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Deaths among the intellectually disabled: a retrospective study
- Authors:
- RAITASUO Jouni, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 10(4), 1997, pp.280-288.
- Publisher:
- Wiley
Examines the causes of death of a sample of death sample of people with difficulties in Finland and compares the results to causes of death in the general population. Results found there was less than expected mortality from accidents, diseases of the circulatory system and malignant neoplasms and more than expected mortality from respiratory disease.
Developing guidelines for disclosure or non-disclosure of bad news around life-limiting illness and death to people with intellectual disabilities
- Authors:
- TUFFREY-WIJNE Irene, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 26(3), 2013, pp.231-242.
- Publisher:
- Wiley
The aim of this study was to develop guidelines for decisions about (non-) disclosure of bad news around life-limiting illness and death to people with intellectual disabilities, by examining stakeholders' preferences (and reasons) around disclosure and non-disclosure. Focus groups and interviews were held with 109 participants: people with intellectual disabilities, family carers, intellectual disabilities professionals and medical healthcare professionals. People with intellectual disabilities had wide-ranging views about disclosure. Reasons for non-disclosure included: preventing distress; too difficult for the bearer of bad news; the bearer of bad news lacks knowledge; inability to understand; no sense of time; conflicting views among stakeholders. Reasons for disclosure included: a right to know; knowledge helps the person cope; need for involvement. The authors conclude that disclosure of bad news could cause harm in some situations, but this needs careful assessment. They then present guidelines for disclosure that now need to be tested in practice. (Edited publisher abstract)
Mortality of people with intellectual disability in northern Sydney
- Author:
- BAKER Wesley
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 27(4), December 2002, pp.255-264.
- Publisher:
- Taylor and Francis
A population-derived cohort of 693 people with intellectual disability in the Lower North Shore (LNS) area of Sydney, New South Wales, Australia was followed from 1989 to 1999 to determine mortality rates, the demographics of the deceased, and causes of death. The general population of LNS was used for comparison. Age- and sex-adjusted mortality rates were higher than those in the LNS population. The main cause of death was respiratory disease, followed by external causes and cancer. Of those who had died, the greatest proportion were functioning in the severe to profound range of intellectual disability, and half were living in institutional care. Public health resources and services need to be directed to this vulnerable population in order to address the excess mortality.
Mortality of persons with intellectual disability in residential care in Israel 1991-1997
- Author:
- MERRICK Joav
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 27(4), December 2002, pp.265-272.
- Publisher:
- Taylor and Francis
Reports on the number of deaths for the period 1991-1997 in Israeli residential centres. Some 450 deaths were reported, corresponding to a mortality rate of 10.25 deaths per 1000 population per year. The number of deaths compared with those in the general population. Information on the age and sex distribution, level of intellectual disability, ethnic background and cause of death is presented.
The rich picture on people at end of life
- Author:
- MACMILLAN CANCER SUPPORT
- Publisher:
- Macmillan Cancer Support
- Publication year:
- 2012
- Pagination:
- 60p.
- Place of publication:
- London
The ‘Rich Pictures’ are evidence-based summaries of the numbers, needs and experiences of different groupings within the 2 million people living with cancer in the UK. They contain a range of evidence and insight including how many people are within the group and what their typical needs and experiences are. This document provides information on people at the end of life. Over 561,000 people die in the UK every year and cancer is the cause of 28% of these deaths. Most people (63%) would prefer to die at home, but only 21% of them do so. The document summarises what is known about the needs and experiences of people at different stages of the end of life journey (terminal diagnosis, palliative treatment, approaching death, and death and bereavement). It also considers the sort of experiences people with cancer and their families experience at end of life. Three specialist themes are also considered: people with learning disabilities at the end of life; people at the end of life in prison; and children at the end of life.