Not all cries are the same: Understanding pain in children who cannot speak | Action Medical Research

Touching Lives - June 2003

Not all cries are the same: Understanding pain in children who cannot speak

Giorgia has severe neurological impairments and has little speech or voluntary movement. She is unable to communicate her pain effectively. Her mum, Rebecca has to decide what the pain is and what pain relief to give her. It can be a huge pressure to know what to do, as Giorgia needs a variety of treatments.

Rebecca and Giorgia have taken part in an Action Medical Research project, supported by a lottery grant from the Community Fund, that is helping to devise guidelines for assessing children’s pain in those who have limited means of communication.

At present there are few formal guidelines, although there are as many differing opinions as clinicians as to what a particular pain could be! A new assessment tool, known as the Paediatric Pain Scale will help doctors and parents to understand the child’s pain better and enable them to give the most appropriate pain relief, whether that is something as simple as a paracetomol for a headache or morphine for very serious pain.

I’m a mother, not a doctor

Rebecca Patience explained: “Nobody knows Giorgia like I do, and so being part of this project has really helped to bring together the doctors, nurses and teachers to all think about Giorgia’s pain and what is going to be the best way to help her.

“Everyone that is involved in her care helped in recording when and where she has pain and from this we could see patterns forming. Sometimes she is hurting so much that she cannot even cry, and as a mother this is so unbelievably distressing that you don’t know what the best thing is to do.

“Having some guidelines means that pain relief will be applied more accurately, depending on what the pain is. It will really help her teachers when I am not around to give advice. I’m a mother, not a doctor but I think it is very important that doctors listen to what the parents say about their children because they are the ones that are caring for them most of the time and know them best.

“I like to give Giorgia the best that I can give her and we like to do lots of things together. She really loves swimming so I took her to swim with dolphins, which she loved, but she also enjoyed jet-skiing and paragliding too! Giorgia’s a very active, social girl and I will always fight to make sure that she gets the best treatment that is available, just like any mum would.”

Bringing everyone together

Charmaine Champ is a Community Nurse Specialist and specialises in children with learning disabilities. Charmaine is also one of Giorgia’s carers.

She told us: “The pain scale has proved to be a really useful tool to use to try and identify what pains Giorgia is having. Just to be able to identify the pain and give consistent help is a great step forward. This invaluable project has brought together different specialists to think about the identification and treatment of pain in disabled children which hasn’t really been done before.

“The main reason why we started using the tool in Giorgia’s case was because of the pains in her head, although she also has pains in her knees and bad stomach problems too.

“We monitored her night and day over a period of a few months, and from this were able to build up a really accurate picture of what her day-to-day pain was. From this we can then discuss and plan ahead to give the most appropriate relief at the right time.”

The gap in knowledge about how to treat children like Giorgia, and the lack of guidelines has been a real problem in the past. But now other paediatric consultants have seen how well the new scale has worked in Giorgia’s case and are very positive about being able to use it on other children. The scale will also be made available on the Internet so it will be possible for it to be used by doctors and parents worldwide.

Charmaine continued, “It’s really great that the first time we have used the scale has been such a success. Bringing together the many conflicting opinions and from that ^developing a tool that will be really useful in alleviating pain in very sick children is a huge achievement^. Action Medical Research can be really proud to have funded such a worthwhile project.”

10,000 children

In the UK there are around 10,000 children with severe motor and learning disabilities who are cared for by their parents. These children can be particularly prone to pains such as heartburn, earache and hip dislocation, so it is vitally important that their parents and carers know when to intervene to relieve their pain.

Dr Ann Goldman, Consultant in Palliative Care at Great Ormond Street Hospital for Children and Dr Anne Hunt, a Research Fellow at the Radcliffe Infirmary, Oxford, led the Action Medical Research project.

Dr Goldman said: “A large number of parents who were interviewed for the study said that they were aware that their child had particular pains. Nearly half of the parents reported that their child was affected by these pains, if not all of the time then at some points during each day. And about twenty percent of children were reported to have daily pain that was severe or very severe.”

How the scale works

The pain scale was originally devised using data from a questionnaire survey of 300 parents and from interviews with parents and health care professionals. The scale has twenty different types of pain ‘cues’. These include:

  • vocal cues
    • moaning
    • whimpering
    • crying without tears
    • crying with tears
  • changes in posture
    • stiffening
    • spasming
    • restlessness
  • changes in facial expression
    • grimacing
    • frowning
  • changes in mood
    • withdrawn
    • self-harm
  • changes in eating or sleeping habits.

Each of the behaviours in the scale is rated between zero and three for the extent to which it occurs within a given time. Because the parents’ role in assessing pain in this group of children is so important the scale has been incorporated into a record that the parent can keep at home.

Action Medical Researcher Dr Goldman has high hopes for the new pain scale: “Children often receive less effective pain management than adults simply because they are not able to articulate how they are feeling. We hope this scale will help parents and professionals to interpret the child’s behaviour and lead ultimately to better management of their pain.”

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