Attitudes of health and social care professionals to the palliative care needs of people with intellectual disability in the UK, Portugal and Nigeria

Rachel Forrester-Jones, David J. Oliver

Research output: Contribution to journalMeeting abstract

Abstract

Aim:To compare the attitudes of health and social care professionals towards death and dying of people with intellectual and developmental disabilities (IDD)across countries. Method: Focus groups were held with medical, nursing and social care professionals in the UK (n=25), Portugal (n=15) and Nigeria (n=8).Results:In the UK, palliative care was reported to being consistent; few participants received relevant training and people with IDD were felt to be marginalised from decisions about their end of life care. Staff were concerned about assessment and management of symptoms. In Portugal there was generally little understanding of palliative care and limited discussion regarding death and dying with patients and families;relatives often having unrealistic expectations of treatment. People with IDD were mainly cared for within institutions; home care was not always successful.In Nigeria people with IDD were viewed as "different"and "difficult to handle" and there were few resources to help in their care. Conclusions: Profound differences in attitudes to palliative care needs of people with IDD exist reflecting societal taboos. Local developments are hindered by deeper cultural attitudes regarding the discussion of diagnosis and care indifferent countries.
LanguageEnglish
Pages667-667
Number of pages1
JournalJournal of Intellectual Disability Research
Volume60
Issue number7-8
DOIs
StatusPublished - 31 Jul 2016

Cite this

@article{ccc25358d05f4e14b058b97b8e5b7984,
title = "Attitudes of health and social care professionals to the palliative care needs of people with intellectual disability in the UK, Portugal and Nigeria",
abstract = "Aim:To compare the attitudes of health and social care professionals towards death and dying of people with intellectual and developmental disabilities (IDD)across countries. Method: Focus groups were held with medical, nursing and social care professionals in the UK (n=25), Portugal (n=15) and Nigeria (n=8).Results:In the UK, palliative care was reported to being consistent; few participants received relevant training and people with IDD were felt to be marginalised from decisions about their end of life care. Staff were concerned about assessment and management of symptoms. In Portugal there was generally little understanding of palliative care and limited discussion regarding death and dying with patients and families;relatives often having unrealistic expectations of treatment. People with IDD were mainly cared for within institutions; home care was not always successful.In Nigeria people with IDD were viewed as {"}different{"}and {"}difficult to handle{"} and there were few resources to help in their care. Conclusions: Profound differences in attitudes to palliative care needs of people with IDD exist reflecting societal taboos. Local developments are hindered by deeper cultural attitudes regarding the discussion of diagnosis and care indifferent countries.",
author = "Rachel Forrester-Jones and Oliver, {David J.}",
year = "2016",
month = "7",
day = "31",
doi = "10.1111/jir.12305",
language = "English",
volume = "60",
pages = "667--667",
journal = "Journal of Intellectual Disability Research",
issn = "0964-2633",
publisher = "Wiley-Blackwell Publishing Ltd",
number = "7-8",

}

TY - JOUR

T1 - Attitudes of health and social care professionals to the palliative care needs of people with intellectual disability in the UK, Portugal and Nigeria

AU - Forrester-Jones, Rachel

AU - Oliver, David J.

PY - 2016/7/31

Y1 - 2016/7/31

N2 - Aim:To compare the attitudes of health and social care professionals towards death and dying of people with intellectual and developmental disabilities (IDD)across countries. Method: Focus groups were held with medical, nursing and social care professionals in the UK (n=25), Portugal (n=15) and Nigeria (n=8).Results:In the UK, palliative care was reported to being consistent; few participants received relevant training and people with IDD were felt to be marginalised from decisions about their end of life care. Staff were concerned about assessment and management of symptoms. In Portugal there was generally little understanding of palliative care and limited discussion regarding death and dying with patients and families;relatives often having unrealistic expectations of treatment. People with IDD were mainly cared for within institutions; home care was not always successful.In Nigeria people with IDD were viewed as "different"and "difficult to handle" and there were few resources to help in their care. Conclusions: Profound differences in attitudes to palliative care needs of people with IDD exist reflecting societal taboos. Local developments are hindered by deeper cultural attitudes regarding the discussion of diagnosis and care indifferent countries.

AB - Aim:To compare the attitudes of health and social care professionals towards death and dying of people with intellectual and developmental disabilities (IDD)across countries. Method: Focus groups were held with medical, nursing and social care professionals in the UK (n=25), Portugal (n=15) and Nigeria (n=8).Results:In the UK, palliative care was reported to being consistent; few participants received relevant training and people with IDD were felt to be marginalised from decisions about their end of life care. Staff were concerned about assessment and management of symptoms. In Portugal there was generally little understanding of palliative care and limited discussion regarding death and dying with patients and families;relatives often having unrealistic expectations of treatment. People with IDD were mainly cared for within institutions; home care was not always successful.In Nigeria people with IDD were viewed as "different"and "difficult to handle" and there were few resources to help in their care. Conclusions: Profound differences in attitudes to palliative care needs of people with IDD exist reflecting societal taboos. Local developments are hindered by deeper cultural attitudes regarding the discussion of diagnosis and care indifferent countries.

U2 - 10.1111/jir.12305

DO - 10.1111/jir.12305

M3 - Meeting abstract

VL - 60

SP - 667

EP - 667

JO - Journal of Intellectual Disability Research

T2 - Journal of Intellectual Disability Research

JF - Journal of Intellectual Disability Research

SN - 0964-2633

IS - 7-8

ER -