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Background: Many chronic musculoskeletal conditions with complex primary and secondary pain are managed in paediatric rheumatology settings. Ongoing communication about this pain is required between children/young people, parents and healthcare professionals to inform management decisions. The barriers and facilitators to communicating about pain have been characterised from children, young peoples’ and healthcare professionals’ perspectives. However, parents’ experiences of communicating about their child’s pain have been minimally considered.
Objectives: The objective of this study was to investigate parents’ experiences and perspectives about pain communication during their child’s clinical consultations in paediatric rheumatology.
Methods: Parents of children who were being managed within three UK paediatric rheumatology centres were recruited. Semi-structured telephone interviews were conducted between April-October 2021. Interview questions were designed to explore the importance of, co-ordination of and outcomes of pain communication. Questions about barriers and facilitators to effective pain communication were also asked to parents. A framework analysis was used to identify and compare parents’ experiences and perspectives.
Results: Eighteen parents (16 Mothers and 2 Fathers) reflected on communication about pain occurring during their child’s clinical consultations. Parents had children with a median age of 12.5 years (range= 6-16 years), median illness duration of 2 years (range = 0-11 years) and diagnoses of juvenile idiopathic arthritis ( n = 12), chronic idiopathic pain syndromes ( n = 3) or Ehlers Danlos Syndrome/hypermobility ( n = 3).
Four themes were identified:
Parents’ active role in pain communication; Parents played a key role in bridging communication between their child and healthcare professionals. Parents observed psychological and behavioural changes in their child, supplemented communication, and provided encouragement to their child to communicate about pain.
Acknowledging, understanding and validating pain experiences; Parents discussed how pain communication showed that healthcare professionals acknowledged their child’s pain, attempted to understand it, believed their experiences and took it seriously. Doing so demonstrated that healthcare professionals wanted to help their child.
Building blocks of effective pain communication; Parents discussed how familiarity and informal conversations were key for better pain communication. Healthcare professionals who directly involved children in pain communication and who empowered children to take ownership of pain conversations were particularly effective communicators.
Harsh realities of pain communication; Parents reported how some healthcare professionals captured pain assessment scores in place of narratives. Parents explained how some healthcare professionals provided little practical advice or support and sometimes even inappropriate advice, advising parents that they should ‘wait and see’ if pain changed.
Conclusion: Study findings highlight the integral, beneficial role that parents have in pain communication as well as a range of challenges in current pain communication approaches from parent perspectives. Findings will be used to create recommendations for improving pain communication, in a way that is acceptable to children/young people and also factoring in the advantages of including parents in these conversations.
REFERENCES: NIL.
Acknowledgements: This work was supported by a Foundation Fellowship award from Versus Arthritis (Grant 22433). Aspects of this work were also supported by funding from the Centre for Epidemiology Versus Arthritis (Grant 20380) and the NIHR Manchester Biomedical Research Centre. The authors would like to thank the participants for kindly taking the time to share their experiences and perceptions. The authors would like to thank YOUR RHEUM (
Disclosure of Interests: None declared.