Assessing knowledge and attitudes about end of life: Evaluation of three instruments designed for adults with intellectual disability

Abstract

People with ID can reliably complete assessments about end-of-life. Generally, each instrument was found to be comprehensible, reliable and valid.

End of life and people with intellectual disability

“…Nevertheless, the experiences of people with intellectual disability are at the heart of our concerns. Of the twelve papers reporting original data, only three (Irwin et al., ; McKenzie, Mirfin‐Veitch, Conder, & Brandford, ; Stancliffe, Wiese, Read, Jeltes, & Clayton, ) had people with intellectual disability as research participants. In their review of end‐of‐life decision making, Kirkendall, Linton, and Farris () commented on the lack of research involving participants with intellectual disability.…”

“…Stancliffe et al. () reported no adverse events and concluded that participants had been able to make appropriate, self‐determined decisions to discontinue participation. They argued that this approach was more respectful than the paternalistic protection of excluding people from research participation.…”

“…In this special issue, Stancliffe et al. () built on McEvoy et al. 's earlier work by independently evaluating the CODQ, as well as introducing two new intellectual disability‐specific assessments on end‐of‐life planning and fear of death, respectively.…”

“…Nevertheless, the experiences of people with intellectual disability are at the heart of our concerns. Of the twelve papers reporting original data, only three (Irwin et al, 2017;McKenzie, Mirfin-Veitch, Conder, & Brandford, 2017;Stancliffe, Wiese, Read, Jeltes, & Clayton, 2017) had people with intellectual disability as research participants.…”

“…They reported that some participants with intellectual disability chose, at some point, to discontinue their participation in a series of end-of-life assessments. Stancliffe et al (2017) reported no adverse events and concluded that participants had been able to make appropriate, self-determined decisions to discontinue *Under the Editorship of Professor Chris Hatton. EDITORIAL participation.…”