Children's Perceptions of Asthma: African American Children Use Metaphors to Make Sense of Asthma

Article Outline

• Abstract
• Metaphor
• Illness Perceptions
• Method
• Results
  • Children's Metaphors of Asthma
  • Concordance Between Child and Health Care Provider
• Discussion
  • Implications
• Conclusion
• References
• Biography
• Copyright

Abstract 

Introduction

Children's views of their illness often are absent in decisions that affect their lives. This research, which is a component of a larger study, reports how African American children described their asthma.

Method

The study's design was descriptive and longitudinal, using an ethnographic approach. A subsample of 10 children diagnosed with asthma who resided in one of two study sites spontaneously described their asthma. The study was conducted in various settings where the researchers observed/participated in selected activities. Participants were interviewed several times, and field notes were recorded.

Results

The qualitative findings are from participant observation and interviews of 10 children ages 9 to 12 years. Four of the most developed metaphors are reported here. Out of their experiences, children created their own metaphors for asthma that are concrete, familiar, and multi-vocal, allowing for embellishment.

Discussion

Not all children use metaphors to explain or describe their asthma. Children who explain asthma in their own terms will feel valued and invested in their own health care as they find that their voices make a difference in decisions about their care.

Key words: Asthma, children's health perceptions, African American, metaphors

Children's views of their illness often are absent in decisions that affect their lives (McPherson & Thorne, 2002). In an attempt to make sense of that which is not understood, children often resort to that which is familiar to them. As inner pressures build up in children, they create images and invent stories to control their own emotional well-being and externalize these pressures. As Bettelheim (1977) tells us in discussing a child's use of fairy tales, “A child needs to understand what is going on within his conscious self so that he also can cope with that which goes on in his unconscious. He can achieve this understanding…through spinning out daydreams—ruminating, rearranging, and fantasizing about suitable story elements…the child fits the unconscious content into conscious fantasies, which then enable him to deal with the content. It is here that fairy tales have unequaled value because they offer new dimensions to the child's imagination which would be impossible for him to discover as truly his own” (p. 7).

In this article, we describe a more condensed version of the fairy tale: the metaphor, that is, the images and descriptions used by children with asthma to understand their chronic disease. We suggest that the metaphor that communicates a child's cognition and emotions about asthma would improve the quality of his or her health care if incorporated in the child's health care treatment.

Asthma is a serious and growing health problem. An estimated 9 million or 12.5% of noninstitutionalized children in the United States have been diagnosed with asthma. Boys are more likely than girls to have an asthma diagnosis (Bloom et al., 2007, National Center for Health Statistics,). Despite decreases in hospitalization and death rates for adults and children with asthma and increases in their use of outpatient and emergency visits in general, African Americans continue to have higher rates of asthma emergency department visits, hospitalizations, and deaths than do Whites (Mannino et al., 2002; National Center for Health Statistics).

The 1997 National Asthma Education and Prevention Program (NAEPP) guidelines focus on four major components to effectively manage asthma: controlling exposure to factors that trigger asthma episodes, adequately managing asthma with medicine, monitoring the disease by using objective measures of lung function, and educating asthma patients to become partners in their own care. This article amplifies the last component by suggesting that the education of providers that emphasizes listening to and understanding patients' experiences of their illness is a basic part of that component.

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Metaphor 

Turner (1974), in Drama, Fields and Metaphors, gives a useful definition of a metaphor. He states, “Metaphor is, at its simplest, a way of proceeding from the known to the unknown. It is a way of cognition in which the identifying qualities of one thing are transferred in an instantaneous, almost unconscious, flash of insight to some other thing that is, by remoteness or complexity, unknown to us” (p. 25).

Through a metaphor, one can immediately blend two separated realms of experience into one condensed image. Sontag (1990) highlights the use of metaphor in discussing both tuberculosis and cancer. Neither disease was understood when it first appeared. The illnesses themselves were metaphors. “TB is often imagined as a disease of poverty and deprivation—of thin garments, thin bodies, unheated rooms, poor hygiene, inadequate food…. In contrast, cancer is a disease of middle-class life, a disease associated with affluence, with excess” (p. 15). Metaphors that have meaning are rich and contain opposing views. For example, tuberculosis could describe the death of someone as too “good” to be provocative, while at the same time it can be described as someone blamed for physiological depravity.

When the child cannot describe his or her asthma in physiological terms, he or she may use a metaphor.

Metaphors provide a way to work with experience, bestowing the characteristics of one concept on another (Kirmayer, 1992, Turner, 1974). Thus, when the child cannot describe his or her asthma in physiological terms, he or she may use a metaphor.

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Illness Perceptions 

How a child understands his or her illness is important. Yoos (1994) suggests that the novice to expert paradigm proposed by Chi (1978) is more helpful for health care providers in exploring a child's concept of illness than traditional cognitive and developmental approaches. Children as novices can best acquire knowledge in a specific domain, then move to higher levels of understanding within that domain. They reason from what they know, which includes their asthma symptoms. This reasoning contrasts with the reasoning of health care providers or experts, who reason from scientific principles (e.g., physiologic responses).

A child's novice conceptions about health and illness may be inaccurate. However, these conceptions are powerful and remarkably resistant to instruction.

A child's novice conceptions about health and illness may be inaccurate. However, these conceptions are powerful and remarkably resistant to instruction. Therefore, health care providers should correct these misconceptions by initially exploring the nature of the child's knowledge deficits and modify them, rather than attempting to superimpose new and correct concepts (Yoos, 1994).

Research on perceptions of asthma shows that people's beliefs have a strong influence on how they manage their illness (Sander, 1998, Yoos and McMullen, 1996). For example, differences in beliefs from those of their health care providers about long-term use of asthma medications have been demonstrated among the Navajo (Van Sickle & Wright, 2001) and inner-city children (Riekert et al., 2003). Mansour, Lanphear, and DeWitt (2000) found that one of the most frequently reported barriers among African American parents is their intrinsic health beliefs, including adherence to the asthma plan. Other studies report on differences between children's and parent's perceptions of asthma (Guyatt et al., 1997, Lara et al., 1998, Panditi and Silverman, 2003) and on the differences between parents' and providers' perceptions about chronic illness (Perrin, Lewkowicz, & Young, 2000). To further investigate this issue, explanatory models that include rating illness severity and identifying cause of condition also have been used to understand childhood asthma from the perspective of African American adult caregivers (Peterson, Sterling, & Stout, 2002).

Mansour and colleagues (2003) found that children do self-report perceptions of their own poor psychological and physical health. Pradel, Hartzema, and Bush (2001) found that 7-year-olds and 12-year-olds who use drawings to tell their asthma story are able to respond, but the different age groups had different knowledge and perceptions about their illnesses. Drawings also have been used with children with headaches and were found to be a simple, inexpensive, and accurate method for children to tell their stories (Stafstrom, Rostasy, & Minster, 2002).

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Method 

This article reports on the findings of a subsample of 10 children residing in one of two sites of a larger study (Peterson et al., 2002) that sought to understand explanatory models of asthma of African American caregivers of children with asthma. The explanatory model is used for studying the cognitive and communicative features of health care and to elicit information about beliefs that underlie behaviors (Kleinman, 1980).

Study participants were recruited from several clinics. Inclusion criteria were that children (a) identified themselves as African Americans, (b) had at least one identified caregiver in the family, and (c) were between 9 and 12 years old and had asthma. The child had to have been diagnosed with asthma for at least 1 year; be receiving health care monitoring, management, and/or supervision; and had at least one emergency department visit, hospitalization, or doctor's office visit for asthma or be using asthma medications in the past 12 months. The length of time since diagnosis ranged from 1 to 10.5 years, the average being 5.4 years, and the median being 5 years. Additionally, the children had to have no other significant chronic illness. All participants gave written informed consent; assent was obtained from each child. All participants were given code numbers, and children selected individual and family pseudonyms to maintain confidentiality.

The design of this study was descriptive and longitudinal, using an ethnographic approach. The decision to use an ethnographic approach was borne from the belief that asthma was not a clearly defined problem for this population. The researchers sought to “explore the factors associated with the problem in order to understand and address them” (LeCompte & Schensul, 1999, p. 29) and to uncover factors not known to health care providers. Families told us how they rated their child's asthma severity. Therefore the National Asthma Education and Prevention Program, 1997, National Asthma Education and Prevention Program, 2003 asthma standards were not imposed on the families.

The study was conducted in multiple settings in which children and families felt most comfortable or spent much of their time. Those settings included the families' homes, the child's school, sports events, churches, and community festivals where the researchers observed/participated in selected activities. Primary caregivers and children were interviewed until no new data were observed or revealed. The researchers also recorded field notes throughout the study.

All study activities were conducted by African American researchers. Interviews were audiotape recorded. Children were monitored for 1 year, with an average of 12 contacts per family. Once the family and researcher got to know each other, each child was asked to describe his or her asthma. The child offered his or her response to the question, “What do you think has caused your problem?” This was the second question used to elicit an explanatory model (Kleinman, 1980). As participant observers, the researchers asked open-ended questions, followed by asking for further detail and explanation of what the child was describing. “Participant observation is a data collection technique that requires the researcher to be present at, involved in, and recording the routine daily activity with people in the field setting” (Schensul, Schensul, & LeCompte, 1999, p. 91). Although all of the children in the study voluntarily described their asthma on several occasions, 10 children used images/metaphors and/or told stories about them. Each time the child described his or her asthma, the reported descriptions or metaphors were written up by the researchers, who brought them back to the child to validate and/or refine the earlier explanations.

All interviews and field notes were entered into a commercial software program, NUD∗IST 4, designed for the management of qualitative data. Content analysis, which included coding data and identifying themes, occurred concurrently with data collection. Thus the new insights gained from the analysis helped guide subsequent data collection. Emergent concepts were defined as concretely as possible to be easily understood, observed, and categorized by the researchers and by the children. This process allowed for understanding the child's story, interpreting it, and agreeing on its meaning. One of the themes that emerged was “metaphor of asthma.” The following results describe that theme.

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Results 

Reported here are findings of the four most detailed, descriptive, and distinct metaphors. In the larger study, six other children used metaphors and 10 children did not use metaphors to describe their asthma.

At the time of enrollment in the study, the children with asthma were between 9 and 12 years of age. There were five girls and five boys in grades 4 through 7. Twenty percent of the children were taking three or more prescribed medications, 50% were taking two prescribed medications, and the remaining 30% were taking fewer than two prescribed medications. When the families and children were asked to rate the child's asthma from mild to severe, half rated it as not severe, 20% rated it between not severe to moderately severe, 20% rated it as moderately severe, and 1 family and child (10%) rated the child's asthma as severe.

Ninety percent of the adult primary caregivers of these children were women. Sixty percent were mothers, 20% were grandmothers, and 10% each were a great aunt and a father. Thirty percent or three children live in families with married adults, and 50% had two or more adults living in the household. Seventy percent of the households consisted of two or more children. The education level of most caregivers (90%) was 12 years or more. Family income of the 10 children ranged from $5000 to more than $70,000 a year. Based on the federal poverty guidelines, half of the families were living in poverty. These same families were those who used Medicaid or some other welfare assistance program to pay for health care. The other families' health care was financed from private pay or they had job-related health insurance.

Children's Metaphors of Asthma 

The 10 children had distinct, if not always detailed, images of their asthma. One boy summed up everyone's feelings when he said, “Asthma is hard to describe.” However, he continued with his own metaphor: “Asthma, you know, stings like a jellyfish.” There seemed to be no pattern to the images the children had based on sex, age, or their perceived severity of their asthma. In this article, we describe four of the metaphors: a troll, crackers, a jellyfish, and a guardian angel. Those four metaphors were chosen because they were the most detailed, descriptive, and distinct from each other. Table 1 summarizes all of the metaphors reported by the children in this study.

Table 1. Child's sex, age, asthma severity, and metaphor of asthma

A 12-year-old girl, who considered her asthma as not severe, used a metaphor of a troll to describe her illness. She said, “The troll is a little man in a green suit with big boots and a top hat. He is not very nice. He is small and sleeps all day in the dark, like under a bridge—kind of hidden, until I wake him up by the activities I do. When he wakes up, he climbs up the ladder to tell the air it has to pay to come into my chest. He says, ‘You can't go through until you pay. You need to pay.’ Sometimes the troll kidnaps your air (it seems as if the troll is asleep and you get air but he can wake up and kidnap the air). The troll can be controlled or destroyed by pushing him down the ladder. So far he has gone back to sleep only to wake up again. But one day he won't wake up any more. The troll tells me in my ear when I'm getting ready to have asthma and I should calm down.”

Only she can hear the troll's message. “It's like nobody can hear it but me when it's like starting… and then the troll starts tightening up my chest so it is hard to breathe.” In this metaphor, the troll and asthma are interchangeable. Here she uses the “it” in the first instance to talk about the troll and “it” in the second instant to talk about asthma.

An 11-year-old, who rates her asthma from not severe to moderately severe, said that asthma is like a chewed-up cracker—“like two little crackers that you chew up not really well. All these little pieces of crackers go everywhere, that's how it is in your chest when you breathe. It gets your mouth all dry and you try and spit it out so you can breathe. When you breathe out, the crackers go out and when you breathe in the little pieces come back in. When you breathe you hear the sound of the little pieces of crackers in your chest. They are all crumbly and you hear the crumbly sounds cause you're wheezing, a kind of cracker sound. If you take medicine, it kind of settles down the cracker pieces, so they don't bother you. Otherwise the pieces go flying around and make you cough. Other medicines loosen up the cracker crumbs so you can cough them out.”

One precocious 11-year-old boy with moderately severe asthma said, “One has to have the capability or responsibility to treat your body right and prevent respiratory sickness from happening. You don't want this to happen to you 'cause it is like a jellyfish, which has a deadly sting and vicious bit and tentacles which could squeeze your throat and make your bronchioles get smaller and make breathing harder. Or like a boa constrictor squeezing life out of you. To depend on yourself means no one else can help me but me. No one else can give me a warning. I might get a warning, like a tickle in my throat; no one else will know that but me. I have all the information, so I have to help myself. The tentacles of the jellyfish can brush up against you, that's like a warning, it does not sting but you know that it is there.”

A quiet 12-year-old girl says that she is healed from having severe asthma. Much of her family's activities revolve around a fundamental Christian church. The pastor prayed over her and asked others to pray for her, asking God that she be healed from asthma as he was when he was a young boy. She said, “Now I have a guardian angel who watches over me and cured me of my asthma. I no longer have to take medicine.” Things for this child are black or white; there is no in between. Her view is that “I am either not good enough to be cured, or I am. The guardian angel sent by God helps me to be good. However, if I mess up, I will get into trouble. My guardian angel does not protect me and can even take the air away. I use to 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. But now that I have been prayed over and have a guardian angel all that has ceased.”

Concordance Between Child and Health Care Provider 

The clinical description of asthma is that risk factors such as environmental factors, infections, and genetics can lead to inflammation that causes airway hyperresponsiveness and a limited air flow, which in turn produces symptoms such as wheezing and coughing (American Academy of Allergy, 2007, National Asthma Education and Prevention Program, 1997, National Asthma Education and Prevention Program, 2003). When comparing child and provider descriptions of asthma, a striking logic and similarity emerge.

The risk factors, instead of being environment, infection, and genetics, are African American, child, and low income. The airway inflammation, for the children, is the stirrings and movements of their images. The triggers are the activities of the images. Airway hyperresponsiveness for the troll is climbing the ladder; for the jelly fish, wrapping around the neck; for the cracker, crumbling; and for the guardian angel, withdrawing. The air flow limitation is seen as the troll “stealing the air,” the jellyfish “squeezing your throat,” the cracker “flying around” in your chest, and the guardian angel withholding your air. The symptoms are where provider and child agree: cough, wheezing, shortness of breath, and tightness in the chest (Table 2).

Table 2. Comparative descriptions of asthma

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Discussion 

Because metaphor comprehension begins at an early age and is governed by experience more than by cognitive skills such as logic, it makes sense that children use known objects in metaphors to understand their world (Kirmayer, 1992).

In this study, several children created their own metaphors for asthma out of their experiences. These metaphors were concrete, familiar to them, multi-vocal, and allowed for embellishment, incorporating new information as it is imparted by health care providers. The metaphor's meaning will therefore be different for each child, different for the same child at various times in the course of the illness, and different at various times in his or her life.

When analyzing the jellyfish metaphor, the scientific description of the jellyfish is not really what the child is trying to convey. His communication reflects his attempt to make meaning of his world.

The child's description of asthma as a jellyfish selects certain characteristics, “wraps around my neck, stings, makes it hard for me to breathe,” of the jellyfish that express his thoughts and emotions about asthma. Beyond the image, there is a description that suggests a solution, either temporary or permanent, to the problem. One possibility is that the child can keep enough distance (longer than the length of the longest tentacle) between himself and the jellyfish so that he will not be stung. Another possibility is for the child to be “capable and responsible and to depend on yourself” as he tells us and to know where the jellyfish is at all times and what it is doing. A jellyfish can be close as long as its tentacles are not “squeezing your throat.”

The same can be said for the metaphors of asthma as troll and as crackers. The troll can have a long period of “wakefulness” before becoming agitated and causing trouble (for the child) or symptoms (for the health care provider). This child's solution is to pay attention to the messages the troll whispers in her ear and to appease him. The metaphor of asthma as chewed-up crackers comes with images of the cracker pieces flying around in her lungs. This child would like the pieces to aggregate, giving her one item to focus on. A solution for her is to cough up and cough out the cracker pieces. Coughing for her is not a symptom of her illness but a characteristic of what she must do to stay healthy.

The guardian angel metaphor is slightly different. The angel is seen as pure goodness. The only way to have asthma symptoms is not to have a guardian angel, but instead lack of a guardian angel or presence of a demon. Children often split persons into two when concepts are too difficult to understand. Keeping the “good” image separate and uncontaminated from the “bad” image removes any contradictions. The child now has the opportunity to grasp what is going on within him or her. Here, the common point with health care providers is when this child does well and there are no asthma symptoms. Health care providers attribute this state to following the asthma management plan; the child attributes this to her guardian angel's presence. The child attributes any treatment needed as the result of being a bad girl.

The common point for the metaphors jellyfish, troll, and crackers and the subject “asthma” is a symptom: difficulty breathing, coughing, or wheezing. While the metaphor has brought the child to this point by a very different reasoning process than the logic used by health care providers, there is now a common point of reference. The child now wants to get rid of the jellyfish sting, quiet the troll, or stop the cracker pieces from floating around in his or her lungs.

Implications 

Advanced practice pediatric nurses and other health care providers may not relate to this type of language. They often are focused on preventing or treating the child's asthma symptoms. However, medical language and metaphors differ. Thus, Bettelheim (1977) offers this advice: “Adult interpretation, as correct as they may be, rob the child of the opportunity to feel that he, on his own, through repeated hearing and ruminating about the story, has coped successfully with a difficult situation. We grow, we find meaning in life, and security in ourselves by having understood and solved personal problems on our own, not by having them explained to us by others” (pp. 18-19).

Early management of asthma symptoms is possible if providers understand the children's language, which would result in more control for children over their asthma and their lives.

The metaphors described here can be divided into those that are internal to the child's body—the troll and the crackers—and those that are external—the jellyfish and the guardian angel. The internal metaphors allow the children to be aware of very early symptoms before they are known to others. Early management of asthma symptoms is possible if providers understand the children's language, which would result in more control for children over their asthma and their lives. The external metaphors are different. The jellyfish is out there and can get you without your knowing it. It takes active participation on the part of the child to prevent himself from being stung. The guardian angel is to protect you and it does its work without help from the child. The angel creates positive and healthy options. However, the child can choose to follow these or not.

Children who explain asthma in their own terms will feel valued and invested in their own health care as they find that their voices make a difference in decisions about their care.

Not all children use this elaborate language system to describe their asthma experiences. However, nurses who address the metaphors of the children who do use such a system will find that the children are able to successfully organize their thoughts and feelings, conscious and unconscious, about their asthma. Children who explain asthma in their own terms will feel valued and invested in their own health care as they find that their voices make a difference in decisions about their care.

Although this study's sample was small, the rich description provided by several participants is considered appropriate in qualitative research. However, generalizability is a limitation, warranting additional large-scale study to explore African American children's descriptions of their asthma. Further, more research is needed to compare children's asthma perceptions and experiences according to age, ethnicity, and asthma severity.

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Conclusion 

Part of what makes the child's metaphor unintelligible to health care providers is that they take the metaphor literally. Seeing no logic in the description, they dismiss it as a child's total fantasy, or worst yet, they do not to acknowledge the metaphor at all. Language “is treated not as a personal expression but as a transparent universal code” (Kirmayer, 1992, p. 339). “Asthma” as described by health care providers may not be congruent with the child's description of asthma. Likewise, “jellyfish” for the child is not “jellyfish” for the health care provider. The inability of health care providers to understand the metaphoric and contextual basis of the child's discourse may limit the quality of the child's health care. In Bethlehem's (1977) words, “…realistic explanations are usually incomprehensible to children, because they lack the abstract understanding required to make sense of them. While giving a scientifically correct answer makes adults think they have clarified things for the child, such explanations leave the young child confused, overpowered, and intellectually defeated. A child can derive security only from the conviction that he understands now what baffled him before—never from being given facts which create new uncertainties” (pp. 47-48).

Children with asthma should be provided opportunities to freely describe their asthma perceptions and experiences. Providing such opportunities may create a challenge considering current health care delivery issues. However, if advanced practice pediatric nurses and other pediatric health care providers explore and incorporate the child's metaphor in their explanations and asthma management plans, meaning would be shared, treatment plans could be negotiated and followed, and better health outcomes for the child with asthma could be achieved.

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