Completed Studies

Improving communication during the palliative care of children with brain tumours

Investigators & Staff: Eric Bouffet, Tom Chau, Ceilidh Eaton Russell, David Brownstone, Cindy Van Halderen

When a dying child loses the ability to speak, how do families live with this and how can we help?  Through this research we interviewed families to learn about the barriers to communication that children faced, strategies they used to try to overcome those barriers, as well as identifying the most important issues for families to communicate about and the most significant aspects of non verbal communication. 

This research is supported by the B.R.A.I.N. Child Foundation.

Summary

When a dying child loses the ability to speak, how do families live with this and how can we help?  Through this research we interviewed families to learn about the barriers to communication that children faced, strategies they used to try to overcome those barriers, as well as identifying the most important issues for families to communicate about and the most significant aspects of non verbal communication. 

Fourteen families who had a child who lost the ability to speak when he or she was dying while in the care of the brain tumor team at SickKids hospital were interviewed for this project.  The interview was designed by the team’s Social Workers and Physician. Ten face-to-face and four telephone interviews were conducted by the research team’s Child Life Specialist and Project Director. 

Interviews focused on 3 main themes: communicative needs and abilities of dying children; important messages and issues for families to discuss; and suggestions for the design of a computer-based communication device.

What We Learned

Participants described a range of strategies used to communicate with their children including: framing questions in order for children to respond with ‘yes’ or ‘no’; developing signals using facial expressions, hand gestures and sounds; creating picture and message boards; and computer-based augmentative communication devices.  We have learned that families had to use a number of different communication strategies as their child’s abilities continued to change and decline.  Many parents offered suggestions for other families about how to adapt different communication strategies depending on the nature of the child’s functional needs and decline, as well as considering their age, preferences and interests. 

From a psychosocial perspective, families struggled with a great deal of frustration and helplessness, both for the children who struggled to express their needs and emotions and for their family members who struggled to understand and subsequently felt unable to completely address their child’s needs.  While picture or message charts and computer-based devices created access to a greater number of messages than using gestures to indicate ‘yes’ or ‘no’, some families felt that strategies requiring an interface between the parent and child detracted from personal and emotional aspects of communication. 

What’s Next

Outcomes for this project were originally intended to be a list of Best Practices for clinicians working with children with brain tumors, as well as for the design of a computer-based, non-contact communication aid that would be controlled by, and speak for the child.  Over the course of the study it became clear that two additional outcomes are necessary. 

First of all, the development of a handbook for parents describing the range of strategies and tools used by families to maintain meaningful and personal communication with the dying child for as long as possible, with or without the use of a computer-based device.  Secondly, interactive in-services and printed information for health care professionals helping them understand how they can interact with a child who cannot speak, as well as how they can support families in these circumstances. 

We are currently pursuing funding to enable us to compile the findings from this study in order for these additional outcomes to be achieved.