Pain management during end-of-life care: Support for individuals with intellectual disabilities

Aim: Examining the provision of end-of-life care for individuals with intellectual disabilities (ID) is a relatively new research area, with limited investigation of how such support is provided. The aim of this study was to identify aspects of current end-of-life care practices considered by carers to be unsatisfactory. Method: Focus groups with a total of 35 participants were conducted in two capital cities and four rural centres in New South Wales and Queensland, Australia. A semi-structured guide was used, with one specific focus being on pain management issues. All focus group data were independently transcribed, and thematic analysis was undertaken. Results: The participants identified problems with pain management for people with ID. These issues included failure to recognise the need for any pain management, poor identification of pain, limited monitoring of pain, communication problems and inappropriate review of treatments. Conclusions: Specific recommendations are made for Australian-based health and community services that support individuals with ID during end-of-life. These recommendations are premised on explicit changes to daily practice that better meet the pain management needs of individuals during their end-of-life.