Abstract
Objective:
Previously the epicenter of the COVID-19 pandemic in New York, the Bronx has one of the highest prevalence rates of pediatric asthma in the United States. Pandemic mitigation efforts altered asthma management practices in at-home and clinical settings. We were interested in identifying family caregiver-reported barriers to asthma management during the COVID-19 pandemic to optimize care for Bronx children with asthma.
Methods:
To explore family caregiver perspectives about asthma management and resources needed during the COVID-19 pandemic, we conducted qualitative interviews with caregivers of children with asthma receiving care at 9 clinics in the Bronx. Caregivers were asked via telephone about the COVID-19 pandemic and how it affected the family and child’s asthma management. Child demographic characteristics and asthma status were obtained from medical records and survey data. Interview notes were independently coded for common themes. Investigators agreed on emerging themes.
Results:
61 caregivers participated (95% female). Nearly half of caregivers reported improvement in child’s asthma due to stay-at-home orders and decreased outdoor trigger exposure. Many experienced challenges accessing medical care during the pandemic.
Some children were exposed to indoor triggers like secondhand smoke. Caregivers also reported challenges finding opportunities for physical activity and challenges associated with caregiver and child mental health.
Conclusions:
Caregivers experienced improved asthma management because of the pandemic. However, inconsistent access to care demonstrates the need for continuity of medical care and careful planning for any future stay-at-home orders.
Keywords: Urban, child and adolescent health, caregiver, SARS-CoV-2 virus, barriers, asthma care
Background
The Bronx has one of the highest prevalence rates of pediatric asthma in the United States (1). Currently, up to 25% of Bronx children have been diagnosed with asthma (1). Historically, asthma in the Bronx has disproportionately impacted children with barriers to accessing quality medical care (2). Bronx children who live in dense urban environments and older buildings are more likely to experience asthma (3), and the Bronx has the highest asthma mortality of all boroughs (4). During the COVID-19 pandemic, the Bronx had the highest pandemic-related mortality and morbidity in New York City (5). Barriers to accessing care and government-led stay-at-home orders altered asthma management practices in both at-home and clinical settings (6). In New York City, patients with asthma who had public health insurance had greater barriers to accessing care in comparison to those with private insurance, including fewer options for social distancing and increased exposure to indoor environmental triggers (7).
Children with asthma had reduced healthcare utilization and improved overall control during the pandemic, in part due to reduced exposure to outdoor allergic triggers (8) and reduced spread of upper respiratory tract viral infections (9) related to masking and school closures. Other studies of the effect of the pandemic on asthma management have documented changes in practices related to medication adherence among parents of children with asthma (10). Ferraro et al. (10) found that some patients stepped up asthma medications on their own during the pandemic, possibly due to increased symptoms or due to a fear that hospital resources would have been more difficult to access in the event of a severe exacerbation. They also found that some patients stepped down medications, possibly due to improved asthma control.
Several studies explored parental or caregiver perspectives on caring for children with medical complexity during the pandemic. Pitch et al (11) found that families caring for medically complex children experienced challenges related to continuity of medical care and high mental health burden for caregivers. Diskin et al (12) found similar results, including gaps in continuity of care. There is limited literature examining caregiver perspectives relevant to asthma during the pandemic. One study among Japanese parents of children with asthma found that families experienced improved asthma control and adherence (13). However, families who participated in this study experienced different pandemic management practices and healthcare access than caregivers in other countries and in the United States overall.
Given the specific barriers faced by families of children with asthma in the Bronx, we were interested in identifying caregiver-reported barriers to asthma management during the COVID-19 pandemic to optimize care for Bronx children with asthma. Thus, the aim of the study was to explore caregiver perspectives about asthma management and resources needed during the COVID-19 pandemic.
Methods:
We conducted individual interviews with family caregivers of children with asthma receiving care at nine outpatient pediatric and family medicine clinics in the Bronx, NY. Family caregivers (also referred to in this article as caregivers) are considered any family member who plays a primary role in caring for a family member’s health, including managing their chronic illness and related medications (14). This qualitative study was part of a cluster randomized controlled trial (Promoting Asthma Guidelines and Management Through Technology-Based Intervention and Care Coordination, PRAGMATIC® trial, ClinicalTrials.gov ID NCT03066596) of a clinic-based intervention to improve provider adoption of asthma guideline-based care. The asthma severity and level of control screening algorithms based on the national guidelines (15) were incorporated into the health system’s electronic health record system, Epic, as part of the study. Screening for asthma severity and control is a standard practice at all outpatient clinics. As part of the PRAGMATIC® intervention, patients were referred to asthma outreach workers via their primary care providers. Asthma outreach workers elicited caregiver perspectives about the COVID-19 pandemic during asthma lessons and care coordination sessions from March to December 2020. Caregivers were asked over the telephone about the COVID-19 pandemic, how it affected both the family and child’s asthma management, and what resources and/or education they would like to receive. A list of interview guide questions is included in table 1. Child demographic characteristics and asthma severity (intermittent, mild persistent, moderate persistent or severe persistent) or level of control (well controlled, not well controlled or very poorly controlled) classification were obtained from the medical records. The study was approved by the Montefiore-Einstein institutional review board (IRB # 2016–6258).
Table 1.
Interview guide questions.
| Interview guide questions: |
|---|
| How has the COVID-19 pandemic affected you and the way you are taking care of your child's asthma? |
| How has COVID-19 affected your access to medical care/doctors’ visits? |
| How has COVID-19 affected your access to medications? |
| How has COVID-19 affected your access to food and other necessities? |
| What education and resources on coronavirus would be helpful for you to have? |
Statistical analysis
The study team used qualitative thematic analysis to identify reoccurring themes from conversations with caregivers. A codebook was created based on themes identified during interviews. Interview notes were independently coded for common themes, and any discrepancies were reviewed together by the study team. Content analysis was used to identify the number of respondents who shared a particular concept. Salient themes were assessed based on the frequency of occurrence. Emerging themes were discussed and agreed upon by the investigators. We used “verbal counting” (16) methodology to quantify the number of respondents within a particular sub-theme. Based on this methodology, “a few/several” denotes 1–7 respondents, “some” refers to 8–19 respondents, “many” denotes 20–29 respondents, “half” denotes 30–31 respondents, “more than half” denotes 32–55, and “almost all” denotes 56–61 (Table 2).
Table 2:
Verbal counting guide
| Phrase | Number of caregivers | % |
|---|---|---|
| A few / several | 1–7 | <13 |
| Some | 8–19 | 13–47 |
| Many | 20–29 | 33–48 |
| Half | 30–31 | 49–50 |
| More than half | 32–55 | 52–90 |
| Almost all | 56–61 | 92–100 |
We classified each child’s asthma screening result as less severe (children with mild persistent or not well controlled asthma) or more severe (children with moderate persistent, severe persistent or very poorly controlled asthma) and evaluated their responses using the method described above. Children with mild intermittent or well controlled asthma screening results were excluded from the subgroup analysis. The results are presented for the entire sample and the subgroup with less severe and more severe asthma.
Results:
A total of 61 caregivers participated (51% of children were female, mean age 7.00 years (SD 3.35), age range (2–12), 56% Hispanic, 89% had persistent or uncontrolled asthma (meaning any persistent severity screening result or a not well controlled or very poorly controlled control screening result) prior to start of the pandemic, 95% of caregivers were female) (Table 3).
Table 3:
Demographic characteristics of study participants
| Characteristic | n | % | |
|---|---|---|---|
| Mean age, years (SD) | 7.00 | 3.35 | |
| Gender | |||
| Female | 31 | 51% | |
| Male | 30 | 49% | |
| Ethnicity | |||
| Not Spanish/Hispanic/Latino | 19 | 31% | |
| Spanish/Hispanic/Latino | 34 | 56% | |
| Unavailable | 8 | 13% | |
| Race | |||
| Black or African American | 19 | 31% | |
| Other | 35 | 57% | |
| Unavailable | 5 | 8% | |
| White | 2 | 3% | |
| Asthma screening result | |||
| Intermittent | 4 | 7% | |
| Mild Persistent | 9 | 15% | |
| Moderate Persistent | 6 | 10% | |
| Severe Persistent | 3 | 5% | |
| Well Controlled | 3 | 5% | |
| Not Well Controlled | 20 | 33% | |
| Very Poorly Controlled | 16 | 26% | |
| Asthma severity groupings | |||
| Intermittent or well controlled | 7 | 11% | |
| Less severe | 29 | 48% | |
| More severe | 25 | 41% | |
| Caregiver | |||
| Father | 3 | 5% | |
| Mother | 58 | 95% | |
Percent may not add up to 100% due to rounding.
We identified a total of seven themes. These included the overall effect of the pandemic on child’s asthma; barriers to accessing care that families experienced; barriers to physical activity as a result of stay-at-home orders; challenges with triggers and trigger management; family education and resources needs; and challenges related to medication adherence; and mental health-related challenges. Illustrative quotes from caregivers for each theme are provided in Table 4.
Table 4:
Caregiver perspectives on COVID-19 and asthma
| Theme | Representative quotes |
|---|---|
| Overall effect of pandemic on asthma | Caregiver 236: “COVID-19 has had a positive effect because my child has not been around the things that usually trigger his asthma. ” |
|
Caregiver 268: “It has been easy taking care of her asthma during the pandemic. She hasn’t been outside, so her allergies have not been triggering her asthma She has only gone out to the store, so she has not been walking long distance or going up the stairs at school. ” | |
| Caregiver 289: “But being quarantined has had its benefits too. Her asthma is also triggered by pollen, so not going outside has been good for her.” | |
| Caregiver 290: “I have noticed that my daughter’s asthma has been good during the pandemic because I am home and can monitor her and make sure she takes her medicine. I can’t do this when she is at school.” | |
| Barriers to accessing care | Caregiver 262: “I have been my daughter’s nurse and doctor during the pandemic because I have been forced to taking decisions on how to manage her asthma, like stopping the QVAR. I can’t contact the doctor as easily as before the pandemic to ask for medical advice, so I have ended up taking my own decisions as to what is best for my daughter’s asthma.” |
| Caregiver 310: “The Corona virus has actually helped my son’s asthma because his asthma triggers are in school and since he is not there anymore, he hasn’t had any issues with his asthma. However, it has affected his allergy care. His allergist ordered blood lab, but I do not want to go to the hospital right now. I am going to wait until the quarantine is over and is safer to go outside to get it done. ” | |
| Caregiver 131: “Well, I called to schedule a physical because he hasn’t seen the doctor in a while and I also wanted to ask for refills because he is out of asthma medicines, but they told me they’re not scheduling appointments right now because of the COVID-19. I am glad you called and will ask the doctor to order the meds.” | |
| Barriers to physical activity | Caregiver 104: “He gained 14 pounds over the last year and being at home all the time hasn’t helped with his weight and I know this can make his asthma worse. And then he also gets asthma when he exercises, but because he hasn’t been out, he hasn’t had issues with his asthma. And there’s the pollen too, but again, he hasn’t been out, so this hasn’t been a problem either. COVID-19 quarantine has helped in some ways his asthma, but in some others it hasn’t. ” |
| Caregiver 224: “He’s only had issues with his weight because he hasn’t been active.” | |
| Challenges with triggers and trigger management | Caregiver 131: “She had 2 asthma attacks requiring ED in August. Her asthma has been triggered more now that she is indoors all the time because her triggers are smoke from cooking, roaches, mold and dust. |
| Caregiver 266: “Because of the pandemic, a lot of people are out of work in this building, so there are more people smoking cigarettes and marijuana in the hallways and hanging outside. That’s not good for my daughter because she has rhinitis and sometimes that triggers her asthma. The pulmonologist changed her preventive to one that is stronger because of her constant exposure to the smoke.” | |
| Caregiver 153: “The pandemic hasn’t affected her because she has been inside. Her asthma is mostly triggered by colds and changes in weather. She is not going to school, so she is not getting colds from other children. And the weather has not affected her either because she doesn’t go out.” | |
| Caregiver 236: “COVID-19 has had a positive effect because my child has not been around the things that usually trigger his asthma. A lot of them are at school. Thanks God for the remote learning because he would be having a lot of issues with asthma right now. This is the season he gets it the worst. They don’t do a good job keeping the school clean. He was getting asthma attacks very frequently because of the dust and I kept telling them to clean the rug in his classroom, but they never did it.” | |
| Family education and resources needs | Caregiver 224: “How does the corona virus really affect children with asthma? I have heard so many stories about this, so I feel I need more accurate and reliable information about this.” |
| Caregiver 321: “I would like more information about how to speak to small children about COVID-19” | |
| Caregiver 81: “[I would like] COVID-19 education that is age appropriate and less frightening for the children” | |
| Challenges related to medication adherence | Caregiver 180: “COVID-19 has helped because now I am home all the time I am making sure she is taking her medicines. Before I had to rely on other people to do it.” |
| Caregiver 263: “It [pandemic] has not affected the way I am taking care of my child’s asthma. On the contrary, COVID has helped me to control it better because I am not working. Now I am home and can be on top of his asthma care making sure he takes his medicines. Before I was relying on other people to do this for me at home. It’s not the same when other people take care of your child.” | |
| Caregiver 289: “They reduce my husband’s working hour, so we are struggling with money. The copay for the QVAR is very expensive. Soon I won’t be able to afford it and my daughter will be left without her medication. I want the doctor the prescribe a cheaper version of this medicine.” | |
| Barriers to mental health | Caregiver 81: “…my husband and I got COVID19 in March. He [child] was scared we were going to die. He is also scared of going outside and it makes me sad because I know he wants to go out and play (He is a very outgoing and active child), but the fear to the virus is stronger than anything else.” |
| Caregiver 139: “I am more anxious about taking care of her asthma now than I was before the pandemic because I heard people with asthma could get very sick if they get the virus, so I am in a constant alert.” | |
| Caregiver 240: “My child has been experiencing more asthma symptoms during the pandemic because he has been having more temper tantrums. He feels isolated and not being able to go out and play with his friends frustrates him and gets him angry.” |
Entire sample:
Overall effect of the pandemic on child’s asthma
Many caregivers stated their child’s asthma had improved because of the stay-at-home orders and decreased exposure to outdoor triggers. Of these, most caregivers stated it was easier to control their child’s exposure to triggers in the home environment and that the increased time spent together helped the parent feel they had better ability to manage their child’s asthma. Some caregivers found their child’s asthma to be worse during the pandemic. Of these, a few caregivers mentioned their child’s exposure to indoor triggers like cleaning products and second-hand smoke. Several others mentioned decreased access to medications as a reason for increased symptoms during the pandemic.
Barriers to accessing care
Caregivers reported challenges to asthma management related to accessing care as guidelines around in-person healthcare frequently shifted during the pandemic. Many caregivers had trouble with tele-visit workflows and filling medications. Some caregivers also experienced financial barriers as a result of the pandemic, including lost employment. Caregivers reported that they felt medical staff were harder to access during the pandemic and that they needed to make more of their own decisions regarding their child’s health than they did before the pandemic. A few caregivers expressed concern about the limitations of tele-visits and refrained from making follow-up appointments until they could go in-person.
Barriers to physical activity
Some caregivers noted that their children experienced increased weight gain as a result of reduced physical activity. Of these, a few reported that stay-at-home orders and playground closures made it difficult to get recommended daily activity, and that their lifestyles during quarantine involved less walking, stair climbing and general activity. Caregivers reported this inactivity caused increased weight gain in their children.
Challenges with triggers and trigger management
Almost half of respondents mentioned that asthma trigger exposure improved during the pandemic due to limited time spent outside and reduced exposure to second-hand smoke on the street. Several mentioned it was easier to control their child’s exposure to triggers because of increased time spent together due to stay at home orders. Some caregivers also reported increased exposure to indoor allergens, including cleaning supplies, mold, vermin and cigarette smoke.
Family education and resources needs
More than half of caregivers were interested in receiving additional education and resources related to the coronavirus. Some were interested in the virus’ effect on children with asthma and in finding out about local resources and support available to them. A few caregivers mentioned that they found the asthma education provided by the asthma outreach workers helpful during the pandemic. A few caregivers mentioned they felt unsure of the risks and best practices around managing COVID-19 exposure risk, including in split-custody households and in households with family members going to work.
Challenges related to medication adherence
Caregivers mentioned varied experiences with medication adherence. A few caregivers reported difficulty accessing controller medication or rescue medication. A few other caregivers reported that it was easier to maintain adherence with medication regimens when at home with their child, rather than away at work. Several caregivers reported they did not need to rely on family members or school staff to administer controller medication and therefore felt more in control of their child’s asthma. A few also reported gaps in healthcare access that contributed to missed medication doses, including pharmacies that missed medication shipments and financial hardship in affording medications.
Mental health-related challenges
Some caregivers noted changes in their child’s mental health or their own mental health as a result of the pandemic and stay-at-home orders. Caregivers themselves described feeling anxious, “on high alert” and feeling nervous that contracting the virus might be harmful for their child given their asthma. Caregivers described their children as feeling anxious about the pandemic and frustrated by a lack of physical activity. A few caregivers noted that their child’s asthma was triggered by pandemic-related anxiety.
Subgroup with less and more severe asthma
Nearly half of caregivers of children with less severe asthma described the stay-at-home orders as beneficial for their child’s asthma overall, while only some caregivers of children with more severe asthma thought the stay-at-home orders had improved their child’s asthma. Several caregivers in both the less severe and more severe groups described the pandemic as worse for their child’s asthma. Caregivers in the more severe group reported that they were able to be more consistent with controller medications, while caregivers in the less severe group mentioned they were able to avoid triggers more easily. Among the less severe group, several caregivers mentioned that their child’s asthma was predominantly seasonal or triggered by exercise and reported that the pandemic had made it easier to avoid common triggers, thereby improving overall asthma control. In most other respects, caregivers of children in both groups had similar perspectives on stay-at-home orders and associated changes to their family’s asthma management.
Discussion
Caregivers described several barriers to asthma management and variable asthma control during the COVID-19 pandemic. Though many caregivers reported reduced exposure to environmental triggers, others reported increased indoor triggers related to housing conditions such as second-hand smoke, mold and cleaning products. Caregivers also reported variable access to care and medications, including difficulty getting medication from pharmacies or difficulty accessing primary care providers. Caregivers reported barriers to managing comorbid conditions including increased child weight gain from lack of physical activity and an increased incidence of anxiety or depression related to the pandemic. Caregivers welcomed educational resources but expressed uncertainty about decisions regarding their child’s asthma and the potential risks of COVID-19 for their child. Caregivers for children with less severe asthma had similar experiences to caregivers for children with more severe asthma. Caregivers in the less severe group mentioned more trigger-related asthma improvements and a few caregivers for children with more severe asthma mentioned better controller medication adherence. This may be because caregivers were concerned about exposing children to the SARS-CoV-2, the virus that causes COVID, especially if their child would need to be taken to the hospital in the event of an asthma exacerbation.
These findings are consistent with other studies that outline changes in asthma management and access to medication during the pandemic, in which patients changed their medication dosage or stopped taking medication due to changes in asthma control related to stay-at-home orders (5–7). Few qualitative studies have been conducted that incorporate caregiver perspectives about asthma management for children during the pandemic. Jia et al (13) conducted a qualitative study of caregiver perspectives on asthma control during the COVID-19 pandemic in Japan. Caregivers reported overall improvements in asthma control that they attributed to improved medication adherence, reduced exposure to triggers like respiratory infections and allergens, and the ability to follow their child’s asthma more closely while at home together.
Like Jia et al, many caregivers in our study felt that the stay-at-home orders were beneficial for their child’s asthma overall. For example, caregivers mentioned that being at home during the pandemic had made regular medication administration easier and helped to improve adherence with controller medications. Some caregivers felt that barriers to asthma management during the pandemic were different than barriers before the pandemic, but that there were still barriers that existed. For example, respondents mentioned trouble accessing medical providers for help with medications and making decisions about their asthma management.
Caregivers mentioned challenges related to both their own and their child’s mental health during the pandemic, including anxiety as triggers for asthma. Evidence suggests that mental health disorders may co-occur with asthma (17), and that poor mental health may relate to worse asthma outcomes (18). There is also evidence that caregivers for children with asthma experience more anxiety and depression (19). The experiences of caregivers in this study with their own and their child’s mental health challenges warrants further investigation as to possible lasting effects of pandemic-related anxiety on asthma control.
Stay-at-home orders in the Bronx mirrored other regions of the country in improving aspects of asthma care (9,10). However, barriers to care persisted for many families, particularly in accessing high-quality care and education about how they could best care for their children with asthma during the pandemic. This study was limited in part because it included only families in the Bronx, where rates of COVID infection were particularly high, and therefore our results may not be generalizable to other cities with different COVID prevalence rates. Additionally, we did not conduct repeat interviews with caregivers to determine whether issues related to health access or insurance may have existed prior to the pandemic-related stay-at-home orders.
Conclusions
Our study found that some aspects of asthma management were improved as a result of stay-at-home orders while others remained challenging. As many respondents felt their family’s asthma management benefitted overall during the pandemic, future responses to similar public health crises should prioritize limiting exposure to triggers and providing educational resources to families – two aspects of asthma management that caregivers mentioned had improved during the pandemic. Families also mentioned that they were unable to find opportunities for regular physical activity and some had trouble accessing their doctors or getting refills for asthma medications. Future emergency response planning should focus on continuity of care to ensure families are able to effectively manage their child’s asthma at home during public health crises.
Funding:
This work was supposed by the National Institutes of Health (NIH), National Heart, Lung, and Blood Institute (NHLBI) under grant R01HL133789, PRAGMATIC® trial, (PI Reznik).
Footnotes
Declaration of Interest Statement
Marina Reznik is currently receiving grant support from the NIH, Stony Wold-Herbert Fund, and Monaghan Medical Corporation. The authors report there are no competing interests to declare. This work was supported by the National Institutes of Health (NIH), National Heart, Lung, and Blood Institute (NHLBI) under grant R01HL133789, PRAGMATIC® trial (PI Reznik). The NHLBI had no role in the design and conduct of the study. The authors alone are responsible for the content and writing of the paper.
Clinical trial: This study is registered with ClinicalTrials.gov, identifier # NCT03066596
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