Understanding the Concepts of Death in Bereaved Teens with Intellectual Disabilities: An Examination of Measurement Tools

Teens with intellectual disabilities experience disenfranchised grief, as they are often excluded from death education and rituals. Such exclusion can impact opportunities to understand the concepts of death and process the loss. This paper examines the psychometric properties of the limited existing tools designed to measure the understanding of concepts of death in parentally bereaved teens with intellectual disabilities (ID) who are included in after-death rituals as compared to those not included. A literature search uncovered no tools for the concept of death understanding for teens with ID, but four related tools were examined due to their potential proximal applicability. Though further development would be needed, the EsCoMu Scale and the Concept of Death Questionnaire showed the most potential use for this population. Further research is needed to develop a tool specific to teens with ID that takes into account the developmental, cognitive, and social aspects of their grieving experiences.