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The challenges of providing palliative care for people with intellectual disabilities: A literature review

Dunkley, Susie; Sales, Rachel

Authors

Susie Dunkley

Rachel Sales Rachel2.Sales@uwe.ac.uk
AHOD Simulation, Skills and Digital Learning



Abstract

© 2014 MA Healthcare Ltd. People with intellectual disabilities are often marginalised from mainstream health-care services because of the complexities of their disability. They are under-referred to specialist palliative care owing to a limited understanding of its role and little collaborative working. Furthermore, professionals caring for people with intellectual disabilities and palliative care services often lack knowledge about and confidence in their ability to meet the needs of people with an intellectual disability who require palliative care. This literature review explores the challenges of providing palliative care for people with intellectual disability. It highlights that training requirements need to be effectively identified, referrals between professional groups made, and the perspectives of patients understood to overcome the marginalisation of people with intellectual disability. There is a need for ongoing staff development focusing on staff confidence, collaborative working between professionals, and the empowerment of people with intellectual disability to be involved in decisions about their end-of-life care. Further research is needed to examine the most effective way of capturing the perspectives of those with intellectual disability and of enabling people with intellectual disability to access and engage with health surveillance, cancer screening, and palliative care services.

Journal Article Type Review
Publication Date Jan 1, 2014
Journal International Journal of Palliative Nursing
Print ISSN 1357-6321
Publisher Mark Allen Healthcare
Peer Reviewed Peer Reviewed
Volume 20
Issue 6
Pages 279-284
APA6 Citation Dunkley, S., & Sales, R. (2014). The challenges of providing palliative care for people with intellectual disabilities: A literature review. International Journal of Palliative Nursing, 20(6), 279-284. https://doi.org/10.12968/ijpn.2014.20.6.279
DOI https://doi.org/10.12968/ijpn.2014.20.6.279
Keywords intellectual disabilities, palliative care, healthcare
Publisher URL http://dx.doi.org/10.12968/ijpn.2014.20.6.279
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