In her forward, Dianne Grey, parent and contributor to the toolkits has this to say: “It’s so often said that losing a child is the most excruciating pain imaginable, and you may be wondering how you will continue on while coping with the searing pain pulsing through every part of your heart. You have lost your child, after all, an extension of yourself.”
To support other parents and families going through the extremely painful and difficult time right from diagnosis and into bereavement, Danya International, Inc has created a suite of resources offering guidance and support for communicating about terminal illness and death called Communication Counts. Communication Counts offers three distinct and separate toolkits, tailored to the stage of the illness the child is experiencing and is a comprehensive resource to support families with a school-age child living with life-threatening illness. The toolkits highlight the beneficial effect of open communication with all stakeholders when dealing with a child with a life limiting condition or illness. The toolkits are aimed at caregivers and direct care providers. Each toolkit contains a Parent Guidebook, a parent-to-parent DVD and a Family Activity Book.
The first toolkit, Communication Counts: Supporting Your Child and Family During Diagnosis and Treatment helps parents to use communication to seek information on their child’s illness and treatment, to empower the parent to advocate for their child, and to support the family in using positive coping skills to reduce stress and burden.
The second toolkit, Communication Counts: Supporting Your Child and Family While Transitioning to Supportive Care provides parents with ways to use communication to promote quality of life as their child transitions from a curative-based treatment focus to one of support and comfort for the child nearing the end of his or her life.
A quote from the second toolkit on transitioning from curative to palliative care: “You may find yourself at a crossroads in the care of your child. Your child’s condition may have changed or the plan of care may no longer be working. You may need to consider significant changes to your child’s care, which all members of your family may not agree with. When it seems as if no more can be done to cure your child, you may choose to focus on supportive care. You may also choose to focus solely on enhancing the quality of your child’s life, however long or short that may be.
With insights and experiences from other parents, these pages highlight many ways to prepare, share, and connect as a family experiencing supportive care. You will find practical tools and guidance for the very real and personal experiences you are having. With a focus on using
communication to cope and connect, this guide has been created, with the help of other parents, to be a resource for you and your family. Everyone’s experience is unique, and we hope you find inspiration and ideas for making this time with your child and family as comfortable and
as meaningful as possible.”
The third toolkit, Communication Counts: Supporting Your Family Through Bereavement offers families ways to use open communication to understand and process grief, to honour the memory of their child and to actively and positively cope with their grief the child’s death.
You can find out more in this article from PR Newswire.
PDF versions of the toolkits and videos are available as a free downloadable resource for families and can be downloaded from the following website: http://www.danya.com/ccounts/cc_individuals.asp The books and DVDs can be purchased by individuals and organisations via the same website.