ADAPT: Assessing and Developing an Adapted navigator role to support Parents during neonatal Transition.

• Our team designed the Coached, Coordinated, Enhanced Neonatal Transition (CCENT – see below for additional details) randomized controlled trial aimed to empower parents of high-risk infants transitioning from Neonatal Intensive Care Unit (NICU) to home. Using a multi-phased, theory-based approach, this study will explore how to adapt the CCENT intervention to optimize the effectiveness and implementation of the navigator role.

1. coaching and psychosocial support within an Acceptance and Commitment Therapy (ACT) framework,
2. care coordination, and
3. anticipatory education around the care for a medically complex infant.

For more information visit the CHILD-BRIGHT Website.

Caring for the Caregiver (C4C): An Integrated Stepped Care Model for Caregivers of Children with Medical Complexity

• The aim of this study is to determine the feasibility of a multicomponent model to support caregiver mental health needs within a hospital-based paediatric Complex Care Program. A quantitative and qualitative feasibility assessment will be undertaken to inform the decision to proceed with a randomized controlled trial to assess the effect of this model.

Understanding the psychiatrist role in caring for caregivers of children with medical complexity: A retrospective chart review

• The overarching goal for this study is to evaluate the psychiatrist role in caring for caregivers of CMC and the clinical recommendations associated with diagnostic assessment and treatment for this population.

This study is testing a new integrated clinical pathway called the PIUO Pathway, as a protocol to identify treatable causes of pain and irritability in children with multiple disabilities and limited communication. In this study, we will use a waitlist-controlled RCT design, with 120 children randomized to PIUO Pathway or waitlist (standard care) treatment arms. SickKids is one of four centres participating in the PIUO study.

The objective of this study was to develop an online patient-facing platform to ease the burden of coordination of care for parents of CMC, begin to level the inequalities in access to information, and engage a diverse set of stakeholders to improve the care of CMC.

The primary objective of this study is to describe courses of care that were altered during the COVID-19 pandemic. The secondary objectives are to

1. identify thematic similarities between clinical cases to inform clinical practice change and
2. explore associated negative effect of health care delivery changes associated with the COVID-19 pandemic.

The objective of this descriptive study is to understand the prevalence and experience of housing need in children with medical complexity through surveys and qualitative interviews. The study aims to understand the relationship between CMC and housing need in order to develop a clinical role for early screening of housing risk and to inform appropriate housing interventions that meet the unique needs of this population.