PRP045: Caring for Children/Youth with Complex Care Needs (CCN) during the COVID-19 Pandemic

Lillian MacNeill, PhD, BA, MA; Luke MacNeill, PhD; Shelley Doucet, PhD, RN; Alison Luke, PhD


Context: Caregivers of children/youth with complex care needs (CCN) often have difficulty coordinating care across care providers and accessing needed services. These difficulties may be exacerbated by sudden changes within the healthcare system and the community at large. Such changes are currently evident due to the novel coronavirus (COVID-19) pandemic, which has resulted in social distancing recommendations and quarantine measures, as well as a reduction in services and a shift to telehealth services within the healthcare system. Objective: The current study is evaluating the impact of the COVID-19 pandemic on the mental health of caregivers of children/youth with CCN, as well as the service needs of caregivers and care providers when caring for children/youth with CCN. Study Design: This study employs a cross-sectional mixed methods design. Data is being collected via survey using closed- and open-ended questions. Setting: The survey is being distributed to caregivers and care providers of children/youth with CCN in New Brunswick (Canada) using an online platform. Population Studied: Approximately 150 caregivers and 20 care providers are being recruited. Participants must be caregivers or care providers for children/youth with CCN living in New Brunswick. Outcome Measures: Caregiver data includes indicators of mental health (depression, anxiety, and stress, both before and during the pandemic) and qualitative information about caregivers’ experiences caring for children/youth with CCN during the pandemic. Care provider data also includes qualitative information about their experiences caring for children/youth with CCN during the pandemic. Results: Data collection is scheduled to close in September 2020. The findings presented on this poster will provide insight into the challenges that caregivers and care providers are experiencing and offer direction on how to improve care and services to these individuals during periods of strain on the healthcare system and extended social isolation. Conclusions: This study will provide organizations involved in the care of children/youth with CCN with tools to better facilitate convenient and integrated care during a large-scale healthcare crisis.

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