Comparing self-reported vs. parent/caregiver reported levels of social participation for young adults with intellectual disabilities: A pilot study

Abstract

Background: This study focused on the level of satisfaction of social participation reported by young adults with intellectual disabilities, and the comparison of these levels to those reported by their caregivers. Methods: Fifteen young adults with intellectual disabilities and their parents/caregivers completed the Patient-Reported Outcomes Measurement Information System Satisfaction with Participation in Discretionary Social Activities–Calibrated Items (PROMIS SF–Social Sat DSA) and the Satisfaction with Social Roles and Activities–Short Form (Neuro-QoL SF). Results: Reports from these young adults were compatible to that of the general population. There was general agreement on the Social Sat DSA between the individuals and their caregivers, but there were differences between groups on the Neuro-QoL SF, with the caregivers typically giving higher scores ( p = .025). Conclusion: This pilot study demonstrates the importance of involving both the individuals with intellectual disabilities, and their parents/caregivers when conducting survey research. Further research is encouraged.