Not knowing—the problem of pain in children with severe neurological impairment

This study uses a grounded theory approach to explore the diagnostic and clinical decision-making processes used by parents and healthcare professionals in relation to pain in children with severe to profound neurological impairment. Three forms of knowledge are required for optimal pain assessment and management (1) knowing the child, (2) familiarity with children with the same or similar conditions and (3) knowing the science. Pain relief can be compromised by systems of care that fragment rather than integrate care. A model which integrates knowledge of child, population and science is proposed together with an intersubjective attitude to assessing pain.