Background & Aims
Chronic musculoskeletal pain in children and adolescents is often managed in paediatric rheumatology (1, 2). Here, communication about pain and its impact is important, as it enables healthcare professionals to validate experiences (3) and capture information to inform further pain assessment and treatment (4, 5). However, pain communication in paediatric settings is a complex social transaction, involving the child/adolescent with different developmental considerations, parents and a range of healthcare professionals. The barriers and facilitators to pain communication from the perspective of children/adolescents and healthcare professionals have been previously characterised. However, parents’ experiences of communicating about their child’s pain have been minimally considered. The aim of this study was to investigate parents’ experiences and perspectives about pain communication during their child’s clinical consultations in paediatric rheumatology.
Methods
This was a semi-structured telephone interview study with parents of children/adolescents being managed in UK paediatric rheumatology centres. Three centres facilitated recruitment. Interviews were conducted between April-October 2021. Questions were designed to explore the importance of, barriers and facilitators to, and outcomes of pain communication. The design of questions was informed by a patient advisory group who reviewed proposed questions and modified question wording. Interview data were transcribed and analysed in NVivo. A framework analysis was used to characterise and compare parents’ experiences and perspectives about pain communication. This analysis involves coding data and building a preliminary framework of themes and sub-themes. This framework is modified throughout the analysis process, until all participant data can be indexed using the framework. This produces a matrix summarising how each theme and sub-theme relates to each participant’s narrative.
Results
Eighteen parents participated. Their children had a median age of 12.5 years (range= 6-16) and diagnoses of arthritis (n=12), chronic idiopathic pain (n=3) or Ehlers Danlos Syndrome (n=3). Four themes were identified:
Theme 1=Parents’ active role in pain communication: Parents communicated observations about their child’s emotional changes at home (e.g. being ‘grumpy’) that could signal heightened pain and encouraged their child to communicate pain.
Theme 2=Building blocks of effective pain communication: Parents identified that familiarity between their child and healthcare professionals was important, as were professionals who empowered children to communicate.
Theme 3=Stark realities in pain communication: Parents explained how little practical support and even inappropriate advice was provided by healthcare professionals.
Theme 4=Prioritising pain communication: Parents felt communication about pain showed that healthcare professionals believed their child’s pain.
Conclusions
Findings highlight the advantages of involving parents in pain communication, such as their role in advocating for their child, supplementing their child’s pain report with additional information based on personal observations, and encouraging their child to communicate pain. Findings also emphasise a range of challenges in pain communication from parent perspectives, such as past experiences with healthcare professionals who provide unsatisfactory pain management advice and who dismiss their child’s pain. Past research has identified that children/adolescents also frequently perceive pain dismissal in their interactions with healthcare professionals (6). Although many parents consider themselves to be well-placed informants about their child’s pain to healthcare professionals, past research has identified that some children/adolescents actively hide their pain from their parents to protect them from further burden. This is a key contrast between perspectives about communication.
References
1. Clinch J, Eccleston C. Chronic musculoskeletal pain in children: Assessment and management. Rheumatology. 2009;48(5):466-74.
2. Davies K, Copeman A. The spectrum of paediatric and adolescent rheumatology. Best Practice & Research Clinical Rheumatology. 2006;20(2):179-200.
3. Edmond SN, Keefe FJ. Validating pain communication: Current state of the science. Pain. 2015;156(2):215-9.
4. Hadjistavropoulos T, Craig KD, Duck S, Cano A, Goubert L, Jackson PL, et al. A biopsychosocial formulation of pain communication. Psychological Bulletin. 2011;137(6):910-39.
5. Craig KD. Social communication model of pain. Pain. 2015;156(7):1198-9.
6. Lee RR, Mountain D, Connelly M, Palermo TM, Peters S, Cordingley L, et al. “That’s what makes me better”: Investigating children and adolescents’ experiences of pain communication with healthcare professionals in paediatric rheumatology. European Journal of Pain. 2022;27(1):111-28.
Presenting Author
Rebecca R. Lee
Poster Authors
Rebecca Lee
PhD
University of Manchester
Lead Author
Jade Edwards
MSc
Manchester Centre for Health Psychology, The University of Manchester
Lead Author
Danielle C. Mountain
MSc
The Centre for Musculoskeletal Research, The University of Manchester
Lead Author
Janet McDonagh
MD FRCP
The Centre for Musculoskeletal Research, The University of Manchester
Lead Author
Mark Connelly
PhD
Division of Developmental and Behavioral Health, Children’s Mercy Kansas City
Lead Author
Tonya Palermo
Tonya Palermo
Lead Author
Sarah Peters
PhD
Manchester Centre for Health Psychology, The University of Manchester
Lead Author
Lis Cordingley
PhD
The Centre for Musculoskeletal Research, The University of Manchester
Lead Author
Topics
- Pain in Special Populations: Infants/Children