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PHC ORIGINAL ARTICLE

May/June 2003 119 JOURNAL OF PEDIATRICHEALTHCARE

Peterson-Sweeney et al

components for achieving control of asthma: (a) regular assessment andmonitoring of symptoms, (b) appropri-ate pharmacologic therapy, (c) controlof triggers and patient education, and(d) partnership with families (NHLBI,1997). Nevertheless, despite more thana decade of Expert Panel reports and re-sounding affirmation of the guidelines

by the professional community, wehave fallen short of reaching the goals

of optimal asthma management (seeTable 1). Research suggests why wehave fallen short of such goals. Basedon data from 638 children from a cross-sectional survey of kindergartners in 11randomly selected elementary schools,Grant et al. (1999) found a lack of asthma control and concluded that apossible reason for suboptimal treat-ment of asthma is not following theNHLBI guidelines. Diaz et al. (2000)found that antiinflammatory medica-tion for children with persistent or se-vere asthma in East Harlem was under-

used, thus affecting asthma control.These authors also suggest that a possible lack of physician adherence toNHLBI guidelines may be affecting thislack of antiinflammatory use. Finkel-stein et al. (2000) found substantial un-derstanding of the National AsthmaEducation and Prevention Program(NAEPP) guidelines in a survey of 671pediatricians and family physicians,with little reluctance to use inhaled cor-ticosteroids in pediatric patients. How-

ever, these study results clearly demon-strated opportunities for improvementin specific areas such as the use of writ-ten treatment plans and schedulingroutine follow-up care.

We are clearly failing in our efforts tocontrol asthma, and both patients/fam-ilies and health care providers have been identified as contributing to thisfailure. Adequate therapy for asthmadepends on accurate and timely com-munication and a partnership betweenfamilies and health care providers(Fritz, McQuaid, Spirito, & Klein, 1996).

If symptoms are not promptly and ac-curately reported, guidelines for appro-priate asthma management cannot befollowed. Unless we understand par-ents and patients concerns about med-ications prescribed, we will be unableto affect adherence.

In the past decade, qualitative researchhas provided health care providers withdescriptions of the everyday experiencesof children with asthma and their fami-

lies. Kieckhefer and Ratcliffe (2000) usedfocus groups to obtain information aboutthe families lived experience withasthma and concluded that providersshould take into account parental fearsand concerns as they develop asthma ac-tion plans. Mansour, Lamphear, and De-Witt (2000) used focus groups to obtainparental perspectives of barriers toasthma care in urban children. Theyidentified parental concerns specific tolong-term medication use as a barrier toeffective asthma management. Ryd-strom, Englund, and Sandman (1999) con-

ducted unstructured interviews with 14children using a phenomenologic-her-meneutic method to illuminate what it islike being a child with asthma. They de-scribed perceptions by the child as being

both participant in their management of their own care and as an outsider ineveryday life. Horner (1997) conducted agrounded theory study to describe thefears and anxieties of mothers caring fortheir young children during illness epi-sodes prior to a diagnosis of asthma.

TABLE 1 Professional goals versus reality in asthma

Accepted professional goals Current reality

No persistent symptomsor sleep disruptions

No missed school as aresult of asthma

Maintenance of normalactivity levels

Normal or near-normallung functions

No or minimal need foremergency departmentvisits/hospitalizations

Almost 30% of asthma patients reported being awakened with breathing problems at least one aweek (Asthma in America, 1998); 41% of participants in one study reported symptoms more thantwo 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 flowmeters (Asthma in America, 1998); 49% of patients in one study had FEV 1 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 emer-gency department visits, and 164,000 hospitalizations per year (Asthma in America, 1998, Ameri-can Academy of Allergy, Asthma & Immunology, 1999)

P atients/families andhealth care providers need

to have a common

understanding of the

nature of asthma,

treatment goals, the role of

medications, and self-

management practices.

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120 Volume 17 Number 3 JOURNAL OF PEDIATRICHEALTHCARE


Svavarsdottir, McMubbin, and Kane(2000) reported on the relationships of family and caregiving demands, senseof coherence, and family hardiness withparents well-being in research com-

pleted with 76 families of young chil-dren with asthma. The 4 most difficulttasks cited by mothers were providingemotional support for the child, manag-ing discipline and behavior problems,developmental support for the child andhandling asthma episodes, which in-cluded giving prescribed treatmentsand medicines and deciding if the childneeds to see the physician.

In the research reported here, we ex-pand the literature on parents experi-ence with children with asthma. Specif-ically, we investigated parental beliefs,

knowledge, and attitudes affecting an-tiinflammatory medication use inchildhood asthma to add further to theinsights in the existing literature spe-cific to issues around medication use.We report findings that emerged fromone-on-one semistructured qualitativeinterviews with parents of childrenwith asthma, in which we asked themabout their experience of living with achild with asthma and their attitudestoward asthma medications.

METHODSParticipants/SettingPurposeful sampling of participantsdrawn from clinical practice settingswas used to ensure inclusion of childrenwith different levels of disease severityas well as sociodemographic diversity.The sample consisted of 18 mothers of children and adolescents. Enrollmentcontinued until saturation of newthemes was achieved. The study wasapproved by the Institutional ReviewBoard. The interviews took place in theparticipants home following informedconsent. Participants received an hono-

rarium of $30. The childs age, illnessseverity, illness duration, gender, eth-nicity, and socioeconomic status wereobtained at intake. Illness severity wasclassified with use of the NHLBI sys-tem, yielding four severity categories:mild intermittent, mild persistent, mod-erate persistent, and severe persistent(NHLBI, 1997). Zip codes were used toclassify families living in urban, suburban, small town, and rural geographiclocations. Table 2 reports the demo-graphic characteristics of the sample.

ProceduresStudy data were obtained throughsemistructured, qualitative, face-to-face interviews guided by a set of open-ended questions designed to illicit par-ents understanding of the nature of asthma and the role of antiinflamma-tory medication in managing asthma,as well as the experience of living witha child with asthma (Box 1). Familiesalso described their interactions withhealth care providers. The in-depth in-

terviews generally lasted between 1and 1 1 2 hours; their duration was deter-mined by when the topics were ex-hausted. The interviewers were all ex-perienced nurses who had beeneducated about asthma and trained inthe principles and methodology for do-ing semistructured interviews. Eigh-teen interviews were conducted, tape-recorded, and then transcribed.

Approach to Data AnalysisThe data were analyzed using a concep-tually clustered matrix to allow athumbnail profile of each informant andto provide an initial test of the relation-ships between responses to the different

questions. These strategies for testing orconfirming findings as suggested byMiles and Huberman (1984) were usedto minimize bias. Four independentraters read the transcripts line by lineand analyzed the content by clusteringand identifying themes. The overall do-mains identified were the diagnosis of asthma, knowledge about the nature of the disease and resulting symptoms,asthma management including med-ications, parent/provider relationship,treatment expectations, and impact onthe family. We report here on themes re-

lated to the domain of asthma manage-ment, including medication use.

RESULTSEight main themes related to asthmamanagement and medication useemerged from the interviews (Box 2).

I Know My ChildThe first theme was that of primaryresponsibility for asthma medication man-agement. Universally, in the two-parent

TABLE 2 Sociodemographiccharacteristics of sample

Category Frequency %

AgePreschool (2-5 y) 7 39

School age (6-12 y) 5 28Adolescent (13-18 y) 6 33Socioeconomic status

(Hollingshead, 1957:occupation/education)

Upper 7 44Lower 9 56Missing 2 11

RaceMinority (Black, 8 44

Hispanic)White 10 56

SexMale 9 50

Female 9 50SeverityMild intermittent 5 28Mild persistent 5 28Moderate persistent 6 33Severe persistent 2 11

BOX 1 Identified themes

The semistructured interview ex-plored attitudes and beliefs withinfive identified themes: The parents understanding of the

nature of asthma How asthma affects the child andfamily

Knowledge about asthma med-ications

Attitudes and beliefs aboutasthma medications and adminis-tration

Partnership and communicationwith the health care provider

BOX 2 Prevalent themes inasthma management andmedication administration

I know my child Trial and error

Partnership Need for information Negotiating responsibility Hassles and worries Preferences with medication ad-

ministration Benefits outweigh the risks of side

effects

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families in this sample, the mother con-trolled asthma management, includingmedication administration, health careprovider visits, management and com-munication with school and day care,and other activities outside of the home.The mother clearly stated her need tostructure a system of care. In most casesthe father was not as involved in thecare of asthma for the child but was ableto fill in for the mother when needed. Inone-parent families headed by themother, the mother assigned the role of caretaker, as needed, to other familymembers with whom she felt comfort-able. The mother trained this caretakeror chose a family member who was fa-miliar with asthma care.

The main part of asthma I do my-self, because I think what I knowabout asthma keeps her out of seri-ous trouble. We go to her pediatricianfor her annual visit and I kind of lethim know what is going on.

It took a long time before she reallystayed with my mother or sister. Shemainly stayed with my best friend.Her daughter has asthma, so shefeels comfortable with taking care of my daughter.

Trial and ErrorAnother consistent finding across thesample was that once they were com-

fortable 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 confi-dent in this role through trial and er-ror. Parents thought that their healthcare providers encouraged them to usetrial and error, that is, to use their judg-ment in evaluating symptoms andmanaging care. Trial and error in-creased parent confidence in treatingtheir childs symptoms.

Its kind of a sliding scale or ac-tion plan style that we do. We wouldgo months without using albuterol inour home life, and then wed go on atrip to see her grandparents wherethere are animals and she would endup in the emergency room. Now westart her medications 3 to 5 days be-fore we visit and things are much bet-ter.

We have learned to premedicatewhen its going to be a bad time for

her (horseback riding lessons, cheer-leading on a hot day).

When the girls start displayingsymptoms we kind of stepped up toa more aggressive protocol of med-ications. If I feel after a couple of daysthat it is not taking effect, I usuallyfax the pulmonologist a note. Thenwe do it day by day; we increasedmeds on this day and if shes not get-ting any better I fax her the resultsand she calls me back and shell say,Lets try this.

PartnershipA targeted aim of the National AsthmaEducation Program of the NHLBI is to

improve communication and partner-ship between provider and parent. Inmany instances, negotiation existed be-tween the physician and parent. How-ever, outside of established relation-ships with the primary care physicianor specialist, one third of the parents ex-pressed distrust in professional man-agement. Parents wanted to be ac-knowledged for their own assessments,knowledge, and evaluation of previoustherapies.

He saw another doctor in the of-

fice who said our son had an ear in-fection. My children dont usuallyget ear infections. He was coughingand we knew he needed prednisone,

but the doctor just gave us medicinefor an ear infection. We ended up inthe emergency room.

When she had pneumonia mydoctor wasnt on call, and the officewas open on the weekend, and I wasupset because I know my child. Shes

breathing at this rate and if you look

at her, shes having a hard time suck-ing it all in before she releases it. Herdoctor would say, I need to get somex-rays, but her doctor was not on.They thought she just had a bad coldand told me to just keep doing thenebs every 4 hours. We go for x-rayson Monday and she had pneumonia.That was frustrating to me. I wasvery offended because I know mychild, I know what she can tolerate.I know how she acts when shes se-vere. I would have never gone inover the weekend if she wasnt se-vere.

For an acute visit, I cant alwayssee my doctor, and thats frustratingnot to be able to see your own doctor.

For the first year of his life, de-pending on if he couldnt see his ownpediatrician, one would start him onthis medication, the next personstopped that and put him on another.This went on until we saw the spe-cialist.

Parents expressed different viewsabout being comfortable with the med-ication management plan initiated byhealth care providers. Six of the 18stated that they agreed with their pri-mary care physicians plan; 6 statedthat they did not. Two families reportedthat they found new physicians withwhom they felt more comfortable. One

of the mothers stated, Once we got ridof the doctor who didnt listen to us andthought it was a temper tantrum, thingswere better. The 14 families receivingcare by a pediatric pulmonary specialtyoffice expressed confidence in the treat-ment plans that resulted from thesespecialty contacts.

Need for EducationAnother major theme identified wasthe need for education about asthmamanagement and medications. Of the 8parents who remembered being taught

about asthma medications when theirchild was first put on medication, half could not remember the action of thesespecific medications. Even the four par-ents who said they remembered whatthe medications were designed to dohad significant gaps in information.Furthermore, more than half of the 12parents who had children with long-standing asthma (more than 3 years) ex-pressed a lack of understanding or con-fusion about how medications worked.

O ut of our sample,nearly half of the parents

reported minimal or noeducation when their child

was first diagnosed

with asthma.

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They reported initial explanations of medications being given, but even theseseasoned parents said that they could

benefit from review and reinforcement.Out of our sample, nearly half of the par-ents reported minimal or no educationwhen their child was first diagnosedwith asthma. One parent stated that thestructure of the primary care office wasnot conducive to asthma education:

Even the structure of the follow-up appointments isnt such that thereis any mechanism for the educationto happen. You go to check to makesure everything is clear and the pred-nisone worked. It was a 15-minuteappointment and it sounds good andoff you go!

Another parent mentioned the inad-equacy of teaching in the primary careoffice:

It was the day after Christmas,and he (the doctor) was just seeingemergency patients. That day he pre-scribed an inhaler, and I knew noth-ing about an inhaler, I didnt knowhow to work them. I felt very frus-trated in that I thought through thesystem I should have gotten more in-formation through his doctors officeor the pharmacy.

Fourteen of the parents reported be-ing seen by a specialist office, withmany of them mentioning that they val-ued the written and verbal educationreceived in the specialists office. Uni-versally, learning occurred over time,with parents identifying multiple re-sources, such as asthma-based Websites, the library, an asthma networkand newsletter, family members whowere nurses or who had asthma, andthe pharmacist. One particular motherwas adamant in her suggestion to usethe pharmacist for education:

I just feel that parents should stickwith one pharmacy, who knows mychild, who knows her medicine. If she is going to have side effects dueto this medicine the pharmacist willtell me.

Four parents mentioned the nursepractitioner as the person who taughtthem about medications and clarifiedinformation at subsequent visits.

Negotiating ResponsibilityThe mother took the primary role in ed-ucating children about asthma and ne-gotiating responsibility for asthma med-ication administration with the child.Mothers of teenagers stated that theirchildren understood the reasons formedications; in fact, they also statedthat experiential learning for teenagershelped them with adherence to dailytherapy. One mother stated:

Since the episode last year she re-alizes that she does have it (asthma)and how severe it is. She is betterabout taking her medications now.

The mother of a very young child,aged 2 years, related that her daughter began to understand that the medica-tion helped her:

She would go and get her ma-chine out and every single time shewas right. So I think because she hashad it her whole life, its like tellingme they were hungry. She would goand get her machine and I have astethoscope and my mom wouldcheck. And every time she was right.

Negotiation occurred between par-ents and children as children reachedschool aged years; prior to that time, the

parent was in control of the treatmentregimen. Developmentally, parents re-ported that older school-aged childrenwere able to take on more responsibilityfor their own care. The parents of olderschool-aged children and adolescentsclearly struggled between wanting to en-courage independence in their childsmanagement of asthma and their ownneed to ensure that medications weregiven. Parents perceived that theirschool-aged children needed remindersso that they could be spared the negativeconsequences of not taking their med-ication. There was a clear power struggleidentified in half of the relationships be-tween adolescents and their parents.

Shes thirteen, and I say, Do yourmedicines and I expect her to doit, and she didntso the next thing weknow shes in this horrible flare-up.

For right now, at 13, the biggestchallenge is making sure that he istaking his medicine. Ill say (in themorning) You do what you have todo and Ill get your medicine set upfor you. When I come back, themedicine is still sitting there.

You know, when I talk about Don-nie, it brings back, reminds me of a lotof things because I almost lost him 3times. And he doesnt understandyet, he doesnt understand. Youknow, 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. Icome to him and say Donnie, youvegot to take your medication. Time foryour medication. He says: Mom, Iknow. But then I wait a couple moreminutes and I say Donnie, when areyou gonna take it? Thats our prob-lem we have. (Donnie was 16 yearsold at the time of this interview.)

One parent even articulated that shehad no concerns about asthma medica-

tion now, that her daughter was youngand she was controlling the medications:

So I think when she becomes ateenager I would definitely be con-cerned, but since Im controlling it Iguess I dont have any concerns.

Hassles With MedicationAdministrationMany parents described initial strug-gles with their children who resisted

T he parents of olderschool-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.

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taking medication. As children ad- justed to the medication routine, co-operation followed. Parents also de-scribed ways of having their childcooperate, such as setting up the nebu-lizer, putting the mask on themselves,sitting and reading books to the child,or gaining cooperation by having themwatch a favorite television show orhold their favorite blanket. Other has-sles mentioned were as follows:Its a pain to remember to take med-

ication 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 thisquestion stated that remembering orgiving or taking medications on a daily

basis was the most difficult aspect of asthma care. Clearly, medication ad-ministration was initially a major con-cern, and over time, continued to be ahassle for many families caring for theirchild with asthma.

Although mentioned by only threeparents, a method of medication man-agement offered spontaneously wasthe use of devices, charts, and systemsthat organize medication administra-tion. The use of such systems was

strongly associated with rememberingto make sure medications were admin-istered with minimal missed doses.

The diary helps me stay orga-nized. I think it helps me becausewhen I go to the doctors and they askme questions, I can refer back.

My husband came up with thenotebookwhen he came out of thehospital our son was on so manymedications. And we needed to keeptrack.

PreferencesParents in this sample were askedabout their preferences about medica-tions. In the sample, 4 parents preferredthe nebulizer to the metered dose in-haler, stating that, with the nebulizer,they were sure that the child receivedthe entire dose of medication. For ex-ample, one parent said,

They taught us how to do the in-haler. My husband is concerned be-

cause he thinks that Zachary doesntkeep it on there long enough to getthe full dose. But the nurse practi-tioner says that he gets the full dose.Nearly half of the parents preferred

oral to the inhaled delivery of medica-tion. Some of the reasons given were Ican tell my child gets the whole thing,I know exactly what goes down, andI can see her swallow.

One parent preferred inhaled deliv-ery to oral medication because pillsgave her child a stomachache. Address-ing the issue of steroids, four parentsidentified the positive improvement inasthma management with inhaled

steroids and preferred inhaled to oralsteroids. Comments included the fol-lowing:

I like the inhaler, because itsmore direct to her lungs. It goes moredirectly to where its needed. Its notgoing throughout the body. To meliquid medicine is a trial throughoutthe body until it gets to that area, butthe inhaler goes right to the area.

Because of the inhaled steroids,we havent needed by mouth steroidsin over a year.

I wish we had started the inhaledsteroids years ago.Inhaled steroids is better than all

that albuterol.

The Benefits Outweigh the Risksof Side EffectsThe children in this study had experi-ence with bronchodilators and withoral and inhaled antiinflammatories.Parents had many concerns about bothclasses of medications. One third of the

18 mothers stated that they had con-cerns about the bronchodilator al-

buterol, using such words as hyper,tachy, jumpy, and shakes to de-scribe adverse effects experienced. Onemother reported that her infant shookso bad he was evaluated for seizures.Our sample participants discussedmany concerns about the oral antiin-flammatory medication prednisone.Facial bloating was a concern for 2mothers, and 6 expressed concerns overweight and weight gain. Three mothersmentioned hyperactivity as a concern,and 5 mentioned that they had generalconcerns about their child taking anoral steroid. Of interest, 2 mothersstated that they equated steroids withbody builders and football players.Two mothers stated that although theyhad concerns about the effects of oralsteroids, their childrens quality of lungs and life and health were moreimportant.

Minimal concerns were expressedabout inhaled steroids. One mother didnot like the inhaled steroid when it wasfirst prescribed, but was then able to ap-preciate the medications benefit: Themedicine goes right to the lungs. Of the 18 families, thrush developed inthree children. One parent expressedfrustration over a power struggle witha teenager to rinse his mouth after in-haled steroid use; another stated that

she did not understand why her childhad to rinse his mouth after inhaledsteroid use.

One parent reported that she and herhusband felt uncomfortable about theirchild taking inhaled steroids until theyreceived teaching material from thespecialists office. Another mother ob-served a significant improvement in be-havior when her childs antiinflamma-tory agent was changed from an oral toan inhaled preparation. Two mothers inour sample discussed their concernsabout their childrens asthma medica-

tions interacting with the Ritalin thathad been prescribed for Attention Def-icit Hyperactivity Disorder, although of note, neither had discussed this con-cern with their childs health careprovider. Many parents in our samplesaid they did not like giving medica-tions but saw improvement with med-ication:

On one hand I just feel lets leavehim (on medication), he has done so

P arents want health careproviders to respect and

value their knowledge

about their child and how

they manage asthma on a

day-to-day basis.

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good, but on the other hand, cer-tainly if he could be medication freethat would be good too. But Im notwilling to let him be uncomfortablelike he was before. To be medicationfree is not the most important thing.For his symptoms to be under controlis what I want.

DISCUSSION ANDIMPLICATIONS FOR PRACTICEThese interviews provide a rich sourceof data about parents experiencing theirchilds asthma. Parents acknowledgedthat learning to care for their childsasthma was often experiential, that is,trial and error. However, they per-ceived that these experiences had giventhem a sound basis for management.They cried out, Listen to me, I knowmy child. Parents want health care pro-viders to respect and value their knowl-edge about their child and how theymanage asthma on a day-to-day basis.Health care providers in general, butparticularly on-call providers in emer-gency department and urgent care set-tings who do not have an existing rela-tionship with the parent and child,would be well advised to listen and ac-knowledge the parents knowledge andexperience with their childs asthma.These narratives suggest that providerswho incorporate information that par-ents have given them will be more suc-

cessful with parents in creating a mutu-ally formulated treatment plan.Nevertheless, parents in this sample

demonstrated significant gaps inknowledge, even those whose childrenhad been diagnosed with asthma for along period. Parents acknowledgedthat they needed information from theprofessional. A number of factors con-tribute to the need for education. Un-like diabetes or other chronic illnesseswhere there is a definite point of diag-nosis, the diagnosis of asthma oftenevolves over time. Therefore, the edu-

cation process regarding asthma maynot be systematic and comprehensive;information is often delivered in apiecemeal fashion. Based on our find-ings of lack of knowledge and confu-sion about medications, one might sug-gest that periodic asthma wellness ortune-up visits would add to the fam-ilys/childs knowledge and improveoutcomes, in addition to enhancingoverall health. To be effective across aprimary care practice, a systematic

practice change that included cues forscheduling and for the content of thevisit would need to be instituted. Suchtune-up visits would allow providersto reinforce understanding about spe-cific aspects of care, for example, the ac-tion of medications, or the need to rinsethe mouth after using an inhaledsteroid, in addition to the evaluation of symptom relief and treatment success.These findings also challenge providersto utilize all available opportunities forpatient and family education. At theleast when time is limited, handoutsthat describe the action and appropri-ate use of medications would be helpfulto reinforcing knowledge.

Primary care providers without timeand resources to complete periodicasthma tune-up visits may want toutilize specialist referrals for fine-tun-ing of asthma management and educa-tion on a more regular basis. Specialistoffices are programmed with time forpatient and family assessment and pa-tient individualized education. Parentsvalued the relationships with the spe-cialist office because they perceivedthat these specialists in chronic illnessas well as asthma offered education and

treatment that fostered healthier chil-dren and improved self-managementskills in the family.

These families perceived continuityof care as important to their satisfactionwith care. Parents often voiced the in-adequacy of care they received whentreated by a provider who did notknow the child and the family. Conti-nuity of care enhances the providersongoing knowledge about the child,family, and parental capabilities in

problem solving and management of asthma and provides the family withsecurity that the provider truly knowsand respects them.

For most of this sample, parentsseemed relatively comfortable with in-haled steroid use and had more con-cerns with oral steroid use. All familiesidentified hassles in medication admin-istration, with the daily hassle of re-membering to give medication a preva-lent theme. Appreciation of theseconcerns can inform interventions thatsimplify treatment regimens and im-prove habit-forming behaviors in chil-dren.

It is less common for children to betaking multiple medications to treat avariety of disorders than it is in adults.However, parents expressed concernsthat asthma medications interactedwith other medications their childrenneeded. Parents will be reassured if clinicians review a complete list of medications the child takes, includingover-the-counter medications, and dis-cusses possible interactions.

STUDY LIMITATIONSThe investigators believed that thehome was an excellent environment forcompleting the interview for parentalconvenience and comfort; however,conducting interviews in the homeposes its own set of issues. One concern

during the interviews was the numberof interruptions that occurred as a re-sult of children, the telephone, or visi-tors in the home. These interruptionsmay have broken trains of thought andcompletion of viewpoints being ex-pressed, thus limiting the completenessof the data.

In this phase of the study, only 18parents of children with asthma wereinterviewed; however, they were di-verse in socioeconomic status, ethnicity,and severity of childs asthma. It should

be noted that families in this study live

in a metropolitan community in which95% of all families have primary carehomes. Families in communities inwhich a large percentage of families donot have a consistent primary careprovider may have different concerns.Although these interviews were rich inthe multiple themes identified, the sizeof the sample limits the generalizabilityof findings to any subpopulation of families who deal with asthma. Thesample also was primarily from urban

P eriodic asthma wellness

or tune-up visits would

add to the familys/childs

knowledge and improve

outcomes, in addition to

enhancing overall health.

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and suburban homes and provider of-fices. Rural families may have differentexperiences without provider or spe-cialty offices nearby.

SUMMARYParents of children with asthma per-ceive a steep curve adjusting to issuesin managing their child with asthmaand developing systems of care overtime through trial and error. Theyvalue knowledge about medications

but often have gaps in that knowledge.Some parents seek out information inmany venues; others seem to accept asappropriate their limited knowledgeabout medications. Parents describe

both adverse effects and hassles inmedication administration but also areable to state that quality of life and

breath is more important than not hav-ing those adverse effects and hassles.Parents of children with asthma have aworking knowledge of the care of theirchild and give positive feedback aboutproviders who demonstrate a willing-ness to listen, use the parents knowl-edge, and help them improve theirchilds care. Recognizing and respect-ing the parents knowledge will pro-vide the health care provider with animportant ally in helping the asthmaticchild reach the targeted NationalAsthma Expert Panel 2 guidelines.

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munology. (1999). Pediatric practice: Promotingbest practice. Milwaukee, WI: American Acad-emy of Allergy, Asthma, and Immunology.

Asthma in America Survey Slide Kit. (1998). Re-trieved from http://www.asrgmainamerica.com/intro.htm.

Diaz, T., Sturm, T., Matte T., Bindra, M., Lawler, K.,Findley, S., et al. (2000). Medication use amongchildren with asthma in East Harlem. Pedi-atrics, 105, 1188-1193.

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