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 Oliver

Research output: Contribution to journalMeeting abstractpeer-review


Aim:To compare the attitudes of health and socialcare professionals towards death and dying of peoplewith intellectual and developmental disabilities (IDD)across countries. Method: Focus groups were held withmedical, nursing and s ocial care professionals in theUK (n=25), Portugal (n=15) and Nigeria (n=8).Results: In the UK, palliative care was reported to beinconsistent; few participants received relevant trainingand people with IDD were felt to be marginalised fromdecisions about their end of life care. Staff wereconcerned about assessment and management ofsymptoms. In Portugal there was generally littleunderstanding of palliative care and limited discussionregarding d eath and dying with patients and families;relatives often having unrealistic expectations oftreatment. People with IDD were mainly cared forwithin i nstitutions; homecare was not always successful.In Nigeria people with I DD were viewed as "different"and "difficult to handle" and there were few resourcesto help i n their care. Conclusions: Profounddifferences in attitudes to p alliative care needs of peoplewith IDD exist reflecting societal taboos. Localdevelopments are hindered by deeper cultural attitudesregarding the discussion of diagnosis and care indifferent countries
Original languageEnglish
Pages (from-to)667
Number of pages7
JournalJournal of Intellectual Disability Research
Issue number7-8
Publication statusPublished - 2016
Externally publishedYes

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