Journal of Pediatric Nursing (2011) 26, 25–33
Asthma: A Health Disparity Among African American Children The Impact and Implications for Pediatric Nurses Annette Baker Hines RN, MSN ⁎ The University of North Carolina at Greensboro, Greensboro, NC
Key words: Asthma; African American; Children; Disparity
Asthma is the most common chronic illness among children and is a significant health disparity for African American children and their families. This article provides current statistics that clearly define the problem of asthma and explains the relevance of this health problem for pediatric nurses. The Healthy People 2010 objectives for pediatric asthma care are discussed as outcome measures. The individual, sociocultural, and environmental characteristics of asthma are described. The impact and implications for pediatric nurses in the roles of (a) coordinator of care, (b) child/family advocate, and (c) evaluator of care are explained. © 2011 Elsevier Inc. All rights reserved.
HEALTH DISPARITIES EXIST when people experience a lower quality of health care based on their race or ethnicity (Smedley, Stith, & Nelson, 2003). According to Smedley et al. (2003), this difference in the quality of health care is not attributable to other known factors, such as health care access, socioeconomic position, clinical needs, or the appropriateness of interventions. Researchers are studying the phenomenon of disparate health care from many different perspectives, such as patient characteristics, environmental factors, sociocultural influences, and specific diseases. This discussion analyzes the health problem of asthma among African American children through the lens of health disparities and discusses the implications for pediatric nurses (American Thoracic Society, 1998).
The Problem Because the prevalence of chronic illness among minority children in the United States is increasing (Centers No extramural funding or previous presentation. ⁎ Corresponding author: Annette Hines, RN, MSN. E-mail address:
[email protected]. 0882-5963/$ – see front matter © 2011 Elsevier Inc. All rights reserved. doi:10.1016/j.pedn.2009.10.006
for Disease Control and Prevention [CDC, 2007]), this population is an area of mounting concern for pediatric nurses. Currently, 15% to 18% of U.S. children live with chronic illness (Barlow & Ellard, 2008; CDC, 2007). Within this growing phenomenon of chronic illness among children, asthma remains the most common chronic pediatric illness, affecting more than 6.8 million U.S. children (American Lung Association [ALA], 2009; CDC, 2007). There is a trend of increased asthma among children from a prevalence rate of 8.9% in 2006 to 9.3% in 2007 (ALA, 2009). Within the pediatric population, the highest prevalence rate is among 5- to 17-year-olds, at 106.3/ 100,000 children (ALA, 2009). The increase in asthma incidence and prevalence has occurred despite multiple national, state, and local programs aimed at reducing asthma among children (ALA, 2009). Pediatric nurses who care for children in a variety of settings, such as emergency departments, acute care, general and specialist pediatric offices, and schools, are in contact with children with asthma and need to be aware of the large number of children and families who are affected by this disease (Banasiak & Bolster, 2008; Clayton, 2005; Erikson, 1950). It is also important for the pediatric nurse to understand the gender and race differences within asthma prevalence.
26 Males are more likely to have asthma, with a rate of 7% among males overall, as compared to a 4% rate among females (ALA, 2009). Most significantly, when studying asthma through the lens of health disparities, there are disproportionate numbers of minority children with asthma. There is an overall asthma rate of 8% among African American children, compared to a 5% rate among White children (ALA, 2009). Specifically, the asthma prevalence rate for African American boys is an alarming 16% and is much higher than the 8% rate for African American girls (CDC, 2007). The asthma prevalence rate for African American boys increased from 12% in 2001 to 16% in 2004 (CDC, 2007). African American girls have the next highest prevalence rate, but the rates for girls are declining from a peak rate of 12% in 2003 to 9% in 2004 (CDC, 2007). The pediatric nurse who practices in a setting that sees a large number of African American males frequently encounters asthma and must recognize it as a health disparity for this population. An example of this practice situation is the urban setting; according to the CDC, minorities and children living in urban areas have higher morbidity and mortality due to asthma (CDC, 2007). Although overall asthma mortality rates are decreasing, asthma was responsible for 3,816 deaths in 2004 (ALA, 2009). Fortunately asthma rarely leads to death in children, and only 141 (b5%) of the asthma deaths were children younger than 15 years (ALA, 2009). In the Third National Health and Nutrition Examination (NHANES) Survey, African American children 10 years and younger had the highest risk for increased asthma prevalence, morbidity, and mortality (Third NHANES, 2008), which is compelling evidence that this is a serious health disparity in the United States. The pediatric nurse also needs to recognize the substantial costs related to asthma care. The annual health care cost of asthma in the United States is more than $19.7 billion, with $14.7 billion in direct costs and another $5 billion in indirect costs (ALA, 2009). On an individual level, the average cost for a patient with asthma is $4,912 per year, and patients with more severe disease had significantly more costs associated with asthma management (ALA, 2009). Families from minority groups who are economically disadvantaged often bear an enormous financial burden caring for a child with asthma. An average income of an African American family is $30,858, as compared to the average income for a White family of $46, 326 (The United States Census Bureau, 2008). In 2007, 24.5% of African American families lived below the poverty level, as compared to 10.5% of White families (The United States Census Bureau, 2008). Hospital care for asthma is more expensive than outpatient care, and the hospitalization rate for African American children is three times higher than the rate for Whites (Gupta, Bewtra, Prosser, & Finklestein, 2006). Pediatric nurses in the primary care setting are aware that there are disparities in access to effective outpatient management of asthma. This lack of coordinated, quality
A.B. Hines care for asthma often results in the need for inpatient care and hospitalization. Of all hospitalizations for asthma in 2006, 44% of these hospitalizations are for children (Asthma and Allergy Foundation of America, 2008). The hospitalization rate for African Americans with asthma is 1.4 to 4.0 times that in Whites with asthma (Diette & Rand, 2007), which is often a direct result of lack of access to quality ambulatory care. In addition, African American children with asthma are more likely to receive care in the emergency department as compared to Whites (Gupta et al., 2006). Asthma ranks third in reasons for hospitalization for children and was responsible for more than 679,000 emergency department visits in 2005 (ALA, 2009). The development of specialized pediatric care is a method to ensure that these children receive quality care for asthma in the emergency setting but does not take the place of primary care, and these specialized services are often not economically feasible for smaller hospitals. Asthma causes disruption in the child's ability to perform daily tasks and is the most common reason for school absenteeism (ALA, 2007; Asthma and Allergy Foundation of America, n.d.). Minority children often have other risk factors for poor school performance, and school achievement decreases with frequent school absenteeism (Mitchell, Adams, & Murdock, 2005; Moonie, Sterling, Figgs, & Castro, 2006). The short-term effects of poor achievement in school cause difficulties for the child and family. However, the long-term effects can include lower educational opportunities and earning power for a lifetime. The evidence shows that asthma has a negative impact on school attendance, which is a vital and formative aspect of a child's life (Mitchell et al., 2005; Moonie et al., 2006; Telljohann, Dake, & Price, 2004). Table 1 provides a focused summary of the factors that contribute to asthma as a health problem for this population.
National Objectives Based on these persuasive statistics, it is not surprising that asthma was a priority within the Healthy People 2010 goals (U.S. Department of Health and Human Services, 2000). The goals included reducing asthma deaths, hospitalization, and emergency department visits. Asthma in children is also classified as an ambulatory-care-sensitive condition, that when managed appropriately does not result in hospitalization. Although there are no current preventative Table 1 • • • • •
Why is Asthma a Health Problem?
Increasing asthma incidence and prevalence Gender and racial differences Cost related to health care Lack of coordinated, quality care Most common reason for school absenteeism
Asthma, A Health Disparity strategies for asthma, health promotion is still possible for the children who live with asthma. Therefore, Healthy People 2010 included a goal to increase the number of health departments who offer culturally appropriate health promotion programs for children with asthma. Because exposure to secondhand smoke is a known environmental asthma trigger, the Healthy People 2010 goal to reduce the number of children who are exposed to secondhand tobacco relates directly to many children with asthma. African Americans accounted for approximately 13% of the 45.3 million adults who were current U.S. smokers in 2006 (ALA, 2009). The prevalence of smoking among African Americans follows the national trend and declines as education levels increase (ALA, 2009). Healthy People 2010 also proposed a goal to decrease the number of school days missed due to asthma, which targets a sequela of asthma that has potentially devastating long-term effects. The overarching goals of Healthy People 2010 were to increase quality of life and to eliminate health disparities (U.S. Department of Health and Human Services, 2000). Poorly managed asthma is a major hindrance to the accomplishment of both of these goals, especially for the U.S. pediatric African American population. The statistics illustrate the prevalence of this problem among this population and the need for better understanding of this phenomenon (Dozier, Aligne, & Schlabach, 2006).
Characteristics of Asthma as a Health Disparity The characteristics of asthma as a health disparity are discussed in this section with an emphasis on patient, environmental, and provider variables as influences on the problem of asthma (Table 2). Pediatric nurses need current knowledge and understanding of these specific aspects of asthma among U.S. African American children before they can propose and implement effective interventions. Pediatric asthma has far-reaching effects for the African American
Table 2
Characteristics of Asthma s a Health Disparity
• Individual characteristics ◯ Genetics ◯ Skin test reactivity ◯ Low self-efficacy • Sociocultural characteristics ◯ Urban/Low socioeconomic groups ◯ Method of payment for health care ◯ Provider characteristics and communication techniques ◯ Negative patient attitudes toward health care • Environmental characteristics ◯ Emotional stress ◯ Poor air quality ◯ Housing ▪ High fungal levels ▪ High lead levels
27 child and family who struggle to manage this condition on a daily basis.
Individual Characteristics There are individual-level characteristics associated with having asthma that help to explain the high prevalence of asthma among African American children. Asthma does have a significant genetic component. According to the Asthma and Allergy Foundation of America (2008), if one parent has asthma, the child has a 30% chance of having asthma. The chance of asthma increases dramatically to 70% if both parents have asthma (Asthma and Allergy Foundation of America, n.d.). Another individual patient variable is skin test reactivity to allergens, which is a significant contributor to asthma exacerbations for some children with asthma. In a 2004 study, the children of White, Hispanic, and African American descent were compared for skin test reactivity. The results showed that Hispanic children had the highest risk of sensitization of these three ethnic groups based on skin testing. African American ethnicity was also associated with an increased risk of skin test reactivity (Celedon et al., 2004), which supports the importance of sensitization testing and appropriate immune therapy as an aspect of care for the African American child with asthma. Although the Hispanic children with asthma in this study had the highest risk of sensitization and experience with health disparities, African American children with asthma have significantly poorer access to care and asthma management outcomes, as compared to other minority groups (Smedley et al., 2003). Robinson, Calmes, and Bazargan (2008) performed an intervention study aimed at examining the relationships between the children's individual characteristics, selfefficacy, and reading level and hospitalization and emergency department visits for asthma. The population sample was composed of minority children with asthma in urban Los Angeles, CA. After a literacy intervention for the children, both the hospitalizations and emergency department visits for asthma decreased significantly during the following 6month period (Robinson et al., 2008). This study supports the theory that enhancing health-promoting individual characteristics, such as self-efficacy and reading levels, can lead to improved asthma-related outcomes for minority children. As part of a comprehensive assessment, the pediatric nurse needs to ask about the child's school performance. This may provide valuable information about an individual characteristic, such as literacy, that has a potential impact on the child's asthma management.
Sociocultural Characteristics Social and cultural level characteristics also affect the prevalence of asthma among African American children. Asthma is overrepresented in children from urban and low socioeconomic groups, and African American children are
28 more likely to be in these groups (CDC, 2007). Miller (2000) investigated the effect of race, ethnicity, and income on early childhood asthma prevalence and health care use. Findings revealed that increased family income of White children was associated with decreased asthma prevalence, hospitalizations for asthma, and emergency department use for asthma treatment (Miller, 2000). However, the African American children with asthma did not experience this same effect of improved asthma rates and care with increasing income, suggesting that there is significant racial disparity among African American children with asthma in middle- to high-income families. Miller (2000) and colleagues also investigated the effects of other societal and environmental factors, such as maternal age, maternal educational level, marital status, low birthweight, number of siblings, and exposure to second-hand smoke in this same study and found no relationship with asthma prevalence and care. This is important evidence that differences in health care are related to race rather than income and other societal factors. For the pediatric nurse who cares for African American children, this means that these children are at higher risk for developing asthma, as compared to children of other races. Because time and financial resources are limited, assessment screenings and subsequent nursing interventions can be targeted appropriately at this population based on the knowledge of the increased prevalence of asthma among African American children. Another societal factor is the method of payment for services for asthma care. In a 2006 study of 54,029 hospital admissions for asthma, Gupta et al. (2006) evaluated the race and type of insurance and their influence on hospital charges for children with asthma. In the results, all minority groups had higher hospital charges as compared to the charges for White children. The hospital charges for African American children were 10% higher as compared to charges for White children. The highest charges were for Hispanic children and were 21% higher than the charges for Whites. The authors posed potential explanations for these differences such as increased severity of illness and need for care delivered by advanced practice nurses among the children from minority groups but also admitted that less efficient and effective care for these children are reasons for the increased hospital charges (Gupta et al., 2006). Within the health care system, a child with asthma often has complex health care needs that require more time and services to address these issues. Pediatric nurses have the opportunity and expertise to provide coordination for their complicated care, although the lack of allocation and reimbursement for longer outpatient visits is a frequent problem (Diette & Rand, 2008). Provider characteristics are a societal factor present in health care systems that contribute to health disparities for African American children with asthma. The care for these children is often complex, and clear effective communication is vital to enhancing management of the condition for the child and family. Provider characteristics, such as expectations, stereotypes, and communication skills have
A.B. Hines potentially negative effects on the efficacy of communication (Diette & Rand, 2008). As providers of care, pediatric nurses need to deliver culturally competent care and have opportunities to facilitate communication between health care providers and families. A cultural characteristic of African Americans that may contribute to asthma as a health disparity is mistrust and a reluctance to seek care from health care providers, which occurs frequently among people from minority groups based on historical discrimination and maltreatment (LaVeist, 2002; Smedley et al., 2003). Asthma is a condition characterized by an underlying inflammatory process, with periods of latency and exacerbations (ALA, 2009). During the latent phase of asthma, the child is often asymptomatic; however, the inflammatory condition remains active, especially in the lower airways. With exposure to a trigger, the airways constrict due to their hyperresponsiveness, causing coughing and wheezing (ALA, 2009). Based on the classification of asthma, daily preventative treatment is often the standard of care to best manage the disease (Asthma and Allergy Foundation of America, n.d.). If the family has a mistrusting attitude toward health care providers, they are less likely to follow instructions for preventative home management and delay seeking care for exacerbations (Smedley et al., 2003).
Environmental Factors The pediatric nurse must be aware of the environmental factors, which are the most influential characteristics for the African American child with asthma (Breysse et al., 2004). These factors include community violence (Wright et al., 2004), fungal levels (Stark et al., 2005) deteriorating housing (Breysse et al., 2004), lead levels (Joseph et al., 2005), and air pollution (Diette et al., 2007; Lewis et al., 2005). These issues are discussed in more detail because environmental factors are often asthma triggers and are responsible for both acute attacks and exacerbations of the condition (ALA, 2009; Asthma and Allergy Foundation of America, n.d.). Emotional stress is a potential trigger for asthma symptoms and exacerbations. Living in a community with a high level of violence is an emotional stressor for a child with asthma. Nurses who care for pediatric clients in community settings are well aware of the negative impact of these environmental factors on a child's management. In a 2004 study of children with asthma who live in neighborhoods with increased exposure to violence, the child's caregiver reported more days of asthma symptoms (p b .008) and fewer hours of caregiver sleep per night (p b .02) after controlling for other environmental factors, such as socioeconomic position, housing deterioration, and negative life events (Wright et al., 2004). The problem of community violence is an important environmental factor for African American children with asthma because these children are more likely to be exposed to violence and incur the negative effects on their health. The pediatric nurse should consider
Asthma, A Health Disparity the environmental asthma triggers in the child's specific community (Sullivan, 2008). Children with asthma are particularly at risk for adverse health effects from exposure to poor air quality. Diette et al. (2007) studied the effect of indoor pollutants among innercity children with and without asthma. Because a high percentage of African Americans live in urban settings, it is important to study this factor as a contributor to asthma prevalence. The sample for this study was 300 children living in Baltimore, composed of 91% African American and 9% White children. Although the results did not show that indoor pollutants, such as particulate matter, nitrogen dioxide, and ozone, had a causative role in the development of asthma in the children in this sample (Diette et al., 2007), these exposures do exacerbate existing asthma and its symptoms. Therefore, exposure to indoor pollutants does worsen existing asthma for many children who live in urban environments with decreased indoor air quality. A similar study by Lewis et al. (2005) investigated the effect of ambient pollution, such as particulate matter and ozone, on lung function in children with asthma in Detroit. These findings suggest that levels of air pollutants in Detroit, which are above the current National Ambient Air Quality Standards from The Clean Air Act (Environmental Protection Agency, 2009), adversely affect lung function of susceptible children with asthma (Lewis et al., 2005). Housing is closely related to several risk factors for asthma, especially the exposure to poor air quality, allergens, and neurotoxins. However, when housing was evaluated as a potential determinant of asthma by the National Center for Healthy Housing in 2002, there was a lack of consensus on measurement of housing standards, incomplete understanding of home hazards and interventions, and a problem with limited political support to improve access to healthy housing (Breysse et al., 2004). Specifically, Stark et al. (2005) studied the impact of high fungal levels in the home and the development of allergic rhinitis. The results showed that African American children with a family history of asthma or allergic rhinitis had a statistically significant (p b .005) increased risk of developing allergic rhinitis when there were high fungal levels in the home. Elevated blood lead levels have also been studied as an environmental factor related to asthma, and this indicator shows racial differences (Joseph et al., 2005). Researchers hypothesize that lead exposure alters the immune system by increasing levels of immunoglobulin E, which is associated with asthma. In a study by Joseph et al. (2004), African American children had higher blood lead levels, but there was not a statistically significant association between these levels and the development of asthma. Despite these higher blood lead levels, African American children were at a higher risk of developing asthma, which is further evidence of asthma as a health disparity (Joseph et al., 2005). A comprehensive assessment of the adequacy of housing by the pediatric community health nurse should address these asthma
29 triggers. The nurse can recommend alteration to the environment to remove asthma triggers and to lessen the negative impact of the child's home environment on asthma management. It is important for the pediatric nurse to understand the different factors that are associated with asthma as a health disparity. There are individual variables, such as genetics and allergen sensitization, that are related to asthma prevalence and treatment (Celedon et al., 2004). Societal factors, such as the level of violence in the community and the use of Medicaid for asthma care are influential factors (Gupta et al., 2006; Wright et al., 2004). Asthma is strongly influenced by environmental factors, and African American children have a higher exposure rate to these potentially harmful triggers, such as environmental lead and fungal levels (Stark et al., 2005). With knowledge of these various factors, the pediatric nurse can individualize interventions to promote better asthma care and outcomes.
Asthma, the African American Child, and the Pediatric Nurse This section synthesizes the literature related to African American children with asthma and the health disparity that exists for this section of the U.S. population. The burden of living with asthma for a child and family is not evenly distributed and falls heavily on the African American child and family. It is crucial for pediatric nurses to understand this ethical dilemma of unequal treatment (Smedley et al., 2003), so the phenomenon of disparate health care for African American children with asthma is eliminated, and long-term consequences of poor asthma management are prevented. A potential long-term sequela of asthma is airway remodeling, in which structural cellular changes are responsible for permanent changes in the airways that decrease airflow and responsiveness to medication (National Heart, Lung, and Blood Institute, 2002, 2007). The pediatric nurse can facilitate adequate management of asthma to prevent this long-term complication. Careful management is especially important for children because they can potentially live with asthma for many decades.
Impact of Asthma on the African American Child and Family Based on a family-centered model of care, the pediatric nurse realizes that chronic illness has a wide range of effects on the individual child and on families. This continuum is dependent on many factors, including the specific illness, the complexity of the daily regimen, and the necessity of frequent medical attention and hospitalization (ALA, 2007; Children with Chronic Illness, 2008; Jenkins et al., 2003). On an individual level, the African American child with asthma may feel different from his or her peers and may experience
30 isolation and depression (Boling, 2005; Chiou & Hsieh, 2008; Saunders, 1999). These feelings may result from any of the following factors: (a) restricted activity due to asthma, (b) need for medication in the school setting, or (c) frequent absences from school and/or social activities due to asthma-related illness. Children who are minorities in their school settings, such as the middle-income and higher income African American children with asthma, are at increased risk for these negative feelings due to the combined impact of racial and health-related differences from their peers. The African American child with asthma is at increased risk for ineffective coping with the stress of asthma because the child is often dealing with other stressors, such as low socioeconomic position and community violence. For all children with chronic illness, increased age and developmental level are associated with better understanding and coping with the illness (Children with Chronic Illness, 2008); however, this has not been studied specifically in minority children. In several studies, families reported that the stress and demands of the management of a child's chronic illness decrease as the child grows older, but this effect is disease dependent and has not been studied in the African American population specifically (Barton, Sulaiman, Clarke, & Abramson, 2005; Hopia, Paavilaninen, & Astedt-Kurki, 2004; Wales, Nadew, & Crisp, 2007). Nurses who care for this population can provide valuable data and insight into the impact of asthma on the African American family. Pediatric school nurses encounter the marked effects of asthma on the African American child on a daily basis, which are especially evident in the area of school absenteeism. Asthma is the most frequent reason for school absenteeism and accounts for more than 8 million missed school days (ALA, 2009). Moonie et al. (2006) studied the severity of asthma and its association with school absences. Overall, children with asthma missed more school days than did children without asthma, but asthma severity was not a significant factor. Although the African American children with asthma had more absences than the African American children without asthma, the overall absentee rates for African Americans were lower when compared to the absentee rates for Whites (Moonie et al., 2006). This overall lower absenteeism rate among African American children is a positive factor and may buffer a portion of the negative effects that asthma has on school performance.
Environmental Factors Impacting the African American Child With Asthma Environmental factors play an important role in the lives of the African American children with asthma. A high percentage of these children live in urban environments that pose significant threats to their health. These children are affected by poor air quality, both indoors (Diette et al., 2007) and outdoors (Lewis et al., 2005). Specifically, the
A.B. Hines relationship between exposure to secondhand tobacco smoke and asthma exacerbation has been established and targeted as a goal from Healthy People 2010 (U.S. Department of Health and Human Services, 2000). Urban housing often creates unhealthy environments for African American children with asthma, with poorer air quality, increased fungal and lead levels, and allergen exposure (Breysse et al., 2007; Diette et al., 2007; Stark et al., 2005). Although community violence has been associated with an increased prevalence of asthma (Wright et al., 2004), there is inconclusive evidence that other environmental factors are associated with the increased prevalence of asthma among African American children (Breysse et al., 2004; Diette et al., 2007; Joseph et al., 2005). For many families, moving to a safer neighborhood is not financially feasible. Some environmental asthma triggers can be removed with minimal cost and effort, such as moving pets outside, smoking outdoors, and removing heavy bedding. However, for people with limited financial resources, extensive environmental changes are not economically realistic. The knowledge that environmental factors exert a significant effect on the exacerbation of asthma symptoms and increase the need for treatment (ALA, 2007; Lewis et al., 2005; Miller, 2000) is important for pediatric nurses who care for African American children with asthma. Nurses can implement teaching about realistic measures to change the child's environment and improve health outcomes. Although environmental factors are frequently cited as reasons for the increased prevalence of asthma among African American children, the current literature does not support this theory (Diette & Rand, 2007; LaVeist, 2002; Smedley et al., 2003). The increased prevalence of asthma in these children is further evidence of the magnitude of asthma as a health disparity among this population. Asthma is a multifactorial problem that is influenced by environmental factors, but the health disparity persists when studies control for these factors.
Implications for Pediatric Nurses in Decreasing Disparate Health Care Based on the factors related to disparities in health care for African American children with asthma, there are many opportunities for pediatric nurses to positively affect this problem. Pediatric nurses are in contact with children with asthma and their families in a variety of settings, including primary care settings, emergency departments, specialists' offices, and schools. In each of these settings, the pediatric nurse has opportunities to positively impact the child's asthma management program and to decrease health disparities. Although the nurse assumes many roles in the provision of care, this discussion will focus on the nurse in the roles of coordinator of care, child and family advocate, and evaluator of care.
Asthma, A Health Disparity
Coordinator of Care Pediatric nurses realize that the health care needs of children with chronic illness, such as asthma, are very different from a child who does not have a condition that requires daily care and management. The child with asthma requires regular, preventative care from a primary care provider, along with care from specialists. This care can often be complicated and costly, requiring coordination of services. The communication with health care providers is a vital intersection where disparities can be addressed and decreased (Diette & Rand, 2008). The pediatric nurse can also facilitate effective communication among the multiple providers so the child has less fragmentation of care. The child and family are much less likely to use the more costly option of emergency department care when they have an established and trusting relationship with a primary care provider (Gupta et al., 2006). The increasing numbers of children with chronic illness has led to a paradigm shift in the delivery of pediatric care (Coffey, 2006; Hayman, Mahon, & Turner, 2002; Hopia et al., 2004). Previously, the focus in family-centered care was episodic visits for acute conditions, along with an annual well child examination. Pediatric nurses had regular contact with children and their families when the child was well and could then apply this baseline assessment data when they saw the child for sickness. However, now there are millions of children who require close and ongoing management for a chronic illness from a primary care provider and also require specialty services to ensure optimum care and outcomes. Although the child is being cared for by a pediatric nurse in each of these settings, the care is often fragmented because the nurse in the specialty setting does not see the child when he is well and does not participate in anticipatory guidance and health promotion teaching. Conversely, the nurse in the primary care setting often does not see the child when they are acutely ill and therefore does not observe the full impact of the illness on the child and family. Minority children are much less likely to receive care by specialists (Smedley et al., 2003) and to have more frequent care in emergency department settings (Gupta et al., 2006), which results in further fragmentation of care and poorer health outcomes. Pediatric nurses practice in the various settings where African American children with asthma seek health care. Nurses who follow the current standard of family-centered pediatric care assess both the child and family to plan and implement effective care for the African American child with asthma (Bomar, 2004). It is at these points of contact between nurse and child/family that the quality of health care and the resulting outcomes can change. This is the beginning point for solving the problem of disparate health care for African American children with asthma. Pediatric nurses have the knowledge and trusting relationship with the child and family to educate them about asthma management, especially the early warning signs of an asthma attack. With this knowledge, the child's medication regimen can be
31 altered to adequately control symptoms and to prevent an exacerbation of asthma. It is also important to educate the child and family about environmental asthma triggers and to help the family make alterations in their lifestyle to decrease exposure to these offenders.
Child/Family Advocate Asthma is the most common chronic illness in children and places added stressors on the child and the entire family. For the African American child with asthma, this situation is worsened by the disparate health care afforded these children. After controlling for other factors that have been discussed, the outcomes for African American children with asthma are much poorer when compared to White children with asthma. After a review of the literature, it is evident that asthma in African American children meets the criterion of unequal treatment that defines health disparities (Smedley et al., 2003). Educating the child and family about asthma management is an essential aspect of the advocacy role. The Asthmatic Schoolchildren's Treatment and Health Management Act of 2004 is federal legislation that gives the child the legal right to access to emergency medication while in the school setting (The Asthmatic Schoolchildren's Treatment and Health Management Act, 2004). The results of a 2007 survey by the ALA are disturbing because parents of children with asthma and/or allergies reported that they did not know that children can self-administer medication at school (ALA, 2007). This is evidence that there is a crucial need for nurses to act as advocates for children and families in the effective implementation of this legislation. Obviously, parents and school officials do not have the information that they need to provide a safe school environment for children with asthma, and nurses play a vital role as advocates for the patient. In particular, the school nurse advocates for the student with asthma by educating students, parents, faculty, and staff about asthma (Borgmeyer, Jamerson, Gyr, Westhus, & Glynn, 2005; Englund, Rydstrom, & Norberg, 2001; Fiese, 2008; Fiese, Winter, Anbar, Howell, & Poltrock, 2008; Hill, 1949; Hobfall & Spielberger, 1992; Holden, Wade, Mitchell, Ewart, & Islam, 1998; Hollidge, 2001; Jacques, n.d.; Perry & Ireys, 2001; Stages of Social and Emotional Development in Children and Teenagers, n.d.; Werk, Steinbach, Adams, & Bauchner, 2000; Williams et al., 2002).
Evaluator of Care No matter what the particular setting is, pediatric nurses who have contact with children have the opportunity to evaluate care. However, the nurses in the school setting are in the best position to evaluate the effectiveness of the selfmedication policies. School nurses' documentation of the use of self-administered inhalers provides valuable data to support a safer school environment. The large, school-
32 based asthma education programs have collected valuable data for evaluation of care and asthma outcomes. A program with an inner-city largely African American population resulted in increased knowledge of asthma management, but the children who received the educational program did not have decreased school absences, emergency department visits, or hospitalizations (Gerald et al., 2006). In contrast, another school-based program for elementary school minority children that linked school nurses, parents, and clinicians resulted in increased asthma self-management knowledge, better school performance, and fewer school absences when compared to children who received usual care (Bartholomew et al., 2006). The Asthma Action Plan, recommended by the American Academy of Pediatricians often includes selfmedication for asthma attacks and provides school nurses guidance and confidence in providing direct health care to students (Borgmeyer et al., 2005), which may include selfmedication for acute attacks. There is robust data collection for children with asthma, especially for programs that serve minority children. Pediatric nurses can access these data from large studies to evaluate the effectiveness of asthma management in the school setting. For instance, the school-based asthma management program, Open Airways, collected data from 14 urban elementary school serving predominantly minority children and gathered data from 186 teachers, 1,137 children without asthma, and 877 students with asthma (Anderson et al., 2005). The Partners in School Asthma Management is another example of a large-scale, school-based asthma education program with a resulting large dataset that included 835 children with asthma (Bartholomew et al., 2006). A third large-scale (n = 35,587) study is a crosssectional asthma survey conducted in 2003–2005 in Chicago elementary schools (Shalowitz, Sadowski, Kumar, Weiss, & Shanon, 2007). These large datasets are valuable resources for pediatric nurses to use in the role of evaluators of care. Pediatric nurses have the ability to significantly decrease health disparities among African American children with asthma. Because both the child and family must learn to live with asthma, it is imperative that pediatric nurses study this phenomenon and learn how to better support these families with daily management. Specific interventions to decrease disparities in asthma care for U.S. African American children are provided in Table 3. Pediatric nurses can intervene on an Table 3 Interventions to Decrease Health Disparities for African American children with Asthma Foster asthma self-management in the child/family Empower families to self-manage their child's asthma Educate families when to seek emergent care Promote family's effective communication with health care providers Coordinate care among providers in various acute care settings Advocate for policies that support healthy home, school, and community environments
A.B. Hines individual level to foster self-care and empower families to thrive within the constraints of the child's illness. On the system level, nurses are in contact with African American children with asthma and their families in various practice settings where they can facilitate coordinated quality care. Nurses can promote effective communication among providers when the child is seen by primary care providers, specialists, and by emergency department providers for emergent care. The asthma management outcomes for these children can be improved by nurses who coordinate and evaluate care. School nurses are also in pivotal positions at the systems level to implement asthma education and support programs for African American children and their families. At the policy level, nurses can advocate for policies that support healthy environments for this population. For example, poor air quality is an environmental asthma trigger, and laws that restrict air pollution will help prevent acute asthma attacks in sensitive children and may result in better asthma outcomes. Governmental funding is needed for programs that focus on asthma among African American children and provide culturally competent interventions that are consistent with the cultural values and beliefs of this group. Pediatric nurses also need knowledge of the widespread prevalence of asthma as a health disparity and the need for interventions on multiple levels to address this problem adequately.
References Anderson, E., Valerio, M., Liu, M., Benet, D., Joseph, C., Brown, R., et al. (2005). Schools' capacity to help low-income, minority children to mange asthma. The Journal of School Nursing, 21, 236−242. American Lung Association. (2009). Search lung USA.1-4. Retrieved March 20, 2009 from http://www.lungusa.org/site/pp.asp? c=dvLUK9O0E&b=22782. American Thoracic Society. (1998). Research priorities in respiratory nursing. American Journal of Respiratory Critical Care Medicine, 158, 2006−2015. Asthma and Allergy Foundation of America. (n.d.). Asthma facts and figures. Retrieved March 20, 2009 from http://www.aafa.org/display. cfm?id=8&sub=42. Banasiak, N., & Bolster, A. (2008). Pediatric asthma. RN, 71, 26−32. Barlow, J., & Ellard, D. (2008). The psychosocial well-being of children with chronic disease, their parents and siblings: An overview of the research evidence base. Child Care, Health & Development, 32, 19−31. Bartholomew, L., Sockrider, M., Abramson, S., Swank, P., Czysewski, D., Tortorlero, S., et al. (2006). Partners in school asthma management: Evaluation of a self-management program for children with asthma. Journal of School Health, 76, 283−290. Barton, C., Sulaiman, Clarke, D., & Abramson, M. (2005). Experiences of Australian parents caring for children with asthma: It gets easier. Chronic Illness, 1, 303−314. Boling, W. (2005). The health of chronically ill children. Community Health, 28, 176−183. Bomar, P. (2004). Promoting health in families (3rd ed.). Philadelphia, PA: Saunders. Borgmeyer, A., Jamerson, P., Gyr, P., Westhus, N., & Glynn, E. (2005). The school nurse's role in asthma management. Can the action plan help? The Journal of School Nursing, 21, 23−30.
Asthma, A Health Disparity Breysse, P., Farr, N., Galke, W., Lamphear, B., Morley, R., & Bergofsky, R. (2004). The relationship between housing and health: Children at risk. Environmental Health Perspectives, 112, 1583−1588. Celedon, J., Sredl, D., Weiss, S., Pisarski, M., Wakefield, D., & Cloutier, M. (2004). Ethnicity and skin test reactivity to aeroallergens among asthmatic children in Connecticut. Chest, 125, 85−92. Centers for Disease Control and Prevention (CDC). (2007). Summary health statistics for U.S. children: National health interview survey. Series, 10, 4−9. Children with Chronic Illness. (2008). Retrieved March 20, 2009 from http: //med.umich.edu/1libr/yourchild/chronic.htm Chiou, H., & Hsieh, L. (2008). Comparative study of children's selfconcepts and parenting stress between families of children with epilepsy and asthma. Journal of Nursing Research, 16, 65−73. Clayton, S. (2005). Paediatric asthma: Overcoming barriers to an improved quality of life. British Journal of Nursing, 14, 80−85. Coffey, J. (2006). Parenting a child with chronic illness: A metasynthesis. Pediatric Nursing, 32, 51−59. Diette, G., Hansel, N., Buckley, T., Curint-Bronson, J., Eggleston, P., Matsui, E., et al. (2007). Home indoor pollutant exposures among inner city children with and without asthma. Environmental Health Perspectives, 115, 1665−1669. Diette, G., & Rand, C. (2007). The contributing role of health-care communication to health disparities for minority patients with asthma. Chest, 132(Suppl. Eliminating Health Disparities), 802−809. Dozier, A., Aligne, A., & Schlabach, M. (2006). What is asthma control? Discrepancies between parents' perception and official definitions. Journal of School Health, 76, 215−218. Englund, A., Rydstrom, I., & Norberg, A. (2001). Being the parent of a child with asthma. Pediatric Nursing, 27, 365−373. Erikson, E. (1950). Childhood and society. New York, NY: Norton. Fiese, B. (2008). Breathing life into family processes: Introduction to the special issue on families and asthma. Family Process, 47, 1−5. Fiese, B., Winter, M., Anbar, R., Howell, K., & Poltrock, S. (2008). Family climate of routine asthma care: Associating perceived burden and mother-child interaction patterns to child well-being. Family Process, 47, 63−79. Gupta, R., Bewtra, M., Prosser, L., & Finklestein, J. (2006). Predictors of hospital charges for children admitted with asthma. Ambulatory Pediatrics, 6, 15−20. Hayman, L., Mahon, M., & Turner, J. (Eds.). (2002). Chronic illness in children: An evidence-based approach. New York, NY: Springer Publishing Company. Hill, R. (1949). Families under stress. Westport, CT: Greenwood Press Publishers. Hobfall, S., & Spielberger, C. (1992). Family stress: Integrating theory and measurement. Journal of Family Psychology, 6, 99−112. Holden, G., Wade, S., Mitchell, H., Ewart, C., & Islam, S. (1998). Caretaker expectations and the management of pediatric asthma in the inner-city: A scale development study. Social Work Research, 22, 51−59. Hollidge, C. (2001). Psychological adjustment of siblings to a child with diabetes. Health and Social Work, 26, 15−25. Hopia, H., Paavilaninen, E., & Astedt-Kurki, P. (2004). Promoting health for families with children with chronic conditions. Journal of Advanced Nursing, 48, 575−583. Jacques, R. (n.d.). Family Issues. Retrieved September 11, 2008, from http:// www.intellectualdisability.info/families/family_issues_rj.html. Jenkins, H., Cherlniack, B., Stanley, J., Covar, B., Gelfand, E., & Spahn, J. (2003). A comparison of the clinical characteristics of children and adults with severe asthma. Chest, 124, 1318−1324. Joseph, C., Havstad, S., Ownby, D., Peterson, E., Maliarik, M., McCabe, M., et al. (2005). Blood lead level and risk of asthma. Environmental Health Perspectives, 113, 900−904. LaVeist, T. (Ed.). (2002). Race, ethnicity, and health; A public health reader. San Francisco, CA: Jossey-Bass. Lewis, T., Robins, T., Dvonch, T., Keeler, G., Yip, F., Mentz, G., et al. (2005). Air pollution-associated changes in lung function among
33 asthmatic children in Detroit. Environmental Health Perspectives, 113, 1068−1075. Miller, J. (2000). The effects of race/ethnicity and income on early childhood asthma prevalence and health care use. American Journal of Public Health, 90, 428−430. Mitchell, D., Adams, S., & Murdock, K. (2005). Associations among risk factors, individual resources, and indices of school-related asthma morbidity in urban, school-aged children: A pilot study. Journal of School Health, 75, 375−383. Moonie, S., Sterling, D., Figgs, L, & Castro, M. (2006). Asthma status and severity affects missed school days. Journal of School Health, 76, 18−24. National Heart, Lung, and Blood Institute. (2002). Initiative creates partnerships between research intensive and minority-serving institutions. Retrieved September 16, 2008 from http://www.nhlbi.nih.gov/ new/press/02-10-30a.htm. National Heart, Lung, and Blood Institute. (2007). Expert panel report 3: Guidelines for the diagnosis and management of asthma. (NIH Publication No. 07-4051). Washington, D.C.: U.S. Government Printing Office. Perry, D., & Ireys, H. (2001). Maternal perceptions of pediatric providers for children with chronic illness. Maternal and Child Health Journal, 5, 15−20. Robinson, L., Calmes, D., & Bazargan, M. (2008). The impact of literacy enhancement on asthma-related outcomes among underserved children. Journal of the National Medical Asoociaiton, 11, 892−896. Saunders, J. (1999). Family functioning in families providing care for a family member with schizophrenia. Issues in Mental Health Nursing, 20, 95−113. Shalowitz, M., Sadowski, L., Kumar, R., Weiss, K., & Shanon, J. (2007). Asthma burden in a citywide, diverse sample of elementary school children in Chicago. Ambulatory Pediatrics, 7, 271−277. Smedley, B. D., Stith, A. Y., & Nelson, A. R. (Eds.). (2003). Unequal treatment: Confronting racial and ethnic disparities in healthcare. Washington, DC: The National Academies Press. Stages of Social and Emotional Development in Children and Teenagers. (n.d.). Retrieved March 20, 2009 from http://med.umich.edu/1libr/ yourchild/chronic.htm. Stark, P., Celedon, J., Chew, G., Burge, H., Muilenberg, M., & Gold, D. (2005). Fungal levels in the home and allergic rhinitis by 5 years of age. Environmental Health Perspectives, 113, 1405−1409. Sullivan, C. (2008). Cybersupport: Empowering asthma caregivers. Pediatric Nursing, 34, 217−223. Telljohann, S., Dake, J., & Price, J. (2004). Effect of full-time versus parttime school nurses on attendance of elementary students with asthma. The Journal of School Nursing, 20, 331−334. The Asthmatic Schoolchildren’s Treatment and Health Management Act 108 U.S.C. §3977. (2004). Retrieved April 20, 2009 from http://thomas. loc.gov. The United States Census Bureau. (2008). People and families in poverty by selected characteristics; 2006 and 2007. Retrieved March 24, 2009 from www.census.gov/prod/2008pubs/p60-235.pdf Third National Health and Nutrition Examination Survey. (2008). Retrieved March 20, 2009 from http://www.cdc.gov/nchs/products/elec_prods/ subject/nhanes3.htm. U.S. Department of Health and Human Services. (2000). Healthy People 2010 (2nd ed., Vol. 2). Washington, DC: U.S. Government Printing Office. Wales, S., Nadew, K., & Crisp, J. (2007). Parents' and school-aged children's views on managing treatment adherence in asthma or diabetes. Neonatal, Paediatric and Child Health Nursing, 10, 26−30. Werk, L., Steinbach, S., Adams, W., & Bauchner, H. (2000). Beliefs about diagnosing asthma in young children. Pediatrics, 105, 585−590. Williams, P., Williams, A., Graff, J., Hanson, S., Stanton, A., Hafeman, C., et al. (2002). Interrelationship among variables affecting well siblings and mothers in families of children with a chronic illness or disability. Journal of Behavioral Medicine, 25, 411−424. Wright, R., Mitchell, H., Visness, C., Cohen, S., Stout, J., Evans, R., & Gold, D. (2004). Community violence and asthma morbidity: The innercity asthma study. American Journal of Public Health, 94, 625−632.