Pediatric Palliative Care Research for Children with Medical Complexity
Pediatric Palliative Care
is for children with life-threatening, progressive conditions. It can optimize the quality of life, promote healing, and provide comfort for patients and their families. The care may focus on managing pain; preventing and treating symptoms and any other interventions that will contribute to improving the overall quality of life of the child and their family during illness and through bereavement.
Pediatric Palliative Care research is focused on the discovery of information and evidence that will help to improve the practice of Pediatric Palliative Care. The Siden Research Group is nestled within Canuck Place Children’s Hospice and BC Children’s Hospital in Vancouver, Canada. It is led by Dr. Hal Siden, Medical Director of Canuck Place Children’s Hospice. Our research focuses on all aspects of the lives and care of children with medical complexity and palliative care needs.
We practice Patient Oriented Research and partner with families in our organization and in our projects. Much of our research is developed in close collaboration with family partners who play pivotal roles in all stages of the research cycle. Without the contributions of children and families, research in pediatric palliative care would not be possible.
Children and Families in Our Research
Our research focuses on children (0-19) with life-threatening conditions and is inclusive of peri-natal and neonatal palliative care.
Life-threatening conditions are often progressive, rare and complex, and have a significant impact on the child’s family.
Treatment is often focused on the prevention and relief of symptoms and includes addressing emotional, social and spiritual needs.
Cancer remains the most common cause of serious illness in children, though less common conditions also benefit from pediatric palliative care.
Families play a major role in the advocacy, decision making and interventions provided for their child.
Research with children with medical complexity is important because:
Many of the pediatric conditions are rare and as a result, lack dedicated funding for disease-specific research.
Pediatric palliative care differs to adult palliative care, because the conditions that affect children and their trajectory are different. Research is needed to continue to build on our knowledge and evidence-based care.
While cures for these conditions have not yet been realized, there is great potential to enhance comfort and quality of life through care. It is important to describe what this care looks like.
The illness will invariably have an impact on the child, the child’s family, their school community, and health care providers. Research is needed to provide knowledge on how to best support this group.