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PEDIATRICS Vol. 106 No. 3 September 2000, pp. 512-519
From the Children's Hospital Medical Center and the Department of Pediatrics, University of Cincinnati, Cincinnati, Ohio.
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ABSTRACT |
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Top
Abstract
Methods
Results
Discussion
Conclusion
References
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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. Key words: access to care, focus groups, children, minorities, underserved populations, asthma, barriers.
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%6,8
whereas 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.
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's
Guidelines 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).
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).
TABLE 1
METHODS
Top
Abstract
Methods
Results
Discussion
Conclusion
References
RESULTS
Top
Abstract
Methods
Results
Discussion
Conclusion
References
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.
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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: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:
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: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
-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:
it's about saving the system money"
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.
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DISCUSSION |
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Top
Abstract
Methods
Results
Discussion
Conclusion
References
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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
accesssuch as having a usual source of medical caredoes 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 beliefsespecially those related to pharmaceutical
management of asthma and to quality of life issuesis 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:
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CONCLUSION |
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Top
Abstract
Methods
Results
Discussion
Conclusion
References
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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.
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ACKNOWLEDGMENTS |
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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.
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FOOTNOTES |
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This research was presented as a platform presentation at the Ambulatory Pediatrics Association Meeting, May 1-5, 1998.
Received for publication Sep 8, 1999; accepted Dec 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
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ABBREVIATIONS |
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ED, emergency department; SSI, Supplemental Security Income.
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REFERENCES |
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Results
Discussion
Conclusion
References
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United States, 1960-1995.
MMWR Morb Mortal Wkly Rep.
1998;
47:1-27 [Medline]This article has been cited by other articles:
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