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Workshop B – Dying Without a Voice – Communication When a Child Can No Longer Speak

Presentation Description: This workshop explored the results of the presenters’ research project, in which they interviewed families about their experiences communicating with a child who had difficulty speaking or was unable to speak when they were dying, because of a brain tumor.  Interviews elicited parents’ perspectives of: the communicative needs and abilities of dying children; creative strategies used to facilitate meaningful communication; and issues that were most important for families to discuss. Beyond the practical and functional aspects of communication, parents’ responses illuminated the critical role of communication in maintaining relationships and intimate connections during the end of their children’s lives. Through discussion and experiential exercises, this workshop: explored the experience of family members trying to communicate when a dying child tries to express him or herself; considered families’ priorities towards the end of their children’s lives; shared concrete tools to enhance communication without speech and provided an opportunity to practice using those tools.

Workshop Facilitators:

David Brownstone, MSW, RSW
Academic and Clinical Specialist
Department of Social Work, The Hospital for Sick Children, Toronto, ON

Ceilidh Eaton Russell, MSc(c) CCLS CLStDip
Research Project Director
The Hospital for Sick Children, Toronto, ON
Grief Counselor
Max and Beatrice Wolfe Children’s Centre at the Temmy Latner Centre for Palliative Care, Toronto, ON

Caelyn Kaise, MHSC SLP(C), Reg CASLPO
Speech-Language Pathologist
Paediatric Brain Tumour Program, Inpatient Neurosurgery and Outpatient Paediatric Medicine teams
The Hospital for Sick Children, Toronto, ON

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