Authors
- Claudia Virdun1,
- Nicola Brown1,
- Jane Phillips2
- University of Technology Sydney (UTS)1,
- University of Notre Dame2
2014
Excerpt
Introduction: The majority of children born in Western developed countries will live well into adulthood. While a small proportion of childhood deaths will be sudden and unexpected, a proportion will be associated with progressive life limiting conditions, requiring palliative care. Historically, palliative care services have predominately cared for adults with cancer, while paediatric palliative care services have tended to care for children with a wide range of life limiting conditions as well as cancer. Similar to other parts of the developed world one of the major challenges for Australian health services is determining the level of need for paediatric palliative care and the best model of care for a geographically and clinically diverse population.
Goal: To identify the key elements of paediatric palliative care, from the perspectives of children with palliative care needs and their parents, that enable best evidence based end of life care in the care setting of choice.
Methods: A search of health journal databases was undertaken to identify peer-reviewed studies relating to paediatric models of palliative care. Studies were included if they reported on models of care, included empirical data from children and/or their parents (quantitative or qualitative) and were published in peer reviewed journals in English between 2000 until 2013.
Results: The initial search generated a total of 205 articles that after review for inclusion criteria resulted in 7 articles included in this review. No experimental studies were located during the search, with the majority of studies using a combination of surveys and interviews to obtain parent and child perspectives on paediatric palliative care.
Discussion: The family experience was characterised by a sense of uncharted territory, with dimensions including entering unfamiliar territory, shifting priorities, creating meaning and holding the fort. The key elements that parents and children valued: 24 hour specialist support; home care support; play and education, psychosocial support; respite care; flexibility in location of care; bereavement support.
Goal: To identify the key elements of paediatric palliative care, from the perspectives of children with palliative care needs and their parents, that enable best evidence based end of life care in the care setting of choice.
Methods: A search of health journal databases was undertaken to identify peer-reviewed studies relating to paediatric models of palliative care. Studies were included if they reported on models of care, included empirical data from children and/or their parents (quantitative or qualitative) and were published in peer reviewed journals in English between 2000 until 2013.
Results: The initial search generated a total of 205 articles that after review for inclusion criteria resulted in 7 articles included in this review. No experimental studies were located during the search, with the majority of studies using a combination of surveys and interviews to obtain parent and child perspectives on paediatric palliative care.
Discussion: The family experience was characterised by a sense of uncharted territory, with dimensions including entering unfamiliar territory, shifting priorities, creating meaning and holding the fort. The key elements that parents and children valued: 24 hour specialist support; home care support; play and education, psychosocial support; respite care; flexibility in location of care; bereavement support.