Using heart rate monitoring to discover pain and discomfort in non-verbal persons with severe intellectual disability: Caregivers’ experiences

BACKGROUND Non-verbal persons with intellectual disabilities (ID) may suffer from pain or discomfort, but caregivers may not notice this because of the communication difficulties. Previously, we conducted a study in which professional caregivers used heart rate (HR) monitoring to identify situations that cause acute pain or distress in the everyday life of non-verbal persons with ID. OBJECTIVE To explore professional caregivers’ experience with using HR monitors to better understand non-verbal persons with ID. METHODS Fifteen professional caregivers and 30 final-year students of social education were recruited as informants based on their experience with HR monitoring in non-verbal persons. The informants were interviewed, and they responded to a questionnaire with open-ended questions. The qualitative data were analysed thematically. RESULTS Caregivers reported that HR monitoring provided information about acute pain, acute or prolonged distress, occurrence of epileptic seizures, and the non-verbal persons’ preferences and dislikes. HR data had to be interpreted contextually to be meaningful. Some informants found HR monitoring time-consuming or the interpretation of HR data challenging due to multiple possible causes of increased HR. CONCLUSIONS Caregivers experience HR monitoring as a potentially important source of information that may help them better understand non-verbal persons with ID.