• J Intellect Disabil · Dec 2020

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

    • Beverley McNamara, Anne Same, and Lorna Rosenwax.
    • 161909Curtin University, Australia.
    • J Intellect Disabil. 2020 Dec 1; 24 (4): 543-558.

    BackgroundPeople 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.MethodsQualitative 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.ResultsA 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.ConclusionsWell-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.

      Pubmed     Full text   Copy Citation     Plaintext  

      Add institutional full text...

    Notes

     
    Knowledge, pearl, summary or comment to share?

    User can't be blank.

    Content can't be blank.

    Content is too short (minimum is 15 characters).

    300 characters remaining
    help        
    You can also include formatting, links, images and footnotes in your notes
    • Simple formatting can be added to notes, such as *italics*, _underline_ or **bold**.
    • Superscript can be denoted by <sup>text</sup> and subscript <sub>text</sub>.
    • Numbered or bulleted lists can be created using either numbered lines 1. 2. 3., hyphens - or asterisks *.
    • Links can be included with: [my link to pubmed](http://pubmed.com)
    • Images can be included with: ![alt text](https://bestmedicaljournal.com/study_graph.jpg "Image Title Text")
    • For footnotes use [^1](This is a footnote.) inline.
    • Or use an inline reference [^1] to refer to a longer footnote elseweher in the document [^1]: This is a long footnote..

    hide…