This retrospective study analysed data for 703 children who died from 2000 to 2006 to examine where children with a broad range of progressive, life-limiting illnesses actually die when families are able to access hospital, paediatric hospice…
Recent studies and consensus statements have expressed the need to involve palliative care services in the care of children with progressive neuromuscular diseases (PMD), yet there have been no reviews of the utilization of palliative care services…
Friedreich's ataxia is an autosomal recessive neurodegenerative disease. We report the case of a 34-year-old man with Friedreich's ataxia and dilated cardiomyopathy who underwent successful cardiac transplantation. To our knowledge, this is the first…
BACKGROUND: Children with progressive metabolic, neurological, or chromosomal conditions and their families anticipate an unknown lifespan, endure unstable and often painful symptoms, and cope with erratic emotional and spiritual crises as the…
This article describes the rationale for planning and conducting a qualitative pilot study about families' transition to a Canadian paediatric hospice. Discussion includes: background information and a literature review pertinent to the study; debate…
This article describes the rationale for planning and conducting a qualitative pilot study about families' transition to a Canadian paediatric hospice. Discussion includes: background information and a literature review pertinent to the study; debate…
The results from a pilot study are reported in this article, part two of a two-part paper. The experiences of parents (six mothers and two fathers) are described as their families transitioned to the Canuck Place Children's Hospice (CPHC) in Canada.…
Purpose Research has only begun to examine the complexity of transition to adulthood under illness conditions. A Delphi method may be utilized to identify pertinent research priorities for academics and clinicians in adolescent healthcare transitions…
In addition to its importance in clinical assessment, N-terminal pro-brain natriuretic peptide (NT pro-BNP) is a valuable marker for evaluation of treatment and prognosis of heart failure. However, there are situations where NT pro-BNP is not related…
Paediatric palliative care is a field distinct from adult palliative care, although there are many overlaps in language, approach and philosophy. Several features, however, distinguish paediatric palliative care. The illnesses that affect children…
BACKGROUND: Paediatric palliative care focuses on the enhancement of the quality of life for a child and family through a combination of active and compassionate therapies intended to comfort and support the child and family who are living with a…
When parents first meet their child, they take on the entwined joys and burdens of caring for another person. Providing care for their child becomes the basic expectation, during health and illness, through the developmental milestones, into…
Pediatric palliative care is increasingly recognized to be a specialized type of care requiring specific skills and knowledge, yet, as found in several countries, there is little available research evidence on which to base care. Objectives: The goal…
BACKGROUND: Hyperlipidemia after orthotopic heart transplantation (OHT) is associated with immunosuppression. Many OHT patients have increased lipid levels above published guidelines despite treatment with high doses of statins. Treatment with…
Sexual dysfunction in male cardiac transplant recipients has received little systematic study. Problems reported in the literature include impotence, ejaculation problems, decreased libido and avoidance of sexual opportunities. PURPOSE: Investigate…
BACKGROUND: A multidisciplinary outpatient clinic at a tertiary care children's hospital supported and staffed by a children's hospice was created to enhance and expand the inpatient palliative care services available to families of children with…
