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Children and young people’s experiences of pain communication with rheumatology professionals

by | Jan 26, 2023 | Research summaries | 0 comments

This post is a summary of CHAMP research published in the European Journal of Pain.

Our goal

Limited research has investigated children and young people’s experiences and perspectives of pain communication with parents and with healthcare professionals during clinical appointments. Past research has demonstrated that some children and young people believe that healthcare professionals do not understand their pain and do not provide them with pain management advice. Past research has also highlighted that children and young people find it challenging to engage directly in pain conversations themselves.

Our CHAMP research team were particularly interested in further investigating children and young people’s experiences and perspectives of how pain communication occurs in paediatric rheumatology settings, because pain can be a priority for some children and young people to discuss in these consultations, and less of a priority for other children and young people who experience less pain. We were interested in this as the ultimate aim of our research is to improve pain assessment and communication, for which we need to better understand children and young people’s experiences and perspectives of these processes in order to be able to improve things.  

What we did

In this study, we conducted interviews with twenty-six children and young people who were managed within paediatric rheumatology settings in the UK. Children and young people had a range of diagnoses including juvenile idiopathic (unknown cause) arthritis, chronic (persistent or recurring) idiopathic pain syndromes, and hypermobility (increased or excessive range of movement).

We asked children and young people questions about how healthcare professionals started conversations about pain with them, what types of questions they asked children and young people and how conversations about pain differed over time with different professionals. We investigated similarities and contrasts in the experiences and perspectives of children and young people in their responses to these questions.

Patient perspectives

In this research, children and young people:

  • talked about how pain conversations were co-ordinated, the processes involved in pain communication and what they found was valuable within these pain specific conversations;
  • expected questions about pain in every consultation, felt cared about when healthcare professionals asked them about pain and they found talking about pain natural because it had usually been something they had lived with for a long time;
  • highlighted some of the difficulties of talking about pain during consultations, which included challenges with pain conversations highlighting that children and young people were different to their peers (who did not have to talk about pain);
  • talked about finding pain conversations difficult as sometimes it would mean that the management of their condition would change.

Next steps

We have used the experiences and perspectives from children and young people who took part in this study to inform and develop recommendations to improve how healthcare professionals communicate about pain with children and young people in the future. Our findings and these recommendations will lead to more effective pain assessment and communication in the future and will have a real world clinical impact.