Ambiguous or blunted responses to sensory and painful stimuli among individuals with severe intellectual disabilities and comorbid communicative impairments put them at risk for having their experience of pain discounted and their expression of pain misinterpreted. Valid measurement procedures of behavioral expression are critical for this vulnerable group of individuals. We investigated a sham-controlled sensory-testing protocol as an approach to guard against observer bias during nonverbal behavioral recording for individuals with intellectual disabilities. Participants were 44 (52% male) adults (mean age = 46, sd = 10) with moderate (14%) and severe to profound (86%) intellectual impairment. The facial behavior of the participants before, during, and after 5 sensory-stimulation modalities (pin prick, light touch, deep pressure, cool, warm) was coded by 3 raters using the Facial Action Coding System (FACS). For each participant, the 5 active sensory trials were randomized with sham trials during which no stimulation was applied. Observers were blinded to active vs sham stimulation status. FACS scores increased significantly during active sensory trials (P < .05) compared with sham trials. There were significant effects for gender, with females more expressive than males (P < .05). There were also significant effects for the presence of self-injurious behavior (SIB), with individuals with SIB more expressive than individuals without SIB (P < .05). The results suggest that the procedure was valid (ie, distinguished between active vs sham sensory stimulation) and provides additional evidence that individuals with significant intellectual impairments are sensitive to tactile stimulation consistent with quantitative sensory-testing protocols. Perspective: This article presents a novel application of a modified approach to quantitative sensory testing for nonverbal adults with intellectual and developmental disabilities. This approach could be important in helping determine sensory issues related to tactile and nociceptive processes among a highly vulnerable group of individuals.
Bibliographical noteFunding Information:
Supported in part by NICHD Grants No. 44763 & 47201 . There is no conflict of interest: the NICHD had no further role in study design; in the collection, analysis and interpretation of data; in the writing of the report; and in the decision to submit the paper for publication.
- intellectual disability