Six year old Rebecca had no words
to describe the pain she suffers
from ARTHRITIS...
...so she drew it

(Arthritis Research Campaign Poster 1997)

Children and Pain

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 how 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 as more like his daughter always having symptoms of flu, rather than painful joints. However, most parents and most children describe pain as a considerable cause of distress and worry.

Disability versus pain

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 painful today, even when the joint 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 about not being understood thus:

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, reported more social discrimination and received less support.[3,4]

Attitudes to pain in childhood

Historically, pain in children has been underestimated and widely under-treated.[5] In the past, textbooks and research noted that 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.[6] 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 little partnership with parents, and little involvement of parents in the treatment of children. The historical legacy is that healthcare professionals may be likely to underestimate how much pain children experience.

There has been more recent research, and more would be welcome. Pain relief is now given to children and it is recognised 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 per se.

Typical posture of child with arthritis

Sitting 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 rest their curled hands in their lap, and sit with their shoulders forward. 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.

Child with arthritis standing

Healthy child standing

[1] Burrows F. & Berde C. (1993) Optional pain in infants and children. British Medical Journal. Vol. 307 page 815-816.
[2] Barlow J,Harrison K, Shaw KL (1998) The experience of parenting in the context of Juvenile Idiopathic Arthritis. Clinical Child Psychology & Psychiatry 3(3), pages 445-463,
[3]Rapoff M (1982) Compliance of pediatric patients with medical regimens: a review and evaluation. In Stuart R (Ed), Adherence, generalisation, and compliance in behavioural medicine. New York, Bruner/Mazel, pages 79-124
[4] Page G (1991) Chronic pain and the child with juvenile rheumatoid arthritis. Journal of Pediatric Heath Care, 5 (1) pages 11-16. (American spelling)
[5] Gibson F & Llewellyn (1997) Learning about paediatric pain. Paediatric Nursing, 9(10) page 20-23.
[6] Beales JG, Keen JH, Holt PJL (1983) The child’s experience of the disease and the experience of pain in Juvenile Idiopathic Arthritis. Journal of Rheumatology, 10(1), pages 61-65.