COVID-19 Impacts on Lived Experiences of Children and Families with Complex Care Needs Residing in the Maritimes: COMPLEX CARE

Background: Children and youth with complex care needs are one of the most vulnerable populations served by our pediatric health and social care systems. Prior to the COVID-19 pandemic, caregivers of children with complex care needs reported experiencing a number of unmet service and support needs. COVID-19 response measures have resulted in rapid changes to health and social systems across the Maritime Provinces. It is unclear how these changes impacted the needs of families living with complex care needs. Objectives: This research aims to understand how changes to health and social supports implemented during the COVID-19 pandemic impacted children with complex care needs and their caregivers in the Maritimes. We will achieve this by 1) describing how pandemic-response public health measures and/or service changes were implemented, and 2) exploring how children with complex care needs and their caregivers were impacted by these rapid policy and service changes. Methods: To address objective 1 we will conduct an environmental scan to identify public health policy and service changes implemented in the Maritimes during the COVID-19 pandemic relevant to complex care needs. We will supplement our findings with key informant interviews with policy makers to further understand the context of these changes. To address objective 2, we will conduct qualitative interviews with youth and caregivers living with complex care needs in the Maritimes to explore their perceptions and experiences with policy and service changes during COVID-19. Impact: This work will identify policy and service gaps experienced by children with complex care needs and their caregivers in the Maritimes during the COVID-19 pandemic. It will also inform recommendations for policy and service changes during future public health emergencies.