Children's hospice

Demelza Hospice Care for Children in Kent, England.

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.

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
• Music 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.^[1]

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

Many 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

Helen House in Oxfordshire was the world's first children's hospice.^[2] 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.^[3]

The first children's hospice in Scotland Rachel House, run by Children's Hospice Association Scotland opened in March 1996.^[4]

There are now over 40 operational children's hospice services open across the UK.^[3] 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 States, 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 Services (HHS) to produce a better solution for families and the Medicaid 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 Thompson receives CHI's "Mattie Stepanek" Award for his distinguished service on behalf of children's health care.^[5]

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.^[6]

There are a few independent children's hospice homes working to get started, including:

• George Mark Children's Hospice, opened March 2004 in California^[7]
• Ryan House, opened March 2010 in Arizona^[8]
• Angel Unaware,^[9] opened in July 2015 in Fort Worth, Texas^[10] Website not operational
• Dr. Bob's Place, opened in Fall of 2011 in Baltimore, MD, no longer operational
• Hospice of Michigan has a dedicated Pediatric Program, based out of Grand Rapids.
• Sarah House, in Cincinnati, Ohio^[11]
• Connor's House, in Philadelphia, Pennsylvania (Operational from 2007 to August 2016, defunct)^[12]
• Crescent Cove of Minnesota, set to open November 11, 2017 in St. Louis Park, Minnesota
• Providence TrinityCare Hospice, TrinityKids Care opened in 2001, serving Los Angeles and Orange counties in California.
• Ladybug House, in Seattle, Washington. Trademarked in May 2017.^[13]
• Edmarc Hospice for Children in Portsmouth, VA.

Canadian children's hospices

• Canuck Place Children's Hospice - opened 1995 in Vancouver, BC
• Daval Hospice - planned centre in Niagara Falls, ON
• 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
• La Maison André-Gratton du Phare Enfants et Familles - opened 2007 in Montreal, QC

Australian children's hospices

• Very Special Kids - Australia's first children's hospice located in Malvern, Melbourne, Victoria, was opened in 1996^[14]
• Bear Cottage - opened in 2001 in Manly, Sydney, New South Wales^[15]
• Hummingbird House - opened in October 2016 in Chermside, Brisbane, Queensland^[16]

South African children's hospices

• Iris House Children's Hospice^[17] in Cape Town, South Africa. Founded in 2011, this is a children's hospice encompassing a holistic approach to care for the whole family.
• Sunflower Children's Hospice established in 1998 (originally St Nicholas Children's Hospice) Provides home-based care in the Motheo Disctrict and has a 15 bed in-patient unit in Bloemfontein

Other nations' children's hospices

• Lilla Erstagården opened in 2010, and is located in Stockholm, Sweden. It is the first children's hospice in any of the Nordic countries.^[18]
• LauraLynn House opened in 2011, in Dublin, Ireland. It is the first children's hospice in the Republic of Ireland.^[19]
• Horizon House in Northern Ireland, opened in Belfast October 2001.^[20]
• The first Hungarian Child Hospice in Pécs, Hungary in 2011 Dóri House,^[21] and the second in Törökbálint, Hungary Tábitha House.^[22]
• Sterntalerhof opened in 1999 and is located in Loipersdorf-Kitzladen, Austria. It is still the first and only children’s hospice in Austria.^[23]
• Children's Hospice in Poland. Foundation Podkarpatian Hospice for Children. Founded in 2006^[24] and Pomeranian Hospice for Children in Gdańsk founded in 2008.^[25]

See also

• Children's palliative care

References