CINCINNATI - While asthma affects children of all backgrounds, it is especially prevalent among urban, minority and low-income children, affecting 10% to 20% of this population, compared with 6% of U.S. children as a whole. Recent studies have also noted an increase in morbidity and mortality among urban children with asthma.
Several factors may contribute to these trends. However, these factors have been poorly understood.
Researchers here conducted a study to identify what barriers urban, minority parents feel affect their ability to control or prevent their child's asthma symptoms. Results were re cently published in Pediatrics.
Children were identified through school health records from four inner city public schools. Forty parents representing 38 of 62 eligible households (47 children) participated in one of seven focus groups. Sixty-six percent of the children were boys, and 55% had moderate to severe asthma. All were black. Sixty-two percent used a community or hospital-based clinic for primary care services. Medicaid was the primary insurer for 79% of children.
Researchers received 1,030 comments and coded 618 as barriers. Forty-three percent of barriers were considered patient or family barriers, 28% as environmental barriers, 18% as health care provider barriers and 11% as health care system barriers.
Many parents reported modifying the asthma management plan prescribed by their provider based on health beliefs about the use, safety and long-term complications of medication use. While understanding the concept of preventing asthma symptoms, many equate prevention with nonmedicinal alternatives such as calming techniques, breathing exercises, visualization or bio feedback techniques and dietary adjustments.
"Parents modified treatment plans, particularly around use of medications, since they did not equate asthma prevention with medication use," said Mona E. Mansour, MD, of the division of general and community pediatrics at Children's Hospital Medical Center here. "Many described not using preventative medications on a regular basis."
Parents were concerned about medication use because they felt their children would become addicted or dependent on the medication, become immune or intolerant of it or experience adverse effects, according to Mansour.
Parents were also confused about restricting physical activity. Many placed unnecessary restrictions on their children's physical activity. Parents did not understand the difference between limiting activities during an asthma exacerbation and overall restrictions. Some said their provider had not counseled them concerning physical activity.
Conversely, other parents did not restrict activities because of concerns about the psychological impact of restricting activities. They were not certain if this contributed to increased symptoms.
Parental quality of life was another concern. Many parents said 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."
Still, others were confident in their ability to manage their child's asthma, although there were disparities in their perceptions and their actual abilities at times. Some parents wanted more control in caring for their child than their health care provider allowed, such as having a prescription for oral steroids at home to start treatment earlier during an exacerbation.
Most parents expressed confidence in the abilities of school nurses and wanted them to be in school full-time. Parents also said they were uncomfortable with school policies that gave responsibilities for administering medication to non-medical school personnel. As a result, some parents went to the school to administer medications or encouraged their children to violate school policy and carry and administer their own medications. Some parents felt teachers could not recognize asthma symptoms or understand potential behavioral adverse events of b-agonists or steroids.
"Health care providers need to partner with schools and educators to increase knowledge and skills around the management of asthma in the school setting," Mansour said.
Although most parents said having an asthma management plan would improve their child's care, most also said they had not received one. Those who had them said that information from their provider was either hard to understand or inadequate.
Researchers identified several factors that adversely affected the relationship of parents with their health care provider. These were a provider's:
Parents also thought their children were prematurely discharged from the hospital by doctors.
Many parents said they preferred taking their children to the emergency department, because they felt it provided better quality care. They also felt asthma was a breathing disorder that should be treated as an emergency.
"Parents in the group specifically mentioned if they didn't get a call back from their primary care provider rapidly they would go to the emergency room," Mansour said.
Many parents did not have the money to buy medications or make changes to the home environment such as purchasing a room air conditioner, an air purifier or replacing carpet.
Few parents cited lack of social support as a barrier, but many did say that participating in focus groups helped them feel less isolated.
The most frequently reported barriers were things intrinsic to parents' own beliefs. If children are to get the care they need, asthma management needs to expand beyond a biomedical approach to incorporate family beliefs.
Health care providers "need to change the traditional manner of their encounters," Mansour said. "Physicians often focus on making the diagnosis and providing 'treatment' with little investigation of what families think about the prescribed treatment. Communication tends to be uni-directional, provider to patient, rather than bi-directional. Providers need to assess health beliefs that affect adherence and ultimate health outcomes of children with asthma. Specifically, they need to address the role of medications in the prevention of asthma symptoms, the child's ability to participate in physical activities and quality of life issues for both parents and children."
It is important to teach parents and children asthma management skills. This includes written care plans parents can use at home and at school.
Providers should reinforce the importance of informing school personnel of a child's medical condition, regardless of the severity of the disease or the frequency of symptoms. Medications should be available at school. Advocating for changes in school policy so that children can carry their own medications is an important step in helping children manage their own disease. It is also important to ensure that non-medical school personnel are trained and equipped to manage asthma in the school setting.
For more information:
- Mansour ME, Lanphear BP, DeWitt TG. Barriers to asthma care in urban children: parent perspectives. Pediatrics 2000;106(3):512-519.
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