‘That's what makes me better’: Investigating children and adolescents' experiences of pain communication with healthcare professionals in paediatric rheumatology

BACKGROUND: Pain communication should be an integral part of clinical consultations, particularly in paediatric rheumatology where children and adolescents frequently present with chronic musculoskeletal pain. To date, literature exploring the nature of and extent to which pain communication occurs has focused on healthcare professionals as respondents, yielding inconsistent and incomplete findings. The aim of this study was to explore children and adolescents' experiences of pain communication in the context of paediatric rheumatology consultations. METHODS: Data were collected using semi‐structured telephone interviews with children and adolescents recruited from three tertiary paediatric rheumatology centres in the United Kingdom. A framework analysis approach was used to explore the similarities and divergences in participant accounts. RESULTS: Twenty‐six children and adolescents (aged 6–18 years, median = 14, 58% female) participated. Diagnoses included: juvenile idiopathic arthritis, Chronic Idiopathic Pain Syndromes, Ehlers Danlos Syndrome/Hypermobility. Four themes were identified: (1) Co‐ordination of pain communication; (2) Barriers to pain communication; (3) Facilitators of pain communication; (4) Dissatisfaction with pain communication. These themes particularly encompassed the process of communication, disclosure of effective and ineffective approaches and the impact of communication. Participants expected questions about pain, felt cared about and found talking about pain natural. Challenges included augmenting the feeling of being different to peers and concerns about management plans changing as a result of pain conversations. CONCLUSIONS: Children and adolescents recalled a range of effective and ineffective pain communication approaches. Our study informs recommendations which highlight how healthcare professionals can improve their communication about pain with children and adolescents in the future. SIGNIFICANCE: Our findings demonstrate that children and adolescents attending paediatric rheumatology expect to be and value being asked about their pain during consultations with healthcare professionals. Children and adolescents remember many of the processes involved, experiences of and the outcomes of pain communication. The current study reveals insights which can improve healthcare professional pain communication with children and adolescents. Our study introduces key recommendations for healthcare professionals to have more effective pain conversations in future.