Stage 1

PPP - Stage 1 Development

In order to develop the Paediatric Pain Profile we needed first to know what sort of behaviours children with severe disability might display when they have pain. We used two different methods for investigating this, in-depth interviews with parents and health care professionals and a survey of parents of children with severe physical and learning impairments.

The interviews

We interviewed 26 health care staff and 20 parents of children with severe physical and learning disabilities. The children described ranged from 1 to 18 years. Both the parents and staff reported that children suffered from a variety of pains, many of them recurrent and persistent. The parents described how they primarily identified pain through changes in their child's behaviour, such as changes from their child's usual cry, posture and movements, facial expression and mood. The staff, whilst they might not know individual children as well as parents, described how they sometimes identified pain because they recognized patterns in the child's behaviour that they had seen in other children.

Some parents reported that it could be difficult to communicate with health care providers about their child's pain. This was often when the professional carer did not know the child very well and did not have very much experience with children with severe disability. In addition, they might not have very much knowledge of the best ways to relieve that pain.

The study suggested that different types of knowledge each have something to contribute to the assessment and management of pain. We concluded that we should seek to provide health care services in ways that integrate different types of knowledge, the knowledge of the child, familiarity with disabled children as a group, and knowledge of the science of pain management.


We have written a paper based on the interviews. This is the reference.

Hunt, A., Mastroyannopoulou, K., Goldman, A., Seers, K., 2003. Not knowing - the problem of pain in children with severe neurological impairment. International Journal of Nursing Studies 40 (2), 171-183.

Click on link to get abstract from PubMed

The surve

The questionnaire was returned by 120 parents, 45% of those to whom it was sent. Parents described the sorts of pains that their children suffered and the behavioural cues which led them to identify that their children had pain. 56 behaviours were reported which were included in the set of items to be tested in Stage 2.

PPP Developemnt PPP Stage2