Abstract
Background: Intellectual disability affects approximately 1% of the population. Individuals with intellectual disability (hereafter “users”), often have communication difficulties. Users with severe or profound intellectual disability may have severe communication difficulties. These individuals are at risk of developing pain and discomfort without being able to tell their caregivers. We wanted to find out how caregivers who work with users with severe communication difficulties, experience their own understanding of the users. In addition, we wanted to find out if the caregivers have experienced any adverse consequences from the communication difficulties, both for the users and for themselves. Methods: An online questionnaire was distributed to caregivers in communal user residences. We developed the questionnaire based on review of relevant literature, our own experience, and through discussion with our supervisors. The questionnaire was first tested in a pilot study with 17 participants. Based on this study, we performed an exploratory factor analysis, and changed the questionnaire based on the results of the analysis. The questionnaire was then distributed for the main survey. After the main survey, we performed a confirmatory factor analysis. Then we analyzed and described the results from the main survey. Results: The main survey was completed by 135 caregivers. To a variable degree, caregivers found it challenging to understand the emotional and physiological needs of the users. 39% of the caregivers responded that they had experienced adverse consequences for the users related to communication difficulties. 34% of the caregivers responded that they had experienced adverse consequences for themselves related to communication difficulties. We did not find a correlation between how long the caregivers had been working with the user or the user group on the one hand, and the caregivers’ perception of their understanding of the users on the other. Conclusion: Caregivers who work with users to understand them, and that the communication difficulties may have adverse consequences for both the caregivers and for the individuals with intellectual disability. These findings tell us there may be a need for measures to improve the communication between caregivers and individuals with intellectual disability.