Aim Little is known about pain and illness communication between young children and their parents. We aimed to gain an in depth understanding of how parents make sense of their young children’s pain and illness expressions and how they respond to them.
Methods 48 parents of children (1–5 years inclusive) participated in focus group discussions at 7 children’s centres across England. Parents were asked to describe their children’s communication of everyday pain and illness. Thematic analysis was used to encode the data.
Results Three main themes were identified: 1) Parents believed children’s pain communication served multiple purposes including expression of physical and emotional distress, and the pursuit of various goals such as pain relief, attention seeking, and situation avoidance. 2) Parents faced challenges in interpreting their children’s pain behaviours due to limitations in children’s cognitive development and communication skills, but also due to their own beliefs towards childhood pain and illness. 3) Parents described some uncertainty in decision making about the nature and severity of children’s pain; this was associated with considerable distress regarding the best course of action for pain management and a fear of over- or under-treatment. Parents were critical of the health care system and reported that they are not always listened to by general practitioners.
Conclusions Parents have well developed, although personal, ways of recognising and responding to their children’s communication of pain and illness; they need to be included as more active partners in their children’s pain assessment and management.