As COVID mandates are lifted, we must do more to support carers for children with special health needs

“We have all been on the verge of accepting COVID-19 as a part of our lives, but let’s not forget that the stakes are higher for some.”

As COVID mandates are lifted, we must do more to support carers for children with special health needs

Emil Cohen / NYC Council

As a pediatric psychologist working with children and families, and as a working mother of a young child, I have appreciated the attention to the enormous stress parents experienced throughout the pandemic, as well as the violent mental crisis in this country. But the unique experience of parents and caregivers of children with special health needs, including complicated medical conditions, has received little attention.

In recent months, as the state of New York has been working to eliminate mask mandates, and as a federal court struck down the CDC’s demands for masks on airplanes and other forms of public transportation, caregivers have told me they feel forgotten and alone with their fear. Recently, the same day, two caregivers talked about being filled with anxiety and paralyzed in decision making, while feeling that the world around them is moving towards “normal”. They are not alone.

Pediatric medical conditions vary widely in their treatment and prognosis, but some children require daily treatments, frequent visits to pediatric subspecialists or hospitals, and treatment of side effects such as nausea, pain, and fatigue to name a few. Children may need special education or additional therapies to support their development and health. Caring involves addressing each of these needs, which can result in less accessibility for other children, financial burden due to treatment costs, or reduced ability to work and their own physical health problems. Not surprisingly, relatives have an increased risk of mental disorders such as anxiety, depression and traumatic stress.

Throughout the pandemic, decision-making for all parents has been difficult. The last two years have required almost constant risk vs. advantage analysis based on sometimes unclear or conflicting information and moving data points. Each family has their own degree of risk acceptance. Do you allow your unvaccinated child to socialize in a small or large group? Does my child’s school use strong security protocols? Do you gather as a family for holidays and traditions? How does vaccination status affect your choices? The CDC offers guidelines for families to consider when making these decisions.

Now imagine being a caregiver for a chronically ill child and facing the same problems. It is estimated that about 2.6 percent of children in the United States are immunocompromised, which based on current population estimates is about 1.9 million children. I work with many parents whose children have cancer and are being treated with chemotherapy, which typically results in a weakened immune system. At the beginning of treatment, they are advised to do what they can to prevent their child from contracting diseases such as the common cold. In fact, this is one of the very few things they might feel they have some control over. Clean, avoid crowded places, and reschedule visits from sick guests. The bottom line: avoid disease as best you can.

Recently, the parent of an immunocompromised child told me that if mask mandates were removed from their child’s school, the child would be unable to attend for the rest of the school year, maintaining their isolation and reducing the quality of their education.

Avoiding illness has not felt like an easy feat for children with complex medical problems over the past two years. Caregivers have been told that children carry less viral load, are less susceptible to getting COVID-19, or have milder symptoms. Lately, the good news about the Omicron variant is that despite being highly contagious, it usually causes less serious illness. Most parents can be assured that the majority of children are relatively safe, and it is likely that if they receive COVID-19, they will do well.

But this is not always the case. People with pre-existing conditions are at greater risk for complications from COVID-19. This has been highlighted by the prevalence of multisystem inflammatory syndrome in children (MIS-C) or the fact that some children, although not most, experience severe symptoms and may be hospitalized or even die from complications related to COVID-19 . Recent changes in removing mask mandates in schools increase anxiety and complicate the picture even more for caregivers of sick children.

Caregivers of medically complex children know that their children may be in the minority, especially those who are not yet eligible for vaccination or who cannot reliably wear a mask. For most people, protecting their child from illness has been crucial. Yet caregivers are also very aware of how necessary balancing mental health and a sense of normalcy is as well. Isolation, educational disorders, stress and trauma have caused a worrying increase in mental challenges for young people. Families with more than one child must also struggle to protect the mental health of healthy siblings and accept that the more freedom they are given, the greater the risk of the sick child being exposed to illness. On top of the pandemic, some families of sick children even expressed that the hospitals they visit are often no longer perceived as safe places.

In New York City, mask mandates continue for preschoolers who are not yet eligible for vaccination. Currently, the number of COVID-19 is rising again thanks to particularly infectious variants. We all still ride the pandemic roller coaster, but the divers and valleys are experienced by caregivers of sick children in a unique way.

We have all been on the verge of accepting COVID-19 as a part of our lives, but let’s not forget that the stakes are higher for some. Things like relief, paid family leave, and access to affordable mental health care have always been necessary for caregivers, but are now more needed than ever. And we can each do our part by supporting the caregivers in our lives with kindness, empathy and understanding.

Dr. Salley is a pediatric psychologist who works with children facing serious medical conditions and their relatives in New York City.

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