UBC professor researching COVID-19’s impact on medically complex children
VICTORIA — A new survey from a University of B.C. professor may shed light on how COVID-19 has impacted care for some of the most vulnerable children in the province.
A research team, led by associate professor Jennifer Baumbusch at UBC’s school of nursing, is gathering data to shed light on the generally unreported impact of the pandemic on medically-complex children, such as those with complex or specialized care needs, including spinal muscular atrophy, cerebral palsy, muscular dystrophy, other rare diseases, nervous disorders and conditions that require help with feeding, breathing or functioning day to day.
Many of the government’s home support care services have been reduced or paused during the pandemic, affecting both the children and the families left to care for them without help, said Shawna Bennett, a community research liaison for the survey and also a mother of a 16-year-old who requires support.
“What we’re seeing is parents who would need, for example, 24-hour nursing care because of ventilators, aren’t getting that care,” said Bennett. “Families have been very frank, and families feel abandoned and invisible. It has become sink or swim for families, barely treading water. We felt the study was a way to investigate the needs of these families and generate a qualitative account of their experiences.”
More than 100 people have already filled out the survey. The results will form a study to be published in a peer-reviewed journal, as well as a pre-release of findings in September to try to inform government about shortfalls in the system, said Bennett.
The survey asks about care levels before and during COVID-19, as well as queries the impact of any changes on the well-being of family and caregivers.
As home support declined during the pandemic, Bennett said families are struggling with burnout, depression and other side effects of having to provide 24-hour care without help. B.C. is also struggling with rising COVID-19 case numbers, preparing for a potential second wave this fall and planning its back-toschool strategy. Many families don’t see hope on the horizon, said Bennett.
“Simply put, as a parent you cannot go for six months, 24-hours a day, and maintain a high level of care for your totally dependent child,” she said. “The fear is we are going to start to see some really bad outcomes apart from COVID. And when parents who are already on the edge are pushed that far, in September if it gets as bad as projected, things are not going to be good for families.”
Government funding to support medically complex children comes from a variety of sources, including the Ministry of Children and Family Development and health authorities.