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 Á parents as lifelong 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.

Parent‐reported pain in non‐verbal children and adolescents with cerebral palsy

“…6 According to Stahle-Oberg et al, 6 parents perceived that both chronic and acute pain were not effectively addressed. Despite this, pain is suboptimally addressed among children with CP.…”

“…Despite this, pain is suboptimally addressed among children with CP. 6 According to Stahle-Oberg et al, 6 parents perceived that both chronic and acute pain were not effectively addressed. Assessing pain among non-verbal children with CP poses a unique challenge.…”

Assessments of pain in children and adolescents with cerebral palsy: a retrospective population‐based registry study

“…Intensive pain can further lead to children with CP becoming anxious . Parents of children with CP in Sweden have reported that their children do not receive appropriate care from the health services, either for acute pain, such as postoperative pain, or for chronic long‐lasting pain …”

“…11 Parents of children with CP in Sweden have reported that their children do not receive appropriate care from the health services, either for acute pain, such as postoperative pain, or for chronic longlasting pain. 12 With the aim of preventing painful musculoskeletal complications of CP, especially hip dislocation, CPUP (http://cpup.se/), a follow-up surveillance programme for people with CP, was started in Sweden in 1994. The follow-up includes regular assessments by physiotherapists and occupational therapists at the rehabilitation services.…”

Pain in children with cerebral palsy – adolescent siblings’ awareness of pain and perceived influence on their family

“…Parents feel that their children with CP lack optimal care and pain treatment. Throughout their lives, the children depend on their parents to interpret and express their pain, and to mediate with health care personnel [3,[11][12][13].…”