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Palliative care for children with complex cardiac conditions: survey results

Sidharth Vemuri1,2, Ashleigh E Butler2,3, Katherine Brown4,5

  • 1Victorian Paediatric Palliative Care Program, The Royal Children's Hospital Melbourne, Parkville, Victoria, Australia.

Archives of Disease in Childhood
|July 27, 2021
PubMed

Insights

Pediatric cardiac and palliative care professionals see benefits in early palliative care for children with complex heart conditions. Increased training and role clarity are needed for better integration of advance care planning and family-centered care.

Area of Science:

  • Pediatric Cardiology
  • Palliative Care
  • Complex Congenital Heart Disease

Background:

  • Children with complex cardiac conditions often require specialized palliative care.
  • Integrating palliative care early can improve quality of life and family support.
  • Understanding professional perspectives is crucial for effective service delivery.

Purpose of the Study:

  • To explore the perspectives of pediatric cardiac and palliative care professionals.
  • To understand current referral practices and attitudes towards palliative care.
  • To identify barriers and facilitators for providing palliative care to children with complex cardiac conditions.

Main Methods:

  • National survey of pediatric cardiac and palliative care professionals in the UK.
  • Included closed-ended questions, open-ended questions, and clinical scenarios.
  • Quantitative (descriptive statistics) and qualitative (thematic analysis) methods were used.

Main Results:

  • 177 professionals responded; advance care planning was a key referral reason.
  • Palliative care professionals reported higher confidence in discussions than cardiac professionals.
  • Consensus on patient groups benefiting from palliative care, including those with no surgical options, genetic disorders, or awaiting transplantation.

Conclusions:

  • Cardiac care professionals can deliver components of palliative care alongside disease-directed treatment.
  • Further research and training are essential to enhance confidence and clarify roles.
  • Addressing professional roles and parent preferences is key for family-centered care.
Abstract

Keywords:
cardiologypalliative care

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