There is an increase in the number of children with profound cognitive impairments who are cared for at home and who require complex interventions. Often parents are responsible for the provision of these interventions; the amount of professional support for parents providing care in the home varies. Many children with profound cognitive impairments experience pain arising from a range of different causes (e.g., positioning, treatment-related, and the usual pains of childhood). This presentation will explore the experiences and perceptions of parents whose children experience pain as part of everyday life and how they manage this at home.

A longitudinal qualitative study was undertaken with eight parents caring for their child with cognitive impairment as part of a larger study that also interviewed health professionals. In-depth qualitative interviews were undertaken with parents prior to and on completion of a series of weekly structured telephone interviews taking place over an eight week period. The focus of data collection was on the nature and types of pain the child experienced, how parents determined if their child was in pain, their approach to management, the support they received and their perceptions of their child’s pain management. Data were analysed using thematic analysis.

Parents talked of the overwhelming sense of being ‘left to get on’ with managing their child’s pain. Parents reported that health professionals viewed them as experts on their child, but this was at odds with their own feelings of being ill-equipped and uncertain to effectively look after their child’s pain. The children experienced high levels of persistent pain that impacted on the child’s and family’s social, physical and psychological well-being. All of the families had experienced or continued to experience frustration with gaining recognition of their child’s pain from health professionals and receiving an appropriate, tailored course of action to meet their child’s needs.

In conclusion, this study demonstrates that health professionals should not assume that parents are experts in their child’s pain management. Professionals must become more pro-actively engaged with parents to ensure that persistent pain does not dominate the lives of children with cognitive impairment and their families.