Roger J Stancliffe1, Michele Y Wiese2, Sue Read3, Gail Jeltes4, Josephine M Clayton5. 1. The University of Sydney, Centre for Disability Research and Policy, Australia. Electronic address: roger.stancliffe@sydney.edu.au. 2. The University of Sydney, Centre for Disability Research and Policy, Australia. Electronic address: michele.wiese@sydney.edu.au. 3. School of Nursing and Midwifery, Keele University, UK. Electronic address: s.c.read@keele.ac.uk. 4. Sunshine, Sydney, Australia. Electronic address: gailjeltes@sunshinelgd.org.au. 5. HammondCare Palliative and Supportive Care Service, Greenwich Hospital, Sydney, Australia; The University of Sydney, Northern Clinical School, Sydney, Australia. Electronic address: josephine.clayton@sydney.edu.au.
Abstract
BACKGROUND: Adults with intellectual disability (ID) are thought to understand less about death than the general population but there is no available research demonstrating this. Further, the detail of any possible differences in understanding is unknown. METHODS: We compared the responses of 39 adults with mild or moderate ID and 40 disability staff (representing the general population) on (a) understanding the concept of death, (b) knowledge of and self-determination about end-of-life planning, and (c) fear-of-death. RESULTS: We found that adults with ID had a significantly poorer understanding of the concept of death, knew much less about and were less self-determined about end-of-life planning, but reported greater fear-of-death. CONCLUSIONS: We demonstrated, for the first time, the feasibility of assessing end-of-life planning and fear-of-death among adults with ID. The poorer understanding and lower levels of self-determination we found suggest that future research should develop and evaluate interventions to increase understanding and self-determination.
BACKGROUND: Adults with intellectual disability (ID) are thought to understand less about death than the general population but there is no available research demonstrating this. Further, the detail of any possible differences in understanding is unknown. METHODS: We compared the responses of 39 adults with mild or moderate ID and 40 disability staff (representing the general population) on (a) understanding the concept of death, (b) knowledge of and self-determination about end-of-life planning, and (c) fear-of-death. RESULTS: We found that adults with ID had a significantly poorer understanding of the concept of death, knew much less about and were less self-determined about end-of-life planning, but reported greater fear-of-death. CONCLUSIONS: We demonstrated, for the first time, the feasibility of assessing end-of-life planning and fear-of-death among adults with ID. The poorer understanding and lower levels of self-determination we found suggest that future research should develop and evaluate interventions to increase understanding and self-determination.