Tales of pediatric asthma management: family-based strategies related to medical adherence and health care utilization

TALES OF PEDIATRIC ASTHMA MANAGEMENT: FAMILY-BASED

STRATEGIES RELATED TO MEDICAL ADHERENCE AND HEALTH

CARE UTILIZATION

BARBARA H. FIESE, PHD, AND FREDERICK S. WAMBOLDT, MD

Objectives To examine how family management styles, garnered from parent interviews about the effect of asthma on

family life, are related to medical adherence and health care utilization.

Study design Eighty parents with a child with asthma were interviewed. Computerized monitoring of medication use was

collected every 2 months for 1 year. Parents and children completed measures of medical adherence and health care utilization

at the time of the interview and at 1-year follow-up. Three categories of disease management were identified: reactive,

coordinated care, and family partnerships. Group comparisons were made by using analysis of variance with medical adherence

and health care utilization as dependent variables.

Results Management strategies revealed in the interview were distinguishable by adherence rates at the time of interview

and 1 year after. Interview categories were also predictive of emergency department use at 1-year follow-up. The reactive group

received a diagnosis of asthma 1 year after noting symptoms, in contrast with the other groups, who received a diagnosis within 6

months.

Conclusions The use of semistructured interviews may reveal important information about how families manage asthma.

Further work may help identify areas amenable to intervention and provide a better understanding of why some families delay

treatment. (J Pediatr 2003;143:457-62)

Poor asthma management has serious consequences, including repeatedhospitalizations, elevated rates of school absence, and death.1 Pediatric asthmamanagement is a family affair. Ensuring that medications are taken on time,

prescriptions are filled, and environmental controls are implemented is primarily theresponsibility of adult family members, not the pediatric patient. Whereas family memberscan be seen as a source of support,2 family dysfunction in terms of treatment delay, highlevels of criticism, and family conflict is reportedly related to nonadherence to medicalregimens.3,4 To date, the link between family factors and asthma management has beenindirect. Global aspects of family functioning, such as conflict and stress, are proposed toaffect asthma management indirectly by an overall compromise in family adaptation. In thisreport, we examine more specifically how families cope with asthma and links to health careutilization and medical adherence.

Interviews provide a reliable venue to ascertain coping strategies related to diseasemanagement.5-8 Brief interviews are accessible to pediatricians and can be applied duringthe course of routine care. We propose that an interview-based assessment of familymanagement strategies reflects, in part, how the family copes with the illness that will, inturn, be related to medical adherence and health care utilization. Relying on what peoplesay about personal experiences can aid in building a more complete theory that can then betested with more quantitative assessments.9 In this regard, a qualitative analysis ofinterview data can be incorporated into a program of empirical bootstrapping aimed atrefining theory and methods.

In this study, we aim to examine how family management styles, as depicted in thestories that parents tell about their experience of having a child with asthma, are related todisease outcomes and health care utilization. Furthermore, we aim to examine how thesestories may provide prospective evidence that stated coping strategies affect disease

From the Department of Psychology,Syracuse University, Syracuse, NewYork, and Department of Medicine,National Jewish Medical ResearchCenter, and Department of Psychia-try, University of Colorado HealthSciences Center, Denver, Colorado.

Supported in part by grants from theNational Institutes of Health (R01MH51771-01) and the W. T. GrantFoundation to B. H. F. and from theNational Institutes of Health (R01-HL53391 andM01-RR0051) to F. S.W.Submitted for publication Feb 5, 2002;revision received June 11, 2003; ac-cepted July 23, 2003.Reprint requests: Barbara H. Fiese,PhD, 430 Huntington Hall, Depart-ment of Psychology, Syracuse Univer-sity, Syracuse, NY 13244. E-mail:[email protected]ª 2003Mosby, Inc. All rightsreserved.0022-3476/2003/$30.00 + 0

10.1067/S0022-3476(03)00448-7

See related article, p 430.

457

management behaviors over time. We define the term story asthe verbal account of personal past experiences that areimportant to the family and typically involve the creation andmaintenance of relationships, depict rules of interaction, andmay reflect beliefs about family and other institutions.10 Wepropose that families will express one of three types of manage-ment strategies: reactive, whereby management is seen ashaphazard, with the expectations that there will be little use topreventive efforts and that management occurs once symptomsdevelop or become extreme; coordinated care, whereby thedisease is considered manageable and expert advice will resultin better management practices, typically the responsibility ofone person; and family partnerships, whereby the disease ismanageable, multiple members of the family are consideredreliable resources, and the family as a group tackles the illness.

Based on these a priori categories, we generated the fol-lowing hypotheses. (1) Families who express reactive strategieswill report the lowest rate of medical adherence concurrentwith the interview, followed by families who express co-ordinated care and family partnership strategies. (2) Familieswho express reactive strategies will utilize emergency carethe most, followed by the coordinated care and family partner-ship groups, respectively. (3) Families who express reactivestrategies will be less likely to engage in planning familyactivities and will express more worry about their child’scondition. (4) Prospectively, families who express reactivestrategies will have more emergency department admissions1 year after the interview.

METHOD

Participants

Eighty families with a child with asthma were drawnfrom a larger longitudinal study on family functioning andasthma,11 with approval from the Institutional Review Board.The families were selected from the larger pool, excludingthose cases in which the child was >15 years. The familiesranged from lower to upper class, with a Hollingshead12 meanscore of 42.04 (SD = 13.3). In terms of ethnic diversity, 65%were white, 17% black, 15% Hispanic, and 2% Asian. Morethan half (60%) of the parents were married to the biologicalparent of the child, 6% single and never married, 13%remarried, 19% separated or divorced, and 1%widows. Thirty-five of the children were girls and 45 boys, with a mean ageof 9.75 years (range, 7-14 years). The children had beendiagnosed with asthma for 6.6 years (SD = 2.85). Parentreport of asthma severity13 indicated 21% severe, 28%moderate, and 51% mild persistent. Sixty-six of the familiescompleted the laboratory visit at the 1-year follow-up and didnot differ from the nonattenders regarding the interviewcodes, child age, parent marital status, race, socioeconomicstatus, or asthma functional severity.

Procedure

Families were recruited through a health maintenanceorganization and area public schools. Children were excluded

458 Fiese and Wamboldt

if they had been hospitalized in the past 6 months or werereceiving steroid treatments. All of the children were onscheduled anti-inflammatory medications. Of the familieseligible to participate, 87% completed the first laboratory visit.Families were interviewed and completed questionnaires ina laboratory setting. The Asthma Impact Interview14 wasconducted with either mothers or both parents. Followinga procedure reported in previous studies,15 families were askedto tell the story about how asthma had affected their family asif they were talking to a friend over a cup of coffee. Theinterview began with a question about the time the child wasdiagnosed with asthma, followed by questions about how thefamily handled challenging situations associated with asthmacare, and how asthma had affected each member of the family.The interviews lasted approximately 20 minutes and weretranscribed verbatim. Children did not participate in thisportion of the interview. Children and parents completedquestionnaires independently. One year after the initialinterview, families were invited to return to the laboratory,and questionnaires were completed for a second time.

Statistical analysis was conducted by using JMP (SASInstitute Cary, NC) with an examination of group means andone-way analysis of variance.

Measures

FAMILY MANAGEMENT STRATEGIES. A three-point classifi-cation was devised using a format similar to that reported bythe McArthur Family Narrative Consortium.10 Each classi-fication is accompanied by behavioral descriptions to aid incoding. The three classifications1 and their definitions are asfollows. (1) Reactive: anxiety leads family to action. Family hasnot established clear and consistent strategies. Action is takenwhen anxiety about child’s condition is evident. (2) Coordi-nated care: there is one right way to handle all situations.Health professional prescriptions are typically carried aboutby one or two members of the family. (3) Family partnerships:plans are based on multiple sources of information. Sharedphilosophy in working together. Multiple family membersinvolved in planning.

Three research assistants, diverse in ethnicity (white,Hispanic, and black), were trained over a period of ap-proximately 1 month. Coders reviewed 15 videotapes andtranscripts of families not included in this analysis. Interraterreliability was calculated by using intraclass correlationsbetween each pair of raters (intraclass correlation = .84). Allraters reviewed the transcript, viewed the videotape, and madenotes on the transcript before assigning a code.2 To guardagainst coder drift, the coding team met on a regular basis andverbally resolved coding differences.

1 Initially, we expected there to be a category of denial in which families denied theseriousness of the disease. However, this category was not reliably identified, probably inpart a result of recruiting families who agreed to participate in a study aimed at studyingasthma.2 Details of transcribing practices, coder training, and the coding manual are available fromB. H. F.

The Journal of Pediatrics � October 2003

MEDICAL ADHERENCE. Electronic monitoring of medicationuse was conducted in 2-month blocks over a 12-month period,using the Doser-Clinical Trials Version. Adherence rates werecalculated by dividing recorded use with prescribed doseaveraged across the 12-month period. Using a 24-hour recallmethod, parents and children were questioned separatelyabout medication use by using the Adherence in ClinicalTrials interview.16 This measure has been validated againstobjective criteria of medication adherence, including medica-tion measurement and electronic monitors across diversepatient populations. However, the self-report measure typi-cally overestimates adherence when compared with electronicmonitoring.

FUNCTIONAL SEVERITYOFASTHMA.TheFunctional Severityof Asthma scale is a six-item scale (wheezing, night waken-ing, speech limitations, activities limitations) completed byparents.13 The scale has proven reliable, with an internal con-sistency estimate of .89. Validity was demonstrated throughcorrelations between severity and school days missed andmedical visits.

HEALTH CARE UTILIZATION. The number of times the childhad been hospitalized, sought emergency room care, andvisited the doctor for asthma was collected through parentinterview.

I WORRY SCALE. The I Worry Scale is an 11-item scaleadapted from the Maternal Worry Scale for children withchronic illness.17 The I Worry Scale evidences good internalconsistency (a = .94) and test-retest reliability (r = .84). Con-struct validity was demonstrated by moderate correlations withparental depression and anxiety.17

PLANNING FAMILY ROUTINES. As a validity check, the plan-ning subscale of the Family Ritual Questionnaire was used.18

The subscale consists of four items that pertain to how muchplanning is involved in dinnertime, weekend activities, annualcelebrations, and vacations. Test-retest for the complete scalehas been to be reported to be .88 over a 4-week period18 andhas been found to be valid for use in the study of pediatricasthma.19

WORD COUNT AND READING LEVEL. To rule out the pos-sibility that length of interview and verbal complexitycontributed to the results, each transcript was edited toinclude only the family’s comments. Word count and readinglevel were evaluated by using Microsoft Word 98 (MicrosoftCorp, Redmond, Wash).

RESULTSWe found that the interviews could be reliably coded

into one of the three categories, with 14% classified as reactive,53% coordinated care, and 33% family partnerships. The threecategories were not distinguishable by asthma severity, maritalstatus, race, socioeconomic status, word count, or reading

Tales of Pediatric Asthma Management: Family-Based Strategies Relatedto Medical Adherence and Health Care Utilization

level. Child age differed across interview classifications(F[2,77] = 5.97, P < .004), with the families who expressedreactive strategies having older children with asthma(mean = 11.27, SD = 1.48) than either the coordinated care(mean = 9.3, SD = 1.74) or family partnership (mean = 9.9,SD = 1.44) groups. The reactive group’s children were older(mean = 4.81, SD = 4.12) when the parents first noticedasthma symptoms (F[2,77] = 3.17, P < .05) than the co-ordinated care (mean = 2.59, SD = 2.05) or family partner-ship (mean = 2.88, SD = 2.70) groups. The reactive group’schildren were older when they first received the diagnosis ofasthma (F[2,77] = 3.78, P < .03, mean = 6.13, SD = .83)than either the coordinated care (mean = 3.68, SD = .43) orfamily partnership group (mean = 3.90, SD = .56). Onaverage, the reactive group did not receive a diagnosis ofasthma for 1.3 years after first noticing symptoms, whereas thefamily partnership group received a diagnosis within 6 monthsof noticing symptoms. The groups did not differ in terms oftime since diagnosis and point of enrollment in the study. Agewas used as a covariate in subsequent analyses.

To determine whether the asthma management strat-egies evident in the interview were reflective of familymanagement strategies overall, we compared the interviewgroups on their responses with the Family Planning Routinesscale. The groups were distinguishable by their reports ofplanning family routines (F[2,61] = 3.90, P < .03). Thefamily partnership group reported significantly more planningaround family routines (mean = 3.17, SD = .41) than eitherthe coordinated care (mean = 2.79, SD = .56) or the reactive(mean = 2.63, SD = .63) group.

To test our first hypothesis, that the reactive groupwould report the lowest rate of medical adherence, weconducted simple analyses of variance on the Doser data.We found significant group differences (F[2,66] = 3.09,P < .05), with the reactive group measuring the lowestadherence rate over a period of 12 months (Fig 1). A similarpattern was noted in parent (F[2,69] = 13.86, P < .0001) andchild report (F[2,72] = 5.70, P < .0005). The group differ-ences held when child age was used as a covariate (parentreport, F[3,68] = 12.30, P < .0001; child report, F[3,68] =6.85, P < .002).

To test our second hypothesis, that the groups would bedistinguishable by health care utilization, we conducted a seriesof analyses of variance. Contrary to prediction, we found thatthe family partnership group had more doctor visits(F[2,77] = 2.89, P < .06, mean = 7.2, SD = 1.37) than eitherthe reactive (mean = 2.64, SD = 2.14) or the coordinated caregroup (mean = 3.38, SD = 1.09). The groups did not differ,however, in their report of emergency department visitsbecause of asthma in the year concurrent to the interview. Alsocontrary to prediction, the groups did not differ in regard tothe amount of worry expressed about the child’s asthma.

Our next round of analyses considered whether thestrategies evident in the interviews would predict health careutilization and adherence 1 year after the interview. Thereactive group continued to report the lowest rates of medicaladherence (parent report, F[2,64] = 3.93, P < .03), and there

459

Fig 1. Adherence rates based on family management strategies at time of interview and 1-year follow-up.

was a significant time by interview group interaction

(F[2,51] = 9.06, P < .0004). Based on child report of medical

adherence, the reactive group remained significantly lower

than the other two groups (F[2,57] = 7.65, P < .001).Whereas we did not find group differences on emergencydepartment visits concurrent with the interview, we found thatthe reactive group had significantly more emergency de-partment visits 1 year after the interview (F[2,62] = 4.25,P < .02). Results are presented in Figure 2.

We examined whether parents who used reactivestrategies continued to worry about their child’s condition.This analysis served as a validity check. We reasoned thatparents who did not develop effective treatment strategiesmight continue to worry about their child’s condition. Oneyear after the interview, the reactive group reported a greateramount of worry about their child’s asthma than either of theother groups (F[2,62] = 4.22, P < .02).

460 Fiese and Wamboldt

DISCUSSIONWe set out in this study to determine whether verbal

accounts of family management strategies were related tohealth care utilization and adherence rates in cases of pediatricasthma. We found that the stories that parents told about howasthma affected their lives could be reliably coded, wereunrelated to linguistic markers and demographic background,and were concurrently and prospectively predictive of medicaladherence.

There are several limitations to this study that deserveattention. We identified three types of family managementstrategies through an interview that we speculated would berelated to the family’s beliefs about the controllability of theillness. However, we do not directly assess family beliefsthrough a standard questionnaire. We believe that this is anarea that deserves further attention. It is also plausible that themanagement strategies we detected through an interview are

The Journal of Pediatrics � October 2003

closely linked to characteristics of the caregivers, such asanxiety or depression, that may affect disease outcome.20

Furthermore, we did not consider how child characteristics,such as communication practices, may influence the caregivers’portrayal of the effects of asthma.21We suspect that over time,transactions occur between parent and child, with eachcontributing to family beliefs and practices.22 Limitations instudy design should also be recognized. Because we initiallyexcluded children who had been recently hospitalized,children with more involved treatment plans at time of studyentry may have been excluded.

We believe that the results from this study point to oneavenue by which families are called to action in seekingtreatment. The reactive group had a higher rate of emergencydepartment visits 1 year after the interview, and the childrendid not receive a confirmed diagnosis of asthma until 1 yearafter the parents first noticed symptoms. We think these twophenomena are related to each other in that families whoreport that the disease is not controllable and that their actionswill have little effect may not seek medical care even in the faceof symptoms. It is only once the symptoms become so severethat they require emergency care that the family is called toaction. Current treatment guidelines emphasize the impor-tance of action plans and seeking care at the first sign of thechild’s symptoms.23 However, in some cases, families maynotice symptoms but not engage in preventive care. Carefulattention to the family’s expressed ability to treat the child’sasthma effectively may provide a clue about whether they willfollow the prescribed treatment plan. Parents who engage inanxious coping strategies may be at heightened risk for psy-chological disturbances,20 whichmay in turn compromise theirability to perform routines associated with medical care.24

Consistent with previous reports, we found that self-report measures overestimate adherence when compared withelectronic monitoring.16 Interestingly, for the reactive group,the self-report at time of study entry and the electronic record-ing were comparable (approximately 36%). At the 1-yearfollow-up, the self-report adherence rate for this groupincreased to 60%. The social desirability effect withina healthcare relationship may revolve around a desire to pleasea provider or researcher.16 For the majority of the familiesin this report, there was an overestimate of self-reportedadherence that remained relatively stable across the year. Forthe families classified as reactive, however, there may havebeen an intervention effect on self-report by virtue of being inthe study. The reactive families may have begun to forma relationship with the research team that prompted a desire toreport medication use more in line with prescribed guidelines,although still considerably below 70%. The increase in pa-rental worry about the child’s disease for the reactive group isalso consistent with this point. The parents in this group mayhave become more aware about asthma symptoms and theirseverity by participating in the study. Although more worried,they were not called to action. Future efforts are warranted,however, to determine whether the management stylesexpressed in an interview may be an opportunity for educa-tion and prevention efforts. A careful matching of inter-

Tales of Pediatric Asthma Management: Family-Based Strategies Relatedto Medical Adherence and Health Care Utilization

vention type (eg, anxiety reduction, education, increasedfamily collaboration) with management style may increaseeffectiveness.

Many of the questions that were asked in the AsthmaImpact Interview could be incorporated into family discussionsand indicate who may be at risk for not following through onrecommendations and who may be ill equipped to followmedical advice. Although a 20-minute interview is too lengthyfor routine pediatric care, targeted questions about how asthmaaffects the family’s daily life may prove informative. Futureefforts are warranted to adapt interviews for use in a clinicalcontext.Many of the families in our study commented that thiswas the first time anyone had asked them how asthma hadaffected the whole family. Pediatricians have the opportunityto engage families in their tales of asthma management.Careful attention to different strategies can provide cluesabout whether the patient may be at risk for poor adherenceand the family may be in need of further intervention.24

Families create working models of health beliefs and diseasemanagement that can either aid them in performing a medicalregimen or prevent them from noticing symptoms that canlead to serious complications if left untreated. By listening tothe stories that families have to tell, health care providers maybe better equipped to treat their asthmatic patients and createpartnerships for effective family care.

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TION

ter a single topical application in an infant,’’ by Kameda et al,ume 143, page 280) contains an error. The authors should be

msen, Jean Krutmann, Tim Niehues

The Journal of Pediatrics � October 2003