Dealing with uncertainty: parental assessment of pain in their children with profound special needs

Background. Despite advances in the assessment and management of children's pain, children with profound special needs are especially vulnerable to poor pain management. Their underpinning condition often severely compromises their ability to express pain through the usual verbal and behavioural routes. The lack of any appropriate framework for assessment results in a suboptimum and inaccurate approach to an important aspect of their care. Purpose. The purpose of the study was to explore the ways in which parents of children with profound special needs assess and manage their children's pain. Methods. Qualitative case study design underpinned the study using guided interviews with the 15 parents/carers (of 12 children aged 5-16 years with profound special needs). Ethical approval. Ethics Committee approval was gained. Findings. A number of themes emerged from the data including learning to live with pain, dealing with uncertainty, expression of pain and making decisions. Conclusions. Parents felt that their child had learned to live with significant levels of chronic and acute pain. Assessment of pain was an uncertain and complex process requiring parents to draw on skills and knowledge developed over a number of years. Parents used different strategies for both the assessment and management of pain based on an intimate knowledge of their child's usual nonpain state. Even with a limited repertoire of behaviours available to them, children were able to express pain. Parents often felt isolated in relation to pain management and under-used as a resource by health professionals.