"My child needs a chance and a choice to talk about their pain": Parents' experiences and perspectives of pain communication in paediatric rheumatology.

Abstract

To investigate parents' experiences and perspectives about pain communication with healthcare professionals in paediatric rheumatology. Data were collected using semi-structured telephone interviews with parents of children/adolescents recruited from three UK tertiary paediatric rheumatology centres. A framework analysis was used to characterise parents' experiences and perspectives. Eighteen parents participated. Their children had a median age of 13 years (SD= 3.16 years, Range= 6-16 years, 55 % male), with diagnoses of chronic primary pain (e.g. Ehlers Danlos syndrome/Hypermobility) and chronic secondary pain (e.g. Juvenile Idiopathic Arthritis). Data were organised into four themes: 1) Parents' active role in pain communication, 2) Building blocks of effective pain communication, 3) Stark realities of pain communication and 4) Purpose for prioritising pain communication. Parents discussed their role in advocating for their child and encouraging their child to communicate about their pain. Parents reported experiences of unsatisfactory pain management advice being provided and frequent experiences of their child's pain being dismissed by healthcare professionals. Findings emphasise several advantages of involving parents in communication about their child's pain, as well as a range of challenges in pain communication with healthcare professionals from parent perspectives. These findings inform recommendations to facilitate more effective pain communication approaches which include parents in the future.