The Toll of COVID-2019 on Diverse, Urban Children With Attention Deficit Hyperactivity Disorder and Their Families: A Case Series

Introduction

The COVID-19 pandemic has disproportionately affected families from racial and ethnic minority and economically disadvantaged backgrounds,^1,2 who are more likely to experience crowded living conditions, hold essential jobs, have underlying health conditions, and face barriers to accessing health care.³ Children from these households are further burdened by less access to technology and support for online learning, reduced physical activity, and higher rates of food insecurity.^4,5

Children from socioeconomically disadvantaged backgrounds with neurodevelopmental disabilities such as attention-deficit/hyperactivity disorder (ADHD) may experience even more dramatic hardship during the pandemic. Children with ADHD often require special supports for learning (e.g., Individualized Education Programs) that are not available at home. Their symptoms may pose a challenge for social distancing guidelines and, thus, a safe return to in-person school.⁶ Lack of structure and physical activity, excessive screen time, fear, and stress could heighten emotional and behavioral problems, particularly for children with ADHD.^7,8

To better understand the impact of the pandemic on diverse children with ADHD from socioeconomically disadvantaged backgrounds, we conducted a case series including 19 children with ADHD and their parents, recruited from treatment settings at an urban safety net hospital.

Methods

Study Design and Participants

Participants were parents of children and adolescents diagnosed with ADHD who previously enrolled in a qualitative study on engagement in ADHD care⁹ and who were recruited for the original study between June 2018 and October 2019 from pediatric outpatient treatment settings at Boston Medical Center, an urban safety net hospital. The initial and new studies were approved by our institutional review board. Research assistants fluent in English, Spanish, and Haitian Creole attempted to reach all 40 participants from the original study who had agreed to be recontacted for new research opportunities. In all, 19 parents (48%) agreed to participate in the new study and completed the surveys in their preferred language, either via an electronic link to the secure HIPAA (Health Insurance Portability and Accountability Act)–compliant research electronic data capture system (REDCap)¹⁰ or over the phone if requested by the parent. Data were collected between May and September 2020.

Data Collection Measures

Sociodemographic Characteristics.

Parents completed a sociodemographic questionnaire with items relating to employment, unmet basic needs, and health insurance from the 2016 National Survey of Children’s Health.¹¹ Fixed demographic information (eg, ethnicity, race, country of birth) from the original study was not re-collected.

Child Psychiatric Symptoms.

Parents completed items on how COVID-19 and social distancing affected their child’s symptoms, and on how their child’s symptoms affected their COVID-19 risk.

Treatment Utilization.

We surveyed parents about their child’s treatment for ADHD both before and during the pandemic, and about their child’s access to healthcare during the pandemic.

COVID-19 Impact Questionnaire.

We used new items developed by expert consensus for a different, longitudinal study by the same author team on child mental health during COVID. (Spencer et al.,)¹² Items assessed the child’s COVID-19 knowledge, exposure to sickness and death, school participation, media use/screen time, and caregiver burden.

Data Analysis.

We generated descriptive statistics for all variables. Frequencies (%) and means were computed using Statistical Analysis Systems software Version 9.4.¹³ Three research team members rapid coded open-ended survey responses.

Results

Sample Characteristics

Parents were 94% female and identified as Hispanic/Latinx (37%), Black (26%), White (21%), Haitian (16%), or American Indian (11%). Median income was $20 000, and most children (58%) had public health insurance. Parent and child demographics are shown in Tables 1 and 2.

Table 1.

Parent Demographic Characteristics.

	N = 19
Parent’s age in years, mean ± SD	41.9 ± 7.9
Parent’s sex, n (%)
Male	1 (5%)
Female	18 (95%)
Parent’s race, n (%)
White/Caucasian	4 (21%)
Black or African American	5 (26%)
Haitian	3 (16%)
Native American/Alaskan Native	2 (11%)
Hispanic, Latinx, or Spanish origin	7 (37%)
Mexican	3 (16%)
Puerto Rican	3 (16%)
Other Spanish culture	1 (5%)
Marital status, n (%)
Married or living with a partner	11 (58%)
Divorced or separated	2 (11%)
Never married	6 (32%)
Primary language spoken at home, n (%)
English	12 (63%)
Spanish	5 (26%)
Haitian Creole	2 (11%)
Parent’s birthplace, n (%)
In the United States	10 (53%)
Outside the United States	9 (47%)
Bulgaria	1 (5%)
Dominican Republic	1 (5%)
Haiti	2 (11%)
Mexico	3 (16%)
Puerto Rico	2 (11%)
Parent’s education level, n (%)
Less than high school degree	5 (26%)
High school degree/GED	6 (32%)
Postsecondary education	5 (26%)
College degree or higher	3 (16%)
Employed at least 50 out of 52 weeks, n (%)	8 (42%)
Household income, median (range)	$20000 ($3000 to $98000)

Abbreviation: GED, general equivalency diploma.

Table 2.

Child Demographic and Clinical Characteristics.

	N = 19
Sex, n (%)
Male	14 (74%)
Female	5 (26%)
Age (years), mean ± SD	10.6 ± 2.7
Ethnicity, n (%)
Hispanic, Latino, or Spanish origin	7 (37%)
Not Hispanic, Latino, or Spanish origin	12 (63%)
Race, n (%)
Black/African American	10 (53%)
White/Caucasian	3 (16%)
Native American/Alaskan Native	1 (5%)
Other race	4 (21%)
More than 1 race	3 (16%)
Health insurance, n (%)
Public	11 (58%)
Commercial/private/other	8 (42%)
Other psychiatric conditions, n (%)
Behavioral or conduct problem	8 (42%)
Depression or anxiety	7 (37%)
Any other mental health condition	1 (5%)
Other developmental conditions, n (%)
Speech or other language	6 (32%)
Learning disabilities	4 (21%)
Developmental delay	5 (26%)
Medical conditions, n (%)
Asthma	9 (47%)
Allergies	7 (37%)
Epilepsy/seizures	2 (11%)
Frequent headaches, including migraine	1 (5%)
Treatment history, n (%)
Ever taken medication for ADHD	19 (100%)
Taking medication for ADHD at pre-pandemic baseline	17 (89%)
Ever received therapy	16 (84%)
Currently has special school services (504 or IEP)	17 (89%)
Repeated a grade, n (%)	3 (16%)

Abbreviation: ADHD, attention deficit hyperactivity disorder.

Child Symptoms During the Pandemic

More than half of the parents (58%) reported that their child’s ADHD symptoms had worsened since the pandemic began, versus remained the same (32%) or improved (5%), with one parent not answering. Most parents (63%) feared that their child’s ADHD symptoms would heighten their risk of contracting COVID-19.

Caregiver Burden During the Pandemic

Almost all parents (95%) reported more difficulty caring for their child during the pandemic because of difficulties with remote school (9), not being able to take their child outside (7), exacerbated behavioral symptoms (6), disrupted routine (1), and financial difficulties (1).

Job Loss and Financial Hardship

Most parents (74%) were not currently employed. More than half (53%) reported a change in employment as a result of COVID-19, including switch to remote work (3) and losing work (7). The 7 parents (37%) not working as a result of COVID-19 were laid off or furloughed (2), had left their job to take care of their children (2) or for health reasons (1), had experienced workplace closure (1), or had delayed job training (1). Most families (68%) reported difficulties getting by on the family’s income during the pandemic.

Child Exposure to COVID-19

Nearly half of the children (47%) knew at least 1 person who had contracted COVID-19. Two children (11%) knew someone who had died of COVID-19.

Child Knowledge of COVID-19

Almost all parents reported that their child knew at least basic information about COVID-19 (89%) and understood the reason for school closures (95%). Most parents (58%) reported that their child was scared or worried about COVID-19.

Almost all parents (95%) were the primary source of information about COVID-19 for their children and most often (58%) turned to their child’s therapist for guidance on talking to their child about COVID-19. Most parents felt somewhat or very prepared to answer their child’s questions (84%) and reported that their child learned hand-washing principles (79%).

Treatment Access

No parent reported an unmet need for child mental health care during the pandemic. Two parents (11%) reported unmet need for dental care and one for medical care. Nearly all children (84%) continued to receive services for ADHD during the pandemic, all provided virtually. Parents discontinued treatment because of difficulty seeing the doctor (2) and engaging children in virtual appointments (1). All children were taking ADHD medications before the pandemic, but only 68% were taking medications during the pandemic.

School Participation

Nearly all parents (84%) reported that COVID-19 had interfered with their child’s learning as a result of disrupted routine (11), lack of special education supports (9), peer interaction (6), individual attention (5), teacher accessibility (4), or difficulty with technology (4). More than one-fifth (21%) of children had not continued any form of academic learning since March 2020. No parents reported that their children were learning better than before school closures.

Media Use

Most parents (79%) reported that their children engaged in increased screen time during the pandemic and that they imposed screen time restrictions (58%). Most children (53%) had spent < 1 hour in front of a screen for school-related activities (including synchronous online learning) in the past week. However, the majority (63%) had spent at least 3 hours using screens for nonacademic purposes in the past week, most commonly playing interactive video games.

Discussion

We present 19 cases of children with ADHD during the COVID-19 pandemic. Most parents reported increased caregiver burden, worse child ADHD symptoms, increased screen time, difficulty with remote school, and more unmet basic needs during the pandemic. Parents cited loss of daily routine, lack of social interaction, and lack of access to individualized educational supports as key stressors. The American Psychological Association also found that managing online learning was a primary source of stress for 71% of parents during the COVID-19 pandemic.¹⁴ Parents also worried that their child’s ADHD symptoms put their family at higher risk of exposure to the virus. In fact, one study did show an increased rate of COVID-19 infection among individuals with ADHD compared with those without.¹⁵

Reduced medication adherence may explain some of the reported increases in symptoms as well as worry about infection risk resulting from active ADHD symptoms and difficulty engaging in remote school. Although nearly all children in our sample continued to receive some mental health services during the pandemic, there was a 32% drop in ADHD medication use. Maintaining consistent ADHD treatment could be a point for intervention now and in future pandemics with families of children with ADHD. In addition, child therapists were an important source of support for families in talking to their kids about COVID-19, showcasing the unique role that child mental health professionals have played throughout the pandemic.

The high rates of difficulty meeting basic needs and job loss in our sample are consistent with national surveys.¹⁶ Some parents reported being unable to work because of their child’s educational needs, illustrating the impact of prolonged school closures on family income. Poverty and unmet basic needs are associated with worse mental and physical health¹⁷ and may be a factor in worsening caregiver burden and child symptoms during the pandemic. Increased child screen time—reported by almost all parents—is also associated with worse child cognitive, physical, and mental health outcomes and may be particularly concerning for children with ADHD.¹⁸

Our case series is limited by a small sample size as well as reporting bias inherent to self-report surveys. We recruited from 1 urban safety-net hospital, limiting generalizability to other settings and populations, and some of our findings could be related to factors other than the pandemic.

Despite these limitations, we have illuminated the challenges faced by racial and ethnic minority children with ADHD from lower-income families during the COVID-19 pandemic. Future research should evaluate the long-term impact of the pandemic on children with ADHD, and enhanced support for these families may be needed to overcome ongoing challenges.