What Happens When Caregivers Get Sick? Preparations During COVID-19 and Beyond

August 24th, 2020

A boy with medical complexity sits in his wheelchair and smiles as his mother caresses his head

Tips to help parents of children with medical complexity prepare for their own illness and other emergencies

Parents and caregivers of children with medical complexity often focus solely on their child’s health and wellbeing. But what happens when the parent/caregiver gets sick?

It’s a crucial question that families must consider.

“Self-care is overlooked by many parents because they’re so focused on day-to-day care for their child and thinking about what happens if the child becomes ill. Sometimes the daily care of their child can really overshadow parents caring for themselves and making contingency plans if they become ill,” said Dr. Alexandra Ryan, Medical Director for Ann and Robert H. Lurie Children’s Hospital of Chicago’s Health Partners Care Coordination.

“Especially in a climate like this where we have a pandemic, it’s even more important for families to think about what happens if a parent or caregiver is unable to do that daily care.”

Advance preparations can help parents/caregivers reduce stress, lighten their mental load and protect the child’s health and safety during a family illness and other emergencies.

“It’s simply disaster planning and something that all families of children with medical complexity should do on an ongoing basis,” said Dr. Carolyn Foster, Assistant Professor of Pediatrics at Lurie. “For many of these children, they can’t have just any babysitter or relative come over and learn it all in five minutes… The needs are so specific for these children, it requires additional planning.”

Drs. Foster and Ryan spoke with UIC’s Division of Specialized Care for Children (DSCC) about how to start these conversations with your pediatrician during the pandemic and beyond.

Assess your risk

It’s important to learn how to mitigate your family’s risk of contracting COVID-19. Dr. Foster says you can talk with your pediatrician about how to balance this risk with your child’s needs.

“For some children, going to school will be really important because of the way their therapies are set up or what their school’s plans are for in-person learning,” she said.

Lurie has put together a helpful guide, “Return to School for Youth with Special Healthcare Needs: Key Questions and Considerations for Families.”

It includes questions to discuss with your child’s doctor.

Pediatricians can recommend prevention strategies and what works for other families in similar situations.

The next step is preparing for what happens if you do get sick and stay ill for an extended period.

During these conversations, pediatricians may ask about your family’s living situation, including your home’s physical setup and who could isolate with you.

“This information can help with the decision-making and planning, although it’s not something everybody may be comfortable or ready to talk about with their pediatrician,” Dr. Foster said. “In this case, it’s very relevant.”

Have an up-to-date care plan

One of the most important steps for parents of children with medical complexity in general is to make sure your child has an up-to-date care plan.

The care plan should include a description of your child’s major medical issues, a complete medication list, an overview of their daily routine, a list of their healthcare providers and a plan for what happens if your child becomes ill. (The National Resource Center for Patient/Family-Centered Medical Home provides numerous tools, templates and more to help build a care plan.)

You should also keep an inventory of your child’s necessary medical supplies and have a backup supply, when possible, in case you need to quarantine. (DSCC also provides guidance for how to safely clean and reuse home medical supplies.)

“Having that information available makes it easier for whoever needs to take over care for the child in an emergency,” Dr. Foster said. “So, starting to develop the care plan if they don’t have one already is very important.”

Choosing backup caregivers

The care plan should also identify appropriate backup options if you or the primary caregiver cannot care for your child. These options could include family members, friends, a respite or transitional-care facility, or the hospital.

It’s important to consider who is best suited to provide backup care and make sure these individuals are aware and willing to help.

“Something for parents to keep in mind as they are thinking about backup care is trust. It’s more important that parents trust this person with the medical care and that the child can also develop trust in this person, whether it’s your closest family member or not,” Dr. Ryan said. “It’s more important to think about the characteristics of the person and how much trust you have in that person’s ability to do the tasks for the child, rather than the relationship.”

Dr. Foster recommends letting the backup caregiver spend time with your child and practice administering medication, watch how to safely transfer them and so on.

“It reduces the stress for the person who has to step in so it’s not all new to them,” she said.

If a family member or friend is not available, Drs. Foster and Ryan suggest looking to your family’s faith or school community. You should also let your pediatrician know if you’re struggling to identify backup care.

Preparing for hospitalization

Depending on their medical complexity, some children may require hospitalization if their parent/caregiver becomes ill. Discuss this possibility with your pediatrician and identify your hospital preference and transportation needs.

Dr. Foster said pediatricians can help you find the least restrictive option available for your child, such as a long-term care or respite facility.

If hospitalization or a facility stay is necessary, write down any “need to knows” about your child and keep them with their care plan and medication list.

Dr. Ryan said it’s helpful to include information about your child’s baseline development and behavior, such as how they typically communicate, how your child looks when healthy, etc.

“So often if somebody is hospitalized, especially patients with mental disabilities or medical complexity, the patient team may not know what the child looks like when they’re healthy. If you don’t know the child, it can be really hard to tell if they’re sick,” Dr. Ryan said. “Making sure that’s something that’s communicated to everyone taking care of the child is really important.”

Dr. Foster said it’s also good to have a list of important phone numbers at the ready. These contacts should include any specific transportation needed to get your child to the hospital.

“If there are any specific transportation arrangements that the caregiver should know about, that should be part of the care plan,” she said.

Home nursing

Some children with medically complexity who have nursing in the home setting may be able to continue to stay at home but with extra nursing care, if the child’s primary caregiver is ill or incapacitated.

Illinois’ Medicaid Program has worked to ensure additional respite hours are available for children who receive services from a Medicaid waiver.

Let your nursing agency know in advance if you prefer this option for your child.

Plan for future guardianship needs

Parents/caregivers should always make sure they have a will in place. A will ensures your future guardianship needs and other important decisions are planned for accordingly.

“We all know, especially in today’s world, how quickly things can change, so it’s really important to put planning a will more on the front burner for any family, but especially if you have a child with medical complexity who is going to require specialized care,” Dr. Ryan said.

“If a family has gone through the mental exercise of figuring out who they trust and who they’d like to take care of their child in case they get sick, then who they’d like to care for their child in the long-term if something happens to them may be the same person,” she added. “It may not be someone who guardianship automatically goes to, so that’s why it’s so important to have something in writing going forward.”

Lurie and DSCC staff recommend the following resources:

Prioritize planning

Though these steps and conversations may require some additional effort, Drs. Foster and Ryan say they are well worth the time and peace of mind.

“I think there’s a lot of invisible stress that parents may not even realize they have on their mind,” Dr. Ryan said. “You can really tackle it by having a plan in case the worst happens. People will see a lightening of that mental load once they have a plan in place.”

Dr. Foster also notes that there is no one-size-fits-all approach to contingency planning.

“Like any family decision, yours might be slightly different than others,” she said. “It’s very individualized. I’ve heard parents worry about judgment or this is what others are doing, but it’s a personalized decision based on a family’s unique situation.”