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Assessing Knowledge and Attitudes about End of Life: Evaluation of Three Instruments Designed for Adults with Intellectual Disability

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Title: Assessing Knowledge and Attitudes about End of Life: Evaluation of Three Instruments Designed for Adults with Intellectual Disability
Language: English
Authors: Stancliffe, R. J. (ORCID 0000-0003-4265-7433), Wiese, M. Y., Read, S., Jeltes, G., Clayton, J. M.
Source: Journal of Applied Research in Intellectual Disabilities. Nov 2017 30(6):1076-1088.
Availability: Wiley-Blackwell. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8598; Fax: 781-388-8232; e-mail: cs-journals@wiley.com; Web site: http://www.wiley.com/WileyCDA
Peer Reviewed: Y
Page Count: 13
Publication Date: 2017
Document Type: Journal Articles
Reports - Research
Descriptors: Test Construction, Psychometrics, Decision Making, Adults, Intellectual Disability, Planning, Death, Caregivers, Test Validity, Test Reliability, Correlation, Aging (Individuals), Attitude Measures, Knowledge Level
DOI: 10.1111/jar.12358
ISSN: 1360-2322
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.
Abstractor: As Provided
Entry Date: 2017
Accession Number: EJ1156948
Database: ERIC
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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.
ISSN:1360-2322
DOI:10.1111/jar.12358