Children's and adolescents’ descriptors of asthma symptoms: An integrative review

Abstract

Background

Accurate assessment of asthma symptoms is central to appropriate treatment and management; however effective communication about symptoms−how it is perceived and reported−remain challenging in pediatric clinical and research settings.

Objective

To synthesize the existing pediatric literature on children's and adolescents’ word descriptors of asthma symptoms.

Methods

In this integrative review, we systematically searched Cumulative Index of Nursing and Allied Health Literature and PubMed databases to identify original research studies from 1980 to 2021 on children and adolescents’ word descriptors of asthma symptoms.

Results

The search yielded 2,232 articles, of which 21 studies met the eligibility criteria. Scientific literature focused on children and adolescents’ descriptions of asthma symptoms are limited. In addition to standard asthma symptom terminology (e.g. cough, wheeze, chest tightness, shortness of breath), pediatric populations used nonstandard word choices to describe the asthma symptom experience. Children and adolescents used a variety of affective (e.g. ‘helpless’, ‘afraid of dying’) and sensory words (e.g. ‘pressure in chest’, ‘tightness, lungs feel shut’) to describe the phenomena. Literature examining race differences in word descriptors in pediatrics is limited; thus it is unclear if word descriptors vary by race or ethnicity. Evidence of relationships between descriptors and gender and age are also lacking.

Conclusions

Our review elucidates gaps in the literature regarding the full extent of the language common to racially and ethnically diverse samples of children and adolescents. Further research is warranted to help clinicians and researchers query children and adolescents’ experience of asthma symptoms.

What is already known about the topic?

• •Effective treatment and management of asthma are dependent on accurate assessment of asthma symptoms.
• •The assessment of asthma relies on communication between the assessor and the individual experiencing symptoms.
• •Inadequate patient-clinician communication about asthma symptoms has been associated with poor outcomes among pediatric patients.

What this paper adds?

• •Children and adolescents use both standardized and unstandardized language to characterize their subjective experience of asthma symptoms.
• •This review demonstrates thatTable 1 children and adolescents use a variety of affective and sensory words to describe asthma symptoms.

Table 1.

Word descriptors of children and adolescents.

Primary author	Study location	Sample size	Year	Race/Ethnicity	Age (y)	Word descriptors	Significance based on race/ethnicity
Yoos et al.	USA	n = 201	2005	Black White Hispanic Other	5–12 years	Descriptors of asthma: Cough, nighttime cough, wheeze, shortness of breath, chest tightness ‘pressure in chest’, ‘chest hurts’, ‘elephant on my chest’, ‘lungs closing up’, ‘gasping for air’, ‘can't breathe’, ‘chest caves in’, Nonpulmonary symptoms: headache, stomachache, joints ache, muscle ache, heart beating fast, vomiting, fingers are numb, heart hurts, runny nose, stuffy nose, sneezing, mucus, itchy throat, tight throat, throat hurts, throat clearing	Nonpulmonary symptoms and symptoms of emotional distress were reported more frequently in Black versus White children (p = 0.07)
Harver et al.	USA	n = 100	2011	Black White	8–15 years	Descriptors of breathlessness: ‘my chest feels tight’, ‘I feel out of breath’, ‘my breathing is heavy’, ‘I cannot get enough air’, ‘my breathing requires work’, ‘my chest feels constricted’, ‘my breathing requires effort’, ‘my breath does not go in all the way’, ‘I feel hungry for air’, ‘my breathing is shallow’, ‘I feel that my breathing is rapid’, “I feel I am breathing more’, ‘My breath does not go out all the way’, ‘I feel that I am smothering’, ‘I feel that I am suffocating’	No differences based on race
Carrieri et al.	USA	n = 39	1991	Not reported	7–13 years	Descriptors of dyspnea: ‘wheezy’, ‘short of breath’, ‘out of breath’, ‘tight’, ‘it is hard to breathe’, ‘can hardly breathe’, ‘fighting to get air in and out’, ‘can only get a little in’, ‘tightness, lungs feel shut’, ‘stomach hurts’, ‘throw up easy’, ‘hurting’ stuffiness’, ‘uncomfortable’, ‘tired’, ‘heart beats fast’, ‘hot’, ‘heavy’, hurts’, ‘sick’, ‘suffocating’, ‘dizzy’, headache’ ‘hot’, ‘can't think’ Emotional responses: ‘grumpy’, ‘tired’, ‘angry’, ‘scared’, ‘worried’, ‘afraid of dying’, ‘mad’, ‘rotten’, ‘feeling tired’, hazy’, ‘dark’, ‘sad’, ‘annoyed’, ‘miserable’, ‘clogged like a sink’, ‘you're in knots and it's hard to get things’, ‘mostly sluggy and sluggish’, ‘it's like hanging off a cliff with just your fingernails’	Not reported
Houle et al.		n = 35	2010	African American	12–16 years	Descriptors of wheeze: ‘like a little whistle’, ‘squeak’, ‘your chest gets tight, and when you breathe, it's like, not full’, ‘coughing really, really bad and not being able to breathe’, ‘trouble breathing…like it will sound like something squeaking’, ‘sneezing’, ‘feeling dizzy’, ‘…I thought that coughing was wheezing’	Not applicable
Rhee et al.	USA	n = 29	2014	Black White Other	13–17 years	Cough, wheeze, shortness of breath, chest tightness, chest pain and congestion Nonpulmonary descriptors: chest/back/side pain, feeling ‘hot’, throat pain, mucus, headache, ‘itchy’ lungs, cold, dizzy, itch in lungs Emotional responses: ‘tiredness’, ‘afraid’, ‘panic’, ‘challenging’, ‘difficult’, ‘frustrated’, ‘scared’, ‘sad’, upset, ‘like crap’, ‘no big deal-used to it’, ‘relaxed’, ‘calm’, ‘good’, ‘OK’, ‘calm’, ‘good’	Not reported
Lebowitz et al.	USA	n = 58	1980	Not reported	11–17 years	Respiratory symptoms: Hard to breathe, short of breath, wheezy, rapid breathing, chest congestion. Other descriptors: uncomfortable, chest tightening, chest pain, chest filling up, no energy, coughing, choking, sleep poorly, numb, excited, angry, tense, scared, frightened, worried, nervous, heavy legs, lonely, worried about myself, don't care about things, worried about the attack, concerned about asthma, vigorous, feel isolate, irritable, furious, nauseated, excited, angry, tense, unhappy, afraid of dying, afraid of being left alone, feel ignored, concerned, feel pressured, feel helpless, jittery, frustrated, stuffy nose, sweating, itchy skin, short tempered, edgy, anxious, jumpy, shallow, upset, tense muscles, feel dull, dizzy, cranky, hazy, itchy throat, feel tingly in spots, tired, worn out, fatigued, weak, exhausted, sleepy, limp, sneezing.	Not applicable
Mammen et al.	USA	n = 14	2017	African American Bi-racial Caucasian Hispanic/ Latino	13–17 years	Asthma symptoms: Cough, wheeze, hard to breathe, chest tightness, short of breath, clearing throat, tired, chest pain	No differences between African American, Hispanic/Latino and Caucasian teens
Globe et al.	USA	n = 16	2015	White Black/African American Asian/Pacific Islander Hispanic/ Latino	≥12 years	Wheezing, coughing, chest tightness, shortness of breath, fatigue, dizziness, lightheadedness	Race differences not stated
Peterson & Sterling	USA	n = 10	2009	African American	9–12 years	Metaphors: ‘asthma, you know, stings like a jellyfish’, jellyfish ‘wraps tentacles around your neck’, ‘it seems as if a troll is asleep and you get air but he can wake up and kidnap the air’, ‘it's like nobody an hear it but me when it's like starting…and then the troll starts tightening up my chest so its hard to breathe’, ..it is like a jellyfish, which has a deadly sting and vicious bite and tentacles which could squeeze your throat and make your bronchioles get smaller and make breathing harder’, ‘like a boa constrictor squeezing life out of you’, ‘tickle in my throat’, ‘…not be able to catch my breath and then would breathe hard, which would hurt badly in my chest and I would be weak and tired’, ‘cannot breathe’, ‘wheezing cough’	Not applicable
Mammen et al.	USA	n = 14	2018	White Black Multiracial Hispanic/ Latino	13–17 years	Coughing, throat clearing, wheezing, hard to breathe, chest tightness, short of breath, tired, chest pain	No differences by race, gender, or sex
Mammen et al.	USA	n = 14	2016	White Black Multiracial Hispanic/ Latino	13–17 years	Short of breath, bad chest tightness, collapse cough, wheeze, mild chest tightness, can't breathe, lightheaded, dry throat, pushing on chest, persistent shortness of breath, persistent cough, cough to nearly throwing up, thick dark phlegm, mild cough, mild shortness of breath, lungs shut, can't talk	No differences reported
Pradel et al.	USA	n = 32	2001	Black White	7–12 years	Difficulty breathing, cough, wheeze, not feeling well, dizziness, throwing up, tiredness, stomachache, headache, sore throat, heart beats fast, chest pain,	Race differences not stated
Van Dellen et al.	Netherlands	n = 40	2008	Moroccan Turkish Surinamese Ethnic Dutch descent	7–17 years	Feeling of sadness at onset of symptoms	No ethnic differences
Van en Bemt et al.	Holland	n = 25	2010	Dutch	6–12 years	Cough, shortness of breath, wheezing, being tired, having a red head, headache, stomach-ache, pain, being sick, sore throat, sputum production, out of breath/deep breath, difficult to laugh	Not applicable
Woodgate	Canada	n = 30	2009	White Asian	7–13 years	Descriptors of dyspnea: distressing, painful, frightening, ‘I can't breathe’, ‘it hurts’, ‘I cough so hard that I almost puke’, like really wheeze, ‘I breath really fast’, tired, dizzy, heart going really fast, tight, heavy, like choking, it is kind of like a heart attack, mumbled voice, sad, feel different, it is scary, feeling gloom, frustrated, embarrassing, feeling trapped, ‘I feel like I walked in a dungeon and can't get out’, ‘It is like a ton of bricks on your chest and a lock is around it and you really can't breathe’, ‘It is like someone put a blanket over me, closes all the edges, I go psycho, I feel like I can't get out anymore’, ‘I felt like I was being hung from a rope around my neck even though my feet are still on the ground’, ‘It feels like you have seen a ghost because when you see a ghost, you can't really breathe, like you are so startled and you can't breathe’.	Not applicable
Lang et al.	USA	n = 58	2015	White Black Other Hispanic/ Latino	10–17 years	Chest pain, chest tightness, cold symptoms, cough, shortness of breath, throat itching, tiredness/fatigue, wheeze/wheezing	Statistically greater report of SOB among overweight/obese (37%) vs. lean (0%); overweight/obesity status not associated with race.
Gabe et al.	London	n = 55	2002	White Non-white	11–16 years	Symptoms of asthma: ‘coughing’, ‘wheezing’, breathlessness’, ‘being unable to breathe’, ‘I feel like shriveling up, I can't breathe and I feel wheezy’, ‘pain in chest’, ‘blocked chest’, ‘knotted chest’, feeling of ‘weight being on chest’, ‘tired chest’, ‘blocked tubes’, tight chest’, ‘it is more tight chested and it is hard to expand your lungs…when you manage to get a deep breath in you need another one all of a sudden. So you breathe in to take deep breaths but you can't’, ‘tiredness’, feeling hot or sick, an inability to speak, a tight throat, dizziness, headache, sneezing, runny nose, sore eyes, fear of dying, anger, frustration, annoyance, irritation	Not reported
Chiang	China	n = 11	2005	Asian	6–12 years	Coughing, wheezing, shortness of breath, tightness in chest, dysphagia, ‘miserable’, ‘pitiful’,	Not applicable
Trollvik et al.	Norway	n = 15	2011	Norwegian	7–10 years	‘I can't breath’, ‘difficult to breathe’, ‘tired’, ‘exhausted’, ‘can't talk or laugh’, ‘breathe heavily’, ‘tight in my chest’, ‘sore in my throat’, ‘sound in my throat’, ‘my throat is strangled’, ‘something in my throat’, ‘can't swallow’, ‘asthma-it feels like a big bubble in my throat that can't burst’, ‘heart beating faster’, ‘heavy breathing’, ‘throat feeling strangled’, fear, ‘asthma tired’	Not applicable
Davis et al.	USA	n = 284	2011	Black/non-Hispanic Caucasian/non-Hispanic Caucasian/ Hispanic Other	10–12 years	Breathing difficulty, cough, wheezing, night waking	Not applicable
Phankingthongkum et al.	Thailand	n = 60	202	Thai	9–18 years	Chest discomfort, chest pain, chest tightness as run over by a car, burning sensation, feeling between tightness and piercing pain, piercing pain, not being able to catch a breath, too short of breath, feeling suffocated, noisy breathing, rapid breathing	Not applicable

1. Background

Pediatric asthma is a global public health epidemic (Serebrisky and Wiznia, 2019), and despite novel treatments and improved inhalers, approximately 50% of children with current asthma experience uncontrolled symptoms (Zahran et al., 2018). Puerto Rican and non-Hispanic Black children and adolescents have disproportionately high asthma prevalence (Akinbami et al., 2016; Centers for Disease Control and Preventions (CDC), 2016), are more likely than non-Hispanic White children to have uncontrolled or severe asthma and have higher rates of asthma-related hospital admissions and death (CDC, 2016; Self et al., 2005). Pediatric asthma resulted in $5.92 billion in annual health care expenditures (Sullivan et al., 2017). The causation of the aforementioned disparities among children and adolescents are multifactorial, and may be due in part to ineffective patient-provider communication about symptoms (Diette and Rand, 2007); (Dowell et al., 2020), adversely affecting treatment and management decisions (Halterman et al., 2002).

Accurate symptom assessment is central to guideline-based asthma treatment and management (National Heart Lung and Blood Institute [NHLBI], 2007). Nonetheless, effective communication to assess symptoms−how it is perceived and reported−remain challenging in pediatric clinical and research settings (Houle et al., 2010; Lang et al., 2015; Mammen et al., 2016, 2017). The severity, unpleasantness, and quality of symptoms such as dyspnea and chest tightness are often difficult to describe and measure. Moreover, the current symptom assessment methods have been challenged by individuals’ imperfect symptom perception (Mammen et al., 2016, 2017), and the underestimation of symptoms by young people (Rhee et al., 2008), families, and providers (Mammen et al., 2017; McQuaid, 2018; Searle et al., 2017). Research has elucidated that standard asthma symptoms (e.g., cough, wheeze, shortness of breath, chest tightness, nighttime cough) accepted by the healthcare community may be perceived and reported differently by children, adolescents and their caregivers (Houle et al., 2010; Mammen et al., 2016; Yoos et al., 2005a). In addition, seminal work in adults concluded that there were ethnic differences in the sensory perception of airway obstruction and the language used to describe asthma symptoms (Hardie et al., 2000, 2010; Trochtenberg et al., 2008). The importance of children and adolescents’ language for pain has been useful in understanding the multidimensional nature of their symptom experiences and tailoring their pain management (Savedra et al., 1981, 1988, 1993; Tesler et al., 1991; Wilkie et al., 1990a). Despite the significance of language in asthma, no review has summarized the findings from studies that include children and adolescents’ word descriptors of asthma symptoms.

Knowledge of the language that children and adolescents use to describe their asthma symptoms could enhance patient-provider communication, contribute to improved clinical assessment, treatment and management of asthma, and may provide a partial explanation for the present disparities in asthma treatment and management. In clinical practice, the level of asthma control is determined by the frequency of an individuals reported daytime symptoms, nighttime awakenings due to asthma symptoms, short-acting beta agonist use, and the degree of activity limitations due to asthma (NHLBI, 2007). Self-reports are recognized as a critical assessment method and fundamental to optimum management of the disease (NHLBI, 2007). Inaccurate classification of asthma control can ultimately lead to inadequate management decisions and increased health care utilization (Rhee et al., 2011).

In response to the pervasive asthma morbidity in general population, the NHLBI (2007) developed evidence-based guidelines for optimum treatment that hinges on adequate symptom assessment and monitoring. However, children and adolescents’ variable conceptualizations of asthma symptoms pose challenges to communication with healthcare providers (Mammen et al., 2016). Although a critical first step toward improving patient-provider communication is a shared language, little is known about the word descriptors used by children and adolescents to specify subjective asthma experiences. The purpose of this integrative review was to identify words children and adolescents use to describe asthma symptoms and examine evidence regarding race/ethnic differences in the language used through the synthesis of the existing pediatric literature on children and adolescents’ descriptors of asthma symptoms.

2. Methods

We used Whittemore and Knafl's (2005) framework to guide the design, implementation, and reporting of our integrative review as it allows for the integration of quantitative, qualitative, and mixed methods research findings. Our review included only published empirical studies and excluded gray literature and theoretical articles.

2.1. Problem identification

Our integrative review of the literature was guided by the following two questions: (1) What are the words children and adolescents use to describe their asthma symptoms? and (2) Are there race/ethnic differences in children and adolescents word descriptors? This information could be particularly important in explaining patient-provider language discordance, and understanding racial/ethnic differences in language choices.

2.2. Search strategy

Two major databases−Cumulative Index of Nursing and Allied Health Literature and PubMed−were systematically queried for peer reviewed research articles using the following terms: ‘asthma,’ ‘symptoms,’ ‘feelings,’ ‘sensations,’ ‘experiences,’ ‘perceptions,’ ‘symptomatology,’ ‘asthma symptoms,’ ‘wheezing,’ ‘breathlessness,’ ‘dyspnea,’ ‘shortness of breath,’ ‘language,’ ‘communication,’ ‘word descriptors,’ ‘asthma diaries,’ ‘adolescents,’ ‘teens,’ ‘children,’ ‘pediatric.’ Terms were combined with Boolean connectors. For example, the search in PubMed included ‘(asthma symptoms OR wheeze OR breathlessness OR dyspnea OR shortness of breath) AND (asthma)) AND (language OR experiences OR feelings OR sensations)) AND (children OR adolescents)’.

2.3. Eligibility criteria

The inclusion criteria were: (1) original qualitative, quantitative, or mixed method research studies that contained children's or adolescents’ self-report of their asthma symptom experience; (2) original studies including children and/or adolescents with asthma; (3) findings specifically for children and adolescents reported separately if the sample contained a parent-child dyad; (4) peer reviewed; (5) studies written in English. When research studies included samples of adolescents, but mean age was greater than 21 years, the study was excluded because it could introduce washing out of findings specific to our target study population. Abstracts, conference reports, editorial letters, or literature not formally published were excluded. In order to include seminal work on subjective asthma symptomatology conducted decades ago, our review included studies published from 1980 to 2021.

2.4. Appraisal of methodological quality

The Mixed Method Analysis tool (Hong et al., 2018) was used to facilitate the quality evaluation of quantitative, qualitative, and mixed method studies. The primary author evaluated each of the articles included. Methodological quality of the studies was appraised by rating the appropriate criteria for each qualitative, quantitative, or mixed methods components on a checklist with “yes (1),” “no (0),” or “can't tell (not scored).” The checklist included a series of five questions such as “Are the qualitative data collection methods adequate to address the research questions?” Each study's quality score for the appropriate component ranges from zero to five. Quality score was ranked as follows: low (1–4), moderate (5–9), and high (10–15). We did not exclude any studies with ratings “no” or “can't tell.”

2.5. Data extraction

Word descriptors reported in the result section of each study were extracted and synthesized. In the quantitative studies, p ≤ 0.05 was used in determining statistically significant racial/ethnic differences. The data on descriptors of asthma symptoms and emotional responses were abstracted and included in Table 1.

3. Results

3.1. Study characteristics

The systematic search of the published literature yielded 2243 articles (Fig. 1). After duplicates were removed, 2232 articles remained. The first author reviewed all titles and abstracts. Abstracts that referenced children's or adolescents’ self-reported descriptors of asthma symptoms were considered for full review. Abstracts with no references to the experience of asthma symptoms reported by children or adolescents were excluded; 2202 articles did not meet at least one of the inclusion criteria. The remaining articles (n = 30) underwent full-text review. During the full text review, 21 articles met the inclusion criteria and were included in this integrative review (Fig. 1). Overall, the studies quality appraisal ranged from low to high quality based on whether criteria from the aforementioned checklist were met or unmet. Since the literature on asthma word descriptors among children and adolescents was limited, study selection was based on content and not quality of the studies.

Fig. 1.

PRISMA flow diagram.

Studies were conducted in various countries including the United States, Netherlands, Canada, England, China, and Norway. The majority (n = 12) used a qualitative design (Carrieri et al., 1991; Chiang, 2005; Gabe et al., 2002; Globe et al., 2015; Houle et al., 2010; Mammen et al., 2016, 2017; Peterson and Sterling, 2009; Trollvik et al., 2011; Q.M. Van Dellen et al., 2008; van den Bemt et al., 2010; Woodgate, 2009). One used a mixed-method design (Mammen et al., 2019) and the remaining studies included a quantitative design (Davis et al., 2011; Harver et al., 2011; Lang et al., 2015; Lebowitz et al., 1981; Phankingthongkum et al., 2002; Pradel et al., 2001; Rhee et al., 2014; Woodgate, 2009; Yoos et al., 2005a). The majority of the qualitative studies used purposive sampling, one used a convenience sample (Carrieri et al., 1991), and one used probability sampling (Davis et al., 2011). Sampling methods in five studies were not clear (Lebowitz et al., 1981; Peterson and Sterling, 2009; van den Bemt et al., 2010b; Woodgate, 2009; Yoos et al., 2005a). Study sample sizes ranged from 10 to 284. The participants’ ages ranged from 5 to 17 years, and males and females are comparably represented in few studies (Chiang, 2005; Globe et al., 2015; Lebowitz et al., 1981; Mammen et al., 2016, 2017, 2019; Peterson and Sterling, 2009; Rhee et al., 2014). A few studies had a fairly even distribution of racial groups (Harver et al., 2011; Mammen et al., 2016, 2017, 2019; Rhee et al., 2014).

3.2. Common data collection methods

The main variable of interest, word descriptors, was obtained utilizing various data collection strategies. In one such measure, Rhee et al. (2014) used a 24-hour asthma diary format, which allowed teens to record their asthma symptoms in the morning, afternoon, evening, and night. The teens were also asked to include their use of short-term relief medication, identify which symptom was being treated by the medication, other medications used, and answers to the questions ‘what did you do?’ ‘where were you?’ and ‘how did it feel?’ (Rhee et al., 2014). Mammen et al. (2017) used a combination of teens’ asthma diaries, follow-up questions post review of the diaries, face-to-face interviews and card-sorting. In-person individual interviews and focus groups were common, with questions such as ‘define wheeze using your own words’ (Houle et al., 2010), ‘what words can you give that tell me how your breathing feels to you on a good, bad, or usual breathing day?’ ‘what kinds of feelings do you have on a bad breathing day?’ (Carrieri et al., 1991) ‘describe what it feels like when you're having trouble with your asthma,’ (Yoos et al., 2005b) ‘how do you recognize an asthma exacerbation?’ ‘what is asthma?’ (Gabe et al., 2002) and ‘tell me about your asthma symptoms’ (Mammen et al., 2019). Participants were also asked to describe his/her asthma (Peterson and Sterling, 2009) and their ‘experience with asthma symptoms and symptom related impacts during a typical day’ (Globe et al., 2015). Harver et al. (2011) used a breathlessness questionnaire and asked children ages 8 – 15 years to answer ‘yes’ or ‘no’ if the statement described their uncomfortable awareness of breathing. The Asthma Symptom Checklist (Kinsman et al., 1973), originally developed to obtain subjective symptoms experienced during acute asthma in adults, was piloted in adolescents (Lebowitz et al., 1981). While the vast majority of studies focused on multiple symptoms of asthma, one study (Houle et al., 2010) focused exclusively on the symptom ‘wheeze.’

4. Symptom descriptors

4.1. Sensory descriptors of asthma symptoms

Overall, children and adolescents linguistically describe asthma symptoms using not only standard asthma terms, but also terms or phrases beyond standard asthma terms known to the healthcare community. Cough, wheeze, and chest tightness were commonly reported symptoms among children and adolescents (Carrieri et al., 1991; Chiang, 2005; Davis et al., 2011; Gabe et al., 2002; Houle et al., 2010; Lang et al., 2015; Lebowitz et al., 1981; Mammen et al., 2016, 2017, 2019; Pradel et al., 2001; Rhee et al., 2014; van den Bemt et al., 2010a; Woodgate, 2009; Yoos et al., 2005b). Interestingly, some adolescents did not identify coughing as a symptom of asthma (Mammen et al., 2017). Children described their experiences of having trouble with asthma by using words that describe the sensory qualities (physical sensations) of the experience. For example, ‘pressure in chest,’ ‘elephant on my chest,’ ‘chest hurts,’ ‘lungs closing up,’ ‘gasping for air,’ ‘can't breathe,’ and ‘chest caves in’ (Yoos et al., 2005a). When asked ‘How does your breathing feel on a bad day?’, responses included ‘it is hard to breathe,’ ‘can hardly breathe,’ ‘fighting to get breath in and out,’ ‘can only get a little in,’ and ‘tightness, lungs feel shut’ (Carrieri et al., 1991).

Children and adolescents also reported non-pulmonary symptoms in association with their asthma such as ‘stomachache,’ ‘headache,’ ‘joint/muscle ache,’ ‘heart beating fast,’ ‘heart hurts,’ ‘runny nose,’ ‘stuffy nose,’ ‘sneezing,’ ‘mucus,’ ‘itchy throat,’ ‘itchy lungs,’ ‘feeling hot,’ ‘throat pain,’ ‘chest/back/side pain,’ ‘congested,’ ‘tight throat,’ ‘throat clearing,’ and ‘throat hurts,’ ‘cold,’ ‘dizzy’ (Mammen et al., 2017; Rhee et al., 2014; Yoos et al., 2005a). Adolescents also reported non-specific symptoms such as tiredness (Gabe et al., 2002; Lang et al., 2015; Rhee et al., 2014; Trollvik et al., 2011) and fatigue (Globe et al., 2015; Lebowitz et al., 1981). In a study using metaphors (Peterson and Sterling, 2009), young children described asthma as follows: ‘stings like a jellyfish,’ ‘it seems as if a troll is asleep and you get air but he can wake up and kidnap the air,’ or ‘like a boa constrictor squeezing the life out of you.’

4.2. Affective descriptors of symptom experience

Children and adolescents also used words describing the affective dimensions, or emotional components of the phenomena. For example, emotional responses included feeling ‘grumpy,’ ‘angry,’ ‘rotten,’ ‘sink,’ ‘it's like hanging off a cliff with just your fingernails,’ ‘miserable,’ ‘annoyed,’ ‘sad,’ ‘dark,’ ‘afraid of dying,’ ‘worried,’ (Carrieri et al., 1991) ‘sadness,’ (Q.M. Van Dellen et al., 2008) ‘frustrated,’ ‘scared,’ ‘calm,’ ‘good,’ ‘like crap,’ ‘no big deal-used to it,’ ‘difficult,’ and challenging,’ (Rhee et al., 2014) ‘excited,’ ‘numb,’ ‘feel isolated,’ ‘afraid of being left alone,’ ‘helpless,’ ‘edgy,’ ‘unhappy,’ and ‘furious’ (Lebowitz et al., 1981). Terms of negative emotion (e.g., scared, nervous, worry, angry, confused, frustrated, sad) associated with the symptoms (Lebowitz et al., 1981; Rhee et al., 2014; Woodgate, 2009) were also identified.

Lebowtiz et al. (1981) identified five symptom clusters utilizing the Asthma Symptom Checklist (Kinsman et al., 1973). Outpatient adolescents’ symptoms were distributed in the following clusters: ‘asthma,’ ‘fear,’ ‘irritable,’ ‘fatigue,’ and ‘unhappy-afraid’ defining items (Lebowitz et al., 1981). It is unknown if these findings can be applied to across race groups as the researchers did not report participants’ race. Additional descriptors including those reflecting emotion were used by school-aged children in responding to the question ‘What kinds of feelings or emotions do you have on a bad breathing day?’ These descriptors included ‘mad,’ ‘scared,’ ‘uncomfortable,’ ‘feeling tired,’ ‘hazy,’ ‘dark,’ ‘miserable,’ ‘wish I could breathe real well,’ ‘clogged like a sink,’ ‘you're in knots and it's hard to get things,’ and ‘it's like hanging off a cliff with just your fingernails’ (Carrieri et al., 1991).

4.3. Racial/ethnic differences

Studies that elucidate racial or ethnic differences in word descriptors were few (Harver et al., 2011; Mammen et al., 2017, 2019; Q.M. Van Dellen et al., 2008; Yoos et al., 2005a). Two studies did not report the race/ethnicity of the participants (Carrieri et al., 1991; Lebowitz et al., 1981), and five studies included a single racial/ethnic group (Chiang, 2005; Houle et al., 2010; Peterson and Sterling, 2009; Phankingthongkum et al., 2002; Trollvik et al., 2011; van den Bemt et al., 2010a). Racial/ethnic differences could not be examined in a study conducted in Canada due to the homogeneity of the sample being predominantly white (Woodgate, 2009).

‘Wheeze,’ another common symptom of asthma, may be understood differently for African American children (Houle et al., 2010). Houle et al. (2010) conducted a study on African American adolescents’ understanding and description of ‘wheeze.’ Interestingly, African American adolescents varied in their knowledge and description of ‘wheeze.’ Instead of ‘wheeze’ representing a high-pitched whistling noise as described in medical literature, for some adolescents this phenomenon was related to something that was felt. It was described by these adolescents as ‘your chest gets tight, and when you breathe, it's like, not full,’ ‘coughing, really bad and not being able to breathe,’ and ‘I thought coughing was wheezing’ (Yoos et al., 2005a). Others described it as ‘like a little whistle,’ and ‘like it will sound like something squeaking’ (Houle et al., 2010).

Some African American children used descriptors such as ‘my chest feels tight,’ and ‘I cannot get enough air in’ to describe the sensation of breathlessness in asthma (Harver et al., 2011). African American and White children used several descriptor phrases such as, but not limited to ‘my chest feels tight,’ ‘I cannot get enough air in,’ ‘I feel out of breath,’ ‘tightness, lungs feel shut,’ ‘fighting to get breath in and out,’ ‘it is hard to breathe’ (Harver et al., 2011). African American, White, Dutch, Moroccan, Turkish, Surinamese, and Norwegian children and adolescents described non-pulmonary symptoms (e.g., stomachache, sore throat, headache) (Carrieri et al., 1991; Pradel et al., 2001; Rhee et al., 2014; Trollvik et al., 2011; Q.M. Van Dellen et al., 2008; van den Bemt et al., 2010a; Yoos et al., 2005a). When asked ‘How does your breathing feel on a bad day?’, responses included ‘it is hard to breathe,’ ‘can hardly breathe,’ ‘fighting to get breath in and out,’ ‘can only get a little in,’ and ‘tightness, lungs feel shut’ (Carrieri et al., 1991).

Evidence related to racial and/or ethnic differences in word descriptors is insufficient as few studies examined this relationship. Yoos and colleagues (Yoos et al., 2005a) found no significant race differences in children's descriptions, but Black children were more likely to use nonpulmonary symptoms (p = 0.07). Harver and colleagues (Harver et al., 2011) found no racial differences in children's descriptive language of dyspnea or racial effect on total number of descriptors selected.

5. Discussion

Our integrative review of literature explored and identified word descriptors used by children and adolescents to describe asthma symptoms and associated emotional responses. We learned that children and adolescents’ language of asthma symptoms included affective (e.g. helpless, afraid of dying) and sensory descriptors (e.g. pressure in chest, tightness, lungs feel shut), some of which are unfamiliar to the health care community, shedding light on the multidimensional experience of asthma. To date, no single instrument exists for use to capture the complex nature of asthma experienced by children and adolescents. Therefore, it is imperative to develop a multifaceted measure that is developmentally and culturally sensitive. In doing so, further work is needed to identify words frequently used by multiethnic groups of young people and quality assigned to the common words by different race and ethnic groups.

The method that clinicians use to query children, adolescents, and caregivers potentially affects the quality and completeness of the information needed for adequate decision-making. Generic assessments can be perceived differently by different ethnic groups and it is important that correct questions to assess asthma symptoms be asked. For example, Kohlman-Carrieri and colleagues (Carrieri et al., 1991) included questions such as ‘what words can you give that tell me how your breathing feels to you on a bad, good, or usual day?’ or ‘what kind of feelings do you have on a bad breathing day?’ which children as young as 7 years old were able to provide rich qualitative descriptions of their asthma experience. Further studies are needed that include multiethnic groups.

It remains unclear if these word descriptors differ by racial/ethnic background of young patients. Although these studies have contributed to the current state of knowledge regarding word descriptors used by children and adolescents, there are many gaps in the research literature that need to be filled. It is unclear if ethnic minority children and adolescents possess a different vocabulary to describe asthma. Due to the limited number of studies and incomplete reporting of racial/ethnic inclusion, the extent of the racial/ethnic differences among children and adolescents remains unclear. Even though the studies included in this review were conducted in various regions of the United States and internationally, generalizability of current word descriptors across racial and ethnic groups and or subgroups is unknown. For example, in the study conducted in California, which includes an ethnically diverse population, participants’ race was not reported. This is cause for concern as symptoms of asthma are used to diagnose, monitor response to treatment and assess control of the disease. The experience of asthma in multiethnic groups of children and adolescents includes various elements, and the results of our review highlight that such elements are not adequately captured in the terminologies that are commonly used or known to healthcare providers, or ones that appear on commonly utilized asthma questionnaires.

Even though the majority of the studies in this review reflected on breathlessness or dyspnea, it is clear that much like pain, asthma symptoms are not only a physical sensation but also a reflection of affective and evaluative features (Yoos et al., 2005a). There is an urgent need to study specific descriptors commonly used by vulnerable minority children and adolescents to express their symptom experience given their disproportionately high asthma morbidity, functional impairment, and decreased quality of life. Extensive work on the pain language of multiethnic groups of children and adolescents has been reported (Savedra et al., 1981, 1988; Wilkie et al., 1990), which generated a 56-word list that contained children's pain descriptors that were free of gender, ethnic, and developmental biases (Tesler et al., 1991; (Savedra et al., 1988); Wilkie et al., 1990). The work later led to the development of a multidimensional measurement tool called the Adolescent Pediatric Pain Tool (Savedra et al., 1993). Similar work is needed for asthma to develop an instrument that can be used in either research or clinical setting for the adequate assessment of asthma symptoms experienced by children and adolescents from diverse racial, ethnic background.

6. Conclusion

Our integrative review is a synthesis exploring asthma word descriptors used by children and adolescents. Language is a systematic means of communicating experience and feelings either by spoken or written words that have understood meaning. It is critical that nurse clinicians understand that children and adolescents possess a language to describe asthma beyond clinically standard descriptions. Understanding how asthma is described and interpreted by different races and ethnicities is important in providing adequate asthma care and management. Nurse clinicians should engage children and adolescents during clinical visits by asking them to describe in their own words what breathing feels like on a ‘usual and bad breathing day’ and how they respond to the symptoms they describe. Having a shared language between patients and providers may aid in improving disparities through efficient symptom assessment and shared-decision making leading to effective treatment. This review highlights the need for further investigation into symptom descriptors used by children and adolescents for the development of an instrument that can be adopted for the assessment of symptoms in a developmentally appropriate and culturally sensitive fashion.

Funding

No external funding.

Declaration of Competing Interest

The authors declare that there are no conflicts of interest.