Candice Jones, MD, FAAP

Tragically, the pandemic has taken a caregiving loved one from tens of thousands of children. How do we, as pediatric health care providers, provide care and comfort?

From April 1, 2020, to June 30, 2021, more than 140,000 children in the United States experienced the death of a primary caregiver, according to findings recently published in Pediatrics. The modeling study calculated COVID-19–associated orphanhood (death of 1 or both parents) and deaths of custodial and coresiding grandparents by using mortality, fertility, and census data. The investigators reported that for every 4 COVID-19 deaths, 1 child lost a parent or caregiver.

 As a pediatrician, I found that statistic, which highlights a crisis for children in the pandemic, to be profound.

Unsurprisingly, the study also uncovers disparities in COVID-19– associated death of caregivers. American Indian and Alaska Native children were 4.5 times more likely, Black children were 2.4 times more likely, and Hispanic children were 1.8 times more likely to lose a parent or grandparent caregiver than their non-Hispanic, White counterparts. These data mirror the disparate rates of COVID-19 infection and out- comes in communities of color and point to long-standing inequities, such as discrimination, barriers to health care, educational gaps, and economic instability.

The loss of a parent or primary caregiver who provides love, safety, and stability is a devastating event and has a long-term impact on a child’s health and well-being. Parental loss is identified as childhood trauma or an adverse childhood experience that, unbuffered, can lead to toxic stress, affecting the developing brain and body and increasing risks of various physical, mental, behavioral, and substance use problems in childhood and beyond.

Perhaps the most impactful element of the study is the call for a “care for children,” a comprehensive response to improve outcomes in children experiencing orphanhood. The 3-pronged approach aims to:

prevent COVID-19–associated death of caregivers through effective and equitable policies and practices that improve access and uptake of COVID-19 vaccines;

prepare families, offering support and services to help the child experiencing loss of a parent or primary caregiver;

protect children through programs that build resilience in the family, enhance parenting skills, and improve family relationships.

Pediatric health care providers are uniquely positioned to help children grieving caregiver loss from COVID-19. By incorporating strategies from the study and learning from grief experts, such as the Pediatric Advance Care Team (PACT) at Children’s Hospital of Philadelphia in Pennsylvania, we can empower families to overcome traumatic loss by guiding them through the grieving process.

PACT highlights 3 key areas plus tips to help families navigate death and grief

: Use age-appropriate language, and avoid euphemisms (eg, say “Mom died” in lieu of “We lost Mom”). Allow the child to ask questions, provide helpful books (

www.commonsensemedia.org/lists/books-about-grief

), prepare the child for what will happen next (eg, the funeral), and how they might feel in the coming weeks/months.

RECOGNIZING THAT GRIEF DIFFERS AND VARIES AMONG CHILDREN

: Be prepared for regression (eg, bedwetting), along with sleeping problems, roller- coaster emotions, and behavioral changes eg, anger, withdrawal).

: Encourage honoring (eg, a balloon release) and remembering the loved one (eg, sharing stories, creating a memory box/scrapbook/video, keeping traditions). Grief counseling can help both the child and their current caregiver, who should also practice self-care and understand the stages of grief.

Pediatric health care providers will encounter children who are orphaned during the pandemic. Developing clinical action steps to address this pandemic-related trauma and the grief that follows is important and should incorporate the following steps:

Screen for COVID-19 related caregiver loss: “Has this child lost a parent or other caregiver to COVID-19?”

Assess symptoms of grief and address any maladaptive responses.

Promote healing and resilience building by encouraging safe, stable, nurturing relationships and environments and positive childhood experiences.

Provide referrals and resources, such as social services support, United Way 211, bereavement programs, trauma-informed mentoring programs, parenting classes, and quality childcare, as well as literature on grief.

Advocate for federal, state, and local support of children who have lost a parent or other caregiver to COVID-19, such as coordinating efforts to identify orphans; creating a COVID-19 bereaved children’s fund; and expanding access to community-based, grief-focused, and trauma- informed mental health services.

Amplify organizational efforts and trusted voices to reduce health disparities and promote health equity related to the pandemic, such as The Conversation Between Us, About Us, a campaign codeveloped by Kaiser Family Foundation and the Black Coalition Against COVID.

Continue to promote COVID-19 prevention by encouraging families to practice safety measures including vaccination, mask wearing, hand hygiene, and testing, as well as advocating for community-wide layers of protection to reduce the spread of the virus and associated deaths.

published those study results, the number of children orphaned due to COVID-19 has risen to an estimated 200,000- plus.

 Health care providers play a critical role in raising awareness, protecting families, and intervening when children experience the loss of a parent or other caregiver to COVID-19.

1. Hillis SD, Blenkinsop A, Villaveces A, et al. COVID-19-associated orphanhood and caregiver death in the United States. 

. Published online October 7, 2021. doi:10.1542/peds.2021-053760

2. How to help children grieve. Children’s Hospital of Philadelphia. December 7, 2021. Accessed December 10, 2021. 

https://www.chop.edu/news/health-tip/how-help-children-grieve

3. Treglia D, Cutuli JJ, Arasteh K et al. 

Hidden Pain: Children Who Lost a Parent or Caregiver to COVID-19 and What the Nation Can Do to Help Them.

 COVID Collaborative. December 2021. Accessed January 27, 2022. 

https://www.covidcollaborative.us/assets/uploads/img/HIDDEN-PAIN-FINAL.pdf

4. The Conversation: Between Us, About Us. Accessed January 5, 2022. 

https://www.greaterthancovid.org/theconversation/toolkit/

. Pediatric research roundup, orphanhood due to COVID-19—episode 96. Published January 4, 2022. Accessed January 26, 2022. 

https://www.aap.org/en/pages/podcast/pediatric-research-roundup-orphanhood-due-to-covid-19/

Articles

The COVID-19 pandemic has been full of difficult situations for children, from education disruptions to lack of socialization at important developmental stages. It's also left many children without parents or caregivers. What can clinicians do to help these children?

Helping children grieve the loss of a caregiver due to COVID-19

Candice Jones, MD, recently spoke with Charnetta Colton-Poole, MD, and Leila Jerome Clay, MD, about the challenges of vaccine hesitancy and how pediatricians can best get the message across that vaccines are safe, effective, and at times crucial.

Contemporary Pediatrics®: Can you provide a brief overview of the increasing phenomenon of vaccine hesitancy? How did we get here?

 In the United States, vaccines began to gain traction in the 1800s with the surge of smallpox, a severe, contagious infectious disease known to kill 3 out of every 10 persons with a diagnosis.

Over time, vaccination became widely accepted, and smallpox was eliminated in the United States in 1952. Also during the 1930s, President Franklin D. Roosevelt suffered from polio and lost the use of his legs after infection, making him passionate about finding a cure. This leadership initiative created a culture that was unified in vaccination creation and distribution efforts, despite challenges.

Although history gives an account of countless lives that were saved thanks to vaccines, there have also been adverse events (AEs) that have instilled fear and concern in the population, including hepatitis B’s association with multiple sclerosis; live polio inoculation errors; and the false association of the measles, mumps, and rubella (MMR) vaccine with autism.

In today’s culture, vaccine hesitancy stems not just from history but also from a multitude of factors including celebrity influence, internet misinformation, decreased visibility of vaccine-preventable diseases, knowledge of harmful outcomes after vaccines, lack of knowledge, and government and physician distrust.

As you can see, vaccine hesitancy is not a new phenomenon. In fact, from the 1800s until now, the core of the conflict is still the same.

What factors influence vaccine decision-making? How can health care providers (HCPs) address these factors to minimize vaccine hesitancy in their patients and caregivers?

 When considering the factors that influence vaccine decision-making, most parental concerns are based on trust, knowledge, and fear. Parents and caregivers have to trust their HCP, have accurate knowledge, and overcome their fears to move from opposition or hesitancy to acceptance. However, this is easier said than done. Many parents have researched vaccines before the child’s visit, often gathering information from noncredible sources, and left feeling confused and fearful when they were bombarded with emotional stories of vaccines causing harm or misinformation about what toxins or chemicals may be present in vaccines. Additionally, there are growing numbers of conspiracy theories related to vaccines, as well as general distrust of government, medical professionals, and pharmaceutical companies.

To overcome these factors, the most important things that we can do as HCPs are establish trust, educate early, and help parents overcome their fears to minimize vaccine hesitancy. Establishing trust begins with a medical home. Being able to see the same staff and provider during visits helps parents feel more comfortable and develop a trusting relationship with their provider.

In my practice, I start providing vaccine education early and often. At the 1-month visit, I begin explaining in great detail what vaccines we plan to give at the next visit, what diseases they prevent, and possible AEs. I use photos and evidence-based medicine to ensure that parents have the correct information. A parent who is armed with the right information can make an informed decision as it relates to vaccines and their child. To truly help parents overcome their fears, providers must be armed with scientific truths and be able to offer that information to parents.

Is there a best approach to explain the importance of immunizations and encourage parents to get their children vaccinated?

 The best approach is to start early and educate often. Take the time to listen to parents and care- givers. Find out how much they know about vaccines, correct any inaccurate information, and fill in the gaps. This includes discussing the safety and efficacy of the vaccine in a way that is easy for them to understand. Stay up-to- date on the latest in vaccine data, and be aware of misinformation circulating so you can easily dispel myths and refute false claims.

Also, don’t be afraid to share your experiences with vaccine-preventable diseases while also being transparent about possible vaccine AEs, which helps parents and caregivers understand the risks and benefits of vaccination. You can confidently encourage parents to weigh the benefits and risks for themselves and recommend vaccination if the benefits outweigh the risk for them, always leaving the decision in their hands.

More times than not, if there is a healthy doctor-patient relationship and patients don’t feel judged but, rather, heard and informed, they will opt for vaccination, as it is generally the best option for their child.

How can HCPs help caregivers and patients get over the fear and distrust associated with vaccinations?

 The key to helping caregivers and patients get over the fear and distrust associated with vaccines is creating an environment where questions are welcome and delivering accurate education. Having brochures available, signage in the doctor’s office, and videos in the waiting room are the first steps in helping to educate patients and caregivers.

Moreover, HCPs should ensure that there is ample time during the visit to offer education and truly discuss concerns. It is normal for patients and caregivers to have questions and concerns regarding vaccines. Always encourage questions and answer in a way that they can understand.

For example, many parents worry about giving the MMR vaccine during the 12-month and 4-year visit because of concerns about autism. When discussing vaccinations and possible AEs for this child, we should let the caregivers know that there are no data to support the correlation.

Similarly, when I am discussing meningitis vaccine information with my patients and caregivers, I share the overwhelming benefits of the vaccine after reviewing potential, rare AEs to aid in decision-making. I share statistics so they can make an informed decision.

Patients and caregivers want to feel confident and assured about their decision, not afraid. I often share with my patients that I get vaccinated to protect myself and others, and I chose the same for my son. It is reassuring to parents to know that I wouldn’t give anything to their child that I wouldn’t give to my own.

The most successful vaccination programs in the past have included mass education efforts, and together we can help defuse fear and distrust. However, no matter how welcome the environment and how sage the advice, there will still be some parents that refuse vaccines. Although your approach to these patients should be the same, the seriousness of their decision to not vaccinate must be communicated. Every pediatric practice should have a policy regarding how these patients are addressed. Some offices may refuse to see these patients because they are a danger to other patients in the waiting room. Others may simply choose to thoroughly document that you’ve educated the patient and recommended vaccines as well as have parents sign a refusal form. Whatever you choose, always approach the patients with care and concern.

What are the current recommendations for HCPs when families refuse vaccines based on personal or religious exemptions?

 To maintain an intact public health infrastructure, routine childhood immunizations are vital, as they provide protection against various infectious diseases not only for immunized individuals but also indirectly to children and adults unable to be immunized via the effect of community immunity. The American Academy of Pediatrics (AAP) supports medically indicated exemptions to specific immunizations as determined for each individual child. Medically indicated reasons include allergy to a vaccine component, previous significant adverse reaction to a vaccine or its components, or other underlying health conditions, such as an immunosuppressed organ transplant recipient. The AAP views nonmedical exemptions to immunizations required by schools as inappropriate for individual, public health, and ethical reasons and advocates for their elimination. The current recommendations vary from state to state, with more than a quarter of states requiring parental notarization or affidavit confirming either a religious or personal belief justification in applying for a nonmedical school immunization exemption. A number of states have laws requiring parent/guardian education by health departments or HCPs on the benefits of vaccines and the risks and consequences of not receiving recommended childhood immunizations. Currently, HCPs have reason based on their practice to allow or not allow families who refuse vaccines to join or remain in their practice.

Because children account for 25% of the US population, which strategies should HCPs implement to improve COVID-19 vaccination rates in children?

 It is crucial that children get vaccinated to achieve herd immunity.

As a sickle cell specialist, our clinic ensures families are aware that sickle cell disease is a condition at risk of worse health outcomes with COVID-19 infection. We assess COVID-19 vaccination status and/or encourage families to get the COVID-19 vaccine during every visit. We provide handouts on COVID-19 infection and the COVID-19 vaccine from credible sources, such as the Centers for Disease Control and Prevention and the Sickle Cell Disease Association of America. We collaborate with the St Petersburg chapter, which is a community-based organization, to have COVID-19 discussions during sickle cell support groups, where we cover the importance of getting the vaccine. HCPs should continue to advocate for the administration of COVID-19 vaccines at their practice because families trust their providers most and already receive childhood vaccines there. HCPs should also work with trusted messengers in the community, such as faith-based leaders, school districts, employers, and nonprofit organizations to build trust and reach vulnerable populations. HCPs should consider sending texts or emails to families encouraging vaccination and sharing resources. The nonprofit organization de Beaumont offers advice on how to talk about vaccinations with your patients.

Vaccine passports and mandatory COVID-19 vaccines are under consideration in the United States—what are your thoughts?

 All 50 states require immunizations for children entering public schools. There are currently no mandatory federal vaccination laws. Therefore, if the COVID-19 vaccine were to become mandatory, it would occur at the individual state level. It is also conceivable that employers and certain industries could require the vaccine, especially in higher-risk areas such as health care, entertainment, and travel.

In regard to vaccine passports, proponents highlight allowance of return to normal activities for those who are vaccinated, economic advantages, and incentive to become vaccinated. On the other hand, opponents worry about privacy concerns in digital formats and that vaccine passports could worsen existing inequities. The World Health Organization recently advised against vaccine passports for this reason. Currently, 2 states, Hawaii and New York, have a digital vaccine passport system, whereas several states have implemented laws banning them. The Biden administration is also investigating vaccine passports.

All HCPs should advocate for equitable vaccine distribution and provide data on vaccine documentation. Further roles remain to be seen because this is an ongoing dynamic.

Best tactics for pediatricians when speaking with patients who resist immunization.

The vaccine-hesitant patient

During the spring, exposure to pollen can trigger a range of symptoms in the nose, eyes, throat, lungs, or skin. Patients may refer to these spring allergy symptoms as hay fever. The classic presentation includes rhinorrhea, nasal congestion, sneezing, and/or nasal itching which are characteristic of allergic rhinitis, or watery itching eyes which are characteristic of allergic conjunctivitis.

 In addition, patients may present with cough secondary to postnasal drip or cough equivalent asthma, as allergens including pollen are common triggers for asthma.

 Finally, patients may present with a sore throat from postnasal drip or oral itching from pollen food allergy syndrome due to cross reactivity between pollen and food.

Patients with spring allergies may have common physical exam findings:

allergic shiners (dark circles around the eyes)

allergic salute (habit of wiping or rubbing the nose)

allergic crease (dark line at the bend of the nose)

rash around the eyes due to rubbing (periorbital atopic dermatitis)

Allergic rhinitis is the most common cause of chronic nasal congestion affecting 7.2% of US children annually. According to a 2014 National Health Interview Survey, 5.2 million children reported hay fever in the past 12 months.

Children with certain risk factors are more likely to have allergic rhinitis. These include a family history of atopy, and other allergic diseases such as asthma and atopic dermatitis.

Allergic rhinitis symptoms can be triggered by one or more allergens. When the body is exposed to a substance it perceives as foreign, such as pollen, it responds by producing specific immunoglobulin E (IgE) antibodies. The antigen or allergen binds to the antibodies that cross link on allergy cells, such as mast cells, releasing chemical mediators such as histamine. Histamine triggers symptoms, including sneezing and a runny, itchy nose.

Temporal classification of allergic rhinitis

There are generally 3 pollen seasons, which vary based on the climate in which the patient lives. Spring is significant for tree pollen, including birch, cedar, cottonwood, and pine. However, in late spring, grasses, such as Timothy, Johnson, and rye, begin to pollinate. Toward the end of summer, ragweed pollen appears and continues into fall, along with outdoor molds. Environmental irritants, among them cigarette smoke, perfumes, diesel exhaust, and cleaning products, can also trigger nasal symptoms.

The diagnosis of allergic rhinitis is largely based on clinical history and physical exam. However, when patients do not improve with over-the-counter medication, the diagnosis is uncertain or the allergic trigger needs to be identified for targeted environmental mitigation, allergy testing is recommended. Specific IgE allergy testing, a blood sample or skin prick, helps aid in the diagnosis of allergies. A diagnostic algorithm for rhinitis is presented in 

The diagnosis of allergic rhinitis accounts for the timing, frequency or duration, and severity of symptoms. Classifying the disease is important to guide its management.

Allergic rhinitis classified by frequency and duration of symptoms is divided into intermittent and persistent. Intermittent allergic rhinitis has symptoms that last for fewer than 4 days per week or 4 weeks per year, whereas persistent allergic rhinitis symptoms last for more than 4 days per week and 4 weeks per year.

Allergic rhinitis classified by severity of symptoms is divided into mild and moderate/severe. Mild allergic rhinitis does not interfere with the patient’s quality of life.

 However, moderate/severe allergic rhinitis has symptoms severe enough to decrease quality of life, such as disordered sleep, impaired daily activities, and missed school and work days.

 Results from recent studies suggest that poorly controlled allergic rhinitis can negatively affect academic performance.

Further, it is important to note that approximately 30% to 50% of patients with chronic rhinitis may have a combination of allergic and nonallergic rhinitis, referred to as mixed rhinitis.

 Timely diagnosis and optimal management of allergic rhinitis is important to prevent complications, such as sinusitis, ear infections, chronic effusion, chronic headache, halitosis, dental problems, and sleep disturbances.

Sometimes it can be hard to tell the difference between allergies and viral illnesses, including coronavirus disease 2019 (COVID-19) infection. Many symptoms, such as nasal congestion, runny nose, cough, and headache, overlap, as illustrated in the National Center for Immunization and Respiratory Diseases’ Venn diagram (

 Therefore, it is crucial to keep COVID-19 infection high on the differential and to consider testing the patient.

Managing allergic rhinitis and environmental allergies involves a 2-fold approach: pharmacologic therapies and environmental mitigation strategies. As exposure to allergens in sensitized individuals promotes inflammation, using medications to treat symptoms and mitigating exposure to allergens are very important. For treatment of seasonal allergy symptoms, initiating treatment with intranasal steroids and/or oral antihistamines is recommended 1 to 2 weeks prior to the start of the season; this should be continued throughout the season. The primary treatment for allergic rhinitis is intranasal steroids. However, they may not be tolerated in young children. Long-acting, nonsedating oral antihistamines (cetirizine, levocetirizine, fexofenadine, or loratadine) may be used in combination with or without intranasal steroids.

 An antihistamine or mast cell stabilizer eye drops, such as olopatadine or inhaled corticosteroids, are the mainstay of treatment for allergic asthma but therapy may need to be adjusted as outlined in the National Institutes of Health’s National Asthma Education and Prevention Program guidelines.

 Treatment of pollen food allergy syndrome entails avoiding the “fresh” form of culprit food(s) referenced in 

, or other strategies such as peeling the skin or eating the cooked version. These strategies are typically tolerated.

NATURAL REMEDIES AND COMPLEMENTARY AND ALTERNATIVE MEDICINE

Many patients inquire about the use of natural remedies in the treatment of allergic rhinitis and allergic conjunctivitis. Rinsing the nasal passages with over-the-counter saline in a squeeze bottle or a neti pot, for example, can be effective as a means of washing away the allergens and mucus to help reduce symptoms. Using humidifiers to treat nasal congestion is generally not recommended because it creates an environment which promotes the proliferation of dust mites and molds. Acupuncture has not been commonly used in the pediatric population, but findings from small studies suggest it may be beneficial in the treatment of allergic rhinitis.

 Natural remedies for the treatment of allergic conjunctivitis include applying a cold compress to the eyes or using refrigerated artificial tears to remove allergens.

The majority of individuals with allergy symptoms are allergic to more than one allergen. Exposure to allergens should be minimized because there is a symptom threshold and reducing exposure lowers the risk of symptom exacerbation. For example, a patient may be sensitized to dust mites, mold, and animal dander with minimal symptoms year-round; however, in spring, exposure to birch pollen may cause exacerbations because they have reached their symptom threshold due to cumulative exposure to allergens and tree pollen, and thus “tip them over the edge.”

Pollens are microscopic and may be deposited on skin, hair, and clothing. Therefore, showering after coming in from outdoors is recommended. Trees tend to release the most pollen from 5 am to 9 am. Therefore, trying to minimize outdoor activities during the early morning hours may be helpful. Keeping windows closed in the car and home and wearing a mask with a small particle filter can also reduce pollen exposure. 

 lists environmental mitigation strategies for common environmental allergens.

Subcutaneous and sublingual are 2 types of immunotherapy available for aeroallergens. Subcutaneous immunotherapy works by introducing small amounts of allergen(s) in escalating doses until a maintenance dose is reached that helps to desensitize allergy cells. Typically, the patient receives a maintenance dose monthly for 3 to 5 years under the supervision of a physician. In recent years, there have been few new allergy medications. In 2014, sublingual immunotherapy tablets were approved for grass (ages 5-65 years) and ragweed (ages 18-65 years) pollens. In 2017, a dust mite sublingual tablet was approved for use in adults.

Sublingual tablets are not widely used in the pediatric population. One major barrier is the limited insurance coverage for these tablets. However, sublingual tablets may be used more frequently in the future as more children are formally diagnosed with common environmental allergens based on clinical history and confirmed with (blood sample or skin prick) allergy testing, and a more convenient home-based form of immunotherapy is desired.

If the patient does not improve with over-the-counter medications and there is evidence of sensitization to common environmental allergens on testing, consider referring to them to an allergist.1 Additionally, for patients who are atopic, a referral to an allergist to determine whether they are a candidate for allergen immunotherapy may be beneficial. Allergen immunotherapy is approved for the treatment of allergic rhinitis and asthma. For atopic patients with allergic rhinitis without preexisting asthma, subcutaneous allergen immunotherapy is indicated for the primary prevention of asthma.

Spring allergies are common in the pediatric population. Recognizing signs or symptoms, classifying the disease and implementing a 2-fold management approach is key to quality of life for patients. Although pediatricians manage most cases of allergic rhinitis in children, knowing when to refer to an allergist is important.

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It’s springtime, which means flowers are blooming and children sneezing. Here’s a quick refresher on seasonal allergy diagnoses and prescriptions.

Candice Jones, MD, FAAP

Articles

Helping children grieve the loss of a caregiver due to COVID-19

The vaccine-hesitant patient

Seasonal allergies: What every pediatrician needs to know