Black Emerging Adults with Uncontrolled Asthma: a Qualitative Study

Abstract

Rationale:

Asthma morbidity and mortality are disproportionately high in African Americans, especially in emerging adult (AAEA) population (age 18 to 30 years) and are between adolescence and adulthood. Few studies have been done to identify unique challenges to asthma care in Black emerging adults.

Objective:

To assess the challenges and barriers to asthma care AAEA experience

Methods:

We conducted virtual focus groups consisting of Black young adults (n = 16) with a physician diagnosis of asthma. Discussion questions regarding asthma triggers, management, and challenges were used. Focus group discussions were recorded and transcribed verbatim. The transcripts were then coded by three coders using a thematic saturation approach.

Results:

Seven major domains were identified: heightened anxiety around asthma management; asthma symptoms interfering with school and/or work; asthma in social group setting; transitioning to adulthood leading to increased autonomy and financial independence; use of technology in asthma management; concerns regarding Covid-19; and perceived discrimination and biases. These domains create complex barriers to optimal asthma management and overlapping elements were identified. Technology was described as a potential method to address these challenges.

Conclusion:

Black emerging adults with asthma have unique challenges due to age and race. Physicians should address these challenges through innovative means such as technology-based interventions.

Introduction

Asthma is a chronic respiratory disease that affects people of all racial, ethnic, and age groups. However, asthma disproportionally impacts minoritized populations. Black individuals have a higher prevalence of asthma, a three-times greater mortality rate, and a nearly five-times greater emergency department visit rate when compared to White individuals.^1–3 Multiple factors that impact health can lead to inequities in asthma outcomes. These include social (economic stability, access to health care, level of education, living condition), structural (racism, residential segregation, explicit and implicit bias), biological (genetic polymorphisms), and behavioral (treatment compliance, existing beliefs of asthma, medical mistrust) factors.^3,4

The emerging adults (age 18 to 30 years) with asthma face unique challenges. While undergoing cognitive, emotional, and psychosocial transitioning from adolescence to adulthood, they often are presented with increased responsibilities: responsibility for their own medical care, financial independence, education, employment, and care-taking roles for family members.⁵ Prevalence of mental illness and substance abuse is significantly higher in young adults compared to older adults, making this life stage more vulnerable to poor health outcomes.⁶

There has been little research specifically addressing the challenges, barriers, and goals that African American emerging adults (AAEA) with asthma face.⁷ We conducted focus groups with AAEA with asthma to further understand the unique challenges and barriers to asthma care and its impact on their lives.

Methods

Participants

At two academic medical centers, a total of sixteen self-identified Black adults aged 18 to 30, who had been diagnosed with persistent, uncontrolled asthma were recruited for the study. Interested individuals indicated their willingness to participate voluntarily, and no socioeconomic or additional demographic characteristics were used during recruitment. Uncontrolled asthma was verified through an Asthma Control Test (ACT) score of 19 or less. Persistent asthma was defined as the use of a daily asthma controller medication. For focus group research, a sample size of 16 to 24 interviews is considered sufficient to reach meaning saturation and develop richly textured understanding. Participants were not eligible for participation if they were not fluent in English; had a thought disorder (e.g., schizophrenia or autism), cognitive impairment (e.g., intellectual disability); or had another major chronic health condition requiring ongoing medical intervention.

Participants completed a survey with demographic questionnaire. All participants provided verbal consent to participate. The study was approved by the institutional review boards at the University of Michigan and Wayne State University.⁸

Focus Group Design and Data Collection

A research team consisting of 2 allergy/immunology physicians and 2 behavioral research scientists with previous experience in conducting focus groups with the Black population with asthma developed a list of open-ended questions to guide the discussions (E1: Online Repository Text). The questions were developed based on a review of the asthma literature regarding Black and young-adult populations with asthma. The questions were designed to encourage discussion around the effect of asthma on their lives, asthma triggers and flares, asthma medication usage and compliance, concerns about Covid-19 and the Covid-19 vaccine, experience at the doctor’s office, and their preference for asthma management using technology-based tools.

Focus groups were conducted from March to April 2022. Each focus group consisted of 4–6 participants. One facilitator led each focus group, and groups met virtually on Zoom for approximately 1.5 to 2 hours. The facilitator clarified unclear questions/answers, encouraged spontaneous discussions among participants, and gave opportunities for everyone to share their thoughts including the less-vocal members of the groups. No physicians were present during the focus group sessions. Each meeting was recorded, then was transcribed verbatim. Each participant received a $100 Amazon gift card as an incentive after participation in the focus group.

Analysis

Consistent with the best practices regarding coding of qualitative research data⁹, an interdisciplinary team of three coders was formed to review the transcripts. The team consisted of one physician who did not participate in the focus group discussions and 2 research assistants. NVivo 1.6.1 (QSR International, Doncaster, Victoria, Australia) was used for qualitative data analysis. The three coders read the transcript from the first focus group session independently and identified categories and themes that emerged from the response of the participants. Coders then convened to compare their individual coding categories and themes. They reviewed each category of response and resolved any difference in coding via discussion. The same process was repeated for all three transcripts. When new categories of responses were identified, they were added to the grid of codes only after all coders had reached agreement. A final coding list was established after consensus was made between the three coders. This coding list was used to code the three transcripts again. After all transcripts were coded for the second time, the themes and categories were categorized into 7 domains.

Results

A total of 16 AAEAs with asthma participated in the focus groups. Table 1 shows the demographic characteristics of the participants. Seven distinct domains were identified in focus group discussions. These domains (summarized in Table 2), supported with various direct quotes or paraphrases, are listed below.

Table 1.

Characteristics of participants (n = 16)

Age (y), mean ± SD	25.3 ± 3.0
Sex, n (%)
Male	6 (37.5)
Female	10 (62.5)
Currently working, n (%)	14 (87.5)
20–39 hours a week	9 (64.3)
40 or more hours a week	5 (35.7)
Total income per month, n (%)
500–1000	4 (25.0)
1000–2000	2 (12.5)
2000–3000	4 (25.0)
3000+	4 (25.0)
Level of education, n (%)
High school or less	4 (25.0)
Technical education/Some college	5 (31.3)
College degree or higher	7 (43.8)
Have children, n (%)	5 (35.7)
Lives with (multiple answers allowed)
No one	1 (6.3)
Parents (Biological/adoptive/foster)	5 (31.3)
Friends or partner	9 (56.3)
Children or other relatives	5 (31.3)
Asthma diagnosis
≤5 years of age	8 (50.0)
5–10	3 (18.8)
10–18	2 (12.5)
Asthma medications
SABA only	1 (6.3)
Montelukast	1 (6.3)
Daily ICS	5 (31.3)
Daily ICS + LABA combination	5 (31.3)
Daily ICS + LABA + LAMA	3 (18.8)
Controller medication compliance
≤ 50%	3 (18.8)
50–90	4 (25.0)
≥ 90%	7 (43.8)
Seen by specialist (Pulm/A/I)	5 (31.3)
Oral prednisone use in the past 12 months	7 (43.8)
Asthma ED visits in the past 12 months	4 (25.0)
Asthma hospitalization in the past 12 months	1 (6.3)

A/I, Allergy/Immunology; ED, emergency department; ICS, inhaled corticosteroid; LABA, long-acting beta agonist; LAMA, long-acting muscarinic antagonist; Pulm, Pulmonology; SABA, short-acting beta agonist; SD, Standard deviation;

Table 2:

Major domains identified in focus groups with Black young adults with asthma

Domain		Descriptors
I.	Heightened anxiety around asthma management	Anxiety as an asthma comorbidity Being hyperaware of asthma triggers and different ways to manage them Overcompensating anxiety by taking extra measures Anxiety about managing asthma in unsafe/unpredictable environment
II.	Asthma symptoms interfering with school and/or work	Hindrance to completing tasks leading to quitting jobs or dropping out of school Challenge with commuting using public transportation Hesitancy about disclosing asthma at work due to fear of being discriminated against
III.	Asthma in social group setting	Delay in seeking medical care to avoid burdening others Involving family and friends in their asthma management plan Feeling frustrated by lack of social/family support
IV.	Transitioning to adulthood leading to increased autonomy and financial independence	Difficulty affording medications and figuring out ways to deal with limited resources Learning to manage asthma on own and increased noncompliance as a result Change in perspective on asthma management due to pregnancy or their children
V.	Use of technology in asthma management	Using technology to check weather to prevent asthma triggers or set reminders to take medications Using telemedicine (virtual visit and online patient portal) for asthma care
VI.	Concerns regarding Covid-19	Fear of getting Covid-19 Concerns regarding Covid-19 vaccines Asthma care negatively affected by Covid
VII.	Perceived biases and stereotypes	Experiencing subtle or overt racism from medical provider

Domain I: Heightened Anxiety around Asthma Management

Multiple study participants reported that anxiety can exacerbate their asthma symptoms. Specifically, panic attacks and exposure to high-anxiety situations were identified as potential triggers of asthma exacerbations. Additionally, participants noted that anxiety symptoms can be misinterpreted as an asthma attack.

• -My anxiety attack leads to an asthma attack.
• -I feel like I’m having an anxiety attack, but they are not anxiety attacks, this is my asthma acting up.
• -In current climate period, just anything on the news can trigger your asthma.

Participants reported hyper-awareness of their surroundings and anxiety about managing triggers like weather changes, dust, and pets. They also expressed anxiety about encountering unforeseen triggers that could disrupt daily activities. Most reported anxiety about having access to inhalers when needed, leading to overcompensation behaviors like carrying multiple inhalers or storing them in different locations for easy access.

• -My birthday is in the spring, and I hate it because I can’t even sit with the windows open.
• -I’m constantly afraid that there will be a bad day for my asthma that I’m not prepared.
• -Anytime I travel, I have 4 inhalers: one in my purse, one in my pocket, one at work, and one wherever else, because I’m so worried.

Participants expressed safety concerns in their neighborhood that could affect asthma management, including the need for back-up plans in case of emergencies like burning houses or shootings.

• -I live where people set fires to houses constantly. It’s a threat to step outside and take a breath.
• -I gotta figure out if something happened, like if somebody starts shooting, and I need to figure out where I’m gonna run to because I can only run so far.

Domain II: Asthma Symptoms Interfering with School and/or Work

Many participants shared examples of asthma preventing them from completing school and/or job responsibilities. They reported encountering asthma triggers in classes, at work, or during their commute. Many felt dissatisfied by the inadequate accommodation for their asthma symptoms at work/school, and some, as a result, quit or switched jobs.

• -Unfortunately, asthma caused me to be in academic probation.
• -I had to quit my job when I worked in the produce aisle constantly going from hot to cold.
• -Because I take the bus to work, and my asthma is triggered by cold, I often have to call off work.
• -These jobs don’t care for y’all. My manager said that they don’t accept doctor’s notes saying I can’t do physical labor because of asthma.

Several participants indicated reluctance to reveal their medical history during the job application process due to concerns about potential discrimination based on their asthma history. Many also expressed frustration with the limitations that asthma imposed on their employment prospects.

• -I choose to not disclose [my asthma] because they can find any reason to justify that I’m not a good fit at any moment.
• -I can’t work a lot of jobs because most desk jobs require a degree, and I don’t have the degree yet.

Domain III: Asthma in Social Group Setting

Several participants acknowledged feeling like a burden on their families and friends, sometimes resulting in delayed seeking of medical treatment during asthma exacerbations. Some participants were able to actively involve family members or significant others in the management of their asthma.

• -I didn’t go to the ED when I had symptoms because my dad was going to be doing a lot.
• -My friends don’t have asthma. I feel bad because they slow down for me. It makes me feel like a dead weight sometimes.
• -I’m starting to show my children where my stuff (inhalers), so if I can’t get to it they can get to it.

A number of participants reported a lack of support from their friends and relatives. Some reported frustration regarding their loved ones’ inadequate understanding and support despite having witnessed their lifelong struggles with asthma.

• -Since I’m the only one in my family with asthma, I don’t think that they’ve ever taken the time to think about how chronic of an illness this is.
• -My family kind of helps, but I feel like they help to avoid me interfering with their fun. Y’all try to accommodate me but y’all are more accommodating of yourselves than accommodating me.

Domain IV: Transitioning to Adulthood Leading to Increased Autonomy from Parents and Financial Independence

Transitioning to adulthood comes with the responsibility for financial independence. Many participants reported having difficulty affording their asthma medications and/or acute asthma care (ED/Ambulance). Participants commented on having to come up with different ways to compensate for their lack of financial resources.

• -Cost is like my biggest enemy. I would rely on my mother for medication, or I would just cut back on medications.
• -I don’t go to ER because I don’t have insurance unfortunately. Every time I go, I’d have to pay out of pocket. I stay home, call off work, and take my nebulizer every 2 hours.
• -I was out of prednisone, so I just drank a big cup of coffee to feel better instead.

Even though some participants reported the severity of their asthma improved when compared to childhood, many noted struggling to manage their asthma due to the lack of family involvement and accountability they used to have in their childhood. Participants stated they were learning to be more aware of their asthma triggers and understand how to prevent asthma flares. Some of the female participants stated that change in perspective came about from pregnancy or their children.

• -As an adult I am forgetful with my medications, but as a kid I relied on my mom to remind me.
• -I think I had a better relationship with doctors as a child only because my mom was responsible for taking me to the doctors.
• -I have an understanding of my asthma as a grown man now that I didn’t have as a teenager.
• -I got pregnant, and I’m now worried that asthma flare-up will impact my children and their growth.

Domain V: Use of Technology in Asthma Management

Most participants reported using their smart phones to check weather, air quality, and pollen counts before going outside to prevent asthma symptoms or to set reminders to take medications. Two participants reported positive experiences with telehealth for their asthma management due to the convenience of having easy access to their asthma care providers, though this was not mentioned by all participants.

• -I go off the weather app before I even step out the house to determine if I might need to use my inhaler or if I just need to stay in for the day.
• -It [online portal] has been the best thing for me. It lets me interact with my doctor anytime, anywhere.
• -He [asthma doctor] switched to virtual visits. I prefer that because his office is really far.

Domain VI: Concerns Regarding Covid-19

All of the participants were fearful of contracting Covid-19 given their underlying lung disease. Some participants found it challenging to manage asthma during the pandemic because of limited access to inhalers and their asthma care providers. Many participants also shared their apprehension about the possible side effects of Covid-19 vaccination.

• -If I get Covid, I’m not going to make it because it’s a respiratory illness.
• -During the pandemic, I could not get a hold of inhalers; they wouldn’t have them in stock.
• -My doctor wouldn’t see me because I was not vaccinated.
• -I was scared of the vaccine giving pneumonia, honestly, and I definitely have not had the [Covid-19] vaccine.”

Domain VII: Perceived Biases and Stereotypes

Some, but not all, participants recounted a bad experience with a provider where they experienced racism. Examples include instances where their asthma exacerbation was mistaken for substance use and asthma care providers made comments about their weight.

• -I was having an asthma attack. The doctor asked me if I did any drugs like crack. They didn’t ask about anything else but crack, and it made the situation tense because I was black, and he was white.
• -I had rude doctors commenting on my weight like “you need to lose weight, but we are going to put you on prednisone for asthma.”

Discussion

This study aimed to identify specific barriers and challenges that contribute to the persistent asthma disparities observed among the Black emerging adults. We utilized the focus-group methodology to identify the specific experiences and challenges AAEAs face in achieving optimal asthma control, as group interaction can allow each participant to consider their own views more fully.¹⁰ Seven major themes emerged from the study, highlighting areas that are both similar and different from other populations of individuals with asthma. Although some themes such as anxiety, autonomy, and work requirements can affect care for young adults with asthma of all races, others appeared specific to Blacks.^11,12

The study participants described various social determinants of health impacting asthma care that are more commonly observed among Black young adults such as unsafe environments, limited access to transportation, discrimination by medical providers, and financial instability. Blacks are more likely to reside in low-resourced neighborhoods and experience a higher rate of community violence.¹³ The study participants reported that exposure to neighborhood violence such as a neighboring house set on fire can exacerbate asthma symptoms and increase anxiety. Additionally, Black households are less likely to own personal vehicles, which can increase exposure to outdoor asthma triggers such as diesel exhaust on public transportation, contributing to missed work or school.¹⁴ Discrimination by a medical provider is another factor affecting care described by the study participants, with specific examples of suspicion of substance use and inappropriate comments regarding weight. Perceived discrimination in healthcare is prevalent, affecting as many as 10.9% of the Black population and can contribute to medical mistrust.^15,16 Financial instability affects young adults and can hinder their ability to afford medical bills or obtain medical insurance, and was prominently highlighted in our focus groups. Physicians can play a crucial role in advocating for patients by identifying specific factors and addressing socioeconomic needs in addition to medical needs.^4,17

The elements present in different domains do not exist in isolation but rather overlap with one another (Figure 1). Anxiety, discussed in Domain I, emerged as a recurring concern across the other domains and was associated with inadequate support from family members (Domain III), job insecurity (Domain II), and increased financial responsibility (Domain IV). This life stage is transitional and characterized by evolving responsibilities in one’s personal and professional lives, leading to higher levels of anxiety compared to other age groups.¹⁸ Participants also shared their anxiety worsening during the Covid-19 pandemic (Domain VI). Additionally, emerging adults’ pursuit of autonomy and financial independence, as discussed in Domain IV, had implications for their asthma management in work/school (Domain II) and social relationships (Domain III). Instances of perceived racial bias (Domain VII) were observed to correlate with participants seeking medical attention as independent adults and influencing their perceptions of how others viewed them. This demonstrates the overlap of Domain VII with Domains IV and III. Because of the intricate interplay of different domains, as well as the social determinants of health previously described, a comprehensive evaluation may be necessary to provide the most effective asthma care.

Figure 1.

Venn diagram representing overlap/interplay of the challenges shared in different Domains affecting overall asthma management in Black emerging adults

The study participants shared various strategies used to manage asthma care challenges such as educating their children on the location of their rescue inhalers and using alternative remedies when asthma medications were not available. The study also demonstrated the potential for technology to address some of these challenges. Participants in the study reported using their smartphones for many aspects of asthma management, such as setting medication reminders and checking outdoor allergen levels. Additionally, participants shared positive experiences with telemedicine, including using online portals and virtual visits to communicate with their asthma doctors. These telehealth options were particularly beneficial for those with transportation challenges. Young adults are familiar with the use of virtual classes, social media, and smart devices like watches and home assistants. Technology may therefore be leveraged to provide practical solutions to some of the challenges identified in the study¹⁹ while other barriers such as financial instability and racism in health care will require different approaches.⁴

An area of concern identified in this study dealt with Covid-19. While most participants expressed fear of contracting Covid-19 because of its respiratory nature, they had split views on the Covid-19 vaccine. One prevalent reason for vaccine hesitancy was their belief that the vaccine could cause illness. During the initial months of the Covid-19 vaccine rollout, a lower rate of vaccination was observed among the non-Hispanic Black population (46.3%) in comparison to the White population (59.0%).²⁰ The reasons for this disparity are likely multifactorial and may include issues such as vaccine access and hesitancy. A survey study focused on unvaccinated Blacks identified younger age as a specific characteristic associated with vaccine hesitancy, and this was attributed to a lack of trust in the medical system and a general lack of confidence in vaccines.²¹ Further studies are necessary to understand the reason behind the higher prevalence of vaccine hesitancy among both the Black population and younger age groups to identify effective strategies to increase vaccine rates for preventing preventable diseases.²²

The study had several limitations. Participants were exclusively recruited from academic centers and maximum variation sample was not intentionally constructed, potentially limiting the generalizability of findings. The absence of a control group may limit direct comparisons with individuals of other races/ethnicities. The lack of respondent validation and utilization of focus group methodology could introduce inherent biases based on participants’ perspectives and experiences.

In conclusion, this study highlights the barriers and challenges that impede optimal asthma control among Black emerging adults. Addressing these challenges will require a multifaceted and interdisciplinary approach. Technology can play a pivotal role in overcoming some of the barriers faced by this population. Further research is needed to identify and develop technological tools that have the potential to improve asthma outcomes in this vulnerable population, as well as identifying additional strategies required to improve health equity.

Highlights Box.

1. What is already known about this topic?

Black emerging adults with asthma experience unique challenges, which may lead to poor health outcomes.

2. What does this article add to our knowledge?

Using focus-group methodology, this study identifies barriers to optimal asthma care in Black emerging adults related to anxiety, technology use, Covid-19, and racism.

3. How does this study impact current management guidelines?

Achieving optimal asthma control in Black emerging adults will require a multifaceted and interdisciplinary approach, with technology potentially serving as an intervention to overcome health disparities.

Abbreviations

AAEA

African American Emerging Adults

ACT

Asthma Control Test

Covid-19

SARS-CoV-2 Disease

ED

Emergency Department

ICS

Inhaled Corticosteroids

LABA

Long-Acting Beta Agonist

LAMA

Long-Acting Muscarinic Agonist

Pulm/A/I

Pulmonology/Allergy/Immunology

SABA

Short-Acting Beta Agonist

SD

Standard Deviation