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

Abstract

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.

How do we explain painful chronic non-traumatic knee conditions to children and adolescents? A multiple-method study to develop credible explanations

“…Caution will be required to ensure that CMP explanations do not become more heterogenous as clinicians move from simple biomedical interpretations of pain to a broader and more nuanced biopsychosocial perspective that incorporates pain complexity and reasons for persistence [1,2,64]. Lee et al found a range of effective and ineffective communication approaches among adolescents suffering from CMP conditions; similar to our study, they emphasized the importance of providing clear and tailored pain management advice for each individual [34]. Together with our results, this highlights the tremendous impact these mixed messages provided by clinicians have; we found adolescents reported their anxiousness was amplified, due to varying explanations and advice from clinicians [39,60].…”

“…Clinicians were commonly described to use heterogeneous terminologies and explanations that did not fit with adolescents existing beliefs (i.e., perception of the cause of the pain and expected management) [39,46,60]. Heterogeneous and non-person-centered pain terminologies were highlighted as a core issue for children and adolescents' that impaired their ability to understand their pain [14,34]. Our findings concerning the role of diagnostic uncertainty in the qualitative studies shed light on a challenging area for clinicians, as it emphasizes the importance of clear communication between clinicians, adolescents, and their parents [34,44,46].…”

“…Heterogeneous and non-person-centered pain terminologies were highlighted as a core issue for children and adolescents' that impaired their ability to understand their pain [14,34]. Our findings concerning the role of diagnostic uncertainty in the qualitative studies shed light on a challenging area for clinicians, as it emphasizes the importance of clear communication between clinicians, adolescents, and their parents [34,44,46]. Caution will be required to ensure that CMP explanations do not become more heterogenous as clinicians move from simple biomedical interpretations of pain to a broader and more nuanced biopsychosocial perspective that incorporates pain complexity and reasons for persistence [1,2,64].…”

“…Research in pediatric chronic pain has increased in recent years; however, studies have requested translation and mobilization of findings into real-world practice [14,34,47]. We aimed to develop credible explanations to be used as patient material and mobilize evidence-based knowledge into practice to improve information consistency and meaning regarding pain terminologies.…”

“…Our findings highlight the (potential) value of involving end-users when creating patient materials; we made substantial changes based on the think-aloud exercises. This emphasized that clinicians' language must be adapted to adolescents' level to ensure correct interpretation of health information [14,15,34]. Reis et al developed a comic book with the purpose of providing validated pain education for children; although their work included involving of end-users, they still found that over a quarter of included children did not feel satisfied with the content and almost a fifth did not feel it helped them understand pain [57].…”