Service delivery models for children with life-limiting illnesses
Paediatric palliative care is a highly specialised area of healthcare. A collaborative approach to care and decision-making is required to effectively respond to the complex needs of children and their families and enable ongoing support across the illness trajectory and outside of specialist settings. [1, 2] The transition to palliative care can be an especially difficult time. Coordination of care between acute and palliative care services is very important.
Shared care models are commonly used in paediatric care. These models highlight the joint role that primary care health professionals and specialist care health professionals play in caring for a child with life-limiting illnesses. Shared care models are especially important for children and families living in rural and remote settings. Some strategies that can support a shared care approach include:
- Basic: communication between professionals through letter and health record forms
- Liaison: care coordinator liaises between specialist health team and primary health professional
- Shared care record card: document carried by patient between primary and secondary health professionals
- Technology-assisted shared care: personally controlled electronic health (MyHealth) records, and videoconferencing. [3]
Coordination of care
Effective coordination of the multiple services and healthcare providers involved in the child’s care is critical. [4] Key elements of a coordinated service delivery model for children with life-limiting illnesses are included in the following table. [5]
Integrate service across the continuum of care |
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Provide appropriate home-based support |
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Provide a coordinated, flexible and responsive program |
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Improve access to services for rural communities |
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Improve the interfaces with other related sectors |
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Provide additional respite care |
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Develop and implement educational programs |
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Increase professional development |
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Increase evidence-based research to support clinical best evidence |
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Establish a family advocacy program |
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Thinking Points
- List health professionals who can be involved and the role they would play in care of a child with a life-limiting illness and their family.
- Describe strategies for ensuring coordination of care for a child with a life-limiting illness.
References
- Monterosso, L. and De Graves, S. (2012). Paediatric Palliative Care. In M. O’Connor, S. Lee, & S.Aranda, (Eds) Palliative care nursing: A guide to practice, (pp. 355-377), Ascot Vale, VIC: Ausmed Publications.
- Lyndes, K.A., Fitchett, G., Berlinger, N., Cadge, W., Misasi, J., and Flanagan, E. (2012). A Survey of Chaplains’ Roles in Pediatric Palliative Care: Integral Members of the Team. Journal of Health Care Chaplaincy, 18(1-2), 74-93.
- Hickman, M., Drummond, N., and Grimshaw, J. (1994). A taxonomy of shared care for chronic disease. Journal of Public Health Medicine, 16(4), 447-454.
- Stille, C. and Antonelli, R. (2004). Coordination care children special health care needs. Current Opinion in Pediatrics, 16, 700-705.
- Australian Government Department of Health and Ageing. (2003).Paediatric Palliative Care Service Model Review Final Report, Canberra: Rural Health and Palliative Care Branch, Australian Government Department of Health and Ageing.