Supporting families with complex medical needs during COVID-19
April 06, 2020
Supporting families with complex medical needs during COVID-19

    Facing COVID-19 with special health care needs: Dr. Kimbrough answers your top questions

    Supplies are in demand, routines are changing and new challenges are introduced daily. This is particularly true for families of children who are medically fragile or have complex medical needs. Dr. Tiffany Kimbrough provides some advice for taking extra precautions during this time, and insight into how we can support these fellow community members who may need a little extra help right now.

    What does it mean when you say ‘medically fragile?’

    The term medically fragile or medically complex refers to people who have chronic health conditions that put them at increased risk of complications from illnesses that may be mild or routine for most people. These underlying health conditions can be rare conditions or ones that we are more familiar with, like asthma, which may affect the lungs or the immune system.

    Overall, it seems that kids tend not to be as affected by COVID-19 as adults, but we’re getting more data regarding which children are affected. Most of the children who are being admitted to pediatric intensive care units do have underlying health conditions. We are keeping a close eye on all of the data and using it to help advise families.

    Practicing extensive cleaning and other infection control measures is not new to these families, right?

    Most families who have children with special health care needs are used to taking precautions and reducing risk in their everyday lives. This includes restricting visitors who may have mild illness, being more diligent about cleaning, and ensuring proper supplies are always on hand for the care of their child. Many are already practicing excellent hand hygiene measures and separating sick family members from the ones who are more at-risk.

    How can the hoarding of hand sanitizer, masks and other supplies be particularly detrimental for families of children with extensive medical needs?

    There is so much information in the news about what this virus looks like and what lies ahead. We’re all trying to do the best we can to keep our families safe. But, some families who need masks for line care at home or gloves to avoid sharing germs are having a hard time finding supplies they need for daily life. We have to remember that we’re all in this together and we need to help those who are vulnerable in our community stay well and out of the hospital right now.

    The CDC now recommends wearing cloth face coverings over the nose and mouth in public, particularly when social distancing can be difficult (such when going to the grocery store). This can be a scarf or mask made from common household materials as demonstrated by the U.S. Surgeon General in this video. Please keep in mind that surgical masks and N-95 respirators are in limited supply and should be reserved for health care workers.

    Are there other supplies frequently used by these families that may be in short supply these days?

    There are reports of gloves being in short supply in some parts of the country for home care, which is requiring some families to get creative in how they practice safe techniques for daily care. We are grateful that in Virginia, our director of the Department of Medical Assistance Services (DMAS) has authorized that families can get two months’ worth of their daily medical equipment and up to 90 days of their medications.

    I encourage families to check in with their home health companies to see if they can get some extra supplies to have on hand, anticipating potential shortages down the line. It may also be helpful to check in with these suppliers to find out which equipment can safely be cleaned and re-used and which needs to be new each use.

    Check in with the pharmacy about which medications are stable for 90 days. Lastly, if it is appropriate for your child to use an inhaler instead of a nebulizer for breathing treatments, we are recommending switching to decrease aerosolizing the virus. Check with your health care provider find out if this is a good option for your child.

    We’ve all been directed to practice social distancing. Is this measure enough to protect our medically fragile children?

    Social distancing is a great first start. It means only leaving the house for essential trips (medications, food). This can be a daunting thing to think about for families who are already at risk for isolation or burnout.

    Going outside in your own yard or immediate area – not to parks – is a good way to get out and enjoy some fresh air. You can also still connect with family and loved ones digitally or with video calls, but it’s definitely a time to restrict visitors to only those who are absolutely essential for the care of your child. If you do have a nurse who regularly comes to your home, check in with them before each shift to ask if they’re experiencing any symptoms. If they are, they must stay home. If they develop symptoms during the shift, they should leave immediately and contact their agency about next steps.

    I have seen some innovative signs on social media from families asking anyone who is approaching to be aware that there is a medically fragile individual in the home and to leave anything on the front doorstep with a knock or doorbell ring.

    If a child does begin to exhibit symptoms that could indicate COVID-19, what are the best steps to take?

    Monitor those symptoms daily and check in with your child’s pediatrician or specialist, whichever is most appropriate given their regular care and needs. They can help guide you regarding specific measures to check on, as well as when it might be most appropriate to bring your child in for a hands-on assessment.

    These children may need to come to the hospital frequently. What is CHoR doing to protect them during COVID-19? 

    VCU Health and CHoR are taking this very seriously and taking great measures to protect our patients, families and medical providers throughout this uncertain time. It’s been really encouraging.

    There are numerous interventions in place right now, including:

    • Masks are required for patients, visitors and team members. If you don’t have a mask, we’ll provide you with one. (Children under 2 should not wear masks.)
    • Modified visitation guidelines remain in place. We know it’s hard and we thank you for understanding that it’s for everyone’s safety. Friends and family can stay connected virtually and send e-cards with well wishes.
    • We’re screening ALL patients and visitors with temperature checks and questions about symptoms.
    • We’re testing patients prior to surgeries, procedures and hospital admissions to be sure we use proper protective gear to keep everyone safe.
    • Team members are asked to self-monitor for symptoms and stay home if they’re sick.
    • Appointments are spaced out so fewer people are in the waiting rooms.
    • We’re using special cleaning and disinfecting processes. You’ll see more cleaning staff working hard for you, too. We are taking extra care to make sure that our exam rooms, waiting rooms, hospital rooms, equipment, bathrooms and everything in-between is safe for our kids, families and team members.
    • Signage throughout our facilities reminds everyone about safety measures, such as masks, handwashing and maintaining distance between groups.
    • Telehealth services continue to expand to limit in-person interactions when appropriate, including our virtual urgent care clinic that is open from 4 p.m. to midnight.

    What other steps can be helpful for these families to think about right now that may be different from their everyday routines?

    When possible, it’s a good idea to place hand sanitizer in most rooms, stock tissues and provide trash cans throughout the home to discard items.

    Increase disinfecting of high-touch surfaces like door knobs, remote controls and light switches.

    Try to have over-the-counter items on hand that you may need in the event of illness in the home. This will help you avoid making unplanned trips out.

    How can people help families with complex medical needs right now?

    Check in on your friends who have children with special health needs. Everyday life can be challenging for them and this takes it to a whole new degree. If you are healthy and can tack on an extra errand to the essential outing you’re doing, check in to see if they need anything (that can keep caregivers from going out and possibly introducing germs into their homes).

    Ask caregivers if you can order them a meal for delivery so they have one less thing to think about. Lastly, offer a supportive ear for them to share their challenges and fears (via phone, of course).

    Watch the full interview with Dr. Kimbrough:

    If your child has medically complex needs and you're concerned about COVID-19, we can help. Call 804-828-CHOR today to schedule an appointment with one of our doctors.

    Subscribe to our blog

    Sign Up