sábado, 12 de julho de 2014

The latest news from ICPCN - International Children's Palliative Care Network - July 2014

All contributions welcomed! 

ICPCN is on the lookout for a universal symbol for children's palliative care and for stories to use for advocacy purposes. 

Over the past month the ICPCN has sent out two requests to our members. The first is a request for ideas for a universal symbol for children's palliative care and the second for stories about how palliative care has made a difference in the life of a child or family. Please take the time to read about these two projects by clicking on the links provided below and get back to us soon with your ideas and your stories. 
It's time to get creative!
The ICPCN is looking for a universal symbol for children's palliative care. Our aim is to find one symbol that can become synonymous with children's palliative care wherever and whenever it is used. If you have a good idea or a creative bent, you have until the end of July 2014 to submit your idea to us. Find out more
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Website
Website
Do you have a story for us?
We are looking for true stories in writing or video clips that describe what it is like to have a life limiting illness or to parent a child with a life limiting illness and the difference that palliative care can make in that situation. Wherever you are in the world, we would like to hear your story.Find out more.

What's new on ehospice?

  • Building design for children's hospices - what works? Click here
  • Hungary celebrates Children's Hospice Week  Click here
  • Getting end of life care right for the child and the family Click here

Do you have a palliative care story to tell?

These pictures illustrate stories in Touching Rainbows. Isabelle's story tells of how Brian House helped her to cope with her sister, Grace's, illness and death. Dr Jan du Plessis tells the story of when his patient, Rethabile, wanted to see a real snake before she died. What is your story?    
                                   
http://www.icpcn.org/ International Children's Palliative Care Network

Calling all children, parents and carers. Do you have a palliative care story to tell?

If so, we want to hear from you.


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 our planned international campaign we 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 sent to us 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 us will be used solely for advocacy purposes in order to raise awareness of the need for and the value of palliative care for children.

Story categories
As we wish to show the difference that palliative care makes on the quality of life of the child and the family, the stories we are looking for should fall into one of the following two categories:
  1. 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.
  2. 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
We recognise the importance of having stories in as many languages as possible in order to reach as many people across the globe as we can, so are happy for the stories to be told in any language. We will provide English translations 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 site. 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. 

Submitting your stories
Please submit your queries or your videos or written stories and photographs for consideration to Sue Boucher atinfo@icpcn.co.za 
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