Priority 1

What best practices and/or care models exist for inpatient care for children and youth with medical complexity on the general paediatric inpatient unit (GPIU)? 

Concrete Wall

Children with medical complexity are characterized as those with functional limitations, substantial family-identified needs, and dependance on medical technologies for activities of daily living. There is a wide variation in how children with medical complexity are managed in hospitals, including how parents/caregivers are involved in their care. 

Gaps in Evidence

Children with medical complexity have unique needs, and therefore require diverse and tailored practices of care during their time in the hospital. Currently, there is limited evidence on existing best practices and care models for children with medical complexity in hospital (e.g. whether there should be a primary inpatient care team or various consultants), and how to best support parents of these children and integrate them into hospital care. To address this, future research dedicated towards paediatric care for children with medical complexity is needed. 

Directions for Future Research

Potential research questions and/or directions for future studies include, but are not limited to: 

Defining Medical Complexity and Care Models

  • How do we categorize medical complexity – is it related to underlying diagnosis, illness severity or safety? How can this categorization be applied in practice?

  • Does the “traditional acute care” model on the GPIU need to be modified to meet the needs of children with medical complexity?  

  • What is the optimal model of care (e.g. consistent/same physician, role of trainees and carers) in the inpatient setting?

  • How can children and youth with complex issues that combine mental and physical health concerns be best cared for?

  • What is the best model of care to support children with medical complexity who have specific neuro-complexities?

  • What are the current models of care for children with medical complexity that exist in Canada? How does it vary by city/province/territory, and by setting of care (children’s vs community hospital)?

  • If, and how, should children with advanced technology needs (e.g. ventilators) be cared for on GPIUs?

  • Are there alternative methods and/or locations of care other than the inpatient setting how and where children with medical complexity with acute health problems can be managed?
     

Community and Family Support
  • How can clinicians communicate better with families and parents/caregivers of children with medical complexity, particularly with respect to minimizing medical error and increasing quality of care?  

  • How can community support be bolstered (e.g. overnight nursing) to ensure patients make it home faster?  

  • Evaluating family perspectives on patient care models, by asking, “what matters to them?”

OTHER PRIORITIES