Children's hospice
Encyclopedia
A children's hospice is a hospice
specifically designed to help children and young people who are not expected to reach adulthood with the emotional and physical challenges they face, and also to provide respite care for their families.
Children’s hospice services work with families from all faiths, cultures and ethnic backgrounds and respect the importance of religious customs and cultural needs that are essential to the daily lives of each family. Many have a chaplain who is familiar with a variety of faiths and customs. Each service is typically an independent charity which relies on public support to continue their work.
Children’s hospice services are dedicated to improving the quality of life of children and young people who are not expected to live to reach adulthood and their families.
They provide flexible, practical and free support at home and in the hospice to the entire family, often over many years and at any stage of the child’s or young person’s illness. This includes short breaks and daytime activities enabling families to get a rest; help with the control of pain or other distressing symptoms; and support for family members, including brothers and sisters.
When the end of a child’s life approaches, children’s hospice services are there to provide end-of-life care and bereavement support for as long as it’s needed, helping families and friends approach death with dignity and peace.
Helen House in Oxfordshire
was the world's first children's hospice. It opened in November 1982. Helen House sprang from a friendship between Sister Frances Dominica and the parents of a seriously ill little girl called Helen, who lived at home with her family but required 24-hour care.
The first children's hospice in Scotland
Rachel House, run by Children's Hospice Association Scotland
opened in March 1996
There are now over 40 operational children's hospice services open across the UK. Children's hospice services in England receive an average of 5% government funding and rely heavily on public donations.
, where many of the functions of a children's hospice are provided by children's hospitals. In 1983, of the 1,400 hospices in the United States, only four were able to accept children. Key developments since then include:
Through the efforts of CHI, most of the over 3,000 hospices in the U.S. will now consider accepting children. Also, approximately 450 programs have children-specific hospice, palliative, or home care services.
There are a few independent children's hospice homes working to get started, including:
Palliative care
Palliative care is a specialized area of healthcare that focuses on relieving and preventing the suffering of patients...
specifically designed to help children and young people who are not expected to reach adulthood with the emotional and physical challenges they face, and also to provide respite care for their families.
Services
A typical children's hospice service offers:- Specialist children's palliative care, respite care, emergency, and terminal care (this may be at the hospice or within the child's home)
- Bereavement counselling and support, typically offered as individual home support, as well as groups and work with brothers or sisters
- Information, advice and practical assistance
- 24 hour telephone support
- A system of contact or key workers who work with named children and families to ensure support is consistent and continued between visits
- Physiotherapy and many complementary therapies
- MusicMusic therapyMusic therapy is an allied health profession and one of the expressive therapies, consisting of an interpersonal process in which a trained music therapist uses music and all of its facets—physical, emotional, mental, social, aesthetic, and spiritual—to help clients to improve or maintain their...
and play therapy - Activities for siblings.
Children’s hospice services work with families from all faiths, cultures and ethnic backgrounds and respect the importance of religious customs and cultural needs that are essential to the daily lives of each family. Many have a chaplain who is familiar with a variety of faiths and customs. Each service is typically an independent charity which relies on public support to continue their work.
Children’s hospice services are dedicated to improving the quality of life of children and young people who are not expected to live to reach adulthood and their families.
They provide flexible, practical and free support at home and in the hospice to the entire family, often over many years and at any stage of the child’s or young person’s illness. This includes short breaks and daytime activities enabling families to get a rest; help with the control of pain or other distressing symptoms; and support for family members, including brothers and sisters.
When the end of a child’s life approaches, children’s hospice services are there to provide end-of-life care and bereavement support for as long as it’s needed, helping families and friends approach death with dignity and peace.
Organization
All children’s hospice services are charities, relying on public generosity to continue to provide their services to families that need their vital support.United Kingdom children's hospices
National charity, Children’s Hospices UK wants the best possible care for children and young people who are not expected to live to reach adulthood and their families. They support all children’s hospice services by campaigning and lobbying governments to ensure their voice is heard; helping their care staff to continue to be at the cutting edge of children’s hospice care; making everyone aware of their vital work; and raising funds to ensure they are sustainable.Helen House in Oxfordshire
Oxfordshire
Oxfordshire is a county in the South East region of England, bordering on Warwickshire and Northamptonshire , Buckinghamshire , Berkshire , Wiltshire and Gloucestershire ....
was the world's first children's hospice. It opened in November 1982. Helen House sprang from a friendship between Sister Frances Dominica and the parents of a seriously ill little girl called Helen, who lived at home with her family but required 24-hour care.
The first children's hospice in Scotland
Scotland
Scotland is a country that is part of the United Kingdom. Occupying the northern third of the island of Great Britain, it shares a border with England to the south and is bounded by the North Sea to the east, the Atlantic Ocean to the north and west, and the North Channel and Irish Sea to the...
Rachel House, run by Children's Hospice Association Scotland
Children's Hospice Association Scotland
Children’s Hospice Association Scotland is a Scottish charity that provides the only hospice services in Scotland for children and young people with life-shortening conditions...
opened in March 1996
There are now over 40 operational children's hospice services open across the UK. Children's hospice services in England receive an average of 5% government funding and rely heavily on public donations.
United States children's hospices
The children's hospice movement is still in a relatively early stage in the United StatesUnited States
The United States of America is a federal constitutional republic comprising fifty states and a federal district...
, where many of the functions of a children's hospice are provided by children's hospitals. In 1983, of the 1,400 hospices in the United States, only four were able to accept children. Key developments since then include:
- 1996: the Children's Hospice International's (CHI) Founding Director, Ann Armstrong-Dailey began collaboration with the United States Department of Health and Human ServicesUnited States Department of Health and Human ServicesThe United States Department of Health and Human Services is a Cabinet department of the United States government with the goal of protecting the health of all Americans and providing essential human services. Its motto is "Improving the health, safety, and well-being of America"...
(HHS) to produce a better solution for families and the MedicaidMedicaidMedicaid is the United States health program for certain people and families with low incomes and resources. It is a means-tested program that is jointly funded by the state and federal governments, and is managed by the states. People served by Medicaid are U.S. citizens or legal permanent...
program at large. - 1999: Congress approves first year CHI PACC appropriation.
- June 2005: HHS approves CHI's Program for All-Inclusive Care (CHI PACC ) waiver for the state of Florida.
- September 2005: Former HHS Secretary Tommy ThompsonTommy ThompsonThomas George "Tommy" Thompson , a United States Republican politician, was the 42nd Governor of Wisconsin, after which he served as U.S. Secretary of Health and Human Services. Thompson was a candidate for the 2008 U.S. Presidential Election, but dropped out early after a poor performance in polls...
receives CHI's "Mattie Stepanek" Award for his distinguished service on behalf of children's health care.
Through the efforts of CHI, most of the over 3,000 hospices in the U.S. will now consider accepting children. Also, approximately 450 programs have children-specific hospice, palliative, or home care services.
There are a few independent children's hospice homes working to get started, including:
- George Mark Children's Hospice, opened March 2004 in California
- Ryan House, opened March 2010 in Arizona
- Dr. Bob's Place, set to open in 2011 in Maryland
- Sarah House, in development in Ohio
- Connor's House, in development in Philadelphia
- Children's Lighthouse of Minnesota, in development in Minnesota
- Providence TrinityCare Hospice, serving Los Angeles and Orange counties in California
Canadian children's hospices
- Canuck Place Children's Hospice - opened 1995 in Vancouver, BC
- Rotary/Flames House - opened 2009 in Calgary, AB
- Philip Aziz Centre (The Children’s Hospice) - planned centre in Toronto, ON
- Roger's House - opened 2006 in Ottawa, ON
Other nations' children's hospices
- Lilla Erstagården opened in 2010, and is located in StockholmStockholmStockholm is the capital and the largest city of Sweden and constitutes the most populated urban area in Scandinavia. Stockholm is the most populous city in Sweden, with a population of 851,155 in the municipality , 1.37 million in the urban area , and around 2.1 million in the metropolitan area...
, SwedenSwedenSweden , officially the Kingdom of Sweden , is a Nordic country on the Scandinavian Peninsula in Northern Europe. Sweden borders with Norway and Finland and is connected to Denmark by a bridge-tunnel across the Öresund....
. It is the first children's hospice in any of the Nordic countriesNordic countriesThe Nordic countries make up a region in Northern Europe and the North Atlantic which consists of Denmark, Finland, Iceland, Norway and Sweden and their associated territories, the Faroe Islands, Greenland and Åland...
.