Around the world, newborn babies experience many painful procedures in their first hours and days of life as part of routine medical care. Healthy children can experience more than 20 needle-related procedures in the first two years of life. Only 5% of all children undergoing immunization have support for needle pain.
Premature babies and seriously ill children can experience as many as 16 painful procedures every day.
Babies and children with retinoblastoma or at risk for this cancer experience many painful needle-related procedures throughout years of surveillance, treatment and follow-up care.
Lack of effective pain management during every procedure causes unnecessary distress to the child, their parent and the professionals delivering care, which can make it more difficult to complete these procedures effectively and safely.
Cumulative emotional and physical impacts of repeated painful procedures often lead to hidden psychological scars that can affect overall health and well-being, and influence healthcare seeking behaviour throughout life. Anxiety and lack of knowledge about how to effectively support their child can sometimes lead parents to refuse vital immunizations.
It Doesn’t Have To Hurt
Babies and young children feel pain, but they have few coping skills and means of letting their carers know what they are experiencing. Research has identified many ways to effectively manage their pain – supports that parents / carers and medical professionals can use easily and quickly with no or very low cost.
#ItDoesntHaveToHurt is a Canadian and global social media campaign from the Center for Pediatric Pain Research at IWK Health Centre in Halifax, Nova Scotia. Putting practical knowledge into the hands of all who care for children in pain.
The campaign website gathers together all research projects, findings, educational tools, calls for research participants and more. Sub-sections focus on children’s cancer pain and pain in childhood cancer survivors, as well as other types of childhood pain.
Watch this powerful TEDx Talk from campaign research lead, Dr. Christine Chambers. She discusses the history of children’s pain management (or lack of), challenges of pain management in care of babies and young children who undergo frequent medical procedures, the consequences of inadequate pain care, and ways to reduce their pain.
Support for Infants
Many patients with retinoblastoma or at risk for the cancer are very young babies. Parents and health care professionals can use a few simple techniques to reduce stress and improve coping during medical procedures, from simple routine vaccinations to blood draws and complex cancer care.
1. Kangaroo Care – Skin-to-Skin Contact
Holding a baby, clothed only in a nappy/diaper, facing you against your bare chest is known as skin-to-skin contact or Kangaroo Care. Ideally, it begins 15 minutes before a painful procedure, but as little as 2 minutes beforehand can be beneficial. A blanket, shirt or hospital gown with front opening can be worn over the top for privacy, comfort and warmth. Kangaroo Care can be practiced by mothers, fathers or other individuals providing loving care to the infant.
Kangaroo care has many benefits, from balancing the baby’s pain responses to stabilising heart rate and breathing, and accelerating their recovery. This simple, soothing positive touch builds parent confidence in holding their baby, and encourages bonding, particularly in times of illness and intense medical care.
2. Breastfeeding
Research from Children’s Hospital of Eastern Ontario shows that breastfeeding before, during and after the procedure reduces pain and improves coping in babies under 12 months old. The soothing effects of Kangaroo Care and breastfeeding are increased when combined.
For best effect, begin breastfeeding 2-5 minutes before the procedure. If a second procedure is required on the opposite limb, reposition your baby on the opposite breast. Sufficient time should be given to ensure both mother and baby are comfortable, with a secure latch, before continuing the procedure.
3. Sugar Water
No one yet knows why sugar water aids coping in babies and young children during painful procedures. The sweet taste may create a welcome distraction, or the sugar itself may have an unknown impact on the brain’s response to pain. But sucking on sugar water, before and during the procedure can significantly improve a child’s experience of the event.
How to Make Sugar Water Solution
- Mix 1 pack of sugar (1 teaspoon / 5ml) in 2 teaspoons / 10ml of water.
- Use distilled or boiled water.
- Only use tap water in older children if you know it is safe to drink.
How to Give Sugar Water
- Begin giving sugar water 1-2 minutes before the procedure.
- Put a drop at a time into your baby’s mouth, using a dropper, syringe or medicine cup.
- Put the solution to towards your baby’s cheek. Do not squirt sugar water into the middle of the mouth as this will cause them to gag and spit the solution.
- Alternatively, dip a soother in the sugar water, and give it to your baby to suck on throughout the procedure.
- Only use sugar water as a pain management tool, not for general comfort, nourishment or treat.
Read our June 2018 blog from Morgan Livingstone CCLS, which provides more guidance and practical tools to support infant mental health through retinoblastoma care and painful procedures.
Support for Older Children
Advocate – Be a Calm Supporter
Children take their cues from the words, actions and emotions of parents and other significant people around them. If you are anxious or show upset about a procedure, your child is likely to respond with anxiety and upset. If you stay calm, you will be more able to offer support, and your child will be more likely to stay calm too.
Take some deep, balancing breaths – use a technique like the one described in the video below. Use a soothing voice to reassure, comfort, encourage, and distract your child.
Be Prepared – A Coping Plan Makes All the Difference
When you have a coping plan prepared in advance, you and your child will be less apprehensive and feel a greater sense of control over the experience. This can include practicing comfort positions and identifying which you and your child prefer for specific procedures, and choosing appropriate distraction activities together (see below for more information about comfort positions and distraction).
Medical play for procedure preparation helps young children process their experiences. Through medically themed play with real or toy medical equipment, dolls and teddy bears, children can safely learn to master medical procedures and navigate their own health care experience. Therapeutic play helps reduce anxiety and empowers children to be active participants in their own medical care.
Comfort Positions – Positive Touch Provides Security
Positioning parent and child effectively can reduce anxiety and fear, and create a sense of control and involvement in the process. Comfort holds improve the child’s ability to co-operate during procedures, and enhance safety for all involved.
Basic positions can be used for different procedures, or chosen depending on the child’s specific preference. The parent’s positive touch and the sense of security their hold provides can significantly calm a distressed child, and reduce stress for both parents and professionals providing care.
Take time to learn and practice the positions together. By exploring the different comfort positions with your infant, you will find preferred positions for each routine procedure you can expect at appointments. You can even become an expert problem solver, figuring out creative positions for new or unexpected procedures.
Distraction Play – Fun Focus on Something Else
Distraction activities and toys reduce stress, increase cooperation and create fun for children undergoing procedures and/or coping with pain. When selecting a distraction method, allow children to make choices whenever possible to ensure they feel a sense of involvement and control, and to increase the likelihood that the tool will have the desired effect.
You can purchase distraction items, but many distraction activities can be found or created at home, or created without any resources at all. Bubbles, pinwheels, magic wands, rainshakers, books, smartphone apps, stress balls, light up toys, singing, and massage can all be used effectively during painful needle-related procedures. Offer a wide variety of distraction activities, and do ask children if they have a preferred distraction for certain procedures – port access, blood draw, immunization, etc.
Don’t tell your child the procedure will be over soon, or that it won’t hurt. This only draws everyone’s attention to the approaching pain and anxiety about it. Your child will also be less likely to trust you or be comforted by you in the future. These statements also suggest the procedure will be painful, when in fact some children report they experience little to no pain at times.
Your goal is to divert your child’s attention completely away from the procedure while it takes place. If their focus is interrupted by the sensations they experience or the activity happening around them, you can quietly redirect them back to the distraction.
Distraction Play Guidance for Parents
Distraction Play Guidance for Professionals
Ask and Explain – Communication Is Key
Research from the Center for Pediatric Pain Research found that parents don’t ask for pain management because doctors don’t offer it, and doctors don’t offer solutions because parents don’t ask. Child and parent experiences can lead to medical anxiety that persists throughout life. But It Doesn’t Have To Hurt!
On 1st November 2019, The Canadian Paediatric Society published a Position Statement with detailed guidance on Managing pain and distress in children undergoing brief diagnostic and therapeutic procedures. The resource includes all supports described here, and more.
These basic supports are among the most important child life skills parents and medical professionals can learn to support children through needle-related procedures. Whether the child needs only routine interventions in the course of healthy early years, or complex life-saving care, we can bring immense comfort, calm and practicality to the procedure.
Parents, please ask the medical team how to manage your child’s pain during a specific procedure, and for support to use the techniques described above. Medical professionals, please learn the recommended options for different procedures, and incorporate them into regular practice. Simple supports can help make needle related care easier for everyone involved.