In 2011, ICPCN published Touching Rainbows, a book that gave a voice to children with life limiting conditions from around the world by allowing them, and those who cared for them, to tell their stories. These powerful stories gave readers an insight into the reality of having a child with a life limiting illness, the pain of losing a child and the difference children’s palliative care services made to both the children and their carers. The book continues to be an influential advocacy tool that has been used around the world to highlight the need for the integration of children’s palliative care into all health care services.
In 2015, the ICPCN will be celebrating 10 years of being the only international charity fighting globally for the rights of life-limited and life-threatened children. As part of their planned international campaign they would like to gather together as many stories from across the globe as possible which tell the story of children needing and receiving palliative care and how this has impacted positively on their quality of life.
These stories can be provided either as short video clips or as written stories with photographs. Those we choose will be uploaded to a website and various social media platforms in order to gain the greatest traction with the general public. The ICPCN assures all those who participate in this 10 year anniversary project that any photographs and videos sent to them will be used solely for advocacy purposes in order to increase awareness of the need for and the value of palliative care for children.
Story categories
As the network wishes to show the difference that palliative care makes on the quality of life of the child and the family, the stories they are looking for should fall into one of the following two categories:
- True stories about children who are or were able to access palliative care services and how this impacted on quality of life for the child and the family.
- True stories about children who are not or were not able to access palliative care services and how this impacted on quality of life for the child and the family.
Who should tell these stories?
Stories can be told by the child, a parent, sibling or relative, or a person who cares for or who is/was involved in the care of the child as long as they have the permission of the child and/or the child’s parents or legal guardians to do so.
Language and translation
The ICPCN recognises the importance of having stories in as many languages as possible in order to reach as many people across the globe as possible, so are happy for the stories to be told in any language. English translations will be provided where applicable.
Permission to publish
Permission to tell the story should be provided by the child and/or the child’s family. This will be required before any story will be published or posted to the website. Permission forms will be sent to you via email once your story has been received and accepted for publication.
Photographs and videos
Photographs should be supplied with all written stories as these dramatically enhance the impact of the stories being told. Photographs should be attached separately in JPEG format. Video clips need not be polished or expertly edited. Raw footage from a cell phone camera is perfectly acceptable, as long as it provides interesting footage which honestly portrays the positive impact palliative care has on a child’s life. Videos should be kept to between 1-5 minutes in length.
Deadline for stories
This is an ongoing project to gather as many stories as we can in order to increase awareness of the benefit of children’s palliative care leading up to their 10th birthday in 2015, the ICPCN has not set a deadline.
Submitting your stories
Please submit your queries or your videos or written stories and photographs for consideration to Sue Boucher at: info@icpcn.co.za
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