Facilitating bereavement support for people with intellectual disabilities in England

Sue Read

in Participatory Research in Palliative Care

Published in print December 2012 | ISBN: 9780199644155
Published online January 2013 | e-ISBN: 9780191749094 | DOI:
Facilitating bereavement support for people with intellectual disabilities in England

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This chapter explores action research involving people with intellectual disabilities (ID). It will describe the author's journey of discovery from conducting research on people with ID to working alongside with people with ID as part of the emancipator element of the participatory action research (PAR) approach. The chapter introduces a number of PAR studies that were developed from practice, embedded in practice and produced a product (a manual, booklet, electronic tool) that would ultimately feed back into practice. Such collaborative efforts, which systematically build clinician feedback into their development and dissemination will make the resources more effective, flexible, more dynamic and more likely to be used. Research provided in this chapter demonstrates well that PAR was an excellent tool to engage with people with ID as well as a range of clinicians, academics, volunteers, and parents, promoting empowerment and acting as the catalyst for the sharing of personal experiences.

Keywords: intellectual disabilities; participatory action research; bereavement; end of life care; marginalized populations; reflective practice

Chapter.  4453 words.  Illustrated.

Subjects: Palliative Medicine

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