Stancliffe, RJ, Wiese, MY, Read, SC, Jeltes, G and Clayton, JM (2017) Assessing knowledge and attitudes about end of life: Evaluation of three instruments designed for adults with intellectual disability. Journal of Applied Research in Intellectual Disabilities, 30 (6). pp. 1076-1088. ISSN 1468-3148

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Abstract

Background
This paper examines the development and psychometric characteristics of three instruments about end of life, designed for use with adults with intellectual disability (ID). Respectively, the instruments assess understanding of the concept of death, end‐of‐life planning, and fear of death.

Methods
Part 1: instruments were developed or adapted, and pilot tested with 11 adults with ID and 2 disability staff. Part 2: 39 adults with ID and 40 disability staff were assessed on all three instruments.

Results
We evaluated comprehensibility, internal consistency, inter‐rater reliability, subscale: total score correlations, missing data, and withdrawal. Psychometric findings were mostly good. Overall, 23% of participants with ID withdrew at some point. This outcome may have been as much due to assessment fatigue as to sensitive content. There were no adverse events.

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

Item Type: Article
Additional Information: This is the accepted author manuscript (AAM). The final published version (version of record) is available online via Wiley at https://doi.org/10.1111/jar.12358 Please refer to any applicable terms of use of the publisher.
Uncontrolled Keywords: intellectual disability; end of life; assessment; death; staff; planning; fear of death; questionnaire
Subjects: R Medicine > R Medicine (General)
Divisions: Faculty of Medicine and Health Sciences > School of Nursing and Midwifery
Depositing User: Symplectic
Date Deposited: 01 Jun 2017 13:17
Last Modified: 06 Jun 2018 14:26
URI: http://eprints.keele.ac.uk/id/eprint/3525

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