Sterling Welch, Annette and Moreno-Leguizamon, Carlos ORCID: 0000-0002-4294-3387 (2016) Literature review of best health and social care practices for individuals with intellectual disabilities encountering the end of life. Nursing and Palliative Care, 1 (5). pp. 118-123. ISSN 2397-9623 (Online) (doi:https://doi.org/10.15761/NPC.1000129)

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Abstract

This Literature Review (LR) aimed to identity what were care best practices for individuals with intellectual disabilities (ID) encountering the end of life. Five EBSCOhost academic databases were used to choose thirty primary research articles, from which four emergent themes were identi ed: (1) end-of-life care approaches, policies and guidelines; (2) challenges experienced by members of the health and social care team; (3) the importance, challenges and bene ts of communication; and (4) examples of good practice including rounded end-of-life care that emphasises working collaboratively and inclusively with family and friends. Further, overall ndings revealed that there was an absence of policies, procedures and guidelines governing these critical end-of-life care practices, including decision making processes. is means that committed members of the health and social care team working to engage with and support individuals with intellectual disabilities at the end of life are habitually underprepared as they lack appropriate communication skills, experience of dealing with death, relevant training and formal support. On top of this, the LR indicated that there was inadequate collaborative, interagency and multi-professional working. is requires also the integration of the views of the individual with disabilities into models of care, using plain language when communicating with them, especially when breaking bad news that extents to their families and friends. Similarly, the provision of integrated services that respects and fosters autonomy of the dying person with intellectual disabilities. Finally, the LR noted an absence of theory and universal good practice guidance/frameworks on dying, death and intellectual disabilities, and calls for future research framed within the human rights approach.

Item Type:	Article
Additional Information:	Copyright: ©2016 Welch AS. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Uncontrolled Keywords:	Intellectual disabilities; End of life care; Health and social care practice; England
Subjects:	H Social Sciences > HV Social pathology. Social and public welfare L Education > LC Special aspects of education
Faculty / School / Research Centre / Research Group:	Faculty of Education, Health & Human Sciences Faculty of Education, Health & Human Sciences > School of Human Sciences (HUM) Faculty of Education, Health & Human Sciences > Health & Society Research Group
Last Modified:	30 Apr 2020 15:38
URI:	http://gala.gre.ac.uk/id/eprint/16087

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