Young people who have learning disabilities commonly have many complex and severe life-limiting conditions that result in premature death. Too often neither they nor their family and friends are prepared for end of life situations. End of life care planning is helpful in eliciting and honouring the young person’s wishes, as far as possible. However, it can be challenging due to communication difficulties and limited understanding of the meaning of death and dying.

This article introduces the ADVANCE toolkit featuring a values-based framework that aims to help caregivers who work with young people who have learning disabilities, including nurses, social workers and care assistants, develop their confidence and skills in end of life care planning. The ADVANCE toolkit enables insight in knowing how, when and with whom to discuss the sensitive topic of planning for end of life care. In this article, six activities are included for readers to complete with a view to enabling engagement with the material presented.

Learning Disability Practice. doi: 10.7748/ldp.2018.e1914

Citation

Gallagher A, Peacock M, Arber A (2018) Helping young people who have learning disabilities and their families to plan end of life care: the ADVANCE toolkit. Learning Disability Practice. doi: 10.7748/ldp.2018.e1914

Peer review

This article has been subject to double-blind peer review and has been checked for plagiarism using automated software

Correspondence

a.gallagher@surrey.ac.uk

Conflict of interest

None declared

Acknowledgements

The authors would like to thank Health Education Kent, Surrey and Sussex, which commissioned and funded the project; and the parents, practitioners, participants and advisory group members who provided invaluable guidance that led to the toolkit and workshop format. They would also like to thank the advisory group members: Jim Blair, consultant nurse, Great Ormond Street Hospital for Children NHS Foundation Trust and associate professor for learning disabilities, Kingston and St George’s University; Phil Boulter, consultant nurse for learning disabilities, Surrey and Borders Partnership NHS Foundation Trust; Lizzie Chambers, development director, Together for Short Lives; Craig Gannon, medical director, Princess Alice Hospice, Esher; Faith Gibson, professor of child health and cancer care, University of Surrey; George Matuska, transforming care programme workforce specialist clinical adviser in learning disabilities, Health Education Kent, Surrey and Sussex; Rhona Westrip, programme manager, learning disabilities, Health Education Kent, Surrey and Sussex. They would also like to thank Ian Arber, who edited the film, and Rosie Field, Phil Boulter and Penny Smith, who provided learning disabilities expertise to the video and workshops

Published online: 23 November 2018