Analysis of Assessments for Examining Grief Experiences Expressed by Individuals with Intellectual Disabilities

Individuals with intellectual disabilities (ID) experience bereavement in the same manner as the general population but face communication barriers which can make the use of standardized grief assessments problematic, often leading to misdiagnosis and disenfranchisement of grief. Narrative quality allows for inference about an individual’s processing and understanding of an event. The greater an individual’s narrative quality in sharing their experience, the higher understanding and processing can be assumed. As part of a pilot for a grief support group for individuals with ID, intake interviews were conducted including the facilitation of a standard grief assessment. An expansion study informed an adapted assessment of narrative quality for the measurement and understanding of these individuals’ grief experiences. An existing assessment of narrative skill was adapted to appropriately examine the grief narrative of a pilot study participant. Preliminary findings identified prompting as an essential element in properly assessing the quality of narrative responses. The current study expanded understanding of the role prompting plays in appropriately assessing individuals with communication challenges. A three-phase directed qualitative content analysis was conducted. A comparison of standardized and open-ended grief assessment contexts is addressed in relation to the communication occurring within these facilitation contexts. The role of prompting and further adaptations to the adapted narrative assessment as informed by the analysis are discussed. A guide to utilizing prompting to support participants with communication challenges in interview context is provided. Broader impacts and future directions are proposed including promoting more inclusive research techniques by overcoming communication barriers