Children and youth with medical complexity account for between less than one percent to three percent of the pediatric patient population, yet they use up to one third of all child health spending.
Principal Investigator:
Dr. Jennifer Baumbusch, RN PhD
Principal Knowledge User:
Marlee McGuire, Provincial Health Services Authority
Co-Investigators:
Sacha Baily, MSW, RSW, PhD
Esther Lee, BSc, MD
Collaborators:
Angela Clancy, Family Support Institute
Shawna Lamden-Bennett
Funding:
Lyle Creelman Endowment Fund, UBC School of Nursing
Canadian Institutes of Health Research
Funding Year(s): 2020- 2022
Study Overview:
The coronavirus disease of 2019 (COVID-19) pandemic has impacted the global population, yet vulnerable groups have been particularly affected by the pandemic and its sequelae. Children and youth with medical complexity (CYMC) and their families are one of these vulnerable groups. Although several definitions of medical complexity exist, the main characteristics of this population include: the presence of complex, chronic conditions requiring specialized care, substantial health needs, functional dependence and/or limitations, and frequent healthcare usage. CYMC account for between less than one percent to three percent of the pediatric patient population, yet they use up to one third of all child health spending. The purpose of this study is to explore the experiences of parents providing care for children and youth with medical complexity during a pandemic. In 2020, we conducted a survey with parents/guardians of children and youth with medical complexity over the summer of 2020. The survey was completed by 154 respondents, who provided information about the impact of the pandemic on their child’s healthcare usage, education, and social service supports, as well as the impact on their own health and well-being. We are continuing to conduct in-depth interviews with a subset of parents/guardians. We will be following families over the course of a year to better understand the long-term impacts of the pandemic on their lives.
Knowledge Translation:
Publications:
Fong, V.C., Baumbusch, J. & Basu Khan, K. (2023, early view). “A very different place from when the pandemic started”: Lessons learned for improving systems of care for families of children with medical complexity. Journal of Child Health Care. 1 – 14. doi 10.1177/13674935231203274
Fong, V.C., Baumbusch, J. & Khan, K. (2023, early view). “Can you hear me ok?” Caregivers of children with medical complexity and their perspectives of virtual care during COVID-19. Journal of Pediatric Health Care. doi: 10.106/j.pedhc.2023.08.008
Baumbusch, J., Lloyd, J. E. V., Lamden-Bennett, S. R.*, & Ou, C. (2022). The unintended consequences of COVID-19 public health measures on health care for children with medical complexity. Child: Care, Health and Development, 1–9. doi: 10.1111/cch.12968
Research Report:
Baumbusch, J.L., Lamden-Bennett, S.R., & Lloyd, J.E.V. (2020). The Impact of COVID-19 on British Columbia’s Children with Medical Complexity and their Families. Vancouver, BC: University of British Columbia. Available at: https://open.library.ubc.ca/cIRcle/collections/facultyresearchandpublications/52383/items/1.0395118
Selected Presentations:
Baumbusch, J. & Lamden-Bennett, S. (September 1, 2020). The impact of COVID-19 on medically-complex children and their families. Paper presented at the BC COVID-19 Research and Collaboration Symposium: Public Health, Populations, Health Services, and Impacts. Online.
Baumbusch, J., Lloyd, J.E.V, & Lamden-Bennett, S.R. (June 23-25 2021). Understanding the impact of COVID-19 on healthcare for medically-complex children and youth. Poster presented at the Canadian Paediatric Society Virtual Conference 2021. Online.
Baumbusch, J., Lloyd, J.E.V. & Lamden-Bennett, S.R. (June 30, 2021). Understanding the impact of COVID-19 on children with medical complexity and their families. Paper presented at the 15th International Family Nursing Conference. Online.
Baumbusch, J., Clancy, A. & Jokisch, C. (March 31, 2022). Understanding the impact of COVID-19 on the mental health of parents and caregivers of children and youth with support needs. Mental Health Research Canada: Spotlight on Research. Online.
Media:
August 12, 2020. Vancouver Sun (Reporter: Rob Shaw). UBC nursing professor researching impact of COVID-19 on medically complex children. Available at: https://vancouversun.com/news/local-news/ubc-nursing-professor-researching-impact-of-covid-19-on-medically-complex-children?utm_term=Autofeed&utm_medium=Social&utm_source=Twitter#Echobox=1597188803
August 12, 2020. Glacier Media/TriCity News (Reporter: Diane Strandberg): ‘These are the most frail and fragile kids,’ UBC survey. Available at: https://www.tricitynews.com/news/these-are-the-most-frail-and-fragile-kids-ubc-survey-1.24184702
August 13, 2020. CityNews (Reporter: Isabelle Raghem): COVID-19’s impact on families with medically-complex kids: Available at: https://www.citynews1130.com/video/2020/08/13/covid-19s-impact-on-families-with-medically-complex-kids/
Report
