HOME BASED PALLIATIVE CARE FOR CHILDREN

Guest Blog by Dr John Collins
Throughout the world, the preferred location of care for children receiving palliative care is home for the majority of the time. At times hospital and hospice care are needed, but most families desire to be at home with their children, or close to home, for as long as possible. Home is where families feel most empowered to be themselves in their ordinary routines, with a minimum of rules and regulations. Home better supports the needs of siblings in their ordinary routines to attend school, for example. Home also better supports the needs of an extended family to visit and offer support.
HOME BASED PALLIATIVE CARE FOR CHILDREN
The story of Charlie compellingly reveals not only the beauty of Charlie, but also that of his parents Liz and David, and sister Alysia as his carers at home. The love and joy of this family shine in the way they care for Charlie and also each other in so many practical ways in their home environment.
Home care, however, may present great challenges for some families. These may include catering for the extensive care needs of the child with little external help or support. Additional support is frequently needed to support children in their own homes and to cater for the needs of all family members.
The privilege afforded to us all working in paediatric palliative care is not only the opportunity to reach out to each other, often in small ways, to some of the most vulnerable in our community and their families, but also the opportunity to be strong advocates for improved support of children receiving palliative care at home.
Editor’s Note: Please consider supporting the the Children’s Palliative Care program at the Children’s Hospital at Westmead https://support.bandagedbear.org.au/palliativecare
OTHER NEWS
Little Stars Launched in South Africa
WORLD Hospice and Palliative Care Day was on 10 October, and to celebrate and mark the occasion, the International Children’s Palliative Care Network (ICPCN) and local organisation Umduduzi – Hospice Care for Children, hosted the premiere of...
Children’s Palliative Care- Guest Blog by Sue Boucher
Those of us who work in children's palliative care all have one experience in common… seeing the sometimes surprised, sometimes sympathetic but more often the unmistakable look of shock on the faces of those who innocently ask, ‘So what work...
LITTLE STARS TO BROADCAST ON TRT TURKEY
Little Stars: Accomplishing the Extraordinary in the Face of Serious Illness will be nationally broadcast in Turkey this year on TRT. The Turkish Radio and Television Corporation, also known as TRT, is the national public broadcaster of...
Little Stars: Japan Prize Finalist
INTERNATIONAL VISION To live in a world where children’s palliative care is acknowledged and respected as a unique service, and every child and young person with life-limiting or life-threatening conditions and their families can receive the...
Little Stars Officially Selected for Breath Of Fresh Air Festival
The Tasmanian Breath of Fresh Air Festival has officially selected Little Stars: Accomplishing the Extraordinary in the Face of Serious Illness in its 2015 Festival line-up. Little Stars tells the surprisingly life-affirming stories of young...
Sabine Kraft guest blog: Bundesverband Kinderhospiz
Guest blog from Sabine Kraft, Bundesverband Kindehospiz, Germany. Es war ein eindrückliches, unvergessliches Erlebnis, Lucy und ihre Familie an dem Filmtag zu begleiten. Lucy ist ein Mädchen, eine junge Frau, die eine starke Persönlichkeit...
Nazmi continues to chase his dream
"I continue to chase my dream of improving my chess game. I was recently chosen to attend the Level 4 Junior Master chess camp. This is the beginning of my dream to take my chess game up a level. I have also passed the first qualifying...
OFFICIAL SELECTION: Massachusetts Independent Film Festival
Little Stars has won Official Selection into Massachusetts Independent Film Festival. The Massachusetts Independent Film Festival is a worldwide event for truly independent filmmakers. The festival has screened films from all over America,...