One afternoon, at the close of a children’s support group session, I gathered the kids around for an activity. I sketched a tree trunk on a roll of butcher paper and gave each child two green paper leaves. On one, I asked them to write or draw something that they thought was hard about taking care of diabetes, and on the other, to write or draw something they thought was easy about taking care of diabetes. I had intended the exercise to be a simple expressive outlet, but as I read through their responses, I realized I was getting a loud, clear, and somewhat surprising message from the young people I was caring for.
Not just small adults
Ask adults with diabetes which they find more tolerable, insulin injections or fingersticks, and most will choose injections. The newest insulin needles are so fine and short that they cause very little discomfort. Adults will swear that fingersticks are far worse. There are, in fact, many more sensory receptors in the fingertips, and lancets are much thicker than insulin needles.
I was hearing the opposite story, however, from the young children. When I had gathered all their responses, I was left with 104 hard leaves and 103 easy leaves. The 104th belonged to a five-year-old boy who simply stated, “Nothing about diabetes is easy” and firmly shoved his blank second leaf back into my hand. Fair enough.
I read each leaf and sorted them by topic. While about 10 different topics appeared repeatedly, the two diabetes care tasks mentioned most frequently were fingersticks and injections. Fifty-two percent of the hard leaves bore pictures or words about insulin injections, while only 9% of the hard leaves identified aspects of blood glucose monitoring. Conversely, 51% of the easy leaves showed drawings or told stories of lancets, tiny drops of blood, and meters, and only 10% of the easy leaves mentioned injections.
Understanding their experience
Most of the children who contributed leaves were preschool-age or school-age. To better understand why they identified hard and easy tasks the way they did, it is worth considering some of the characteristics of this developmental stage.
As children enter the preschool years and move into early school-age years, their use of language and symbols increases rapidly, and magical thinking emerges. Magical thinking describes a child’s tendency to believe that he has the ability to cause (or prevent) outcomes with his thoughts, actions, or words. For example, a child may believe that the snow began to fall simply because he wished for it to happen.
The concept of conservation is also a challenge for children in the preschool and early school-age years. Conservation is the preservation of a physical quantity in spite of a change in shape or some other transformation. For example, a cup of water looks different when poured from a short, wide glass to a tall, thin glass, but it is still the same amount of water. However, a preschool-age child who has not grasped this concept may complain that his sister has more to eat than he does if her sandwich is cut into two pieces and his is left whole. Or a child who refuses to eat mashed potatoes because she hates white food will swear they taste much better when a drop of red food coloring is added.
Children also develop physically during this stage, acquiring both gross and fine motor skills that enable them to play with more complex toys as well as carry out tasks, such as brushing their teeth, that previously someone else had to do for them. Power struggles with parents are common when young children try to assert their newly acquired skills and independence. An example is the three-year-old who insists on dressing himself. His mother, who is already late for work, tries to help speed the process along and is met with a hand shove and a loud, “I can do it myself!”
All of these aspects of development play a role in how young children understand and respond to diabetes care. For example, magical thinking may lead a young child to believe his injections will cure his diabetes or possibly that his injections are punishment for misbehavior or inappropriate thoughts. Family power struggles may emerge around diabetes care as a child becomes able to perform some of his own diabetes care tasks, such as doing fingersticks, and also begins to want more control over what happens to his body. However, while some children can monitor their own blood glucose at an early age, parents are still responsible for, and encouraged to remain closely involved in, all aspects of diabetes management.
Children in this age range tend to be concerned about how health-care experiences and procedures will affect their bodies. They may be disturbed by “holes” being made in their skin by needles or concerned about running out of blood.
A lack of understanding about conservation may help explain why children often prefer fingersticks to insulin injections. From an adult’s perspective, insulin needles and lancets are both sharp metal objects that cause a pricking or painful sensation. From a child’s perspective, however, there are some important differences. An insulin syringe has a naked needle on the end, which, no matter how short, is still clearly a needle. Lancets, however, are neatly hidden within the lancing device. Even though children may watch the lancet being inserted into the lancing device, they will often not be as focused on the lancet once it is hidden.
The issue of outward appearances, combined with limitations in logical reasoning, may also help to explain why young children often protest larger doses of insulin. The more insulin that’s in the syringe, the larger its physical appearance. A syringe that is filled with insulin can be as long as 5 inches from the top of the plunger to the tip of the needle. If getting insulin is thought of as scary or painful, more insulin may seem worse.
Injections also encroach on a child’s personal space. The closer to the midline or center of the body, the more threatening the procedure may seem to the integrity and safety of the body. This probably explains why young children tend to be much more resistant to rotating injections on their bellies than on their legs or arms. Fingersticks, on the other hand, feel less invasive because they can be done with the child holding his hand out several inches away from his body.
Young children will often share their thoughts and perceptions of injections through play. Recently, a four-year-old child sat on the clinic playroom floor pretending to give insulin with a needle-less syringe to a baby doll. She pulled the plunger back as far as it would go.
“This baby is gonna get a big shot. He’s crying,” she said. I followed her script and made soft crying sounds on behalf of the doll.
“She needs more,” the girl said as she pretended to refill the syringe, this time only pulling the syringe back a few units. I continued the soft crying for the doll, thinking I was still following her lead.
“No! The baby’s not crying. It’s just a little shot,” she said, as if it were obvious that a small amount of insulin would not cause the baby to cry the way a large amount did.
Another typical playroom scenario involves the dolls receiving injections in the face, neck, or chest. The children will often look toward an adult immediately after an injection as if to ask, “What are the chances of that happening to me?” My response to this type of play is always supportive and reassuring: “We can pretend to give the baby his insulin there, but real children would never get an insulin shot in those places.”
The problem of pain
Understanding cognitive ability is only the first step in grasping the children’s message about their experiences with injections and fingersticks. The second is accepting the existence of pain in diabetes management. It seems less harsh and more comforting to tell parents and children that it really doesn’t hurt at all. When children do report pain, adults may say it’s “just anxiety” or that the child is “seeking attention” or “trying to gain control.” While these emotional and behavioral issues are likely to play an important role in pain perception, they are not separate from actual pain.
I continue to hear health-care professionals and parents referring to “psychological” pain. People are forever pointing their fingers at this pesky, imaginary perpetrator that allegedly causes children to yell, flail, and physically resist the tiniest needle stick.
This idea of a separate, psychological pain is not quite accurate, according to the latest pain theories. The pain-sensing system can be influenced by cognitive, emotional, behavioral, and contextual variables. This means that the same child, experiencing the same amount of tissue damage, on the same area of the skin, is likely to report different levels of pain depending on factors such as how anxious he is, the setting in which he experiences the painful stimuli, and his understanding of what is happening. Yes, there is a psychological component to pain, but it often causes actual changes in pain perception.
The concept that pain perception is influenced by external factors is far less grim than the idea that the intensity of pain is strictly related to the amount of tissue damage, because it implies that there is an opportunity to reduce pain by changing the variables that influence it.
Helping children cope better
Children are resilient beings, and eventually, most learn to cope well with the routine of diabetes management. Health-care providers and parents can facilitate coping for young children with the following tips.
Acknowledge your child’s fears. Understand that injections and fingersticks may be scary to children and that kids may experience real discomfort. Refrain from telling your child that his claims of discomfort from shots or fingersticks are wrong. Responses such as “You didn’t feel that” can be embarrassing and frustrating if the child truly did experience pain. A more helpful response to a child who says, “That really hurt!” might be, “I can tell you had some pain. Let’s try and find a way to make it easier next time.”
Reduce anxiety-provoking factors. Because some children may be less apprehensive if needles are hidden, families may want to try using an injecting device such as the Inject-Ease, made by BD, which encases the syringe and needle. Be aware, however, that the device may have the opposite effect on children who dislike large injection devices.
Provide your child with one minute of preparation time per year of age for injections or fingersticks rather than abruptly interrupting his activity. For example, if your child is three years old, give him a cue three minutes before injection; if he is five years old, give the cue five minutes prior.
Adults should try to remain as relaxed as possible. Children are greatly influenced by parental anxiety. Talk softly and slowly. Try not to escalate the tone or speed of your speech if your child begins to cry or resist.
Everyone involved in blood glucose monitoring or injecting insulin may want to practice controlled breathing. Instruct your child to take a deep, slow breath, hold for three seconds, and exhale slowly. Do this two to three times together. Time the insulin injections with the last breath, and have your child blow out as the needle is being inserted, as if he were blowing away the pinch.
When possible, find a quiet place to do injections. In the home, families may want to choose one area of the house to do most injections. This may help the child feel less anxious by setting a clear, physical boundary for where injections happen. If using one area of the home is not possible, then try to pick at least one area to be a “safe zone” where injections never occur.
Make a schedule. Using a doll or child-friendly chart, create a rotation schedule that your child can understand easily. Families can mark the appropriate injection sites on a cloth or vinyl doll and then write the day and time insulin injections are due in that site. Some children may prefer a simple calendar chart with days, times, and sites written out. Either type of schedule will provide a clear sense of where injections will go and when they will happen, reassuring the child that diabetes care is part of a routine and not a punishment for something he did.
Offer limited choices. For children who like to take part in their own diabetes management, parents may find it helpful to set a clear limit on what choices are available rather than posing broad questions such as, “Where do you want to put the shot today?” Instead, allow your child to choose one of only two possible injection sites or fingers.
Work quickly. All choices should be offered and discussions finished before the injection or blood glucose monitoring supplies are out of their storage place. Adults should avoid engaging in lengthy negotiations with their child once the syringe or lancet is out and ready to be used. Looking at the syringe or lancet while discussing its use often creates more anticipatory anxiety.
Use distraction. Distraction is the most practical and effective tool families can use to minimize pain and distress for children. The use of cognitive distraction and touch distraction is based on the theory that cognitive activities and stimulation of the skin by stroking, rubbing, or applying pressure create impulses that travel to the brain and spinal cord quickly and interrupt the pain impulses that travel through the same pathways, reducing pain perception. Several recent studies suggest that both cognitive and touch distraction may be quite effective in reducing pain during immunization injections.
Cognitive distraction activities include blowing bubbles or a party-blower, squeezing on a soft ball, searching for specific items in a colorful photo or in the room, doing simple math equations out loud, counting, or saying the alphabet. Touch and pressure distraction may be helpful for children who are too upset to effectively engage in a cognitive activity during injections. The easiest way to use this technique is to apply pressure to the injection site with the thumb for 10 seconds just prior to the injection. People often use this technique in reverse when they experience pain. For example, a person bumps his shin and immediately rubs the injury to reduce the pain.
Another technique involves gently stroking the skin within an inch of the injection site as the insulin is being administered, using the fingers that are not being used to pinch up the skin. This may take some coordination and practice. If a second person is available to assist with injections, he can softly stroke the skin near the site as the injection is given. There is also a small, plastic device available called the ShotBlocker that helps create pressure distraction around the injection site.
Reduce pain where possible. Families may seek the advice of their medical team in choosing the smallest, shortest needles and lancets for their child. Some children may also find comfort in icing the skin for 10–20 seconds prior to injections. This can help by desensitizing the receptors in the surface of the skin.
Help older kids, too. Be available to support school-age and adolescent children as they become more competent at completing diabetes management tasks independently. Older children may still experience some anxiety or discomfort around diabetes tasks. Children are more likely to engage in coping behaviors with an adult acting as a coach than they might on their own.
Follow-up and support
Fear and distress over needles are appropriate responses to the management of diabetes for many children. In most cases, parental efforts to reduce anxiety and improve coping will be sufficient. However, some situations merit closer attention by a mental health professional, such as if a child frequently remains upset for more than 10 minutes after an injection or fingerstick. Similarly, if insulin is not being properly administered or there is great difficulty in following the blood glucose monitoring schedule recommended by your health-care team due to your child’s distress, seek immediate support from your child’s diabetes care team.
Kids have a remarkable capacity to learn to cope with a variety of stressors, especially with the support of caring adults. The coping strategies described here require consistent practice to be effective, but not all need be used at once. I encourage families to start slowly by choosing one or two techniques to work on over a few weeks. It’s important to give any one technique a few tries before giving up. Eventually, the child and family will discover which strategies work best for them.