'These are the most frail and fragile kids,' UBC survey

Parents of children who are medically compromised have been left to fend for themselves during the COVID-19 pandemic and a new survey will find out how they are managing and what they need.

The University of BC School of Nursing is asking parents of children who have severe health issues how they are coping and what they need as part of an initiative to get more supports.

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“These are parents who are caring for the kids 24-7, doing skilled nursing care for them,” said Jennifer Baumbusch, associate professor, who is conducting the study. 

Due to the risk and consequences of their children catching COVID-19 parents haven’t been able to access services. Typically, these families would participate in health care programs or their children would be at school supported by a team for six hours of the day.

And while the province provided $250 for respite care, it hasn’t been enough to help overwhelmed families, Baumbusch told the Tri-City News.

“These are most frail and fragile kids that would be in our system. We are looking at what the impact of COVID-19 has been on them and their families.”

Approximately 1% to 3% of children in B.C. would be in this group and Baumbusch hopes their parents will fill out the online survey that takes about 30 minutes to complete.

Baumbusch is concerned that these families who typically use health care services are struggling on alone and may be facing additional challenges.

For example, they might not be able to work if they are providing nursing care for their children.

“People are drowning, this has been going on how many months — for four or five with no end in sight. A lot of people who might have had registered nurses or support in their home and had to stop that because of concerns for their children’s health.”

The survey aims to find out what services families are using, what’s missing. The information will be passed on to the government. 

Medical-complexity is defined as:

• the presence of complex, chronic conditions requiring specialized care, and

• substantial health needs, and 

• functional dependence and/or limitations, and

• frequent healthcare usage. 

The deadline to complete the survey is Aug. 28. Find more information here.

So far about 100 families have completed the survey, 40% in Fraser Health, which includes the Tri-Cities.

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