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Guidance documents

Staff training and support

  • Doing It My Way - A Comprehensive Guide to End of Life Care for People with Learning Disabilities. 2016. St Anne's Community Services.

  • Talking End of Life... with people with an intellectual disability. 2018. The University of Sydney, Keele University in the UK, and Unisson Disability.

  • Cards on Life, Death and Loss. 2020. Jo Giles in collaboration with Claire Lam, Paradigm.

  • Advance Care Planning. 2021. Presentation by Phoebe Mooney, Advanced Care Planning Nurse for people with learning disabilities.

Resources for/with people with learning disabilites

Academic papers

  • McGinley et al. (2021) Advance Care Planning for Individuals With Intellectual and Developmental Disabilities: A State-by-State Content Analysis of Person-Centered Service Plans. Intellectual and Developmental Disabilites. 2021;59;4: 352–364.

  • Noorlandt et al. (2021) Consensus on a conversation aid for shared decision making with people with intellectual disabilities in the palliative phase. J Appl Res Intellect Disabil. 2021;34:1538–1548.

  • Watson et al. (2017) Supporting end of life decision making: Case studies of relational closeness in supported decision making for people with severe or profound intellectual disability. J Appl Res Intellect Disabil. 2017;30:1022-1034.

  • McKenzie et al. (2017) “I’m still here”: Exploring what matters to people with intellectual disability during advance care planning. J Appl Res Intellect Disabil. 2017;30:1089–1098.

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