Supporting Families of Children with Medical Conditions During COVID-19

The COVID-19 pandemic has complicated the care of children with preexisting medical conditions. Children with chronic conditions such as lung and heart disease, diabetes, and those with comprised immune systems, face unique stressors during the pandemic, according to Deborah Friedman, PhD, and Nancy Rotter, PhD, co-directors of the Pediatric Behavioral Medicine Program at Mass General for Children.

Children with these underlying conditions are more medically vulnerable to complications from COVID-19, and their families face disrupted access to their usual medical and related care (e.g. physical therapy, in-home or school nursing support) and anxiety about managing this increased risk during the transition to usual activities as shelter-at-home restrictions are eased.

Families Shoulder the Weight of Care

The Pediatric Behavioral Medicine Program consists of a team of pediatric psychologists who coordinate care to help children and their families cope with their medical conditions. Dr. Friedman works with the hospital's Pediatric and Adult Cystic Fibrosis programs and Dr. Rotter works with the Pediatric Food Allergy Center and Gastroenterology programs.

Prior to the pandemic, the doctors say, children and their parents had easier access to in-person medical services and supports, such as physical therapy, routine medical visits and nursing support. For instance, children with type one diabetes may have depended on regular blood glucose checks at school, while other children had the support of in-home nursing services.

Dr. Rotter notes that families of children who have food allergies experiencing food insecurity may have limited access to foods that their child can safely eat. The ongoing financial crisis also places additional stress on families who are already experiencing the burden of high health care costs. Moreover, Black, Latino and immigrant families are disproportionately impacted by the pandemic due to chronic resource and health disparities.

Parent Support Is Key

Parents are the primary source of support for children. They help buffer the potentially negative mental health impact of the pandemic in addition to supporting children’s ongoing medical needs. Drs. Friedman and Rotter emphasize the importance of self-care for parents, and that we do our best as a community to support them.

They recommend a few strategies for coping during this time:

Dr. Rotter suggests that parents "try to be gentler and less judgmental of themselves,” adding “it is important to remember that there is no right way to parent, and certainly not during a pandemic."

To help with feeling overwhelmed, Dr. Friedman recommends breaking down tasks and planning to try to accomplish one or two things. She suggests that parents think about what is most important to take care of today. That may be, for example, refilling your child’s medication prescription or ordering groceries. She says, “Parents cannot do all of the things that they might have done in a typical day. It is helpful to create new and realistic expectations in light of significant changes families are experiencing now.”

“Structure and routines are helpful, particularly for children with chronic medical conditions” says Dr. Rotter. During this challenging time, many of the typical routines followed by families have been disrupted. Dr. Rotter advises that families create new routines for things such as taking daily medications, exercising, eating healthfully and developing sleep schedules.

Even in these difficult and disruptive times, it is still possible to experience moments of beauty, happiness, humor and connection, says Dr. Friedman.

“These moments can really get lost when we are in a very busy day, with all the pressure of trying to take care of children, their medical needs and other responsibilities. It can be helpful to just take a few minutes at the end of the day to write down one or two moments where you felt good and had a moment of connection or joy.”

These are typically small moments, like noticing signs of spring, enjoying your morning cup of coffee, laughing at a funny meme that a friend sent or having a good snuggle with your child.

Supporting One Another

Parents do not have to feel alone. It can take an extra effort to reach out, but staying socially connected during this time of physical isolation is vital for emotional well-being.

“Often parents of children with chronic medical illnesses have developed connections and created virtual communities with other families whose children manage the same conditions,” says Dr. Rotter. These support systems may be incredibly useful.

Parents are also encouraged to stay connected to their children's health care providers, the doctors say.

"Parents should reach out to their own primary care physician or their child's medical team for support and know that they are not going to be bothering them," says Dr. Friedman. “This is a challenging time, and many will benefit from more support either for themselves or for their children.”

Parents of medically ill children can also teach the community at large about coping during the pandemic, says Dr. Friedman. Many have had to be experts in practicing infection control and social distancing prior to the pandemic and have built a great deal of resilience, though this situation is at a scale that is unprecedented. They have had experience with making tough decisions about whether to attend activities or events, like parties or graduations, because either their child is unwell or is particularly vulnerable.

“We can learn from these families, who are really experts at problem solving and learning to be prepared for every situation because their child's health depends on it,” says Dr. Rotter.

Drs. Friedman and Rotter are hopeful that this public health crisis will lead to a new understanding of our interconnectedness. “Empathy toward each other can help us develop better ways to support all individuals and families,” says Dr. Friedman.