Affiliations: [a] SINTEF Digital, Oslo, Norway | [b] Department of Neurohabilitation, Oslo University Hospital, Oslo, Norway | [c] K.G. Jebsen Centre for Neurodevelopmental Disorders, University of Oslo, Oslo, Norway | [d] Institute of Clinical Medicine, University of Oslo, Oslo, Norway | [e] Nordstrand District, Municipality of Oslo, Oslo, Norway | [f] Department of Behavioural Science, Oslo Metropolitan University, Oslo, Norway | [g] Department of Pharmacy, University of Oslo, Oslo, Norway
Abstract: 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.
