Improving palliative care for children with neurological conditions and their families through interventions to support high-quality communication and family-centered care
Our research aims to improve care for seriously ill children with complex chronic conditions and their families. Specifically, we focus on understanding the barriers and solutions to improving communication between clinicians caring for children with severe neurological impairment, and their families.
Although children with severe neurological impairment constitute less than 1% of the pediatric population, they account for 250,000 pediatric hospitalizations annually and more than 25% of admissions to the intensive care unit – where many of these children are cared for at end-of-life. Through a series of investigations, we have found that clinicians often lack the necessary skills to communicate effectively with parents of children with severe neurological impairment. This, in turn, exacerbates parental stress and detracts from the important advocacy and decision-making these families need during their child’s critical illness. From this research, our team has worked with our collaborators to develop clinical interventions and quality improvement initiatives tailored to meet the unique needs of children with severe neurological impairment and their families.