Caregiver-Perceived Determinants of Asthma Morbidity in Early Childhood: A Qualitative Study

Abstract

BACKGROUND:

Social determinants of health are linked to asthma health inequities starting in early childhood. We sought to contextualize this quantitative evidence by characterizing caregiver-perceived determinants of asthma morbidity among young children.

METHODS:

Caregivers of children aged less than 5 years hospitalized with asthma participated in semi-structured interviews. The Asthma and Allergy Foundation of America (AAFA) health disparities framework incorporates 10 determinants that informed interview guide development, spanning upstream (racism/discrimination, policies/governance, culture, economic stability, education) to downstream (physical environment, social environment, health care services, individual behaviors, genes/biology). Asthma providers were interviewed for triangulation. Interviews were analyzed using content analysis, and themes were organized by AAFA determinants.

RESULTS:

25 caregivers and 6 providers were interviewed. Children had a median age of 3 years (interquartile range, 2–4 years), were often male (n = 18; 72%), and frequently experienced adverse community-level social determinants of health (n = 14; 60%). Four themes were identified: (1) uncertainty if children aged less than 5 years with asthma symptoms have asthma; (2) downstream determinants including asthma knowledge and access to asthma care, caregivers’ behaviors, children’s environments, and family history of asthma/atopy are relevant to children’s asthma morbidity; (3) upstream, structural determinants are often considered irrelevant to children’s asthma morbidity; and (4) asthma impacts families’ socioeconomic potential and quality of life.

CONCLUSION:

Caregivers perceived downstream determinants (health care, environment, individual behaviors) as key contributors to young children’s asthma morbidity and raised the uncertainty with diagnosing asthma in early childhood. Standardizing the diagnosis of asthma and improving access to guideline-based asthma care may be one family-centered approach to optimizing asthma health equity in early childhood.

INTRODUCTION

Social determinants of health (SDOH) shape the neighborhoods where children grow and are key contributors to their developing health.^1,2 Asthma is one common, chronic pediatric condition with persistent inequities that is uniquely sensitive to a child’s social conditions.^3,4 Social risk factors, or adverse SDOH experienced at either the family- or community-level, are known contributors to inequities across the entire spectrum of childhood asthma.^5–9

Despite the documented associations between social adversity and asthma, social risk factors co-occur, and the pathways by which they impact young children’s asthma are unclear, making it difficult to focus interventions.¹⁰ Moreover, social risk factors are distinct from and poorly overlap with social needs (ie, social risks for which families request assistance), which has implications for families’ participation in social care interventions.^11–13 Engaging caregivers as key partners can overcome these issues and is an effective strategy for creating family-centered health care interventions for children with chronic conditions like asthma.^14,15 Partnering with families is also essential for health care systems to understand how to best assist families with social needs¹⁶ and has illuminated pathways by which social risks impact the management of other chronic conditions including sickle cell disease.¹⁷

Children aged less than 5 years with asthma represent a distinct population that may be centered at the intersection of social adversity and asthma. While there is notable clinical overlap between viral bronchiolitis and asthma in this population, pediatric asthma can start in early childhood, and children aged under 5 years continue to have the highest rates of asthma-related morbidity.^3,18–21 In tandem, young children are more often at home with caregivers than at school compared to older children and may be more impacted by social adversity and resulting toxic stress.^22–24 Despite these overlapping vulnerabilities, few studies have explored social inequities in asthma-related outcomes focused on children aged less than 5 years—and subsequently identified them.^24–26 Qualitative evidence from caregivers of children aged less than 5 years old to contextualize these early childhood quantitative associations is lacking, presenting a barrier to the creation of family-valued interventions that might mitigate associations between social adversity and asthma among young children. Existing related qualitative studies have instead focused on caregivers of older, school-aged children to examine perspectives on how stress and poverty impact asthma management as well as to identify determinants of asthma-related health care access.^27–29

We designed the current qualitative study to address this gap and sought to understand how caregivers perceive relationships between SDOH and asthma-related morbidity during the critical period of early childhood when both asthma morbidity and susceptibility to social adversity may be highest. We aimed to characterize caregiver-perceived determinants related to asthma-related morbidity among children aged less than 5 years during asthma-related hospitalizations when these relationships may be pronounced, triangulated with asthma providers’ perspectives.

METHODS

This qualitative study used a combined inductive/deductive thematic approach to complete a content analysis of 25 interviews from caregivers with young children hospitalized with an asthma exacerbation and was approved by our hospital’s institutional review board. This study is reported according to the Consolidated Criteria for Reporting Qualitative Research checklist.³⁰

Setting

This study took place at a tertiary care children’s hospital in Washington, DC, where the pediatric asthma prevalence (16%) exceeds the national average (10%).³¹ Children with asthma cared for by this hospital often identify as Black race and are publicly insured.^32–34 Our hospital primarily serves children, including those with asthma, who live in DC (53%) and surrounding Maryland counties (37%) and experience the full spectrum of neighborhood SDOH (measured by the Child Opportunity Index [COI]).^25,35

Study Population Recruitment and Data Collection

Our primary sample included adult caregivers of children aged less than 5 years currently admitted to the inpatient hospitalist or pulmonology service for asthma, who self-identified as one of the child’s primary caregivers. We opted to recruit and conduct interviews with caregivers during their child’s current hospitalization to increase the study feasibility and to facilitate capture of salient, timely perspectives on social adversity and children’s asthma morbidity.

We identified eligible caregivers using a daily list of children admitted for asthma generated using the electronic medical record. From this list, we included caregivers of children aged less than 5 years admitted with an ICD-10 (International Classification of Diseases, Tenth Revision, Clinical Modification) code for asthma (J45.901, J45.902, or J45.909). A convenience sample of caregivers meeting inclusion criteria were approached during their child’s current hospitalization and provided written consent prior to participation. Interviews were audio recorded and conducted between October 2022 to March 2023 in person at the hospitalized child’s room by a research coordinator (X.M.; supplemental material Table 1). Video interpreters were used for caregivers who spoke languages other than English. Caregivers received $25 gift cards for participation.

Demographic data collected from the electronic medical record included the child’s age, sex, and address. Addresses were geocoded to census tract and linked to 2021 overall COI 3.0 quintile, which we used to triangulate our findings and provide an objective description of the community-level SDOH experienced by participating caregivers.³⁶ In brief, the COI 3.0 is a comprehensive index of44 neighborhood indicators aggregated into 3 domains—education, health/environment, and social/economic—that influence children’s health and development.³⁶ COI quintiles (very low, low, moderate, high, and very high) each contain 20% of the pediatric population in the United States, with higher COI quintiles reflecting greater community-level opportunity and less adverse SDOH.³⁶

We elected not to collect demographic data for caregivers, including race and ethnicity, for several reasons. First, the racial and ethnic composition of the pediatric asthma population served by our health care system has been described in prior literature and through our local pediatric asthma registry.^32–34 Second, race and ethnicity are typically conceptualized as proxies for both individual-level and place-based social determinants of health.³⁷ Our focus in this work was to understand caregivers’ perspectives of various types of social adversity, including racism and discrimination, which we both directly queried caregivers about and indirectly assessed by analyzing participants’ census tract COI (the latter of which we have previously demonstrated is highly inversely collinear with race and ethnicity for the young pediatric asthma population in DC).²⁵

To triangulate caregiver findings and include the perspective of the health care system, we also included a smaller sample of asthma providers who worked at the same hospital. We identified providers from various disciplines who worked in our asthma specialty clinic with purposeful sampling and invited them to participate by email. After written consent was obtained, interviews were audio recorded and conducted in person at the hospital by study team member J.T. with only the participant and interviewer present (supplemental material Table 1).

Guiding Framework and Development of the Interview Guide

We utilized the Asthma and Allergy Foundation of America’s (AAFA’s) Framework for Root Causes of Asthma Disparities as our conceptual framework.³⁸ We used this framework because it is asthma focused and pairs the hierarchical nature (ie, that structural determinants influence social determinants) and detailed structural determinants of the World Health Organization’s Conceptual Framework for Action on the Social Determinants of Health with the specificity of social and other downstream determinants from the Healthy People 2020 Social Determinant of Health framework to categorize determinants of asthma health outcomes.^1,39 Altogether, the AAFA framework holistically incorporates 10 upstream and downstream factors that influence pediatric asthma outcomes aggregated into structural, social, biological, and behavioral determinants.³⁸

As we aimed to understand how caregivers consider these determinants to be relevant for young children’s asthma, we constructed the interview guide with 3 sections of open-ended questions (supplemental material appendix 1). First, due to the young age of this population, we established whether their child had been diagnosed with asthma to understand caregivers’ awareness of the diagnosis and whether caregivers had experience with this diagnosis preceding the current admission. Second, to assess disease burden, we asked how asthma impacted their child’s life. Third, we broadly asked which determinants impacted their child’s asthma and then proceeded to specifically inquire about the AAFA determinants: racism/discrimination, policies and governance, culture, education, economic stability, physical environment, social environment, health care services, genes/biology, and individual behaviors.³⁸

For providers, we established their clinical specialties and then similarly inquired how the AAFA determinants did or did not impact children’s asthma.

Data Analysis

Participant characteristics were summarized with descriptive statistics. Interviews were transcribed verbatim, reviewed for accuracy, deidentified, and uploaded to Dedoose for analysis.⁴⁰ Caregiver and provider interviews were analyzed together using content analysis.⁴¹ Two coders reviewed all interviews independently. The first 4 interviews were open coded to generate an initial list of codes and reviewed for concurrence. Deductive codes were derived from the AAFA framework (eg, access to health care, housing conditions) and whether determinants positively or negatively impacted asthma morbidity. Inductive codes were added when new content that did not initially align with an existing AAFA determinant was identified (eg, uncertainty about whether children aged less than 5 years have asthma). Discrepancies were resolved through review with coauthor K.P.

Counts of code applications, by number of reporting participants (caregivers and providers), were generated to gauge frequency. Similar primary codes were combined into secondary codes (subthemes), which were organized by relevant AAFA framework determinants and as applicable, grouped into themes. Subthemes reported by 9 or more caregivers are categorized as “major,” and those reported by 2 to 8 caregivers are categorized as “minor.”

RESULTS

Of the 32 approached caregivers, 25 were interviewed (range 7–34 minutes). Three families were discharged prior to being approached, 2 caregivers were not present at the child’s bedside, and 2 caregivers declined to participate. Children of interviewed caregivers were mostly male (n = 18; 72%) with a median age of 3 years (interquartile range 2–4; range 1–4 years). A total of 60% percent (n = 15) of caregivers reported their child had an existing asthma diagnosis. Eight caregivers reported no diagnosis, and 2 were unsure if their child was diagnosed with asthma. Families frequently experienced very low COI (n = 12; 52%), indicating more adverse community-level SDOH, compared to all other COI categories (low [n = 2; 8%], moderate [n = 4; 16%], high [n = 2; 8%], and very high [n = 3; 12%). Two participants’ addresses could not be accurately geocoded nor linked to census tract COI. Most caregivers (n = 23; 92%) spoke English. Six asthma providers were interviewed (range 24–42 minutes), including 2 emergency medicine physicians, 1 hospital medicine physician, 1 pulmonologist, and 2 asthma educators. Providers’ experience working in the asthma specialty clinic ranged from 4 months to 21 years.

Theme #1: Uncertainty if Children Aged Less Than 5 Years With Asthma Symptoms have Asthma

Unexpectedly, by asking caregivers if their child had asthma, we captured the confusion surrounding asthma diagnoses among young children (Table 1). Caregivers described their children as either not being diagnosed or were unsure if their child was diagnosed with asthma because of interactions with health care providers in which their children were recognized as having asthma risk factors and symptoms but, due to their young age, had not received a formal diagnosis. Providers endorsed this concept, with one noting, “People are hesitant to call it asthma in the 0 to 5 age group. And that’s probably the number one barrier … It limits appropriate preventative care, because then they don’t—they-they’re not, essentially, receiving guideline-based care if someone’s not calling it asthma. I think people are often calling it viral wheeze.” (Provider 1).

TABLE 1.

Major Themes Characterizing Caregiver Perceptions of Determinants of Asthma Morbidity Among Children Aged Less Than 5 Years

Subtheme	Exemplar Quotes	Caregivers Reporting	Providers Reporting
Theme #1: Uncertainty if children aged < 5 y with asthma symptoms have asthma
	“What does it mean to be diagnosed? But they don’t like to do that before 5, but she has all the factors and then they say: “Oh, she has a history of asthma and st-stuff.” So, you know … you know, you—like, do I get a certificate that says she-she has an asthma. … She has an inhaler. She has a nebulizer. She’s been in the ICU several times for asthma. But do they say she has asthma? They don’t like to say that before they’re 5 … you know? … I would say she has asthma. Yes. One doctor has definitively said it, yes. Given her history.” –Participant 6, caregiver of a 3 y old “They said maybe [it] is, and probably that … They say they don’t, um, diagnose asthma at this age. … But probably is a 90% that is asthma because in my family, my dad, my sister, and my old daughter all got asthma, you know.” –Participant 21, caregiver of a 1 y old, in response to being asked if her child is diagnosed with asthma	9	3
Theme #2: Caregivers often perceive downstream determinants to impact their children’s asthma health
Health care services subtheme 1: caregivers’ asthma knowledge improves timely recognition and management of early asthma symptoms and is developed from multiple sources	“The information I received today made it better … because a lot of stuff, I didn’t know I didn’t know. Like the albuterol, I didn’t know. … I don’t give it to him every day, but I feel as though that he needs something every day because the way he rip and run. But now, with the, the [Flovent] … the, that one, that’s what I can use for it in the morning and night. So, I think that will help me … especially when he’s the Tasmanian devil, like—calm him down. [ … ] Because I, like I say, I don’t have asthma, so it-it makes me more knowledgeable about it.” –Participant 17 “ … Everyone who is around my child is … knows that he has asthma and knows how to prevent him from ha-having asthma attacks and just know his triggers. Not just his triggers to see, to know if he’s having a asthma attack or if he’s okay. And, um … not only that, they know how to administer medicine or, um, try to get him to sit down and relax … and take deep breaths.” –Participant 23	22	6
Healthcare services subtheme 2: regular access to asthma care, shaped by the health care system, pharmacies, and insurance practices, improves asthma	“ … If I had everything I needed, I would be able to deal with it, so I wouldn’t say go to the room—hospital just because it’s occurring if I can, you know, calm it down or whatever.” –Participant 25 “I will say that we did, or I did ask 2 doctors for referrals for a pulmonologist and was kind of told that he doesn’t need that, and so it is one factor that I, now that we’ve been to the hospital, like, 2 more times, that I wished … I would have persisted a little bit more.” –Participant 20	23	6
Physical environment subtheme 1: environmental triggers are modifiable risk factors for children’s asthma morbidity	“ … Where I live, I know it makes it worse. We have a lot of mold in my unit, in the units. And, um, the mold and the, um, I believe the l—the, um, in the paint, the lead—the lead factor. Because I never suffered from asthma until I lived and I have it. And it makes it hard for us to breathe. The-the dust factor in the vents. I try to get something, brush it out, spray it, but the mold and the, um, lead, m-hmm. Makes it worse.” –Participant 25 “I’m waiting for housing. And, I really need it, ‘cause I need to move from where I, where I’m at, because that can be part of what’s triggering his asthma too. ‘Cause the buildings is infested. It’s like … people smoke in the hallway, hang in the laundry room and smoke, so it’s like, I really need help with that.” –Participant 3	18	6
Physical environment subtheme 2: the outdoor environment (weather, air pollution/quality) impacts children’s asthma	“He usually, um, when the weather changes … that triggers his asthma, the wheezing. Um, so yeah, he … maybe like in the spring/winter time, he’s probably more often to see the doctor than normal. Because the weather changes so much.” –Participant 24 “I believe there is, uh, something that I always, uh, look into as whatever the kids has to go to school, whatever school it has to go to make sure it’s not industrial area. Because also the industrial areas tend to have some environmental issue, pollution and stuff. If there is any daycare in those kind of area, that can impact the respiratory condition of those kids. Uh, this is something a lot of people don’t pay attention to it. But also even in a residential area, if you don’t have, uh, an adequate environmental policy, uh, in the area, it can affect if there is any playground in that neighborhood, of course, if it’s a community, there would be a playground, a library. And there would be some-some kids that are exposed to asthma that can impact their health.” –Participant 18	12	4
Social environment subtheme 1: young children are exposed to infection through daycare, caregivers’ work, and siblings’ school, which increases their asthma symptoms	“Okay, so, at a school to me, it will be him had to be around other kids that’s sick. So that will affect him like real bad. So even, uh, us even at home because he has younger siblings that go to daycare that could bring him something at home too.” –Participant 1 “I believe that because he is susceptible to, you know, these viruses that cause these symptoms, I mean, obviously when he’s, you know, around other kids or around other people who could possibly be sick themselves and be carrying certain virus, then he’ll catch it. So, um, I think that’s the only thing that I would say. Yeah, so going to daycare with his friends are probably the number one factor just cause the other kids—for them it’s a cold, then for him, it sends us to the hospital.” –Participant 20	18	5
Individual behaviors subtheme 1: due to young children’s lack of autonomy and control, caregivers have a critical role to manage their asthma and limit behaviors (eg, play) that exacerbate symptoms	“ … When he sit down and sustain, that’ll calm it down, but him running around. It’s gonna make it [asthma] worse. But me, I sit him down once I realize, like, it’s about to start happening. I just sit him down and sit him out for a little while. And that’ll make it go a bit better.” –Participant 19 “ … Since he was diagnosed with asthma, we decided not to take him there [daycare] anymore because one time he was feeling a little bit unwell and he was, when we picked him up from the daycare. So, we prefer not [to] take him anymore in case a situation like this happens in the daycare and that it would be better to watch him at home, so I’ve been, uh, staying at home to-to take care of him … Since we took him out of the daycare, he has only been socializing with his 2 siblings and with his parents, us.” –Participant 16	17	5
Genetics and biology subtheme 1: family history of atopy or genetic predisposition to asthma contributes to children’s asthma, and when there is no family history, caregivers are uncertain how their child developed asthma	“It’s in our genes already. The asthma. So, it comes from our family.” –Participant 7 “Worse. There was small history of asthma in my family. Um, my aunt’s is like activity induced, and then my mother had this type of asthma where it’s hospital. It’s beyond an inhaler, it is … .Um, so I think, she probably got that from, passed down to her for sure.” –Participant 6 “Well, that’s the interesting thing. Neither one of us have any family history of this whatsoever, so … .We’re not sure where it came from.” –Participant 20	19	6
Theme #3: Caregivers frequently do not perceive upstream, structural determinants to impact their child’s asthma
Racism/discrimination subtheme 1: racism and/or discrimination was either not experienced and/or thought not to impact asthmaa	“Um, I don’t think that that’s [racism/discrimination] played a factor, at least … .I don’t think so. Um, I mean, we haven’t seen anything that’s affected him at this time in his life. Um, I’ve definitely experienced stuff in my life, but I don’t think that has had anything to do with anything that’s going on with him.” –Participant 20 “It [racism/discrimination] never affected us … .Never affected us, we, they [providers] do what they’re supposed to do.” –Participant 8 “Mm-hmm. It hasn’t made it worse ‘cause I haven’t had to deal with it, thank God … on that level. Um, and everybody that’s surrounding us, medically and everything, has been great, doing the best they can to make sure he go back home or just in general live his everyday life good, positive, and just asthma free.” – Participant 25	19	0
Culture subtheme 1: caregivers believe their culture is related to children’s asthma or were unsurea	“I don’t think it [culture] makes it better or worse. Um, I don’t think that’s a determining factor.” –Participant 6 “Um, I don’t know. I never looked at it [culture] like that.” –Participant 23	15	0
Policies/governance subtheme 1: caregivers do not identify policies/laws as impactful for children’s asthmaa	“I don’t think it [policies/laws] does, I don’t think it have anything to do with her, personally.” –Participant 5 “Um, no. It [policies] doesn’t make anything better. It’s the same.” –Participant 9	11	0
Economic stability subtheme 1: caregivers do not believe, or are unsure, if their financial situation impacts their children’s asthmaa	“So, I think that doesn’t apply. I really don’t know because he’s just a child, he wouldn’t know what issues I have economically that should affect him. So, as a parent you cannot involve your kids in your economic issues.” –Participant 22 “I don’t feel like none of that helped … .I mean, I don’t feel like it … .None of that make it better … .None of that even matters with him.” –Participant 19	10	0
Theme #4: Asthma impacts families’ quality of life and socioeconomic potential
Subtheme 1: impact on families’ quality of life	“It makes it difficult for him to sleep, play. Um, be a normal child.” –Participant 25 “No. It’s scary, though. But, it is real scary, ‘cause you never know, like, their age … Their age, and, like, [he] don’t talk, so you gotta be like, keep real close out on him, and listen how he breathe.” –Participant 8	22	2
	“I just think it’s important to know how much it affects the parents and the family. It definitely gives me a lot of anxiety, her asthma and having to be so involved in the health care system because of it.” –Participant 6
Subtheme 2: impact on families’ socioeconomic potentiala	“ … Like I do think twice about if she’s bad enough to bring her to the hospital because I think about the bill, honestly. So … and I have insurance, and I have benefits, and I’m a government employee, so I have all the things. I can only imagine if it was … If I didn’t, you know?” –Participant 6 “ … If he wasn’t sick, he’d be able to go to daycare. And he’s so smart, he loves school.” –Participant 2 “[I’m] missing work. It impacts my life too.” –Participant 3	16	0

Abbreviation: ICU, intensive care unit.

^aDenotes themes reported only by caregivers.

Theme #2: Caregivers Often Perceive Downstream Determinants to Impact Their Children’s Asthma Health

Seven major (Figure 1; Table 1) and 4 minor (supplemental material Table 2) subthemes were identified. The two most common subthemes, endorsed by caregivers and providers, were about health care services. First, caregivers’ knowledge about asthma triggers and management, which they frequently learned from past experiences as well as the internet and the health care system, improves their children’s asthma health. Second, health care systems, insurance companies, and pharmacies play key roles in how families can regularly access asthma care, including medications and physicians, which affect children’s asthma.

FIGURE 1.

Adapted Asthma and Allergy Foundation of America health disparities framework, modified to reflect caregiver’s perceptions of determinants’ impact on young children’s asthma morbidity (based on identified major subthemes). Determinants caregivers perceive to impact asthma morbidity in major themes are in red; determinants caregivers perceive do not impact asthma morbidity in major themes are in gray. The education determinant was not raised in major themes and thus not included in this figure. Original Asthma and Allergy Foundation of America framework can be found at https://aafa.org/wp-content/uploads/2022/08/asthma-disparities-in-america-burden-by-race-ethnicity-executive-summary.pdf.

Two physical environment sub-themes were identified by caregivers and providers. First, environmental triggers are modifiable risk factors that worsen asthma when present but can be mitigated by cleaning and home improvements. Second, the outdoor environment (ie, air quality, weather) worsens children’s asthma health. One social environment subtheme, identified by caregivers and providers, was that young children’s environments and caregivers’ work are major sources of infection exposure, which can increase children’s asthma symptoms. A minor social environment subtheme reported by caregivers and providers included that supportive environments, both family members and families’ surrounding communities, facilitate children’s asthma health. While the above results indicate caregivers did believe children’s environments impacted their asthma, 2 minor subthemes captured that some caregivers, when directly asked about the child’s physical or social environment, felt that these were not related to impacting their asthma health.

One individual behavior’s subtheme, endorsed by caregivers and providers, was that caregivers need to be proactive in children’s asthma management due to young children’s lack of control and autonomy, often needing to regularize play, outdoor time, and socialization to decrease asthma symptoms. A minor subtheme (reported only by caregivers) described how they did not think children’s own actions impacted their asthma.

One genetics/biology subtheme identified by caregivers and providers was that a family history of asthma contributes to children’s asthma. When a child had no family history of asthma, caregivers were uncertain how their child developed asthma.

Theme #3: Caregivers Frequently do not Perceive Upstream, Structural Determinants to Impact Their Child’s Asthma

Four major (Figure 1; Table 1) and 2 minor subthemes (supplemental material Table 2) were identified. Caregivers frequently described that four upstream determinants were either unrelated, or they were unsure if they were related, to their child’s asthma. First, caregivers often described that they and/or their children had not experienced racism or discrimination, whereas other caregivers succinctly stated these were unrelated to their child’s asthma. Second, caregivers often reported that culture did not impact their children’s asthma, with a few caregivers responding that they did not know. Third, for policies/governance, caregivers most often reported these did not impact their child’s asthma, while 1 was unsure. Finally, caregivers reported that their economic resources did not affect their child’s asthma, with 2 caregivers unsure if they were related. No providers similarly reported these determinants were unrelated to young children’s asthma, instead endorsing the relevance of policies for improved health care access and living conditions to improve asthma and noting that language and culturally concordant care can improve treatment adherence and care: “So it helps to have people that relate with the families and just can speak the language … and I’ve seen this actually, um, they [families] may not feel expressing to a provider or someone else that looks different from them or speaking differently from them, just ‘cause they may feel uncomfortable … ” (Provider 4).

Providers also endorsed 2 minor economic stability and culture subthemes identified by some caregivers: (1) that families’ resources (eg, money, benefits) improve children’s access to care and asthma management, and (2) culture may impact treatment adherence and influence if families try natural remedies.

Theme #4: Asthma Impacts Families’ Quality of Life and Socioeconomic Potential

Most caregivers felt their child’s asthma symptoms negatively impacted their families’ socioeconomic potential and/or quality of life (Table 1). Caregivers and providers highlighted asthma’s negative impact on children’s play and sleep and how asthma symptoms are stressful and overwhelming to caregivers. Caregivers also described asthma as a financial burden and asthma symptoms and related health care utilization as a barrier to their children attending school and daycare as well as caregivers’ ability to attend work.

DISCUSSION

In this study, we leveraged the presence of caregivers during their child’s hospitalization when asthma morbidity is highest to conduct a novel characterization of caregiver-perceived determinants of asthma morbidity unique to children aged less than 5 years, guided by a comprehensive asthma-specific health disparities framework. During this critical time in childhood when both asthma morbidity and susceptibility to social adversity are potentially greatest, major themes raised by caregivers captured the uncertainty surrounding diagnosing young children with asthma; that downstream but rarely upstream, structural determinants are relevant to young children’s asthma health; and that children’s asthma health can have a negative impact on families’ socioeconomic potential and quality of life, underscoring a potential bidirectional relationship between these entities. Findings from our work provide the essential yet understudied perspective of caregivers with children aged less than 5 years that contextualizes quantitative evidence on social adversity and pediatric asthma and provides a meaningful, family-centered foundation to inform future strategies to advance asthma health equity in early childhood.

The controversy and practice variation related to diagnosing children aged less than 5 years with asthma was reflected in one of the first themes identified in this study, with some caregivers and providers describing that although children exhibit asthma symptoms, they are sometimes not diagnosed with asthma due to various age thresholds used by providers.^3,42 While we did not elucidate drivers of this diagnostic uncertainty here, future work focused on identifying these drivers will be important. Disparities in asthma development and morbidity begin in early childhood,^5,25,43 and it is imperative to consider how this diagnostic uncertainty and variation in asthma management among young children may initiate or exacerbate these inequities. Thus, children aged less than 5 years may face additional barriers posed by the health care system to guideline-based asthma care and the 2 most common factors identified by caregivers as important for children’s asthma—asthma-related knowledge and access to asthma care—which might contribute to their increased asthma morbidity.^18–21

Caregivers and providers in this study together emphasized the relevance of downstream determinants to young children’s asthma. By frequently recognizing asthma knowledge, access to asthma health care, and the role of modifiable environmental triggers, caregivers in this study lend patient-centered support to the central tenants of current asthma guidelines and existing literature documenting the effectiveness of interventions that address health care and environmental-related social risks.^44,45 Caregivers also raised their own integral role caring for young children with asthma, required due to the difficulty children have expressing asthma symptoms and the need for more hands-on management because of their age, which extends past similar qualitative research that focused on caregivers of older, school-aged children.⁴⁶ In contrast, caregivers’ perspectives diverged with providers’ perspectives and existing research with respect to upstream, structural determinants. Despite evidence describing the influence of racism and discrimination,^4,9 the potential benefit of housing and health care–related policies and programs,^47–50 and the relevance of socioeconomic factors to asthma morbidity,^4,9,25 caregivers in this study rarely endorsed economic stability, policies/governance, and racism/discrimination as relevant to their child’s asthma. We consider 2 possibilities for these discrepancies between caregiver vs provider and prior literature. First, conducting interviews during their children’s hospitalization may have biased caregivers to focus on more immediate factors that led to the current asthma exacerbation rather than upstream determinants. Second, it is also probable that the impact of downstream determinants is more easily recognized or valued, as these are the factors with which we interact more often compared to upstream, structural determinants.

As interventions are designed and implemented to advance pediatric asthma equity, it is necessary to include caregivers as valued partners, as they have meaningfully informed asthma interventions and ensured evaluated outcomes are relevant to families in past work.^14,51,52 Based on our study’s findings, interventions focusing on downstream determinants like health care and the environment may be most immediately valued and utilized by families, whereas interventions addressing structural determinants may first require additional engagement, brainstorming, and education with caregivers by health care and community partners to enhance families’ perception of their relevance to children’s asthma health. In addition, caregivers in this study raised the exacerbating role that asthma has on families’ social adversity, namely caregivers’ and children’s quality of life and socioeconomic potential. These findings are supported by prior literature and frame the relationship between social adversity and children’s asthma health as a bidirectional feedback loop in which worsening asthma outcomes can lead to increased social adversity, which in turn can further worsen asthma outcomes.^53,54 When considering relevant outcomes to assess intervention effectiveness, including those that reflect family-prioritized social factors, in addition to feasibility and clinical outcomes, may enhance their family centeredness.

Considering our findings, a practical immediate strategy might be to partner with caregivers to ensure equitable implementation of asthma guidelines for young children, which has potential to effectively reduce both asthma morbidity in early childhood and, in turn, the impact that children’s asthma has on families’ social adversity. Asthma guidelines for children aged less than 5 years encompass many of the elements highlighted by caregivers as important for their children’s asthma and currently recommend the following: (1) assessing asthma risk factors and patterns of asthma symptoms to diagnose asthma and inform longitudinal care plans, (2) assessing environmental triggers and social barriers that complicate asthma control, (3) prescribing intermittent or daily inhaled corticosteroids based on symptom patterns, and (4) providing asthma education.^45,55–57 Understanding how these guidelines are currently used in practice and implementing them to standardize the diagnosis of asthma, improve access to guideline-based asthma care including education and medications, and enhance clear, transparent communication with caregivers as valued partners in children’s asthma care might be an effective family-centered strategy to increase asthma health equity in early childhood.^45,56,58,59

Our study had limitations. First, ours was a single-center study, which may limit its transferability. However, our hospital is in DC, which has an asthma prevalence rate higher than the national average and demonstrated associations between pediatric asthma morbidity and community-level SDOH.^8,25,31 Second, we included only caregivers of hospitalized children to optimize feasibility of completing interviews and capture caregivers’ perspectives on social adversity and children’s asthma morbidity when morbidity was highest. However, our sample may have been more focused on immediate rather than upstream determinants, and we may have missed relevant perspectives among caregivers of children who receive asthma-related care in the emergency department, urgent care, or pediatrician’s office. Third, although we selected to focus on caregivers of children aged less than 5 years to address a specific gap in literature, some of our findings and their implications may be unique to this young population, with limited transferability to families of older children with asthma. Fourth, we utilized video interpreters to facilitate interviews with caregivers who spoke languages other than English rather than conducting interviews in their native language, which may have resulted in missing or altered content shared by caregivers. Fifth, although we ascertained whether recruited participants self-identified as the child’s primary caregiver, we did not assess whether they had the best insight into their child’s asthma health. Finally, we captured the community-level social adversity experienced by participating caregivers through the COI but did not collect individual-level demographic data including race or ethnicity. Although this could limit interpretability of our identified themes, specifically those related to racism and discrimination, we provided the demographic characteristics of the pediatric asthma population in the DC area served by our institution that has been consistently demonstrated in past literature and our local asthma registry, which we believe adequately contextualizes themes identified in this work.^25,32–34

CONCLUSION

In this qualitative study, caregivers of children aged less than 5 years hospitalized with asthma raised the uncertainty surrounding diagnosing asthma among young children and frequently noted downstream determinants related to asthma health care, children’s environments, and caregivers’ behaviors as most relevant to young children’s asthma morbidity. To advance asthma health equity using family-centered approaches, pediatric providers can consider partnering with caregivers to standardize how asthma diagnoses are made and improve access to guideline-based asthma care in early childhood.

ABBREVIATIONS

AAFA

Asthma and Allergy Foundation of America

COI

Child Opportunity Index

SDOH

social determinants of health