Parents’ experience of pain in children with cerebral palsy and multiple disabilities – An interview study

Abstract

Pain seems to be a common problem among children and adolescents with cerebral palsy (CP) suffering from multiple disabilities. Knowledge is scarce regarding receiving and treating pain in these children. The aim was to illuminate pain in children with CP from the parents’ experience. In order to capture the parents’ own perceptions and experience, a qualitative method was chosen, the Grounded Theory. Thematic interviews with 13 parents were analysed. Triangulation and reference group checking were used to increase credibility. The analyses resulted in one core category – parents as life-long pain interpreter, mouthpiece and mentor. The results indicate that both long-lasting pain and acute post-operative pain among these children were not sufficiently cared for. A multidisciplinary team specialized in receiving and treating patients in pain is required to provide optimal care and treatment of these children and their families. The physiotherapists in the team may provide deeper knowledge on how to prevent, diagnose and treat pain among children with CP.

• Care
• Grounded Theory
• non-verbal
• pain communication
• pain history