An ear thermometer sent Rita Ho-Bezzola's 1-year-old daughter into a crying fit when a nurse tried to take the little girl's temperature.
Afterward, Ho-Bezzola decided to buy a thermometer from a local CVS retailer and play pretend doctor with her child. Through that interaction, she said, her daughter learned how the tool would be used.
When the toddler returned to the doctor's office for a checkup six months later, the sight of a thermometer didn't upset her.
Ho-Bezzola was a new mother then. She now realizes that her daughter couldn't say, "I don't know what that thing is," and express her fear of the unknown object.
This is just one of many experiences that motivated Ho-Bezzola and her co-founders at Piper + Enza, an online resource for parents navigating the health care system, to learn more about how negative medical experiences affect pediatric patients and their families.
Fellow co-founder Taraneh Arhamsadr said that when the organization was defining its mission and goals in 2021, its work was largely shaped by a 2018 poll conducted by the C.S. Mott Children's Hospital at the University of Michigan.
The nationwide poll, which surveyed parents of children between the ages of 2 and 5 who were afraid of visiting the doctor, found that children's fear affected their parents' interactions with health care providers. About 22% of parents said it was hard to concentrate on what the doctor or nurse was saying, and 9% said they would sometimes forget to ask questions or raise concerns because their child was scared or upset during the visit.
The poll also found that almost 5% of parents either postponed getting a vaccine for their child or canceled or delayed an appointment due to the child's fear of going to the doctor.
According to Nemours Children's Health, children's worries about medical exams include being separated from their parents, experiencing pain, having a bad interaction with the doctor, and having a more serious problem than their parents are letting on.
Piper + Enza is working to improve the experience that pediatric patients and their families have in doctor's offices, clinics and hospitals. With the collaboration of early child educators, child life specialists, pediatricians and child psychologists, the organization offers guidance from professionals in the field. It's also raising awareness about child life specialists, who are supportive medical staff members available to parents and guardians when their children go to the hospital.
Prepping for a doctor visit
Parents, prepare yourselves. When you're making an appointment for your child, whether it's a checkup or an inpatient procedure, ask questions and get an understanding of what the procedure will be like so you can prepare your child.
Ho-Bezzola and Arhamsadr said they've learned through their research that an open and honest conversationwith your child can make the medical visit a more positive experience. If a child is going to the doctor for an immunization or bloodwork, for example, Kaiser Permanente says you should tell that to the child. Like adults, most children fear needles, but kids may cope better if they know what to expect. It suggested saying to your child, "You will need to get medicine through a small needle to stay healthy, and it may feel like a pinch or a sting." Not telling your child the truth can result in anxious feelings, or worse, your child may learn to not trust what you say.
UCLA Health suggests talking to children under 5 a day or two before the medical experience. Older children should have a few days to a week of advance notice. Guardians should always encourage their children to discuss their feelings and ask questions during this time, while also validating those feelings.
Ahead of the medical visit, supplement the conversation by playing doctor, reading books and doing art activities that incorporate medical themes, such as using bandages, cotton balls and gauze to make flowers or a collage. All of these activities can help the child understand what the doctor visit will be like, especially role playing with a toy doctor kit. Piper + Enza published a book for parents and children, "The Difference Between Needles and Noodles," that helps kids learn more about why people get shots, ways they can prepare and useful coping strategies. The book also includes a parents guide from certified child life specialist Katie Taylor.
If your child is going into the doctor's office for a vaccine, give them a simple choice to either sit in your lap or sit by themselves.
Ho-Bezzola and Arhamsadr's biggest piece of advice for parents is to stay calm. The less anxious you are, the calmer your child will be.
What's a child life specialist?
Coping with a serious illness, injury or treatment can be challenging and stressful for children and their families, said Keri O'Keefe of the Assn. of Child Life Professionals. A visit to the hospital is when a child life specialist can step in to provide support.
The goal of a certified child life specialist is to ensure family-centered care. The specialist is working with and checking on all immediate family members supporting the patient — who can include parents, guardians, siblings and grandparents.
Erin Shields, chief life specialist for Children's Hospital Los Angeles, said she once went into a hospital room and was informed by a grandparent that the doctor was talking to the child's guardian. Shields let the grandparent know she's there to support the whole family.
"And you see that physical change in posture and that sigh of relief of, 'You're right, this is really scary for me too, and I'm allowed to have those really hard feelings,'" she said.
A specialist supports everyone by providing therapeutic play, preparation for the procedure, and education that reduces fear, anxiety, pain and suffering for patients and their families.
For example, Shields said, she held virtual meetings with parents earlier in the COVID-19 pandemic to offer guidance on how to talk about a diagnosis with the siblings of a patient.
"It's never the same technique for every family, so we really like to work with them in that process to create a foundation of trust," she said.
Alleviating the anxiety that family members may feel empowers them to believe that they can "do this" and get through whatever treatment or procedure their family member is undergoing, added Carol Hamamoto, child life manager at Children's Hospital Los Angeles.
Shields added that this helps parents find their voice because "they are the most important person on their child's medical team." A guardian is also the child's advocate, so a child life specialist helps them to feel empowered to speak up and to share their concerns.
O'Keefe said these specialists support young patients by introducing coping strategies to help children with the anxiety and stress of hospitalization, preparing them for procedures or treatment using developmentally appropriate language, and providing support and distraction during medical procedures. Their duties also include offering opportunities for play and expressive activities to encourage normalcy and continued growth during their treatment or hospital stay.
An evaluation of one child life program published by the journal Pediatrics in 2021 found that the interventions resulted in less emotional distress, better overall coping during the hospital stay, a clearer understanding of procedures, and a more positive physical recovery and post-hospital adjustment for children who were enrolled.
Other studies cited in the journal article found that child life specialists play a major role in calming children's fears and result in higher parent satisfaction with the entire care experience.
These specialists typically lend their services in the emergency department, intensive care and cardiac units as well as in the fields of oncology, bereavement, anesthesiology and radiology.
There are 613 child life specialists in California, a figure that O'Keefe said was the highest number in the country. Texas comes in second with 595.
A caregiver can request support from a certified child life specialist, but there might not be one available at all hospitals. The majority of specialists in California work in larger hospitals such as Cedars-Sinai Medical Center, Children's Hospital Los Angeles, Loma Linda University Children's Hospital and UCSF Benioff Children's Hospitals.
If you want to know whether your child's hospital or care team has a child life specialist on staff, Hamamoto said you can call and ask. If you're coming from a pediatric office, she said, you can always have the doctor write in "the parents (or guardians, as the case may be) would like to request child life services if available."
