Assessment of need for a children's hospice program

Abstract

Canuck Place, North America's first free-standing pediatric hospice of its kind, opened in 1995 in British Columbia, Canada. The province-wide program encompasses a broad spectrum of services intended to support community-based care and provide periodic, facility-based respite and palliative care to children with life-threatening, progressive illness and to their families. Loss and grief support is another integral component of the program. The concept of pediatric hospice care is founded on the premise that dying children and their families can benefit from care designed to maximize present quality of life; yet, the creation of such programs must be based on demonstrated need. One vital step in the development of the Canuck Place program was assessing the need for such a program within the province. Data from both traditional quantitative and less traditional qualitative sources were used to document and put forth an argument in support of developing a children's hospice program. The final report addressed several components that are summarized in this article for the purposes of assisting others who may wish to undertake similar projects in their own communities.

A pilot study of the impact of a grief camp for children

“…More studies are needed to determine outcomes for children who participate in grief camps. Others have written about the benefits of hospice services and proposed that more research is necessary to support the positive effects of these services in helping children and families cope with grief~Armstrong- Dailey & Zarbock, 2001;Davies, 2001!. Consequently, longitudinal research to assess whether improvements in psychosocial functioning are related to therapeutic experiences, like camps and other grief support groups, is needed to determine factors related to adjustment and coping for children who have lost a family member.…”

“…They may feel sadness and anxiety during the grieving process~Raveis et Sandler et al, 2003!. Community-based programs for bereaved children are becoming more common and popular. Research on the effectiveness of community-based programs, like hospice services, for children coping with the loss of a loved one is needed~Armstrong et al, 2001;Curtis & Newman, 2001;Davies, 2001!. The purpose of this study was to examine children's opinions about a hospicesponsored grief camp.…”

Paediatric respite care: a literature review from New Zealand

“…1 Paediatric palliative care encompasses a wide range of aspects that are unique to children and young people. Control of pain and other symptoms, and of psychological, social and spiritual problems, is paramount.…”

“…The goal of palliative care is the achievement of the best quality of life for patients and their families. 1 Paediatric palliative care encompasses a wide range of aspects that are unique to children and young people. In 1997, the Association for Children with Life-Threatening or Terminal Conditions and their Families (ACT) and the Royal College of Paediatrics and Child Health (RCPCH) 2 published a report clearly stating why palliative care for children is special: the number of children dying is small, compared with the number of adults; many of the individual conditions are extremely rare with diagnoses specific to paediatrics, although the child may survive into adulthood; the time scale of children's illness is generally different from adults, palliative care may only last a few days or months or may extend over many years; many of the illnesses are familial, and there may be more than one affected child in the family; care embraces the whole family.…”

The Impact on Families of Respite Care in a Quicken's Hospice Program

“…Vacations were cancelled, if planned at all, and socialization patterns outside the family changed. Additionally, siblings experienced difficulties, suffering from disruption of regular family life and feeling neglected from reduced attention by their overstressed parents (1,10).…”