Abstract
Background. Despite improved treatment regimens for asthma, the prevalence and morbidity from asthma are increasing, especially among underserved, minority children.
Objective. The purpose of this study was to identify barriers to the treatment of asthma among urban, minority children as perceived by parents.
Methods. Parents were recruited from 4 schools located in low-income, urban areas with high rates of asthma hospitalizations. Focus groups involving parents of children 5 to 12 years old with asthma were conducted using a standardized questionnaire. Parents' comments were analyzed to identify barriers, and 3 independent raters coded parents' comments to assess reliability of interpretation.
Results. Forty parents who represented 47 children participated in the focus groups. All parents described their racial background as black. Parents' average age was 36.8 years, 92% were females, 70% were nonmarried, and 38% had less than a high school education. Forty-five percent of children had intermittent or mild asthma and 55% had moderate to severe asthma. The most frequent types of barriers identified by parents were patient or family characteristics (43%), followed by environmental (28%), health care provider (18%), and health care system (11%). Parents were specifically concerned about the use, safety and long-term complications of medications, the impact of limitation of exercise on their child's quality of life, and their own quality of life.
Conclusions. In contrast with the widespread beliefs that access to medical care, health insurance, and continuity of care are the major barriers to quality asthma care, the barriers most frequently reported by parents were related to patient and family characteristics, health beliefs, or to their social and physical environment. To improve asthma management and health outcomes for urban, minority children with asthma, it is critical to tailor education about asthma and its treatment, and address quality of life issues for both children and parents.
Asthma is the most common chronic disease of childhood, affecting an estimated 4.8 million children in the United States.1 Asthma is one of the most common reasons for pediatric hospitalization and accounts for 10.1 million missed school days per year.2–5 Studies have documented an increased prevalence of asthma among children from urban, minority, and low-income backgrounds.6–10 Prevalence rates among such children have been reported from 10% to 20%6,8whereas the prevalence for US children is 6%.5
Studies have also reported an increase in morbidity and mortality for asthma among urban children. The reasons for the disparity in rates of asthma are not readily apparent, but some studies report that risk factors such as race, income, and insurance status affect access and quality of health care services.8,11–18 These studies typically conclude, based on differences in health care utilization or access, that asthma severity or rates will be improved by altering health care systems or quality of asthma management.
A number of factors may contribute to higher asthma rates and severity of symptoms among impoverished, urban children. Patient or family characteristics including parental and child health beliefs, knowledge of asthma and asthma management skills, cultural issues, and competition of the child's asthma with other basic life needs may contribute to adherence with prescribed therapy for asthma treatment and prevention. Environmental factors such as geographic location, transportation, and increased exposure to certain allergens may also function as barriers to good health outcomes. Parents' inability to limit exposure to environmental triggers may be related to financial constraints or affordable housing. Families from impoverished backgrounds may be less likely to have family or community support for the asthma management of their children.19 Health care system factors such as lack or type of insurance may limit children's access to quality care. Policies may limit access to emergency departments (EDs) and the number or type of medications and medication delivery devices that can be dispensed. Finally, health care provider characteristics such as lack of continuity, availability of providers, and limited hours of operation may also contribute to poorer health outcomes for children from these backgrounds. Health care provider factors are those factors that can be modified or changed by the health care provider. Health care system factors are those related to whether parents have access to providers or health care based on insurance presence and type.
Although many of these factors have been suggested to function as barriers to optimal asthma management and good health outcomes, there are limited data regarding parental perspectives of barriers to optimal asthma care for children and families from urban, minority backgrounds.20–24 Most studies that examine parental perspectives are comprised of middle-class subjects or only include urban adults with asthma, not children. Thus, it is not clear that our assessment of barriers to asthma care is consistent with the parents' perceptions. The purpose of this study was to identify barriers that urban, minority parents perceive affect their ability to control or prevent their child's asthma symptoms.
METHODS
Subjects and Recruitment
Parents or legal guardians were recruited from 4 public elementary schools which are located in inner-city zip code areas identified to have high rates of pediatric asthma hospitalizations and which have >82% of children who come from families with incomes below the federally designated poverty level. Parents were offered a monetary incentive for participating.
Children who were 5 to 12 years old and had physician-diagnosed asthma were identified through school health records. Letters informing parents of the study were mailed to these children's homes. A postcard was included that allowed parents to decline participation. To maximize participation, letters and return postcards were also sent home from school with children. Parents who did not decline participation were contacted by telephone to determine interest and eligibility. School nurses assisted in communication and recruitment of parents who did not have telephones.
Inclusion/Exclusion Criteria
Inclusion criteria for the parents or guardians consisted of the following: 1) having a child between 5 and 12 years old who had physician-diagnosed asthma and experienced asthma symptoms in the last 24 months, 2) the child was identified by the parent as non-white, and 3) as an indicator of poverty status, participated in the free or reduced school lunch program. Parents were excluded if their child had any chronic medical illness in addition to asthma, with the exception of learning disabilities and attention deficit hyperactivity disorder.
At the time of enrollment, a recruitment questionnaire was administered to assess demographics and asthma severity. Questions on severity of disease were based on the criteria established for severity of disease by the National Heart, Lung, and Blood Institute'sGuidelines for the Diagnosis and Management of Asthma.25 The Cincinnati Public School Research Committee and the Children's Hospital Medical Center Institutional Review Board approved the study.
Focus Groups
The same experienced facilitator conducted 7 focus groups. Each focus group lasted 2 hours. The focus group facilitator used a standardized script of open-ended questions. The questions posed to the parents in the focus groups were “What things affect the kind of care your child gets for his/her asthma?”, “What things have made it difficult to keep your child with asthma healthy?”, and “Of these things, which are most significant to you and your child with asthma?”
Analysis
The focus groups were tape-recorded and transcribed. Each focus group transcript was then formatted so that each individual parent comment could be classified. Facilitator comments and questions, conversation filler, and redundant comments were blocked out. Comments coded as barriers were further classified by category and subcategory. A barrier was defined as any factor that adversely affects the optimal management for a child with asthma as perceived by the parent. These include items that affect access to care, quality of care, and the overall health status of the child with asthma. The 4 categories of barriers were patient or family, health care provider, health care system, and environmental. Statements were further classified into 1 of 32 subcategories. Further analysis of the focus groups was performed to determine common themes about perceived barriers.
Each comment by a parent was reviewed and grouped with other comments that had a similar subject matter. The comments that were most frequently mentioned, as well as those mentioned across groups, were determined to be the principal themes of the focus groups. A theme might incorporate comments from more than one subcategory.
Three independent raters reviewed the transcripts and classified parents' comments as barriers or nonbarriers, and then by category and subcategory. Interrater reliability was assessed using a kappa statistic for category. Interrater reliability for subcategories was assessed using percent agreement. Kappa statistics were computed using the Statistical Package for the Social Sciences (SPSS, Cary, NC).
RESULTS
Seventy-nine children who were between the ages of 5 and 12 and had asthma were identified through school health records from the 4 elementary schools. Fourteen of these children were siblings, leaving 65 households from which parents could be recruited. Three households were ineligible because the child did not meet inclusion criteria: no asthma symptoms within last 24 months (1), did not have physician-diagnosed asthma (1), and did not participate in free school lunch program (1).
Forty parents representing 38 (61%) of the 62 eligible households and 47 children who had asthma participated in 1 of 7 focus groups. The average age of parents was 36.8 years, 92% of parents were female, 70% were not married, and 38% had less than a high school education. All parents described their race as black (Table 1).
Demographics and Characteristics of Participating Parents and Their Children
Thirty-four percent of children were female, 55% had moderate to severe asthma, 62% used a community- or hospital-based clinic as the site for primary care, and 79% had Medicaid as their primary insurer (Table 1). There were no statistically significant differences in characteristics between participants and nonparticipants or their children, with the exception of marital status (P = .038) and primary care site (P = .002). None of the nonparticipants were married and only 31% of nonparticipants children used a hospital- or community-based clinic as a primary care site.
Of the 1030 individual parent comments, 618 (60%) were coded as barriers. Of these, 43% were classified as patient or family, 28% as environmental, 18% as health care provider, and 11% as health care system. The frequency of comments coded in a particular subcategory is indicated in Table 2.
Categories and Subcategories of Barriers With Frequencies/Percents
Kappa statistics for category ranged between .82 and .84 for each pair of independent raters, indicating excellent agreement for classification by category. Because agreement for subcategory is conditional on agreement for category, percent agreement was used to assess agreement between raters for subcategory. Percent agreement for pairs of independent raters ranged from 63% to 69%, 65% to 80%, 46% to 74%, and 91% to 97% for patient and family characteristics, health care system, health care provider, and environmental subcategories, respectively.
Further analysis of parental comments revealed 4 predominant themes.
Parental Adherence
Many parents modified the asthma management plan prescribed by their primary care provider. These modifications were based on health beliefs about the use, safety, and long-term complications of medication use. Often, these beliefs led to suboptimal management of their child's asthma. Parents understood the concept of preventing asthma symptoms, but they did not equate prevention with medication use. Instead, they preferred nonmedicinal alternatives for both treatment and prevention, such as calming techniques, breathing exercises, visualization or biofeedback techniques, and dietary manipulations. Thus, while the control and treatment for asthma is primarily based on administration of medications, many of these parents had strong personal and potentially cultural beliefs against the use of medications.
Some parents complained that health care providers do not take a holistic approach to managing asthma. The contrast between the biomedical approach to asthma management and parents' hesitations and concerns about medications was demonstrated repeatedly in all the focus group sessions. Some parents were hesitant to administer medications on a daily basis. They believed children would develop an addiction or become dependent on the medication, become immune or tolerant to the medication, or experience side effects.
Quotes from parents that reflect these concerns are:
“I am not a medicine mom”
“Why do people give their kids medicine, push drugs into their kids, and they ain't having no trouble breathing, they ain't wheezing … their body will be immune to it”
“My daughter does not take no medicine no other time than when she has an attack. That medicine every day. No”
Limitations of Activity
Parents were worried about the impact of physical activity restriction on their children. Many parents unnecessarily restricted physical activities based on a lack of knowledge or misinterpretations of their doctors' advice. They did not seem to appreciate the difference between limitations of activities during an asthma exacerbation and overall restrictions. Many parents reported that they had not received specific counseling from their care providers about physical activity or exercise. Other parents did not restrict activities because they worried about the psychological impact of the restriction, but they were uncertain if this contributed to increased symptoms in their children. Examples of parents' comments that support this interpretation were:
“This is what bothers me cuz her life is so restrictive. To be 8 years old and have to look out the window and watch everyone else play”
“What I wanted to know about is how … how the children act when they are playing. I was watching this program where they say it is good for a child to exercise while they have asthma. I'd never heard that”
“That is why I am allowing him to play football and all. I went through the whole mind set with my husband—like he shouldn't be playing that, but if I stop him from living and growing, then I will hinder him more on the positive state of mind that can really make him physically not want to do nothing”
Parental Quality of Life Issues
Parents voiced concerns about their own quality of life and the constraints placed on them by having a child with asthma. Many parents stated that having a child with asthma was a significant psychological burden because they had to keep a vigilant watch over their children because of the unpredictability of the disease. Parents often felt that health care providers underestimated their fears about having a child with a breathing disorder. This often motivated parents to seek care in the ED because they perceived that a breathing disorder is synonymous with an emergency.
Parental statements supporting these comments are:
“He slept right up under me until he was 4 … I hovered him that close. I couldn't sleep a wink”
“Well, I change my work based on the school that my kids is in. That's how afraid I am”
“Everything is like life is turned upside down just to keep him healthy”
“It's dangerous, that is something that you need to keep your eye on 24–7”
Despite these fears and misperceptions, some parents described high levels of self-efficacy; they were confident in their abilities to manage their child's asthma. In some cases, however, there was a disparity between their perception and their actual abilities. Some parents desired more control over their child's care than their health care provider ostensibly allowed, such as having a prescription for oral steroids at home to initiate treatment earlier in an exacerbation. The only item repeatedly mentioned that would alleviate stress related to managing their child's asthma was having a nebulizer at home.
School Issues
Most parents felt that the services provided by school nurses were excellent, but insufficient. Parents desired full-time school nurses. They were uncomfortable with nonnurse school personnel administering medications and supervising the care of their children with asthma. As a result, some parents came to the school to administer medications or encouraged their child to violate school policy by carrying and administering their own medication. Indeed, a few parents trusted their child's ability to administer medication more than school personnel. Some parents felt that teachers did not recognize the symptoms and signs of asthma or understand potential behavioral side effects of β-agonists and steroids.
Less Common Themes
Educational Issues
Almost all parents felt that having an asthma management plan would improve their child's care. Unfortunately, the majority of parents denied having written plans from their health care providers. Some parents felt comfortable with their knowledge about asthma and asthma management while others reported specific deficits, including how to prevent asthma, warning signs of asthma, differences between asthma and allergies, and the indications for different types of asthma medications. Some parents specifically stated that they felt that the education given by their provider was inadequate or hard to understand.
Health Care Provider/Patient/Family Relationship
Almost all parents stated that trusting their provider was paramount to receiving quality care. Factors that adversely affected the relationship of parents with their child's provider were: 1) health care providers distrust of parents' knowledge and familiarity with their child and child's disease, 2) judgmental attitudes of providers toward people from lower socioeconomic or minority backgrounds, 3) the perception that their children were prematurely discharged from the hospital by doctors, and 4) the delay in diagnosis by the provider. Some parents believed that physicians delayed diagnosis or diagnosed less severe asthma to “save the system money.” Parents also preferred that health care providers take a more holistic approach to managing their child's asthma, including both physical and mental well-being of their children. Parental comments include:
“Especially people in specific socioeconomic backgrounds are treated like they don't have a clue about what is going on. That is a main concern. People are not treated across the board in terms of attitude and knowing what is going on … with their child's body”
“When they say they don't want to diagnose someone with asthma it's not because they care about you—it's about saving the system money”
“They deal with medications and treating symptoms, and it's not a holistic approach to managing care”
Continuity and Availability of Providers
The majority of parents could identify a particular location and provider that they used for primary care. Many parents, however, preferred the ED as a site of care because they perceived it provided the best quality care. Parents also selected the ED because they felt that asthma was a breathing disorder that should be treated as an emergency. This belief was reinforced when their providers advised them to take their child to the ED for an asthma exacerbation.
Financial Barriers
A few parents mentioned that, on occasion, cost had prevented them from being able to purchase medications. A few parents also mentioned that making a change to their home environment, such as purchasing a room air conditioner, an air purifier, or replacing carpet was too expensive.
Parents also reported that insurance status and the type of insurance affected the services their children received. A few parents mentioned they would not be able to afford the medications for their children without insurance or that changing an insurance plan had interrupted the continuity with a particular provider. Health maintenance organization restrictions regarding ED access, and type of equipment (nebulizers and aerochambers) functioned as a barrier for a few parents.
In a few groups there was discussion about Supplemental Security Income (SSI) benefits. Parents who received SSI benefits felt strongly that these benefits offset some of the financial burden of caring for their children. Many of those without SSI benefits had applied for them, but they were denied. Most of these parents felt that all children who have asthma should qualify for this type of benefit and that rules for obtaining SSI benefits were haphazardly enforced. Two parents mentioned that they took their children to the ED for care on multiple occasions because they thought that if their child's asthma appeared more severe they would qualify for SSI benefits.
Environmental Barriers
Many parents were knowledgeable about environmental triggers, but some parents felt that they had little control of their home environment. Some parents rented their homes or lived with individuals who smoke or have pets and were unable to modify these exposures. Transportation was infrequently mentioned as a barrier as was lack of social support. Although very few mentioned social support as a barrier, many parents stated that participating in the focus groups helped them to feel less isolated, and it comforted them to know other parents experienced some of the same challenges as caregivers of children with asthma.
DISCUSSION
In contrast with the widespread belief that access to medical care, health insurance, and continuity of care are the major barriers to quality asthma care for urban, minority children, the barriers most frequently reported by parents were intrinsic to the parents' own health beliefs. This study reinforces the need to expand asthma management beyond a strictly biomedical approach to one that incorporates patient and family health beliefs. The strict biomedical approach to the treatment and prevention of asthma symptoms does not incorporate other critical factors or aspects of parental health care decision-making. Parental attitudes and beliefs as well as their environment modify how parents respond to caring for their child with asthma.
Most biomedical interventions aimed at improving quality asthma care target lack of knowledge. Education regarding asthma and asthma management skills is rightfully assumed to be a prerequisite for certain desired behaviors to occur.26–28 Indeed, many barriers were attributable to parents' lack of knowledge. It is clear, however, that parents' perceptions and health beliefs are often at the core of many barriers to optimal care. If these health beliefs are not addressed, it is unlikely that asthma outcomes will change for urban children and their families.
Other investigators have recognized that traditional measures of access—such as having a usual source of medical care—does not, by itself, adequately measure a child's receipt of adequate asthma management.13 Despite most parents reporting a usual source of care (97%), many parents reported that specific characteristics of the site or provider limited the quality of asthma care.13 Access to care is an important barrier to parents in our study, but not a major barrier. Instead, addressing parental health beliefs—especially those related to pharmaceutical management of asthma and to quality of life issues—is essential to improving health outcomes.
Investigators in the National Cooperative Inner-City Asthma Study examined psychosocial variables that may affect asthma morbidity.24 The conceptual framework they used to describe the relationship of psychosocial factors and morbidity incorporates caretakers' attitudes and beliefs as a major component of asthma management. These beliefs were conceptualized within a biomedical framework and directly related to caretakers' expectations or self-efficacy regarding asthma management behaviors, such as keeping medical appointments and adhering to treatment procedures. Although it is essential to address parents' health expectations about asthma management and assess parents' perceptions of their asthma management skills, this framework does not include other parental health beliefs identified in our study.
Focus group methodology was selected because the purpose of this study was to investigate parental perspectives of barriers to asthma care in urban, minority populations. Focus groups are superior to more quantitative methods because they allow for the open-ended generation of ideas by parents. This type of methodology allowed us to obtain in-depth understanding of the barriers that affect parents' asthma care practices and a better appreciation of the underlying health beliefs that act as barriers to good health outcomes.
It is often difficult to quantify or draw conclusions from information collected in a group setting. The same individual can repeat statements or opinions may change over the course of the focus group session. We attempted to overcome these limitations by categorizing and coding comments. This approach allowed some appreciation of the relative importance of barriers to parents. Comments that were repeated across groups were more likely to reflect the consensus of parents than comments that were only mentioned in 1 or 2 groups. We also devised the system to classify comments into predetermined categories and subcategories to estimate reliability of coders. That is, would another person reviewing the conversational content reach the same conclusions about parents' perspectives of barriers?
The data collected in this study may not be generalizable to other urban, minority populations because participant selection was both nonrandom and nonrepresentative. We recruited parents through schools rather than through offices, clinics or ED settings to include a broader group of children with asthma, not just those children who have access as it is traditionally defined. Our sample may therefore be biased toward more severe asthmatics who were more easily identified by school personnel. In addition, the schools were predominantly comprised of black students, and therefore, these results cannot be generalized to non-black parents and children. It is also plausible that access to care as traditionally defined by health care system access is less of a problem in the city in which this study was conducted, and therefore, other issues such as health beliefs have emerged. As focus groups were not conducted with parents from nonminority backgrounds, it is possible that the barriers mentioned by the parents in our groups are applicable to more affluent groups. Similar studies need to be performed in larger, more diverse populations to determine if the identified barriers and recommendations are applicable to other families of children with asthma.
Given our findings and the limitations noted above, we make the following recommendations:
Health care providers need to address how parents' health beliefs may affect compliance with prescribed regimens for treatment. Parents should be asked directly about their concerns with the use of medications, and about beliefs that may affect adherence. Emphasizing the role that medications play in the prevention of symptoms is critical, because parents often did not equate medication use with preventing exacerbations of asthma.
Health care providers also need reliable information about the benefits and limitations of complementary and adjunctive treatments for asthma such as biofeedback, calming techniques, and massage therapy. Most parents were aware of environmental triggers and understood that avoidance would improve their child's symptoms. Focusing interventions on environmental modifications may be more successful in prevention of asthma symptoms among parents with strong beliefs about medication safety. Unfortunately many parents stated that they were unable to alter or modify their home environment.
Health care providers need to inform parents and children with asthma when they can participate in physical activities and exercise. Limitation of activities in childhood may adversely effect a child's self-esteem and ability to socialize. Moreover, children whose activities are restricted may be establishing a sedentary lifestyle that places them at greater risk for other poor health outcomes. Most children with asthma should be able to participate fully in activities by adjustment of their medication regimen before and during periods of extended physical activity.15
Health care providers need to acknowledge and address the added burden placed on the caretakers of children with asthma. A parent's quality of life is often compromised by their child's asthma. Although most parents accept the challenge of caring for their children with this disease, health care providers need to provide support for parents and express an appreciation for the parent's role in the care of their child. Health care providers also need to teach parents and children the skills needed to manage asthma, including adherence to the National Heart, Lung, and Blood Institute's Guidelines for the Diagnosis and Management of Asthma25 that suggest that parents should have written care plans that they can use both at home and at school.
Providers need to reinforce the importance of informing school personnel (office staff, school nurse, and teachers) of their child's medical condition, regardless of the severity of disease or the frequency of symptoms. Providers and parents should make sure that children have medications available at school. Advocating for changes in school policy to allow children to carry their own medications, especially for older children and adolescents, is an important step to encourage them to progressively manage their own disease. As nonnurse school personnel take on a larger role in the management of asthma in the school setting, health care providers need to make sure that they are trained and equipped for this role. Nationally based educational programs, such as Open Airways,29 can be used to educate students and staff in the school setting.
CONCLUSION
In summary, this study provides important information about parental perspectives of barriers to asthma care for urban, minority children. It also demonstrates that parents' perceptions of barriers to asthma care differ dramatically from those traditionally perceived by health care providers and academic researchers. This disparity in perceived barriers may help to explain why many children from urban, minority backgrounds have less optimal asthma health outcomes. Health care providers, child health researchers, and advocates need to assess and address the barriers parents identify as important to improve health outcomes for urban children with asthma.
ACKNOWLEDGMENTS
The project was funded in part by the Ohio Hospital Association Foundation for Healthy Communities, a foundation dedicated to improving the health of Ohioans by encouraging creative collaboration between hospitals and other community forces.
We would like to thank the principals, school nurses, parents, and students at the 4 participating elementary schools for their support of this project.
Footnotes
- Received September 8, 1999.
- Accepted December 23, 1999.
Reprint requests to (M.E.M.) Division of General and Community Pediatrics, Children's Hospital Medical Center, 3333 Burnet Ave, Cincinnati, OH 45229-3039. E-mail: mona.mansour{at}chmcc.org
This research was presented as a platform presentation at the Ambulatory Pediatrics Association Meeting, May 1–5, 1998.
- ED =
- emergency department •
- SSI =
- Supplemental Security Income
REFERENCES
- Copyright © 2000 American Academy of Pediatrics
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