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Introduction
For the majority of families of children with arthritis, coping with a child in pain is the most distressing part. Understanding the experience of pain in children is very difficult, but for parents this is the key to understanding hoe the disease affects the child physically, socially and emotionally. Watching your child in pain, even if the pain passes, somehow causes a unique form of distress in parents. When a child develops arthritis their experience of discomfort or pain may become global. Professionals seek to manage the child's pain but also need to recognise the distress of parents and help them to use different strategies to prevent or manage their child's pain.
Sometimes in textbooks, there is little reference to the pain experienced by children, yet all our contact with families indicates that this is one of the biggest issues for parents. Some children generally but continually feel unwell, and their joints ache, rather than being painful. One father described it more like his daughter always having symptoms of flu, rather than painful joints. However, most parents and most children do describe pain as a considerable cause of distress and worry.
One mother said 'immobility and pain makes the joy of play just armchair viewing'.
Several studies indicated that children's reports about pain levels did not correlate with their observable, measurable disability[1]. One group of researchers[2] showed that children regarded the things they could not do (disability) differently from their experience of pain. Those of us who live with children with arthritis know that sometimes children will use their own terms to tell you that a particular joint is particularly painful today, even though there is no outward sign why, and that joints seems to move as normal. At other times, a child will say that a joint is not working properly today, but it is not a problem because it does not hurt much. This can be frustrating for a helper, parent or professional, and far more research would assist all of us to understand this complex topic better.
One girl described her frustration thus:
When people can see there is an obvious need (especially if there is additional cues like splints, a wheelchair or crutches), most people will try to help. But pain is an internal phenomenon to the child, so little help, support or understanding will be offered. This may explain why some studies have shown that children with less evident disability experienced most psychological distress, more social discrimination and received less support.[3]
Historically, pain in children has been underestimated and widely under-treated.[1] In the past, textbooks and research noted children with arthritis reported less pain than adults with arthritis. In one study when a medical examination was carried out, the level of measurable disease did not necessarily tally with what children reported about their pain. Researchers concluded that children felt less pain. In addition, old research sometimes showed that when asked about their children with arthritis, parents tended to report higher level of pain than their child did. The researchers concluded that parents tended to exaggerate their child's pain and inferred that they were not to be relied upon when assessing the child's pain.
This approach was in an era when 'doctors knew best'. There was no partnership with parents, and little involvement of parents in the treatment of children. The historical legacy is that healthcare professionals are likely to underestimate how much pain children experience.
There has been more recent research, and more would welcome. We now give more post-operative pain relief is now given to children and recognise that even babies experience treatable pain or distress. We know that children with arthritis still report lower levels of pain compared to adults but we understand more about why children find it difficult to locate and describe their pain. There is no evidence that children with arthritis experience less pain than adults with arthritis.
Children who hurt adopt a posture that relieves some of their discomfort. This posture includes bending all their joints, so that they walk with bent knees, a bent back and with their arms forwards and bent. When the child is seated, they often rest their curled hands in their lap, and sit with their shoulders forward. This is why when they are asleep the children fold into a foetal position, but become so stiff that it is particularly difficult to 'unfurl' them in the morning.
If young children knock themselves or fall you can tell whether they have hurt themselves, often because there will be tears and wounds to prove it. If they have a tummy or head ache it is more difficult for you to assess it because the child is too young to communicate where it hurts or how it hurts: but parents know that something is wrong, because the child is not their 'normal' self. When a child has a pain for many days or weeks, it seems likely that she may begin to regard that pain as being 'normal'. Evidence from older children anecdotally supports this. For example, one thirteen year old girl said that she had believed until recently, that everybody felt pain walking down stairs. She certainly had always felt pain in her hips, knees and feet and expected that this was normal. It was only later that she discovered that this was not 'normal' but because she had arthritis.
There is some research evidence that older children learn about pain from the adults around them. They may learn that saying you hurt gets a lot of attention. As their vocabulary increases, and they become more aware of different parts of their body, children become more skilled at locating their pain and describing it. You can help by giving them describing words that you know they understand, for example whether it is sharp cutting pain, or hot, or dull and achy, or heavy and stiff pain etc.
Pain is subjective and will affect different people in different ways. Coping with pain is more demanding if you are very tired, depressed, or under a lot of stress. Pain from arthritis changes hourly and is caused by a combination of the following factors: