Parents’ experiences of pain and discomfort in people with learning disabilities

Abstract

Accessible summary Eight parents of adults with learning disabilities were interviewed about their experience of managing their son or daughter’s pain. Parents developed trial and error methods of identifying pain and managing this. Parents reported having mixed experiences of the services their sons/daughters had received. Parental carers play a crucial role in the pain management of adults with learning disabilities. This research matters to people with learning disabilities because it informs professionals of the importance of listening to parental carers’ views and experiences in the successful management of ill health and pain in situations where the sufferer has limited verbal communication. Good practice statement The results of this study have already been presented to health professionals who work with people with learning disabilities, within the first author’s organization, as well as at a conference about pain in people with learning disabilities. Further work is intended to publicize the findings to people with learning disabilities and their carers.SummaryThere are few measures of pain for people with limited ability to communicate. Eight parents of adults with a known learning disability and associated physical health complaint were interviewed to explore their experience of identifying and managing the pain felt by their children. The parents did not often perceive their son or daughter to be in pain or discomfort, which was an unexpected finding given the sampling strategy. They described, however, specific ways of recognizing pain and would use a trial and error process to determine the cause. Parents had strategies for dealing with pain and reported mixed experiences of service interactions. The emerging themes can be related back to the pain literature and psychological theory. They emphasize the importance of involving parents in pain assessment and represent the first stage of research into a previously unexplored area.