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Learning modules

Activity 7: Collaborative approaches to care

Service delivery models for children with life-limiting conditions

Paediatric palliative care is a highly specialised area of health care. 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. [12] 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 conditions. 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 (eHealth) Records
    • video-conferencing. [3]

Coordination of care

Effective coordination of the multiple services and health care providers involved in the child’s care is critical. [4] Key elements of a coordinated service delivery model for children with life-limiting conditions are included in the following table. [5]

Table 2. Coordinated Service Delivery of Care

Integrate service across the continuum of care

  • deliver a comprehensive service with a family-centred care approach
  • allow families to make informed choices about care of their children
  • coordinate and integrate paediatric palliative care services
  • focus on delivering care that best meets needs of children and families
  • integrate all aspects of care under same goals
  • offer interdisciplinary holistic services

Provide appropriate home-based support

  • provide infrastructure to give families the option of caring for children at home
  • provide access to palliative care services and resources
  • ensure adequate respite facilities when required
  • recommend appropriate community support organisation

Provide a coordinated, flexible and responsive program

  • allow for flexibility of care needs for children and their families, between home, hospital and palliative care service
  • promote coordination and continuity of care through a collaborative approach from health professionals and community based palliative care services

Improve access to services for rural communities

  • identify strategies to overcome isolation that causes problems with accessibility, costs, travel, disruption to home life and more
  • recruit and train clinical and non-clinical service providers in rural and remote regions
  • facilitate regular telecommunication links with palliative care services for families living rural and remotely
  • develop specific strategies to provide support to communities through online and phone services

Improve the interfaces with other related sectors

  • strengthen links between paediatric palliative care services and disability and education sectors
  • integrate paediatric and adult palliative care service
  • Paediatric palliative care service may have a 24 hour phone service call point

Provide additional respite care

  • offer respite service as an integral component of paediatric palliative care and used to supplement home based care
  • allow flexibility and choice in types of respite including, short break respite, external respite for children and adolescents and emergency respite
  • provide both in-home respite and out-of-home respite, particularly for families caring for children with high degrees of disability and dependence

Develop and implement educational programs

  • assist and provide appropriate education for children and families to understand what palliative care is and how it can assist them
  • provide palliative care training and education for generalist workforces, particularly for those in rural and remote areas
  • ensure formal training, feedback and a means of challenging current practices of paediatric health professionals in their thinking about paediatric palliative care

Increase professional development

  • provide paediatric specific, clinical support and professional development opportunities for health professionals working in palliative care

Increase evidence-based research to support clinical best evidence

  • support more research in paediatric palliative care

Establish a family advocacy program

  • establish effective advocacy programs to ensure the needs of children and their families are
  • identified and addressed within the paediatric palliative care service delivery framework

Thinking points


REFERENCES

1. 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.

2. 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.

3. 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.

4. Stille, C. and Antonelli, R. (2004). Coordination care children special health care needs. Current Opinion in Pediatrics, 16, 700-705.

5. 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.