Parents' Experiences of Caring For a Child with Chronic Pain

Abstract

Involvement of parents in their children’s pain management is universally accepted as best practice, yet there is little understanding of their needs. Twelve parents of children with chronic pain were recruited to this study where the impact of caring for a child with chronic pain was explored. All parents started in distress, and most moved into a stance that enabled them to balance the child's needs with their own. These parents discussed “stepping back” from their child’s distress and gaining mastery over fearful emotional reactions. A minority remained in distress, finding an adaptive response to the child’s pain challenging. Catastrophic thinking, fear of pain and the desire to fulfill a nurturing parental role led parents to place themselves continually “on call.” Findings indicate that parents might require support to care effectively for their children, and that many the actions necessitated by child pain require complex and counterintuitive decisions.