Towards Emplaced Understandings of Risk: How caregivers of children with asthma identify and manage asthma-related risk across different places

Abstract

In the United States, pediatric asthma is distributed geographically across lines of racialized segregation. We draw on emplacement, or the theory that embodied experiences and the material world are mutually informed, to situate such geographic trends within the narratives of 41 caregivers of children with asthma. Results suggest that caregivers identified and managed asthma-related risk with regard to the relational and structural conditions of three categories of locations: (1) houses, (2) neighborhoods, and (3) schools and other childhood institutions. Based on our findings, we identify critical intervention topics that are consistent with families’ everyday lived experiences of place.

Introduction

Structural factors contribute to an unequal distribution of asthma across ethnicity, race, class, and place (Brown et al., 2003). In the United States, asthma disproportionately affects African-American children in low-income and racially segregated neighborhoods (Brewer et al., 2017; Forno & Celedón, 2012). Asthma-related risk is higher in urban areas home to low-income communities of color (Harris, 2019; Maantay, 2007) in large part due to structural racism and environmental injustices (e.g., policies and practices related to residential segregation, air pollution, or substandard living conditions; Louisias & Matsui, 2020; Sullivan & Thakur, 2020; Hunleth et al., 2020). We refer to the constraints that disproportionately affect these areas as spatial inequities (Kane, 2021; Smiley, 2019).

In this article, we start with these known spatial inequities and examine how some parents and guardians of children with asthma (whom we refer to as caregivers) understood and responded to asthma-related risk in the places where they and their children carried out their lives. We focus on risk because research has shown that caregivers understand asthma-related risk differently depending on the structural features of their environments. For example, in southwest Alaska, Yup’ik parents of children with asthma associate asthma-related risk with the climate, changes in the built environment, and inadequate living conditions (Wind et al., 2004). In California’s Central Valley, Mexican-American families associate asthma-related risk with the use of pesticides at agricultural worksites near their homes and schools (Schwartz et al., 2015).

Alison Kenner’s research with adults who have asthma has shown that asthma management practices are based on “emplaced knowledge,” or knowledge that is situated within the specific contexts of different places. People with asthma cultivate this knowledge by attuning to how their asthma reacts to the triggers in these places (Kenner, 2018). Because asthma triggers, symptoms, and treatments manifest differently between people and across time (Hirose & Horiguchi, 2017), this knowledge becomes useful for guiding how people manage asthma and the asthma-related risk. Kenner observed that people with asthma create tactics based on their past experiences of places and identify areas in which to, for example, exercise caution or experiment with breathing techniques (Kenner, 2018). She refers to these tactics as emplaced care tactics, where people with asthma “situate[e] [themselves] in ways that protect the breathing body within the sociomaterial spaces of everyday life” (Kenner, 2021, p. 1113).

Whereas Kenner focused on adults with asthma, we examine the emplaced knowledge and care tactics of caregivers of children with asthma. Thus, we extend emplacement, or the theory that embodied experiences and the material world are mutually informed, beyond its typical focus on individuals’ sensorial experiences of and adaptations to their surroundings (Pink, 2011). Given our concentration on caregivers, we use the term emplaced caregiving tactics to acknowledge that these tactics are enacted by someone other than the asthma sufferer. Caregivers must necessarily cooperate with other people, including their child, and other systems on behalf of their child when practicing care. Therefore, caregiver perspectives push emplacement to explicitly include the relational and structural conditions encompassed by caregiving and place. By replacing care with caregiving, we also wish to draw attention to the many activities caregivers do for children with asthma to manage risks: administering medication; monitoring the child’s breathing and activity; taking the child to the doctor, the emergency room, or urgent care; limiting their exposures by dusting and vacuuming, and many other attempts to minimize triggers (Hunleth et al. 2020, Spray et al. 2021). We acknowledge that such caregiving, as we have shown in our prior publications, is emotionally laden and occurs in relation to the structural conditions that form asthma’s spatial inequities (Hunleth et al., 2020; Spray et al., 2021). Examples of such structural conditions that impact asthma risk include proximity to highways (Rosenberg et al., 2009), exposure to air pollution (Clark et al., 2010), and the presence of household triggers like tobacco smoke, mold, and pests (Freeman et al., 2003) that disproportionately affect socio-demographically marginalized populations in the United States.

Through our research with caregivers in St. Louis, Missouri, and Gainesville, Florida, we examine (1) how caregivers identify asthma-related risk in different places (i.e., their emplaced knowledge), and (2) how they manage their child’s risk across these places (i.e., their emplaced caregiving tactics). We define risk broadly as exposure to danger as understood by the caregivers in our study. We use the term “asthma-related risk” to refer to exposure to triggers that exacerbate asthma or to environments that complicate symptom treatment and management. Our focus on caregivers’ emplaced knowledge and caregiving tactics allows us to avoid overly individualized discussions of risk that can blame caregivers for children’s exposure to asthma triggers (Sze, 2004). Understanding the connections between systems-level structures and individual risk perception can inform interventions that help relieve the burden of asthma care that caregivers manage on their own with little outside support.

Settings and Methods

We explore caregivers’ emplaced understandings of asthma-related risk in two U.S. cities, St. Louis, Missouri and Gainesville, Florida, which feature high rates of pediatric asthma in low-income, African-American communities (Harris, 2019; Hunleth et al., 2020). Both St. Louis and Gainesville exhibit patterns of racialized residential segregation such that African-Americans in East Gainesville and North St. Louis have lower incomes and live with higher rates of air pollution and sub-standard housing than their white counterparts (Harris, 2019; IEC, 2019; Knowles & Jarret, 2017). In each city, hospitalization rates for asthma are at least six times higher among African-Americans than white residents (City of St. Louis Department of Health, 2018; Florida Department of Health, n.d.; Well Florida Council, 2016). In this article, we choose to analyze our interviews from Gainesville and St. Louis together (rather than to compare the cities) because despite differences in climate and population density, in both cities the distribution of asthma across the geographic lines of residential segregation was key to how caregivers understood asthma-related risk. We combined our analysis to achieve greater depth of understanding and conceptual generalizability of emplaced knowledge and caregiving tactics for caregivers living in cities marked by segregation and inequality.

The appropriate university institutional review boards approved all study activities. We recruited participants to participate in 60-minute audio-recorded, in-person interviews between December 2018 and May 2019 in St. Louis and Gainesville. We designed the recruitment plan with input from the universities’ respective community recruitment enhancement teams. These groups maintain registries of community members who have indicated interest in research participation. The study team contacted registered community members by phone, posted to social media, and placed flyers at relevant community locations and events. Participants were eligible if they spoke English, were at least age 18, and were the parent or guardian for a child under age 18 who had asthma. Several months into recruitment we added eligibility criteria to recruit more caregivers with low socio-economic status (SES) and with children who had high asthma severity to improve representation in our sample. Children were considered to have high asthma severity if, over the past 12 months, they had symptoms so bad that their inhaler did not stop the symptoms, they had to go to the emergency room for their symptoms, or they required an oral corticosteroid for their asthma. We recruited participants using the same methods described above but only enrolled participants who met the new asthma severity and SES criteria. See Table 1 for more information on participant characteristics and the SES criteria. Two interviewers from each site conducted each of 41 interviews, with 25 interviews in St. Louis and 16 in Gainesville. Caregivers received a $50 gift card.

Table 1:

Participant Characteristics

Caregivers (N=41)	N (%)
Site
Gainesville, Florida	16 (39)
St. Louis, Missouri	25 (61)
Gender
Woman	34 (83)
Man	7 (17)
Age
18–25	2 (5)
26–30	2 (5)
31–35	10 (24)
36–40	6 (15)
41–45	11 (27)
46–50	8 (20)
50≤	2 (5)
Racial background*
Black/African American	30 (67)
White	11 (24)
Asian	1 (2)
American Indian/Alaska Native	3 (7)
Socioeconomic status†
Low	32 (78)
Medium or higher	9 (22)
Insurance
Private-Employer paid	7 (17)
Private-Marketplace	2 (5)
Medicaid	29 (70)
No insurance	1 (2)
Did not state	1 (2)
Education
Graduate, professional, or bachelor’s	11 (27)
degree
Vocational/technical school	4 (10)
Associate’s degree	7 (17)
High school degree or equivalent	14 (34)
Less than high school	5 (12)
Relationship to child
Parent	39 (95)
Grandparent	2 (5)
Asthma child age/s‡
0–4	9 (22)
5–11	24 (59)
12–17	18 (44)

^*Some participants identified with more than one category. One caregiver (2%) also identified as having Hispanic ethnicity.

^†Participants were considered having low socioeconomic status if they reported not being able to pay an unexpected $500 medical bill not covered by insurance or they indicated that the statement “I really can’t make ends meet” best described their financial status

^‡Calculated as percentage of households reporting at least one child with asthma in a given age bracket. 16 families (39%) included more than one child with asthma.

^§Higher scores indicate better control. Data collection errors resulted in incomplete data for both the parent proxy asthma control test (PP-ACT).

We developed our interview guide based on the McGill Illness Narrative Interview (MINI; Groleau et al., 2006), a theoretically-driven, semi-structured interview protocol that is adaptable to specific health problems. We modified the guide to ask about asthma management, exacerbations, treatment, and the effects of asthma on everyday life. The MINI is designed to elicit three modes of representing and reasoning about illness (e.g., explanatory models, prototypes, and chain-complexes). Our guide led participants to share narrative descriptions of their child’s experience of asthma as they moved through a typical day, including the spaces they occupied. The MINI is well-suited to investigate the influences of place upon patients’ illness narratives (Groleau et al., 2010), and interviewers further queried caregivers about how triggers, symptoms, and management varied throughout time and space. We had the audio-recordings professionally transcribed and research team members checked transcriptions for quality. To ensure anonymity of caregivers and children, we removed identifiers and created pseudonyms.

We conducted analysis in NVivo 12.We constructed a thematic codebook based on our observational notes, memos, and transcript review. Then, we identified overarching themes in each interview and made connections among these themes as we continued interviewing. Once we finalized the codebook, two of four trained coders coded each transcript and discussed any discrepancies. More details about our methods and how we ensured rigor can be found in (Hunleth et al., 2020). The full interview guide and codebooks can be found at https://osf.io/ktrc5/?view_only=117d5aea27cf4b5bbb4c51cbbf05c14b

Results

The caregivers we interviewed identified asthma-related risks specific to different locations. They described closely observing how the people, structures, and physical conditions in each place affected or might affect their child’s asthma triggers and symptoms. These observations then generated emplaced knowledge. Based on this emplaced knowledge, caregivers managed risk through emplaced caregiving tactics that they devised according to the different types of places in which their children spent time. We categorize these places as houses, neighborhoods, and schools and childhood institutions to show the distinct asthma-related risks presented in these places and caregivers’ tactics to manage these risks.

1. Houses

Caregivers spoke about houses as the physical location in which they lived with their child and also the network of other houses that their child frequented. As we described elsewhere (Hunleth et al., 2020), families navigated multiple households within their networks of care that included family members like grandparents, aunts and uncles, cousins, co-parents or other acquaintances like school friends. For example, Jeff, an African-American father in St. Louis, noted that his 13 year old son Devonte spent weekends and entire summers at his grandmother’s house. Denise, an African-American mother in St. Louis, said that her daughter Summer spent much of her time living with and assisting her elderly grandmother who was prone to falling but also lived with family members who smoked inside. That is, many caregivers did not describe asthma care as restricted to one house and one caregiver. Rather they identified a more collective care (Downe, 2021) involving multiple caregivers and houses.

Caregivers identified asthma-related risks in houses by using their senses, namely sight and hearing, to identify potential asthma triggers. Many caregivers closely watched and listened to their child’s asthma in houses to develop the emplaced knowledge that features like cold and heat, dander from pets, dust, mold, pests, chemicals and second-hand smoke were their child’s asthma triggers. Caregivers then created caregiving tactics in response to these triggers that were emplaced within the socioeconomic and physical contexts of their housing environments. Rachel, a low-income, African-American grandmother in Gainesville with custody of her grandchildren, lived in a motel at the time of her interview. She was so frustrated that her landlord and city officials had not fixed the mold in her public housing apartment that she moved away to better aid her family. One of her main tactics was using air conditioning to help her children’s asthma. When she turned off the air conditioning unit, she noticed various responses in her children: “Malik starts sweatin’…Isaac will start this like dry-like cough, Sariah’s nose is probably bleedin’, and Scottie will start coughin’”. In response, she turned the air conditioning back on. She said, “I’ll freeze as long as I don’t have to go to the emergency room or call 911.” Dominique, an African-American grandmother and matriarch of four generations living in one household in St. Louis, noted smoke and chemicals as triggers for her granddaughter Trinity’s asthma. She described how her family had to “watch [what] chemicals like bleach – ammonia” they used around Trinity. Caregivers also characterized the people that could enter the house as risks because they brought with them temperature preferences, outside dust or germs, and smoking habits. Sandra, an African-American mother of ten children in St. Louis who lived in an “older house [that] dries our nasal passages”, said that her husband was “big on heat.” During her interview, she said that she could guarantee that her daughter Hannah was “layin’ in her room” and “got that window open” because her husband had the heat on.

Caregivers took great effort to socially and environmentally manage asthma-related risk in houses and felt their emplaced caregiving tactics benefitted their child’s asthma. Emplaced caregiving tactics that managed social dynamics included enforcing rules around who could and could not enter the house and restricting smoking in and around the house. Christina, an African-American mother from St. Louis who lived in an apartment building with high levels of lead, described herself as “hypervigilant” about the cleanliness of her apartment. Because her husband was an “on and off smoker,” she made him smoke far from the house and wear a “smoker’s jacket” that he would smoke in and keep outside. Other caregivers like Dominique enforced “no smoking policies” in their homes. Emplaced caregiving tactics that managed environmental elements in houses included intense cleaning, air purification, temperature regulation, and home renovation projects to manage potential asthma triggers.

The perceived benefits of these tactics reinforced their continued practice. Kimberly was an African-American mother to two children in Gainesville who managed her son’s asthma between her house, his grandmothers’ house, and his father’s house. She described how she tracked days in advance the weather shifts that affected the temperature in her home. She did this so that she could “turn the heat on and burn all that dust and stuff…that will set [his asthma] off.” She said that these actions were how she stayed “on top of [his asthma]” and that, “now, I know how to treat it. I don’t always have to run to the ER.”

While caregivers described multiple ways of managing risk in their own homes, many described social barriers to navigating asthma risks in others’ houses and structural constraints when attempting to alter their housing situations. For some higher income caregivers, discussing topics like smoking, cleanliness, and pets in other peoples’ homes could cause discomfort. For example, one caregiver said it was “hard to ask” his ex-spouse, who lived separately, questions about the dog being potential asthma triggers for their son. Helen, a white mother in St. Louis, found it easier to ask others about dogs in the house than smoking because to say “‘it seems like someone smokes in here’ - that sounds rude.” Despite discomfort, when others’ homes posed a risk to her son she said she “pull[ed] the asthma card” when explaining why her son could not enter. However, caregivers with lower incomes could not evade houses with triggers if they relied heavily on social relations for aid or if they had to manage negligent practices of landlords and inadequate public policy. Denise, a caregiver described earlier in this section, had to compromise on her daughter’s exposure to secondhand smoke in her mothers’ house for the aid her family members could provide. Tuana, a low-income, African-American mother who rented an apartment for her family in Gainesville, commented, “I can’t control mold that’s in the walls in a apartment that I moved into… he’s fine now. But soon as we go home, he’s gonna be coughin’ all over again… It’s somethin’ dealin’ with the roaches that triggers his asthma as well.”

Identifying triggers in household settings required close attention to children’s asthma symptoms in response to various household features. After noticing symptoms, caregivers did their best to manage triggers through social (e.g., household rules or communication with others) or environmental (e.g., cleaning or temperature regulation) tactics that were emplaced within the social, economic, and political contexts of their housing situations. For example, caregivers who faced more economic and social disadvantage, who in our study were more likely to be low-income African-American women, struggled to manage triggers in their housing contexts amidst poverty and structural neglect from landlords and local policy.

2. Neighborhoods

Caregivers defined neighborhoods as the public and private places outside of households. They included outdoor places like private yards, public streets and parks and indoor places like grocery stores, churches, hospitals, restaurants, indoor recreational centers, libraries, and city buses. Outdoor places meant exposure to triggers in nature like trees, grass and sunlight as well as access to big open spaces for their child to run and potentially over-exert themselves. Jeff said that when his son Devonte played outside, his asthma would come back because it meant that “He run. He just run. He just don’t never stop.” Indoor places could present triggers like bacteria or chemicals. Tasha, an African-American and American Indian mother in St. Louis, warned her daughter Kayleigh of the germs in skating rinks, asking that Kayleigh go to places like the movie theater instead where there was “good, cold air.”

Caregivers identified places in the neighborhood as risky by assessing their ability to predict or regulate other people’s behaviors. Caregivers made these assessments within the contexts of socioeconomic disadvantage at the neighborhood level. Tamira, a low-income African-American mother in St. Louis, anticipated that her son Josiah would be hospitalized for asthma in July due to other people setting off Fourth of July fireworks that “put all that smoke in the air.” She said she had no control over this trigger because even the police “hide on that day. They be scared. They don’t know if it’s gunshots…or fireworks.” Rachel said that she never knew when “a day [could] flip” from good to bad because of the constant threat of people smoking in public spaces. When they encountered someone smoking, one or more of her children could end up in the emergency room. Rachel commented that “it’s legal to smoke in the public…it’s [a] public city where smoke is everywhere, so—what are you supposed to do? Keep the kids in all the time.” Because of the risk of second-hand smoke in the neighborhood, Rachel said that her children “usually do indoor stuff.” She said that keeping the children in a “bubble” made her feel like she “gain[ed] a lotta control by keepin’ them away from bein’ exposed to [smoke].”

Environmental triggers in neighborhoods also included extreme temperatures, changes in weather, and pollen and dander that could be compounded by families’ socioeconomic conditions. For example, Amber, a low-income, African-American mother in Gainesville, said that when she and her son were outside, “pollen will come his way… in the wind, and…he’ll get more tired like faster. He’ll get more…sweated,” which scared her because they did not have a car and had to walk to get everywhere.

Avoidance was the most common emplaced caregiving tactic that caregivers used to reduce their children’s asthma-related risk in neighborhoods. For Jeff, letting Devonte outside of the house introduced the risk that he would over-exercise. The best way to prevent any health issues was to keep Devonte inside where Jeff could observe him. Outdoor risks pushed some caregivers to avoid letting their child play outside, go to parks, or attend family gatherings in favor of staying inside the home as much as possible. Dominique, whose family avoided some social events because of her daughter’s asthma, described her family’s life as “sheltered” away from social activities like barbecues and parties because of potential smoke exposure at these events.

A major barrier to caregivers’ avoidance of places in neighborhoods was that at times, these places were unavoidable due to families’ circumstances or children’s desires to visit places. When caregivers could not enforce avoidance with their child, they compromised by asking their child to only go to certain types of places, maintain awareness of their symptoms and triggers, and keep medication with them. Tuana negotiated with her son who wanted to play outside, saying “mommy can’t watch you all the time…So, if you feel like you’re too hot, you thirsty—or you can’t really breathe…you know what to do,” referring to their system whereby he notified her if he experienced asthma symptoms. Other caregivers allowed their children to go to places only if they had medication at all times. Caregivers devised strategies like creating medication bags and purchasing multiple inhalers so that the child would always have one nearby. Caregivers described teaching their child to check that they had their medications with them wherever they went.

Caregivers identified neighborhood risk based on their ability to assess environmental conditions or other people’s behaviors, and their emplaced caregiving tactics included avoidance or negotiation with their child. Social contexts of neighborhoods complicated caregiving tactics, as caregivers with fewer economic resources like Tamira, Rachel, and Amber perceived higher neighborhood risk and less control over triggers. When caregivers and children could not avoid locations, they expressed concern for their children and also worked with their children to get them to respond in certain ways to the people and triggers in the neighborhood.

3. Schools and Childhood Institutions

Caregivers spoke about schools and childhood institutions as locations that included elementary, middle and high schools, school buses, after-school programs, summer camps, daycare centers, or sports facilities. Caregivers wanted children to establish their independence in these places, a development that could both excite and worry caregivers when it came to their child’s asthma. For example, Nichole, an African-American mother to five children in Gainesville, asked her son Duncan to “be respectful that you do have asthma” and “be more conscious of what you’re doin’” when he was on the sports field, but she also said that “competition is a big part [of] our family. So…do try to push yourself”. Caregivers saw these places as full of opportunity for their children yet recognized that the opportunity came at the cost of caregivers’ absence.

Similar to neighborhoods, caregivers identified asthma-related risks in schools and childhood institutions through knowledge of other people’s behavior in these locations. These risks included other adults misunderstanding their child’s asthma attacks or children over-exerting themselves, forgetting medication, or experiencing emotional distress. Sara, a white single mother in St. Louis, identified the football field as a risky place because only she could understand the signs of her son’s asthma: “the coaches don’t know the triggers. So, I know that when he’s mouth-breathing and he slows down that he needs his inhaler, but nobody is mommy, and mommy can’t be there”. Sara felt her son faced the greatest risk of “an asthma exacerbation…on the [school] bus. Cuz [my son] could be triggered by stress.” Other risks caregivers described were environmental factors like extreme temperatures and lack of air flow. Tasha identified the classrooms at Kayleigh’s school as risky, because the temperatures were “really, really hot.” Tasha agreed that it was hard to leave Kayleigh at school, saying “I’m very overprotective because I wanna make sure that…my child come home to me.”

Caregivers managed the risks of schools and childhood institutions through several emplaced caregiving tactics. Caregivers with higher incomes reported that they avoided institutions, and when they could not avoid them they either prepared their child with medication, taught their child to communicate their symptoms to someone else, or changed elements of the institution to better meet their child’s needs. Helen used all of these tactics to manage her son Daniel’s asthma when he was at school or camp. She described herself as an “avoider” of places outside the home. She refused to enroll her son Daniel in a summer camp run by teenagers that did “not meet her comfort level.” She had less choice when it came to school events. In these situations, Helen made sure Daniel had his green medicine bag with an Epi-Pen, an inhaler, Benadryl, and an oral steroid. She also recruited Daniel’s friends with asthma to help him. They “show him where to go and where he needs to be and also take care of his asthma.” Daniel’s friends were such big influences that Helen negotiated with the school so that they were on his team during a school field trip. She said that she had “learned the system” and used this knowledge to ensure her son’s safety.

A major barrier to managing asthma in childhood institutions was lack of structural support for accommodating children with asthma, especially in under-funded schools. This was especially the case for the low-income and African-American caregivers in our study. Tasha said that school officials told her they could not make accommodations for just one child with asthma, so she told Kayleigh, “If you in class and you cannot breathe, it’s okay for you to tell them they can crack a window for you.” Kayleigh called Tasha directly whenever she experienced an exacerbation at school. Kayleigh’s teachers also had Tasha’s number on speed-dial so that they could call her in emergencies. Stephanie, an African-American mother in St. Louis, told her son Denzel to use his own medicine and call her when he had symptoms because she knew the school lacked a nurse. She said that “Even though he not supposed to have inhaler on him, he keep his inhaler on him. I mean, ain’t no nurse at the school all day anyway, so…Like, ain’t no point in tellin’ the school nothin’…they can’t help him. All they gon’ do is just call the ambulance or wait for a little while, call your mom.” Once, Denzel had an asthma attack at school but could find no school official in the administration office to help. When he called Stephanie, she advised him to call an ambulance. Because Stephanie found Denzel’s school unresponsive to his needs, Denzel managed his symptoms on his own most days, and in this event even called his own ambulance to the school.

Schools and other childhood institutions caused stress for caregivers because they could not be present in these locations or rely on their emplaced knowledge to protect their child. Caregivers’ emplaced caregiving tactics involved navigating emotions surrounding distance from their child and teaching children how to manage triggers and symptoms on their own. Caregivers with more resources, like Helen, were more successful at working with institutions to meet their child’s needs, whereas caregivers like Stephanie, whose children attended underfunded institutions, faced resistance from staff and had to informally adapt to the failures of these institutions manage their child’s risk. Caregivers’ emplaced caregiving tactics in schools and other childhood institutions considered their increased fear for their child’s safety, their child’s ability to reproduce these tactics, and the structural conditions of these institutions that could facilitate or impede the implementation of these tactics.

Discussion

Through examining asthma-related risk within the lens of place, we expand the study of asthma-related risk of external triggers (such as pollen, dust, mold, smoke, weather changes, and airborne chemicals; Camargo and Rowe, 2009) and how these triggers are distributed unequally in cities like St. Louis and Gainesville (Harris, 2019; Well Florida Council, 2016). In particular, we examined how caregivers drew on emplaced knowledge and caregiving tactics to inform the ways they cared for their child’s asthma risks. Caregivers’ emplaced narratives indicate that asthma-related risk cannot be separated from the power dynamics, institutional policies, and physical characteristics, as well as the relationships, emotions, and social norms that shape place (Low, 2016; Pink, 2011). Similarly, recognition of emplaced caregiving tactics broadens emplacement theory’s typical focus on interactions between individual bodies and their physical environments by centering how caregivers of children with asthma manage, with their children, the relations, structures, and conditions that form health risks to their child. Caregivers in our study used these tactics within a range of structural injustices and spatial inequities that heightened their child’s asthma risk. Analysis of their emplaced knowledge and caregiving tactics offers more detailed insight into how they did so on a daily basis in houses, in neighborhoods, and in schools and other institutions that children frequented.

Caregivers reckoned with the social and environmental conditions that shaped how they moved through, felt about, and claimed control over various places to manage their child’s asthma-related risk. In houses, researchers have identified the physical triggers and emotional stressors that can exacerbate asthma (Northridge et al., 2010; Sandel & Wright, 2006). Caregivers went beyond recognitions of these triggers as they described in depth their emplaced knowledge of asthma risk in their houses and other houses where their children went, both with and without them. Caregivers exerted considerable energy when managing asthma-related risks in houses and perceived tangible benefits of their tactics. Kimberly, for example, associated her adaptations with reduced need to take her children to the ER. However, we have also shown that caregivers like Tuana struggled to manage risk in their houses and the houses of others that resulted from negligent landlords and inadequate governmental policies. Emplaced caregiving tactics, then, could look like cleaning extensively while dealing with mold or treating symptoms when a caregiver could not prevent a child’s exposure to triggers in the houses of family members or co-parents. Such emplaced knowledge and caregiving tactics are connected to the histories of racist policies and systemic disinvestment that disproportionately affect African-American communities. Caregivers like Tamira and Rachel tied triggers in their neighborhoods to similar factors related to structural racism and other injustices that shaped where they lived, reinforcing research findings that show that violence (Wright & Steinbach, 2001), food deserts (Preston et al., 2016), and weakened community networks (Wright & Fisher, 2009) worsen children’s asthma outcomes in disadvantaged neighborhoods.

While caregivers did much to control the environments in their houses or avoid places in the neighborhood by keeping children inside, they often could not control or avoid schools. Their emplaced knowledge of their families’ complex emotional processes and schools’ institutional structures shaped how they adapted to schools to manage their child’s asthma-related risk. Even in circumstances of extreme structural disadvantage, caregivers like Stephanie, who bypassed all school structures due to lack of support, cobbled together ways to mitigate risk – either with or without the cooperation of other institutional actors. For example, in schools lacking sufficient funding, caregivers used creative tactics like contacting their child or teachers directly by phone like Tasha, or encouraging their child to keep an inhaler on hand like Stephanie. Within schools, caregivers’ opposing desires to constantly monitor their child and foster their child’s independence also influenced caregivers to promote children’s self-management. The literature on managing asthma risk in schools focuses mainly on identifying possible triggers at school and lowering children’s absences (Sfezler, 2009). Our results indicate that such a limited scope on asthma-related risk management overlooks how caregivers manage asthma-related risks within institutions and their feelings while doing so.

Across houses, neighborhoods, and schools, caregivers expressed that they could not always control the physical or social features that put children at risk. This led caregivers to depend on their children to manage their asthma in places that caregivers could not enter or in situations where caregivers would have to break social norms to alter others’ behaviors by, for example, asking an adult to stop smoking. In our research with children, we have shown how children co-produced asthma management practices with caregivers and a range of other adults (Spray & Hunleth, 2022). Such interdependence between children and their caregivers merits further research on children’s emplaced care tactics and how emplaced knowledge and tactics are shaped by interdependencies between children and their caregivers.

Caregivers’ emplaced knowledge involved trade-offs and compromises. One caregiving tactic could keep children safe from some triggers while introducing other types of risk. For example, keeping children indoors helped them avoid triggers like second-hand smoke or pollen, but exposed children to other triggers, such as mold and pests that could not be cleaned away because they were products of larger structural neglect. Likewise, caregivers could not keep children out of school or away from the houses of relatives or co-parents where there were potential triggers, and in these places they could neither observe their child’s condition nor effect changes in the environment. Such tactics and compromises point to the critical need for multi-level solutions that incorporate both individual and systemic risk reduction and that acknowledge and address the failures of social, economic, and political systems that leave asthma caregivers and their children to mitigate risk on their own.

Implications and Future Directions of Emplaced Caregiving and Risk

As we have shown, the places where caregivers identified asthma risk are not just points on a map but rather meaningful, dynamic, and potentially dangerous locations that alter their child’s lives. Past studies have identified the unequal distribution of asthma-related risk across large geographic regions (Guidry & Margolis, 2005; Harris, 2019; Pereira et al., 2010; Gale et al., 2011). Studies have also focused heavily on individuals’ beliefs and behaviors related to asthma (Diamond & Chapman, 2001; Butz et al., 2005; Geryk et al., 2017). Our study integrates these findings to address the interaction between the systems that shape the spatial distribution of asthma-related risk and personal conceptions of place, and we consider how people devise caregiving tactics to care within larger spatial inequities. Emplaced understandings of risk and caregiving can help stakeholders target both individual and structural factors when developing asthma interventions that are more consistent with families’ everyday lived experiences.

The participants in our study sample helped us understand the experiences of caregivers who are the least well-placed to overcome asthma-related risk brought about by place and structure: caregivers who society has marginalized due to their race, gender, and socioeconomic status. Their caregiving tactics suggest several actions. For example, when addressing household asthma-related risk, medical providers can discuss—rather than dismiss— caregivers’ emplaced knowledge to better understand the tactics and compromises they are making and then collaboratively create Asthma Action Plans with families. In response to the structural barriers faced by caregivers in houses and neighborhoods, stakeholders could create medical-legal partnerships that advocate for equitable housing policy in their area (Zuckerman et al., 2004). Our findings further reinforce the need for increased funding for school nurses and revised policies allowing children to carry their asthma medication with them in school. Our findings also support broader creation of safer public spaces that will benefit children with and without asthma to address violence, pollution, and other environmental injustices that shape emplaced knowledge.

We note that a limitation in our study was our slim findings on how caregivers navigated air pollution, which we know was likely an issue in their neighborhoods. This was possibly due to conducting interviews outside of participants’ neighborhoods and homes. Carrying out interviews and observations in neighborhoods, houses, and schools would likely offer even more nuanced insights into emplaced knowledge and caregiving tactics related to environmental injustices. Such observational research would also extend our finding that caregivers’ emplaced caregiving tactics depended on children’s actions. We recommend future research on the emplaced caregiving tactics of caregivers in different environmental or social contexts (e.g. in rural areas or in communities with distinct language barriers or cultural practices) as well as those of children to further broaden this field of research, given that we know that children’s understandings of place can vary greatly from their caregivers’ understandings (Ansell et al., 2012; Hunleth, 2017),

Conclusion

In this article, we have shown that caregivers’ emplaced knowledge and caregiving tactics for asthma-related risk responded to the structural racism and environmental injustice that has shaped the geography of St. Louis and Gainesville. Understanding asthma-related risk and caregiving tactics as emplaced has practical and theoretical benefits. Situating families within their socioeconomic and physical environments indicates the need for multi-level interventions and extends emplacement to include the relational and structural components of risk and caregiving. These findings ultimately support efforts to aid, rather than blame, caregivers who are left to handle asthma care largely on their own. Caregivers who managed their child’s asthma-related risk in the face of spatial inequities did not passively experience risk but went to great lengths to actively alter the world around them, efforts which deserve support in the form of structural change that mitigates the unequal distribution of asthma-related risk.

Highlights.

• Caregivers understand risks to their child’s asthma differently according to the places they and their child occupy in their day-to-day lives

• Caregivers’ understanding of asthma-related risk varied across three types of places: (1) houses, (2) neighborhoods, and (3) schools and other childhood institutions

• Caregivers used emplaced knowledge and caregiving tactics to identify and manage asthma-related risks in these places

• The relational and structural conditions that caregivers and their child encountered in each type of place critically influenced their emplaced caregiving tactics

• Emplaced understandings of asthma-related risk are essential for stakeholders to creating interventions that better match families’ everyday lived experience of place