30 to 60 minutes before needle insertion, then wipe off before starting,” says Ehret.

Use Positive Self-Talk and Perspective

Reframing the experience can also help. Nance encourages patients to remind themselves that practice makes the process easier and that everyone progresses at their own pace. “Everyone moves at their own pace when getting comfortable with infusions,” she says.

Some patients also find it reassuring to focus on the long-term benefits of treatment.

“There can be many benefits that make the effort worth it — fewer infections, fewer days lost from school or work, better energy levels, and more time with friends and family,” says Nance.

Ultimately, the people who master home self-infusion describe a sense of relief, she says. “They have an ability to improve their health and choose the time and place where the infusions can be done.”

Lean on Distraction

Distraction is one of the most effective anxiety-reducing strategies during infusions.

“Having a book to read or listen to, a movie to watch, or a drink available can help take your mind off the injection,” says Ehret.

If distraction doesn’t work for you, try creating a calm environment with soothing music, comfortable seating, or familiar surroundings, says Nance.

Children often experience additional stress around infusions. They may not be old enough to fully understand why the treatment is needed, or older children may struggle with the fact that they have little control over the process.

Create a Safe, Comfortable Space

Choosing a quiet, familiar location for infusions can help children feel more secure, says Ehret. Comfort items like blankets, stuffed animals, or favorite pillows can also provide reassurance.

Use Numbing Creams and Distraction

As with adults, numbing creams can reduce pain and fear.

Distraction techniques are especially effective for children. Singing songs, counting, blowing bubbles, watching videos, or listening to stories can help shift attention away from the needle, Ehret says.

“Just looking away from the injection is often enough to reduce pain and fear significantly,” she adds.

Acknowledge and Validate Emotions

Children may feel fear, anger, sadness, or a sense of unfairness. Naming and validating those emotions can be therapeutic. “Simply naming the emotion can have a therapeutic benefit and let the child know that they have been seen and heard,” says Nance.

She also notes that it’s okay for parents to acknowledge their own feelings.

“If a parent is having a hard time, it’s okay that you’re struggling with your child. Shared moments of feelings can foster trust and closeness, even when those feelings are unpleasant,” says Nance.

Remind each other that “we’re in this together” even when only one person has to get the infusion, she adds.

Create Rituals and Offer Choices

Rituals can help children understand what to expect and when the process will end.

Nance suggests building predictable routines around infusion days and using positive reinforcement, such as praise or gentle touch, to support confidence.

Offering age-appropriate choices such as where to sit, which music to play, and which bandage to use afterward can also help children feel more empowered and involved in their care.

Focus on Progress, Not Perfection

“Perfection is not the goal; administration of the medication is,” says Nance.

Small rewards, such as stickers or “gold stars,” can reinforce effort and progress, even on difficult days, says Ehret.

While some anxiety is normal, persistent or worsening anxiety that interferes with timely treatment may signal a need for additional support.

“Ask for assistance from the nursing team, pharmacist, or infusion team until you feel confident,” says Nance. Mental health professionals can also help if anxiety becomes overwhelming or begins to affect quality of life.

In many cases, the anxiety will resolve over time as you gain confidence and competency, says Nance.

But in some cases, you may decide SCIg isn’t the best solution for you or your child, and doing IVIg may be a better option, and that’s okay, says Raveendran.

Choosing between SCIg and IVIg should be a shared decision, and don’t be reluctant to discuss questions or concerns with your provider, she says.

• Anxiety about SCIg infusions is common, especially at the start, but it often improves with practice, good training, and knowing who to contact for support.
• Tools like numbing creams, breathing exercises, distraction, and predictable routines can help make infusions feel less stressful.
• For children, reassurance, validating emotions, and offering small choices or rituals can reduce fear and increase comfort.
• If anxiety interferes with treatment or daily life, reach out to your care team or a mental health professional; another infusion option may be appropriate in some cases.