Authors
- Leanne Monterosso1,
- Linda J Kristjanson1,
- K White1,
- Marianne Phillips1,
- Patsy Yates2,
- S Sawyer3,
- Jenny Hynson4,
- Helen Irving5,
- M Stevens6,
- B Goodenough6,
- A Allessandri7,
- E O'Riordan8,
- D Drew6
- Queensland University of Technology (QUT)1,
- Edith Cowan University2,
- Curtin University of Technology3,
- University of Sydney4,
- Princess Margaret Hospital5,
- Royal Children's Hospital Victoria6,
- The Children's Hospital at Westmead7,
- Sydney Children's Hospital8
2006
Excerpt
Background: There is an increasing awareness by health professionals of the need for comprehensive care for dying children and their families. However, the development of palliative medicine for adults has not been paralleled in paediatrics due to a lack of evidence-based literature to guide the provision of paediatric palliative care and modelling a service on adult service provision is considered inappropriate due to the specific needs of families of children dying from terminal illness. The majority of families of children with life limiting conditions such as cancer choose to care for their children at home, often a very complex task.
Aim: In order to facilitate the appropriate development of paediatric palliative provision in all states of Australia, an understanding of the palliative and supportive care needs of children and their families in the state was required to guide the development of empirically based models of care which meets the specific needs.
Method: Multisite two-phase quantitative and qualitative study conducted in WA, NSW, VIC and QLD with 217 families.
Findings: Empirical findings from this study will be presented that provide specific guidelines for the broad delivery of both palliative and supportive care for this population of children suffering from incurable cancer. Appropriate infrastructure support is required to facilitate the provision of quality and effective palliative and supportive care through partnerships among sick children, their families and health professionals.
Models of care must incorporate the following core elements.
1. Education of health professionals and parents regarding the concepts and introduction of palliative and supportive care.
2. Care that is focused on provision of home care, with home visits and out-of-hours access to advice from health professionals.
3. Care that is individualised and responsive to parent's needs.
4. Care that is coordinated by a full multidisciplinary team.
5. Ready access to in-home respite support.
Aim: In order to facilitate the appropriate development of paediatric palliative provision in all states of Australia, an understanding of the palliative and supportive care needs of children and their families in the state was required to guide the development of empirically based models of care which meets the specific needs.
Method: Multisite two-phase quantitative and qualitative study conducted in WA, NSW, VIC and QLD with 217 families.
Findings: Empirical findings from this study will be presented that provide specific guidelines for the broad delivery of both palliative and supportive care for this population of children suffering from incurable cancer. Appropriate infrastructure support is required to facilitate the provision of quality and effective palliative and supportive care through partnerships among sick children, their families and health professionals.
Models of care must incorporate the following core elements.
1. Education of health professionals and parents regarding the concepts and introduction of palliative and supportive care.
2. Care that is focused on provision of home care, with home visits and out-of-hours access to advice from health professionals.
3. Care that is individualised and responsive to parent's needs.
4. Care that is coordinated by a full multidisciplinary team.
5. Ready access to in-home respite support.