scholarly journals ‘To move or not to move’: a national survey among professionals on beliefs and considerations about the place of end-of-life care for people with intellectual disabilities

2014 ◽  
Vol 59 (3) ◽  
pp. 226-237 ◽  
Author(s):  
N. Bekkema ◽  
A. J. E. de Veer ◽  
A. M. A Wagemans ◽  
C. M. P. M. Hertogh ◽  
A. L. Francke
Keyword(s):  
Intellectual Disabilities ◽  
End Of Life ◽  
National Survey ◽  
End Of Life Care ◽  
Life Care ◽  
People With Intellectual Disabilities

scholarly journals Training needs of nurses and social workers in the end-of-life care for people with intellectual disabilities: A national survey

2014 ◽  
Vol 34 (4) ◽  
pp. 494-500 ◽  
Author(s):  
Nienke Bekkema ◽  
Anke J.E. de Veer ◽  
Gwenda Albers ◽  
Cees M.P.M. Hertogh ◽  
Bregje D. Onwuteaka-Philipsen ◽  
...  
Keyword(s):  
Intellectual Disabilities ◽  
End Of Life ◽  
Social Workers ◽  
National Survey ◽  
End Of Life Care ◽  
Training Needs ◽  
Life Care ◽  
People With Intellectual Disabilities

Creating person-centred support for people with intellectual disabilities at the end of life: An Australian qualitative study of unmet needs and strategies

2019 ◽  
Vol 24 (4) ◽  
pp. 543-558 ◽  
Author(s):  
Beverley McNamara ◽  
Anne Same ◽  
Lorna Rosenwax
Keyword(s):  
Health Service ◽  
Intellectual Disabilities ◽  
End Of Life ◽  
End Of Life Care ◽  
Service Use ◽  
Unmet Needs ◽  
Qualitative Interviews ◽  
Life Care ◽  
Personal Factors ◽  
People With Intellectual Disabilities

Background: People with intellectual disabilities at the end of life are at risk of receiving inadequate and inequitable end-of-life care. This study explores their unmet needs, opportunities for person-centred care and experiences of health service use. Methods: Qualitative interviews with 26 experienced health professionals and carers were used to explore their patients’ and residents’ unmet needs and end-of-life care options and to outline strategies to support them. Results: A range of challenges and unmet needs experienced by people with intellectual disabilities are presented in themes: (1) accommodation setting at the end of life: dying ‘at home’; (2) personal factors and networks: a circle of support; (3) end-of-life medical care and decision-making. Strategies to facilitate good end-of-life care and a model of care are presented. Conclusions: Well-prepared and collaborative disability and health service workforces are needed, together with flexible and adequate end-of-life funding to ensure compassionate and person-centred care.

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