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    Communication as care at end of life: an emerging issue from an exploratory action research study of renal end-of-life care for ethnic minorities in the UK

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    Authors
    Wilkinson, Emma
    Randhawa, Gurch
    Brown, Edwina
    Gane, Maria Da Silva
    Stoves, John
    Warwick, Graham
    Akhtar, Tahira
    Magee, Regina
    Sharman, Sue
    Farrington, Ken
    Issue Date
    2014-09-01
    Subjects
    end-of-life care
    South Asian
    communication
    patient experience
    L510 Health & Welfare
    
    Metadata
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    Abstract
    South Asian people have a higher risk of developing kidney disease, are disproportionately represented in the patient population requiring renal replacement therapy and wait longer to receive a kidney transplant, compared with white Europeans. As a result, there is a demand for end-of-life care, which meets the needs of this group of patients. Providing end-of-life care to patients from different cultures is a challenge for renal services as there can be barriers to communication in the form of language, delegated decision-making within families and reluctance to discuss death. To explore end-of-life care for South Asians with kidney disease, 16 interviews with patients and 14 focus groups with care providers were conducted at four research sites in the UK with large South Asian populations. Using an action research design the data were analysed thematically and fed back to inform the research in a cyclical manner. If patients are not fully aware of their condition or of what end-of-life care is, it is less likely that they will be able to be involved in decision-making about their care and this is compounded where there are communication barriers. Variations in care provider awareness and experience of providing end-of-life care to South Asian patients, in turn, contributes to lack of patient awareness of end-of-life care. Communication as care at the end of life should be explored further. Researching the South Asian patient experience of end of life highlights many relevant and generalisable issues.
    Citation
    Wilkinson E., Randhawa G., Brown E., Da Silva Gane M., Stoves J., Warwick G., Akhtar T., Magee R., Sharman S., Farrington K. (2014) 'Communication as care at end of life: an emerging issue from an exploratory action research study of renal end-of-life care for ethnic minorities in the UK', Journal of Renal Care, 40 (S1), pp.23-29.
    Publisher
    Wiley-Blackwell
    Journal
    Journal of Renal Care
    URI
    http://hdl.handle.net/10547/622901
    DOI
    10.1111/jorc.12084
    PubMed ID
    25185489
    Additional Links
    https://onlinelibrary.wiley.com/doi/abs/10.1111/jorc.12084
    Type
    Article
    Language
    en
    ISSN
    1755-6678
    ae974a485f413a2113503eed53cd6c53
    10.1111/jorc.12084
    Scopus Count
    Collections
    Health

    entitlement

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