Staying Connected: A New Guide for Parents
Staying Connected: A Guide for Families When a Sick Child has Trouble Communicating
By: Ceilidh Eaton Russell BA, CLSt Dip, Eric Bouffet, MD, FRCP(C); David Brownstone, MSW, RSW; and Caelyn Kaise, M.H.Sc., SLP (C) Reg. CASLPO
Supporting a child or teenager who has a brain tumour is an incredibly important and difficult job.
Trying to help them to understand and live with their changing abilities can be overwhelming, especially when caregivers naturally struggle with these changes themselves. It can also be a challenge because while physical abilities may change, cognitive abilities often stay intact. If a child or teenager has trouble communicating because of a brain tumour, the task of supporting them becomes even more complex.
In this handbook, our team of researchers from SickKids Brain Tumour Program put together what was learned from talking with fourteen families about their experiences, as well as from our own experiences working with families. The parents we spoke with generously shared the creative strategies and tools that they developed, the most important conversations they had and the lessons they learned. When we began to talk with these parents, our goal was to develop a new communication tool. In the end, they taught us that although tools are helpful, direct communication was most valued and helpful. Families encouraged us to create this resource to share with other families like yours, so that you would have some ideas about where to start and what to try, and so that you would know that you are not alone.
Health care professionals and families may download this handbook here: http://www.tracpg.ca. or the b.r.ai.n.child site at:http://www.sickkids.ca/Brainchild/Resources-and-Links/.
