ORIGINAL ARTICLE

ABSTRACT

Introduction: Adequate treatment for asthma depends on accurate assessment and intervention by the parent and child and timely communication with the provider. These actions by the parent may be affected by their understanding of asthma management and their concerns about medications being prescribed. This research reports parental experiences with their children with asthma, specifically their beliefs, knowledge, and attitudes about asthma management, including medication use. Methods: Data reported are from a study investigating parental attitudes and beliefs affecting antiinflammatory medication use in childhood asthma. These qualitative findings emerged from one-on-one semistructured qualitative interviews with 18 parents of children 2 to 18 years of age who were from diverse racial and socioeconomic backgrounds and who represented the spectrum of illness severity. Results: Eight main themes within the domain of asthma management and medication use were identified: I know my child, trial and error, partnership, need for education, negotiating responsibility, hassles with medication administration, preferences, and the benefits outweigh the risks of side effects. Discussion: These themes emphasize parents need to partner with providers in their childs asthma management, as well as their need for ongoing asthma education. Parents also expressed concern about adverse effects of antiinflammatory medication but acknowledged the importance of controlling asthma symptoms. Based on these findings, systematic practice changes are recommended that provide regular opportunities for parent and child asthma education in a structured asthma wellness or tune-up visit. J Pediatr Health Care. (2003). 17, 118-125.

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Parental Perceptions of Their Childs Asthma: Management and Medication Use

K a t h l e e n Pe t e r s o n - S w e e n e y, M S , C P N P, A n n M c M u l l e n , M S , C P N P, H . L o r r i e Yo o s , P h D, C P N P, & H a r r i e t K i t z m a n , P h D, R N

orbidity and mortality resulting from childhood asthma continue to rise at alarming rates despite an improved understanding of the basic pathophysiology of asthma and the availability of increasingly effective therapies. Perhaps more than any other illness, asthma necessitates an ongoing partnership and communication between health care providers and the patient and family for optimal treatment to take place (Warman, 2000). For this partnership to work, patients/families and health care providers need to have a common understanding of the nature of asthma, treatment goals, the role of medications, and self-management practices. Healthy People 2010 confidently states that most of the problems caused by asthma could be averted if persons with asthma and their health care providers managed the disease according to established guidelines (National Institutes of Health). The National Heart, Lung and Blood Institute (NHLBI) of the National Institutes of Health has established guidelines for the diagnosis and management of asthma (NHLBI, 1997). These guidelines include goals for asthma management, as well as the following four key

Kathleen Peterson-Sweeney is a Pediatric Nurse Practitioner and Associate Professor of Nursing, SUNY College at Brockport, and a Doctoral Student at the University of Rochester School of Nursing, New York. Ann McMullen is a Pediatric Nurse Practitioner in Pediatric Pulmonology at Strong Childrens Hospital and Associate Professor of Clinical Nursing, University of Rochester School of Nursing, New York. H. Lorrie Yoos is a Pediatric Nurse Practitioner, Pediatric Primary Care Practice, Strong Childrens Hospital, and Associate Professor of Nursing, University of Rochester School of Nursing, New York. Harriet Kitzman is Associate Professor of Nursing, University of Rochester School of Nursing, New York. Supported by Grant No. RO3 HS10689 from the Agency for Healthcare Research and Quality. Reprint requests: Kathleen Peterson-Sweeney, MS, CPNP, Department of Nursing, 350 New Campus Dr, Brockport, NY 14420; e-mail: Kathleen_Peterson-Sweeney@urmc.rochester.edu. Copyright 2003 by the National Association of Pediatric Nurse Practitioners. 0891-5245/2003/$30.00 + 0 doi:10.1067/mph.2003.31

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TABLE 1 Professional goals versus reality in asthma
Accepted professional goals Current reality

Peterson-Sweeney et al

No persistent symptoms or sleep disruptions No missed school as a result of asthma Maintenance of normal activity levels Normal or near-normal lung functions No or minimal need for emergency department visits/hospitalizations

Almost 30% of asthma patients reported being awakened with breathing problems at least one a week (Asthma in America, 1998); 41% of participants in one study reported symptoms more than two times a week (Halterman, Yoos, Sidora, Kitzman, & McMullen, 2001) 49% of children with asthma missed school in the prior year because of asthma-related problems (Asthma in America, 1998); total of 10 million missed school days each year, depriving the child of academic achievement as well as social interaction (Lenney, 1997; Von Mutius, 2000) 48% of patients with asthma say asthma limits their ability to participate in sports and recreation (Asthma in America, 1998); 25% say asthma interferes with social activities (Asthma in America, 1998) Only 35% of patients report having lung function tests in the past year; only 28% have peak flow meters (Asthma in America, 1998); 49% of patients in one study had FEV1 values less than 90%; 25% had FEV1 values less than 80% (Yoos, Kitzman, McMullen, Henderson, & Sidora, 2002) 32% of children with asthma went to the emergency department for asthma attacks in the prior year (Asthma in America, 1998); 55% of children had unscheduled emergency visits to a doctors visit (Asthma in America, 1998); children have approximately 3,028,000 doctor visits, 570,000 emergency department visits, and 164,000 hospitalizations per year (Asthma in America, 1998, American Academy of Allergy, Asthma & Immunology, 1999)

components for achieving control of asthma: (a) regular assessment and monitoring of symptoms, (b) appropriate pharmacologic therapy, (c) control of triggers and patient education, and (d) partnership with families (NHLBI, 1997). Nevertheless, despite more than a decade of Expert Panel reports and resounding affirmation of the guidelines by the professional community, we have fallen short of reaching the goals of optimal asthma management (see Table 1). Research suggests why we have fallen short of such goals. Based on data from 638 children from a crosssectional survey of kindergartners in 11 randomly selected elementary schools, Grant et al. (1999) found a lack of asthma control and concluded that a possible reason for suboptimal treatment of asthma is not following the NHLBI guidelines. Diaz et al. (2000) found that antiinflammatory medication for children with persistent or severe asthma in East Harlem was underused, thus affecting asthma control. These authors also suggest that a possible lack of physician adherence to NHLBI guidelines may be affecting this lack of antiinflammatory use. Finkelstein et al. (2000) found substantial understanding of the National Asthma Education and Prevention Program (NAEPP) guidelines in a survey of 671 pediatricians and family physicians, with little reluctance to use inhaled corticosteroids in pediatric patients. How-

ever, these study results clearly demonstrated opportunities for improvement in specific areas such as the use of written treatment plans and scheduling routine follow-up care.

atients/families and

health care providers need to have a common understanding of the nature of asthma, treatment goals, the role of medications, and selfmanagement practices.

We are clearly failing in our efforts to control asthma, and both patients/families and health care providers have been identified as contributing to this failure. Adequate therapy for asthma depends on accurate and timely communication and a partnership between families and health care providers (Fritz, McQuaid, Spirito, & Klein, 1996).

If symptoms are not promptly and accurately reported, guidelines for appropriate asthma management cannot be followed. Unless we understand parents and patients concerns about medications prescribed, we will be unable to affect adherence. In the past decade, qualitative research has provided health care providers with descriptions of the everyday experiences of children with asthma and their families. Kieckhefer and Ratcliffe (2000) used focus groups to obtain information about the families lived experience with asthma and concluded that providers should take into account parental fears and concerns as they develop asthma action plans. Mansour, Lamphear, and DeWitt (2000) used focus groups to obtain parental perspectives of barriers to asthma care in urban children. They identified parental concerns specific to long-term medication use as a barrier to effective asthma management. Rydstrom, Englund, and Sandman (1999) conducted unstructured interviews with 14 children using a phenomenologic-hermeneutic method to illuminate what it is like being a child with asthma. They described perceptions by the child as being both participant in their management of their own care and as an outsider in everyday life. Horner (1997) conducted a grounded theory study to describe the fears and anxieties of mothers caring for their young children during illness episodes prior to a diagnosis of asthma.

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TABLE 2 Sociodemographic
characteristics of sample
Category Frequency %

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BOX 1 Identified themes

The semistructured interview explored attitudes and beliefs within five identified themes: The parents understanding of the nature of asthma How asthma affects the child and family Knowledge about asthma medications Attitudes and beliefs about asthma medications and administration Partnership and communication with the health care provider

BOX 2 Prevalent themes in asthma management and medication administration

I know my child Trial and error Partnership Need for information Negotiating responsibility Hassles and worries Preferences with medication administration Benefits outweigh the risks of side effects

Age Preschool (2-5 y) School age (6-12 y) Adolescent (13-18 y) Socioeconomic status (Hollingshead, 1957: occupation/education) Upper Lower Missing Race Minority (Black, Hispanic) White Sex Male Female Severity Mild intermittent Mild persistent Moderate persistent Severe persistent

7 5 6

39 28 33

7 9 2 8 10 9 9 5 5 6 2

44 56 11 44 56 50 50 28 28 33 11

METHODS Participants/Setting
Purposeful sampling of participants drawn from clinical practice settings was used to ensure inclusion of children with different levels of disease severity as well as sociodemographic diversity. The sample consisted of 18 mothers of children and adolescents. Enrollment continued until saturation of new themes was achieved. The study was approved by the Institutional Review Board. The interviews took place in the participants home following informed consent. Participants received an honorarium of $30. The childs age, illness severity, illness duration, gender, ethnicity, and socioeconomic status were obtained at intake. Illness severity was classified with use of the NHLBI system, yielding four severity categories: mild intermittent, mild persistent, moderate persistent, and severe persistent (NHLBI, 1997). Zip codes were used to classify families living in urban, suburban, small town, and rural geographic locations. Table 2 reports the demographic characteristics of the sample.

terviews generally lasted between 1 and 112 hours; their duration was determined by when the topics were exhausted. The interviewers were all experienced nurses who had been educated about asthma and trained in the principles and methodology for doing semistructured interviews. Eighteen interviews were conducted, taperecorded, and then transcribed.

Approach to Data Analysis

The data were analyzed using a conceptually clustered matrix to allow a thumbnail profile of each informant and to provide an initial test of the relationships between responses to the different questions. These strategies for testing or confirming findings as suggested by Miles and Huberman (1984) were used to minimize bias. Four independent raters read the transcripts line by line and analyzed the content by clustering and identifying themes. The overall domains identified were the diagnosis of asthma, knowledge about the nature of the disease and resulting symptoms, asthma management including medications, parent/provider relationship, treatment expectations, and impact on the family. We report here on themes related to the domain of asthma management, including medication use.

Svavarsdottir, McMubbin, and Kane (2000) reported on the relationships of family and caregiving demands, sense of coherence, and family hardiness with parents well-being in research completed with 76 families of young children with asthma. The 4 most difficult tasks cited by mothers were providing emotional support for the child, managing discipline and behavior problems, developmental support for the child and handling asthma episodes, which included giving prescribed treatments and medicines and deciding if the child needs to see the physician. In the research reported here, we expand the literature on parents experience with children with asthma. Specifically, we investigated parental beliefs, knowledge, and attitudes affecting antiinflammatory medication use in childhood asthma to add further to the insights in the existing literature specific to issues around medication use. We report findings that emerged from one-on-one semistructured qualitative interviews with parents of children with asthma, in which we asked them about their experience of living with a child with asthma and their attitudes toward asthma medications.

Procedures
Study data were obtained through semistructured, qualitative, face-toface interviews guided by a set of openended questions designed to illicit parents understanding of the nature of asthma and the role of antiinflammatory medication in managing asthma, as well as the experience of living with a child with asthma (Box 1). Families also described their interactions with health care providers. The in-depth in-

RESULTS
Eight main themes related to asthma management and medication use emerged from the interviews (Box 2).

I Know My Child
The first theme was that of primary responsibility for asthma medication management. Universally, in the two-parent

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families in this sample, the mother controlled asthma management, including medication administration, health care provider visits, management and communication with school and day care, and other activities outside of the home. The mother clearly stated her need to structure a system of care. In most cases the father was not as involved in the care of asthma for the child but was able to fill in for the mother when needed. In one-parent families headed by the mother, the mother assigned the role of caretaker, as needed, to other family members with whom she felt comfortable. The mother trained this caretaker or chose a family member who was familiar with asthma care. The main part of asthma I do myself, because I think what I know about asthma keeps her out of serious trouble. We go to her pediatrician for her annual visit and I kind of let him know what is going on. It took a long time before she really stayed with my mother or sister. She mainly stayed with my best friend. Her daughter has asthma, so she feels comfortable with taking care of my daughter. her (horseback riding lessons, cheerleading on a hot day). When the girls start displaying symptoms we kind of stepped up to a more aggressive protocol of medications. If I feel after a couple of days that it is not taking effect, I usually fax the pulmonologist a note. Then we do it day by day; we increased meds on this day and if shes not getting any better I fax her the results and she calls me back and shell say, Lets try this.

Peterson-Sweeney et al

ut of our sample,

nearly half of the parents reported minimal or no education when their child was first diagnosed with asthma.

at her, shes having a hard time sucking it all in before she releases it. Her doctor would say, I need to get some x-rays, but her doctor was not on. They thought she just had a bad cold and told me to just keep doing the nebs every 4 hours. We go for x-rays on Monday and she had pneumonia. That was frustrating to me. I was very offended because I know my child, I know what she can tolerate. I know how she acts when shes severe. I would have never gone in over the weekend if she wasnt severe. For an acute visit, I cant always see my doctor, and thats frustrating not to be able to see your own doctor. For the first year of his life, depending on if he couldnt see his own pediatrician, one would start him on this medication, the next person stopped that and put him on another. This went on until we saw the specialist. Parents expressed different views about being comfortable with the medication management plan initiated by health care providers. Six of the 18 stated that they agreed with their primary care physicians plan; 6 stated that they did not. Two families reported that they found new physicians with whom they felt more comfortable. One of the mothers stated, Once we got rid of the doctor who didnt listen to us and thought it was a temper tantrum, things were better. The 14 families receiving care by a pediatric pulmonary specialty office expressed confidence in the treatment plans that resulted from these specialty contacts.

Trial and Error

Another consistent finding across the sample was that once they were comfortable with asthma management, parents assumed the primary role of initiating or changing asthma therapy based on symptoms. Over time, parents believed that they became more confident in this role through trial and error. Parents thought that their health care providers encouraged them to use trial and error, that is, to use their judgment in evaluating symptoms and managing care. Trial and error increased parent confidence in treating their childs symptoms. Its kind of a sliding scale or action plan style that we do. We would go months without using albuterol in our home life, and then wed go on a trip to see her grandparents where there are animals and she would end up in the emergency room. Now we start her medications 3 to 5 days before we visit and things are much better. We have learned to premedicate when its going to be a bad time for

Partnership
A targeted aim of the National Asthma Education Program of the NHLBI is to improve communication and partnership between provider and parent. In many instances, negotiation existed between the physician and parent. However, outside of established relationships with the primary care physician or specialist, one third of the parents expressed distrust in professional management. Parents wanted to be acknowledged for their own assessments, knowledge, and evaluation of previous therapies. He saw another doctor in the office who said our son had an ear infection. My children dont usually get ear infections. He was coughing and we knew he needed prednisone, but the doctor just gave us medicine for an ear infection. We ended up in the emergency room. When she had pneumonia my doctor wasnt on call, and the office was open on the weekend, and I was upset because I know my child. Shes breathing at this rate and if you look

Need for Education

Another major theme identified was the need for education about asthma management and medications. Of the 8 parents who remembered being taught about asthma medications when their child was first put on medication, half could not remember the action of these specific medications. Even the four parents who said they remembered what the medications were designed to do had significant gaps in information. Furthermore, more than half of the 12 parents who had children with longstanding asthma (more than 3 years) expressed a lack of understanding or confusion about how medications worked.

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They reported initial explanations of medications being given, but even these seasoned parents said that they could benefit from review and reinforcement. Out of our sample, nearly half of the parents reported minimal or no education when their child was first diagnosed with asthma. One parent stated that the structure of the primary care office was not conducive to asthma education: Even the structure of the followup appointments isnt such that there is any mechanism for the education to happen. You go to check to make sure everything is clear and the prednisone worked. It was a 15-minute appointment and it sounds good and off you go! Another parent mentioned the inadequacy of teaching in the primary care office: It was the day after Christmas, and he (the doctor) was just seeing emergency patients. That day he prescribed an inhaler, and I knew nothing about an inhaler, I didnt know how to work them. I felt very frustrated in that I thought through the system I should have gotten more information through his doctors office or the pharmacy. Fourteen of the parents reported being seen by a specialist office, with many of them mentioning that they valued the written and verbal education received in the specialists office. Universally, learning occurred over time, with parents identifying multiple resources, such as asthma-based Web sites, the library, an asthma network and newsletter, family members who were nurses or who had asthma, and the pharmacist. One particular mother was adamant in her suggestion to use the pharmacist for education: I just feel that parents should stick with one pharmacy, who knows my child, who knows her medicine. If she is going to have side effects due to this medicine the pharmacist will tell me. Four parents mentioned the nurse practitioner as the person who taught them about medications and clarified information at subsequent visits.

Peterson-Sweeney et al

Negotiating Responsibility
The mother took the primary role in educating children about asthma and negotiating responsibility for asthma medication administration with the child. Mothers of teenagers stated that their children understood the reasons for medications; in fact, they also stated that experiential learning for teenagers helped them with adherence to daily therapy. One mother stated: Since the episode last year she realizes that she does have it (asthma) and how severe it is. She is better about taking her medications now.

parent was in control of the treatment regimen. Developmentally, parents reported that older school-aged children were able to take on more responsibility for their own care. The parents of older school-aged children and adolescents clearly struggled between wanting to encourage independence in their childs management of asthma and their own need to ensure that medications were given. Parents perceived that their school-aged children needed reminders so that they could be spared the negative consequences of not taking their medication. There was a clear power struggle identified in half of the relationships between adolescents and their parents. Shes thirteen, and I say, Do your medicines and I expect her to do it, and she didntso the next thing we know shes in this horrible flare-up. For right now, at 13, the biggest challenge is making sure that he is taking his medicine. Ill say (in the morning) You do what you have to do and Ill get your medicine set up for you. When I come back, the medicine is still sitting there. You know, when I talk about Donnie, it brings back, reminds me of a lot of things because I almost lost him 3 times. And he doesnt understand yet, he doesnt understand. You know, every time I tell him, Donnie take your medication, he says, Mom, I know, and makes me wait. I try to be so patient with Donnie. I come to him and say Donnie, youve got to take your medication. Time for your medication. He says: Mom, I know. But then I wait a couple more minutes and I say Donnie, when are you gonna take it? Thats our problem we have. (Donnie was 16 years old at the time of this interview.) One parent even articulated that she had no concerns about asthma medication now, that her daughter was young and she was controlling the medications: So I think when she becomes a teenager I would definitely be concerned, but since Im controlling it I guess I dont have any concerns.

he parents of older

school-aged children and adolescents clearly struggled between wanting to encourage independence in their childs management of asthma and their own need to ensure that medications were given.

The mother of a very young child, aged 2 years, related that her daughter began to understand that the medication helped her: She would go and get her machine out and every single time she was right. So I think because she has had it her whole life, its like telling me they were hungry. She would go and get her machine and I have a stethoscope and my mom would check. And every time she was right. Negotiation occurred between parents and children as children reached school aged years; prior to that time, the

Hassles With Medication Administration

Many parents described initial struggles with their children who resisted

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taking medication. As children adjusted to the medication routine, cooperation followed. Parents also described ways of having their child cooperate, such as setting up the nebulizer, putting the mask on themselves, sitting and reading books to the child, or gaining cooperation by having them watch a favorite television show or hold their favorite blanket. Other hassles mentioned were as follows: Its a pain to remember to take medication twice a day. Its hard to remember 3 times a day. Its difficult to get up in the middle of the night if he needs his medication. He just goes on strike and says hes not taking his medication. When asked what was the hardest thing about having a child with asthma, 10 of the 13 parents who answered this question stated that remembering or giving or taking medications on a daily basis was the most difficult aspect of asthma care. Clearly, medication administration was initially a major concern, and over time, continued to be a hassle for many families caring for their child with asthma. Although mentioned by only three parents, a method of medication management offered spontaneously was the use of devices, charts, and systems that organize medication administration. The use of such systems was strongly associated with remembering to make sure medications were administered with minimal missed doses. The diary helps me stay organized. I think it helps me because when I go to the doctors and they ask me questions, I can refer back. My husband came up with the notebookwhen he came out of the hospital our son was on so many medications. And we needed to keep track. cause he thinks that Zachary doesnt keep it on there long enough to get the full dose. But the nurse practitioner says that he gets the full dose. Nearly half of the parents preferred oral to the inhaled delivery of medication. Some of the reasons given were I can tell my child gets the whole thing, I know exactly what goes down, and I can see her swallow.

Peterson-Sweeney et al

arents want health care

providers to respect and value their knowledge about their child and how they manage asthma on a day-to-day basis.

One parent preferred inhaled delivery to oral medication because pills gave her child a stomachache. Addressing the issue of steroids, four parents identified the positive improvement in asthma management with inhaled steroids and preferred inhaled to oral steroids. Comments included the following: I like the inhaler, because its more direct to her lungs. It goes more directly to where its needed. Its not going throughout the body. To me liquid medicine is a trial throughout the body until it gets to that area, but the inhaler goes right to the area. Because of the inhaled steroids, we havent needed by mouth steroids in over a year. I wish we had started the inhaled steroids years ago. Inhaled steroids is better than all that albuterol.

Preferences
Parents in this sample were asked about their preferences about medications. In the sample, 4 parents preferred the nebulizer to the metered dose inhaler, stating that, with the nebulizer, they were sure that the child received the entire dose of medication. For example, one parent said, They taught us how to do the inhaler. My husband is concerned be-

The Benefits Outweigh the Risks of Side Effects

The children in this study had experience with bronchodilators and with oral and inhaled antiinflammatories. Parents had many concerns about both classes of medications. One third of the

18 mothers stated that they had concerns about the bronchodilator albuterol, using such words as hyper, tachy, jumpy, and shakes to describe adverse effects experienced. One mother reported that her infant shook so bad he was evaluated for seizures. Our sample participants discussed many concerns about the oral antiinflammatory medication prednisone. Facial bloating was a concern for 2 mothers, and 6 expressed concerns over weight and weight gain. Three mothers mentioned hyperactivity as a concern, and 5 mentioned that they had general concerns about their child taking an oral steroid. Of interest, 2 mothers stated that they equated steroids with body builders and football players. Two mothers stated that although they had concerns about the effects of oral steroids, their childrens quality of lungs and life and health were more important. Minimal concerns were expressed about inhaled steroids. One mother did not like the inhaled steroid when it was first prescribed, but was then able to appreciate the medications benefit: The medicine goes right to the lungs. Of the 18 families, thrush developed in three children. One parent expressed frustration over a power struggle with a teenager to rinse his mouth after inhaled steroid use; another stated that she did not understand why her child had to rinse his mouth after inhaled steroid use. One parent reported that she and her husband felt uncomfortable about their child taking inhaled steroids until they received teaching material from the specialists office. Another mother observed a significant improvement in behavior when her childs antiinflammatory agent was changed from an oral to an inhaled preparation. Two mothers in our sample discussed their concerns about their childrens asthma medications interacting with the Ritalin that had been prescribed for Attention Deficit Hyperactivity Disorder, although of note, neither had discussed this concern with their childs health care provider. Many parents in our sample said they did not like giving medications but saw improvement with medication: On one hand I just feel lets leave him (on medication), he has done so

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good, but on the other hand, certainly if he could be medication free that would be good too. But Im not willing to let him be uncomfortable like he was before. To be medication free is not the most important thing. For his symptoms to be under control is what I want. practice change that included cues for scheduling and for the content of the visit would need to be instituted. Such tune-up visits would allow providers to reinforce understanding about specific aspects of care, for example, the action of medications, or the need to rinse the mouth after using an inhaled steroid, in addition to the evaluation of symptom relief and treatment success. These findings also challenge providers to utilize all available opportunities for patient and family education. At the least when time is limited, handouts that describe the action and appropriate use of medications would be helpful to reinforcing knowledge.

Peterson-Sweeney et al

DISCUSSION AND IMPLICATIONS FOR PRACTICE

These interviews provide a rich source of data about parents experiencing their childs asthma. Parents acknowledged that learning to care for their childs asthma was often experiential, that is, trial and error. However, they perceived that these experiences had given them a sound basis for management. They cried out, Listen to me, I know my child. Parents want health care providers to respect and value their knowledge about their child and how they manage asthma on a day-to-day basis. Health care providers in general, but particularly on-call providers in emergency department and urgent care settings who do not have an existing relationship with the parent and child, would be well advised to listen and acknowledge the parents knowledge and experience with their childs asthma. These narratives suggest that providers who incorporate information that parents have given them will be more successful with parents in creating a mutually formulated treatment plan. Nevertheless, parents in this sample demonstrated significant gaps in knowledge, even those whose children had been diagnosed with asthma for a long period. Parents acknowledged that they needed information from the professional. A number of factors contribute to the need for education. Unlike diabetes or other chronic illnesses where there is a definite point of diagnosis, the diagnosis of asthma often evolves over time. Therefore, the education process regarding asthma may not be systematic and comprehensive; information is often delivered in a piecemeal fashion. Based on our findings of lack of knowledge and confusion about medications, one might suggest that periodic asthma wellness or tune-up visits would add to the familys/childs knowledge and improve outcomes, in addition to enhancing overall health. To be effective across a primary care practice, a systematic

eriodic asthma wellness

or tune-up visits would add to the familys/childs knowledge and improve outcomes, in addition to enhancing overall health.

problem solving and management of asthma and provides the family with security that the provider truly knows and respects them. For most of this sample, parents seemed relatively comfortable with inhaled steroid use and had more concerns with oral steroid use. All families identified hassles in medication administration, with the daily hassle of remembering to give medication a prevalent theme. Appreciation of these concerns can inform interventions that simplify treatment regimens and improve habit-forming behaviors in children. It is less common for children to be taking multiple medications to treat a variety of disorders than it is in adults. However, parents expressed concerns that asthma medications interacted with other medications their children needed. Parents will be reassured if clinicians review a complete list of medications the child takes, including over-the-counter medications, and discusses possible interactions.

STUDY LIMITATIONS
The investigators believed that the home was an excellent environment for completing the interview for parental convenience and comfort; however, conducting interviews in the home poses its own set of issues. One concern during the interviews was the number of interruptions that occurred as a result of children, the telephone, or visitors in the home. These interruptions may have broken trains of thought and completion of viewpoints being expressed, thus limiting the completeness of the data. In this phase of the study, only 18 parents of children with asthma were interviewed; however, they were diverse in socioeconomic status, ethnicity, and severity of childs asthma. It should be noted that families in this study live in a metropolitan community in which 95% of all families have primary care homes. Families in communities in which a large percentage of families do not have a consistent primary care provider may have different concerns. Although these interviews were rich in the multiple themes identified, the size of the sample limits the generalizability of findings to any subpopulation of families who deal with asthma. The sample also was primarily from urban

Primary care providers without time and resources to complete periodic asthma tune-up visits may want to utilize specialist referrals for fine-tuning of asthma management and education on a more regular basis. Specialist offices are programmed with time for patient and family assessment and patient individualized education. Parents valued the relationships with the specialist office because they perceived that these specialists in chronic illness as well as asthma offered education and treatment that fostered healthier children and improved self-management skills in the family. These families perceived continuity of care as important to their satisfaction with care. Parents often voiced the inadequacy of care they received when treated by a provider who did not know the child and the family. Continuity of care enhances the providers ongoing knowledge about the child, family, and parental capabilities in

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and suburban homes and provider offices. Rural families may have different experiences without provider or specialty offices nearby.

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REFERENCES
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SUMMARY
Parents of children with asthma perceive a steep curve adjusting to issues in managing their child with asthma and developing systems of care over time through trial and error. They value knowledge about medications but often have gaps in that knowledge. Some parents seek out information in many venues; others seem to accept as appropriate their limited knowledge about medications. Parents describe both adverse effects and hassles in medication administration but also are able to state that quality of life and breath is more important than not having those adverse effects and hassles. Parents of children with asthma have a working knowledge of the care of their child and give positive feedback about providers who demonstrate a willingness to listen, use the parents knowledge, and help them improve their childs care. Recognizing and respecting the parents knowledge will provide the health care provider with an important ally in helping the asthmatic child reach the targeted National Asthma Expert Panel 2 guidelines.

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