Caregiver Experiences Managing Persistent Childhood Asthma During the COVID-19 Pandemic

Abstract

COVID-19 has adversely affected child wellness, but it is unclear whether the pandemic led to changes in home management of chronic diseases like asthma. We surveyed 93 caregivers of children with persistent asthma from 2 ongoing asthma trials to measure changes in home asthma management, stressors, access to health care, and caregivers’ worry about COVID-19 affecting their child’s health. We conducted descriptive analyses, and assessed whether caregiver worry about COVID-19 was associated with asthma management, stressors, health care access, or recent symptoms. Most (80%) caregivers worried that COVID-19 would affect their child’s health, and >50% restricted their child’s physical activity to avoid asthma symptoms. We observed a dose-dependent relationship between increasing worry about COVID-19 and activity restrictions, financial hardship, difficulty obtaining asthma medications, and nocturnal asthma symptoms. These findings raise concern that children with persistent asthma may be at particular risk for weight gain and obesity-associated asthma morbidity due to the pandemic.

Introduction

The COVID-19 pandemic has led to considerable changes in the structure of daily life among children over the past year, including how they attend school, interact with peers, obtain health care, and engage in physical activity. A growing body of work has demonstrated the negative impact of the pandemic on several domains of child wellness, including poor mental health, weight gain, and missed immunizations.^1–3 It is unclear whether the pandemic has similarly affected the care of children with chronic pediatric diseases like asthma, or whether it has led to changes in the home management of these conditions.

Soon after the World Health Organization declared the COVID-19 global pandemic in March 2020, the US Centers for Disease Control and Prevention (CDC) identified asthma as a probable risk factor for severe COVID-19 infections.⁴ Fortunately, multiple studies conducted over the past year have demonstrated that patients with asthma are at no greater risk for severe disease, hospitalization, or death from COVID-19.^5–7 Some patients with asthma may be at lower risk of infection, as the expression of angiotensin-converting enzyme 2 (ACE2) receptors used by the SARS-CoV-2 (severe acute respiratory syndrome coronavirus 2) virus to enter lung cells is decreased in eosinophilic asthma.^8,9 In fact, the use of pediatric acute health care services for asthma such as emergency department visits and hospitalizations was markedly lower throughout the 2020 calendar year, and the annual spike of asthma symptoms and related health care use during the fall season did not materialize.^10,11

However, initial public messaging on COVID-19 as a respiratory condition likely contributed to family concerns about loved ones with asthma. Additionally, COVID-19 mortality has been disproportionately high among Black and Hispanic populations as a result of health care inequities and increased rates of chronic illness.¹² As guidelines and new evidence evolve over the course of the pandemic, caregiver attitudes or fears may not change as rapidly. This moment in time provides a unique opportunity to examine the influence of pandemic-related concerns on caregiver management of childhood asthma, and identify any barriers to health care or home care that may need to be addressed as vaccination rates increase and society gradually reopens.

The objectives of this study were to examine the influence of the COVID-19 pandemic on families of children with persistent asthma, including pandemic-related life stressors, caregiver concerns about asthma, and any changes to home asthma management practices associated with caregiver concerns. We hypothesized that COVID-19 recommendations to stay at home would affect asthma symptoms due to children’s prolonged exposure to home asthma triggers including but not limited to tobacco smoke, mold, dust, and other indoor environmental allergens. Additionally, we suspected that caregivers would report additional home life stressors and experience difficulties obtaining care or asthma medications for their children due to the pandemic, and that these factors would inform changes in home management of their child’s asthma.

Methods

We surveyed a convenience sample of caregivers whose children were currently enrolled in either of 2 randomized trials of telemedicine-enhanced care for uncontrolled persistent asthma in Rochester, NY: Telemedicine Enhanced Asthma Management–Uniting Providers (TEAM-UP), and Telemedicine Enhanced Asthma Management through the Emergency Department (TEAM-ED). TEAM-UP eligibility criteria include ages 4 to 12 years, previously diagnosed asthma, and moderate-severe persistent asthma symptoms in the past month as defined by National Heart, Lung and Blood Institute (NHLBI) guidelines. TEAM-ED eligibility criteria include ages 3 to 12 years, previously diagnosed asthma, presentation to 1 of 2 participating emergency departments for an acute exacerbation, and persistent asthma symptoms in the past month as defined by NHLBI criteria. Both studies have exclusionary criteria that require access to a telephone for study follow-ups, that the child and family live within the city of Rochester, and that the child and caregiver can speak English. Caregivers in TEAM-UP are asked to complete study follow-ups at 3 months, 5 months, 7 months, and 12 months following baseline. TEAM-ED has follow-up surveys at 3 months, 6 months, 9 months, and 12 months. Both randomized trials and the supplemental survey questions included in this study were approved by our university’s institutional review board.

During planned telephone follow-up assessments completed between April and November 2020, research assistants blinded to group allocation asked caregivers to complete an additional survey about the influence of the COVID-19 pandemic on their family and home asthma management. The COVID-19 survey was placed at the end of a routine follow-up, and caregivers were given a choice to participate in the survey as well as decline to answer any individual questions. No additional compensation was provided for completing the COVID-19 questions. The study team developed novel survey questions to measure the impact of COVID-19 on families of children with asthma. These questions were intended to assess a variety of social factors, such as barriers to accessing medications or health care, and additional financial or home life stressors including loss of job, or ability to complete schoolwork at home, that may have been altered due to the pandemic and have relevance to home asthma management.

Caregivers identified their level of worry about COVID-19 affecting their child’s asthma (4-point scale: “not worried at all” to “extremely worried”), and reported on whether they had made changes to home management including the following: new restrictions on their child’s physical activity to prevent symptoms and a need for health care; increased or decreased adherence with controller medication; or medication sharing with other family members diagnosed with asthma. We asked whether families had experienced specific life stressors since the pandemic began (yes/no), including new financial hardship, loss of a job, risk of housing instability or food insecurity, or ability for children to complete schoolwork. For each life stressor, we asked families to assign a difficulty rating (4-point scale: “not difficult” to “extremely difficult”). Caregivers also responded to questions about experiences accessing health care (whether and how care was accessed, or reasons for not accessing care), and whether accessing medications for their child during the pandemic had been easier or more difficult (5-point scale: “a lot easier” to “a lot more difficult,” with an option for “about the same”). We collected information on patient demographics and randomized group allocation from the baseline visit, and caregiver-reported asthma symptoms (such as days without asthma symptoms, nights with asthma symptoms, and days using a rescue medication for asthma symptoms in the past 2 weeks) from earlier questions in the follow-up phone assessment. For any caregivers completing >1 follow-up assessment during the study period, we excluded duplicate responses to the COVID-19 survey after the questionnaire was first completed.

To compare categorical variables such as activity limitations, difficulty obtaining rescue or preventive medications, and additional stressors as a result of the pandemic with caregivers’ level of worry about COVID-19 affecting the health of their child, responses were dichotomized into affirmative or negative categories (ie, “strongly agree/agree” vs “strongly disagree/disagree,” “somewhat/a lot easier” vs “somewhat/a lot more difficult,” “not difficult” vs “somewhat/very/extremely difficult,” and “not worried” vs “somewhat/very/extremely worried”). We used descriptive statistics to characterize the sample, including percent, mean, and standard deviations. We assessed whether caregiver worry about COVID-19 was associated with asthma management behaviors, financial stressors, health care access, or recent symptoms using χ² and 1-way analysis of variance tests for categorical and continuous predictor variables, respectively. Finally, we compared any changes in home management with commonly reported stressors, barriers to accessing care or medications, and recent symptoms. A 2-sided α < .05 was considered statistically significant. All analyses were performed using SPSS software (version 26).¹³

Results

Over a 7-month period, caregivers responded to some or all of the COVID-19 questions in 133 of 306 completed follow-up assessments. After omitting duplicate responses from caregivers who completed the survey more than once, 93 unique caregiver responses were included in analysis. The average age of participating children was 7.5 years (2.6), 84% were Black or Hispanic, 56% were male, and 73% of caregivers had at least a high school education (Table 1). At the time of the survey, caregivers reported an average of 11.3 symptom-free days over the previous 2 weeks. Forty-three percent of respondents were enrolled in TEAM-ED, while 57% were enrolled in TEAM-UP, and 55% were randomized to an active intervention group across both studies.

Table 1.

Patient and Family Characteristics (N = 93).

Child age (years)	7.5 (2.6)
Child race (Black)	46 (49%)
Child ethnicity (Hispanic)	33 (35%)
Child sex (male)	52 (56%)
Caregiver education (high school or higher)	68 (73%)
Family history of asthma	82 (88%)
RCT that child is enrolled in
TEAM-ED	40 (43%)
TEAM-UP	53 (57%)
Randomized to an active treatment group (years)	51 (55%)
Recent asthma symptoms (past 14 days)
Symptom-free days	11.3 (4.5)
Days with symptoms	2.3 (4.2)
Nights with symptoms	1.1 (3.1)
Days with SABA use	2.1 (3.9)

Abbreviations: RCT, randomized controlled trial; TEAM-ED, Telemedicine Enhanced Asthma Management through the Emergency Department; TEAM-UP, Telemedicine Enhanced Asthma Management–Uniting Providers; SABA, short-acting β agonists.

Most caregivers (80%) worried that COVID-19 would negatively affect the health of their child with asthma, including 50% who were very worried or extremely worried (Table 2). A majority of respondents (59%) agreed that they had imposed additional restrictions on their child’s physical activity due to the pandemic, in order to avoid asthma symptoms and potential need for acute medical care (Table 2). One quarter of caregivers endorsed their child taking preventive medications more consistently since the pandemic began; few were sharing asthma medications (10%), and only one caregiver stated their child was taking fewer doses of controller medication so it would last longer.

Table 2.

Caregiver Worries About COVID-19 and Changes to Home Asthma Management.

Caregiver worry about COVID-19 affecting the health of their child with asthmaa	(N = 88)
Not worried at all	18 (20%)
Somewhat worried	27 (31%)
Very worried	21 (24%)
Extremely worried	23 (26%)
Changes in home asthma managementa	(N = 88)b
New restrictions on physical activity to prevent symptoms, possible trip to the doctor	52 (59%)
Child is taking preventive medication more consistently	21 (25%)
Family sharing asthma medications	9 (10%)
Child is taking fewer preventive medication doses so that it will last longer	1 (1%)

^aCaregivers selected responses from a 5-point scale (range: strongly agree to strongly disagree); displaying combined results for strongly agree/agree categories.

^bFor questions involving preventive medication, N = 84.

One third of caregivers experienced additional financial hardship due to the pandemic, and 24% reported that they (or someone else in their home) lost their job (Table 3). Most caregivers had enough necessities at home like food and toiletries (92%), and half of caregivers accessed free meals for school-aged children provided by the school district and neighborhood community centers. Loss of stable housing was reported by 1 caregiver. Nearly all families agreed that their children could complete school work from home (97%), and that they had an internet-compatible device at home for their children to complete school work (91%). However, 72% of families stated that their family was experiencing difficulty with virtual school work.

Table 3.

Home/Life Stressors, Accessing Health Care, and Obtaining Medications During the COVID-19 Pandemic.

Home/life stressors	(N = 90)
Family experiencing additional financial hardship	30 (33%)
Caregiver/someone living in the home lost a job (N = 89)	22 (24%)
Family lacks sufficient food and necessities (eg, soap, toilet paper)	7 (8%)
Caregiver worried about losing housing	6 (7%)
Family lost housing (N = 89)	1 (1%)
Family taking advantage of free meals through school	45 (50%)
Children unable to complete schoolwork from home	3 (3%)
Children have a device to complete schoolwork at home	82 (91%)
Family experiencing difficulty with virtual schoolwork	65 (72%)
Accessing health care	(N = 88)
Caregiver accessed health care for their child (all causes):	57 (65%)
In-person at a primary care office	23 (26%)
Telephone conference call (no video)	12 (14%)
Telemedicine video conference	16 (18%)
Emergency room visit	6 (7%)
Urgent care visit	4 (5%)
Hospitalization	1 (1%)
Caregiver did not access health care for their child:	31 (35%)
Child did not need a health care visit	28 (32%)
PCP office cancelled or postponed nonurgent visits	11 (13%)
Caregiver too worried to go to an in-person visit	2 (2%)
Child health insurance no longer active	0 (0%)
Difficulty obtaining medicationsa
Rescue asthma medications (N = 84)	17 (20%)
Preventive asthma medications (N = 78)	15 (19%)
Spacers for inhalers (N = 55)	9 (16%)
Allergy medications (oral, nasal; n = 59)	11 (19%)
Allergy immunizations (n = 16)	2 (13%)

Abbreviation: PCP, primary care physician.

^aCaregivers selected responses from a 5-point scale (a lot easier to a lot more difficult), or could choose “not applicable” (removed from analysis). Combined responses for “somewhat more difficult” and “a lot more difficult” are shown.

Most caregivers did not experience barriers to accessing health care during the pandemic: 65% accessed necessary care for their child (40% in-person, 49% via telemedicine), while 32% reported that their child did not need any health care visits (Table 3). One third of caregivers who did not access child health care services during the pandemic acknowledged that the child’s doctor’s office had cancelled or postponed all nonurgent visits; 2 caregivers did not attempt to access needed health care services for their child due to concerns about contracting COVID-19 during an in-person visit. Similarly, most caregivers reported no difference in their ability to obtain rescue and controller asthma medications, spacer devices for inhalers, allergy medications, allergy shots, and over-the-counter pain relievers. Approximately 20% of caregivers experienced increased difficulty when trying to obtain either rescue or controller asthma medications.

We observed a dose-dependent relationship between increasing caregiver worry about COVID-19 and new restrictions on physical activity, pandemic-related financial hardship, difficulty with obtaining asthma medications, and increasing nocturnal asthma symptoms (Table 4). Caregivers who worried about COVID-19 adversely affecting the health of their child with asthma were more likely to restrict their child’s physical activity than those who were not worried about COVID-19. As the level of caregiver worry increased, so did the percentage of caregivers who reported restricting activity: 44% of caregivers who were not worried imposed new activity limits on their child, compared with 54%, 62%, and 74% of caregivers who were somewhat, very, or extremely worried, respectively (P = .046). We observed similar relationships between increasing level of caregiver worry and reported difficulty obtaining rescue (P = .002) and controller (P = .001) asthma medications, new financial hardship due to COVID-19 (P = .029), and more nights with asthma symptoms in the past 14 days (P = .038). Finally, we compared new restrictions on child physical activity with pandemic-related financial hardship, barriers to accessing medication, and recent asthma symptoms; no significant associations were observed (data not shown).

Table 4.

Caregiver Worry About COVID-19 Affecting the Health of Their Child With Asthma (Bivariate Analyses).

	Not worried at all	Somewhat worried	Very worried	Extremely worried	P (trend)
Activity restriction to prevent asthma symptoms (N = 88)
Strongly agree/agree	8 (44%)	14 (54%)	13 (62%)	17 (74%)	.046
Difficulty obtaining rescue medication (N = 83)
Somewhat or a lot more difficult	0 (0%)	3 (13%)	6 (30%)	8 (36%)	.002
Difficulty obtaining controller medication (N = 77)
Somewhat or a lot more difficult	0 (0%)	2 (9%)	5 (28%)	8 (38%)	.001
Financial hardship due to COVID-19 crisis (N = 88)	3 (17%)	7 (27%)	7 (33%)	11 (48%)	.029
Symptoms (past 14 days), (N = 88)
Symptom-free days	12.0 (4.4)	12.4 (2.6)	11.0 (5.2)	10.0 (5.0)	.247
Days with symptoms	1.7 (4.0)	1.2 (2.0)	2.9 (5.1)	3.3 (4.6)	.254
Nights with symptoms	0.3 (0.8)	0.3 (0.7)	1.0 (3.2)	2.4 (4.2)	.038
Rescue medication use	1.2 (3.3)	1.2 (2.0)	2.2 (4.4)	3.3 (4.8)	.166

Discussion

Despite reassuring epidemiological data that do not support asthma as a risk factor for severe COVID-19 infections, we found that most caregivers of children with persistent asthma were concerned that the pandemic would negatively affect their child’s asthma. This result is consistent with recent online studies of adult patients with asthma, many of whom experienced anxiety over COVID-19 affecting their asthma^14,15 and perceived themselves as taking more caution in the pandemic compared with others without asthma.¹⁵

More than half of the caregivers in this study restricted their child’s participation in physical activity with a goal of preventing asthma symptoms and the need for acute asthma-related health care. It was notable that activity restrictions were not independently associated with other COVID-19-related financial stressors, difficulty with obtaining asthma medications, or recent symptoms. Public health measures introduced in response to the pandemic, including recommendations to stay home and the closure of schools and parks, have led to increases in sedentary behavior and recreational screen time use among children.^16,17 Partially as a result of these behavioral changes, in combination with changes to diet and access to food, the pandemic has led to increases in overweight and obesity among children.^18–20 The dose-dependent association we found between increasing caregiver worry and additional restrictions on physical activity in this study raises a concern that children with persistent asthma may be at particular risk for sedentary behavior, excess weight gain, and subsequent obesity-related asthma morbidity. Additional studies exploring longitudinal body mass index changes during the pandemic among children with and without chronic respiratory diseases are indicated.

There are particular circumstances to consider for this group of children that may pertain to increased worry about COVID-19 affecting childhood asthma. Of note, the majority of our sample self-identified as Black or Hispanic ethnicity, populations that have experienced worse COVID-19 outcomes in many parts of the United States¹² and have historically suffered from higher asthma morbidity.^21,22 This information, in conjunction with data we found regarding increased financial stressors and a majority of caregivers experiencing difficulty with online schooling, may help contextualize the elevated levels of worry about child health reported by caregivers.

There are some limitations to consider for this descriptive work. With a relatively small sample, this analysis was not powered for robust statistical comparisons, and we were not able to identify significant differences among some responses. While a few caregivers completed the COVID-19 survey at more than 1 follow-up, many only responded to these questions once. As a result, we are unable to determine whether individual responses varied over time as we moved through the pandemic. It is possible that the dynamic nature of the COVID-19 pandemic could have influenced caregiver’s responses or attitudes over time. We included a convenience sampling of caregivers who were actively participating in a randomized trial of asthma care; therefore, our findings may not be generalizable, as participation in a study may signal greater concern among caregivers about their child’s asthma at baseline. Additionally, since the trials are ongoing, we did not compare caregivers’ responses between study or intervention group within the 2 independent studies, so it is possible that the families’ study group status may have affected their interaction with providers through telehealth, ability to access prescription medications, or overall perception of health care.

Conclusion

Caregivers reported a variety of challenges posed by the COVID-19 pandemic related to social factors, access to health care, and fears/worries about the health of their children with persistent asthma. As caregivers reported an increase in worry about COVID-19 affecting their child’s asthma, they were more likely to limit their child’s physical activity in order to avoid symptoms and the need for health care. Limitations on physical activity related to fear of exacerbating asthma symptoms may contribute to obesity as well as obesity-related asthma morbidity. During health care encounters, it is important to address caregiver concerns, evaluate appropriate preventive asthma treatment, and encourage healthy physical activity to ensure optimal health and well-being of children with asthma, despite the current pandemic.