Promoting parental compliance with home infant apnea monitor use

Promoting parental compliance with home infant apneamonitor use

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Lisa Bakera, Bruce Thyerb, c, d,*aSchool of Social Work, University of Georgia, USA

bSchool of Social Work & Department of Psychology, University of Georgia, USAcDepartment of Psychiatry and Health Behavior, Medical College of Georgia, USA

dSchool of Human and Health Sciences, University of Hudders®eld, UK

Abstract

Objective: To promote greater compliance in using prescribed infant apnea monitors among familieswith a medically at-risk infant. Eight consecutively referred non-compliant families were treated by amedical social worker who provided educational, behavioral prompting, and case management services.In six families results were evaluated with A±B single case research designs, and in two families A±B±Adesigns were used. Enhanced compliance followed intervention with all eight families. Clinicallysatisfactory compliance permitting the pediatrician to safely discontinue monitor use occurred in ®ve ofthe eight families. Simple behavioral and case management interventions show great promise inpromoting caregiver compliance with using home-based infant apnea monitors. # 2000 Elsevier ScienceLtd. All rights reserved.

1. Introduction

The issue of noncompliance with recommended health-care regimens has been a long-standing problem in the medical community. Noncompliance becomes even more signi®cant,

Behaviour Research and Therapy 38 (2000) 285±296

0005-7967/00/$ - see front matter # 2000 Elsevier Science Ltd. All rights reserved.PII: S0005-7967(99)00065-0

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pPortions of this research were submitted to the Graduate School of the University of Georgia in partial ful®lment

of the requirements for the Ph.D. degree in Social Work.* Corresponding author. Dr B.A. Thyer, School of Social Work, University of Georgia, Athens, GA 30602. Tel.:

+1-706-542-3364; fax: +1-706-542-3282.E-mail address: [email protected] (B. Thyer).

however, when the medical regimen involves a parent or other caregiver who is noncompliantwith a medical regimen prescribed for their child. Since the late 1970s, home cardio-respiratory(apnea) monitoring has been used to monitor cardiac and respiratory activity of infants outsidethe hospital setting (Spitzer & Gibson, 1992). Apnea monitor technology has improvedtremendously in recent years, becoming sophisticated electronic devices that are commonlyutilized as a cost e�ective way to reduce length of stay for hospitalized infants (Malloy &Graubard, 1995; Spinner, Gibson, Wrobel & Spitzer, 1995; Whitaker, 1995). Infants whowould otherwise require lengthy hospitalization for surveillance and diagnosis are now able tobe discharged home to the care of their parents.

Home apnea monitoring uses an electronic device to continuously record respiratory andcardiac activity and to detect episodes of prolonged apnea (breathing cessation) or bradycardia(abnormally slow or absent heart rate). Leads on the heart are held in place on the infant'schest by a Velcro belt or with an adhesive strip. When apnea or bradycardia occurs (themonitor's sensitivity can be adjusted), a loud alarm sounds, alerting the caregiver thatintervention may be necessary. This intervention ranges from gentle to vigoros stimulation tocardio-pulmonary resuscitation (Spitzer & Gibson, 1992; Whitaker, 1995). The home apneamonitor is attached to the infant during periods of presumptive highrisk (e.g., sleep times,placement in a carseat, or when the infant is not being directly observed by another person).

Contemporary home apnea monitors continuously record respiratory rate and cardiacwaveform activity, providing information about conditions that may not manifest in outwardlyobservable ways. Events of prolonged apnea and bradycardia that are not detected may resultin serious complications, including hypoxic insult (lack of oxygen resulting in tissue damage) tothe brain or death (Whitaker, 1995). In addition, apnea monitors provide information aboutthe dates and duration that the monitor was placed on the infant to monitor compliance. Dataare stored in microchip memory, which is downloaded using a modem through the hometelephone to an apnea center, where waveforms and information on compliance are viewed andanalyzed by the health care sta�.

Home monitoring is commonly indicated for infants who have prolonged episodes of apnea(halted breathing) and/or bradycardia (slow or absent heart rate) resulting from prematurity,and infants who have an apparent life threatening event (ALTE) (Malloy & Ho�man, 1996;Spitzer & Gibson, 1992). In addition to these conditions, being a direct sibling of a SIDS(sudden infant death syndrome) victim is a factor that may also suggest home monitoring(Freed, Steinschneider, Glassman & Winn, 1994; Keens & Davidson-Ward, 1993; Malloy &Ho�man, 1996; Beal, 1992; Oren, Kelly & Shannon, 1987).

Depending on the diagnosis, the recommended length of time for an infant to be monitoredin this manner is about three months after the last recorded ALTE, longer if the infant is onoxygen or has a tracheotomy (Keens & Davidson-Ward, 1993; Spitzer & Gibson, 1992).However, in instances of noncompliance it is di�cult to determine when a monitor may besafely discontinued if there is not enough waveform information available.

The issue of compliance with home apnea monitor use is not widely discussed. Spitzer andGibson (1992) list lack of compliance as one of the top ten most common problemsencountered during home monitoring in their review of monitoring practices. Additionalconcerns about noncompliance are raised by Meny, Blackmon, Fleishman, Gutlerbet and

L. Baker, B. Thyer / Behaviour Research and Therapy 38 (2000) 285±296286

Naumberg (1988) and Davidson-Ward et al. (1986), who found that some SIDS deaths couldbe associated with noncompliance of home apnea monitor use.Davidson-Ward et al. (1986), in a review of seven deaths of infants while on home monitors,

found that ®ve of the deaths could be associated with caregiver noncompliance. Kelly (1988)also found that in 21 deaths among 1445 monitored infants, nineteen occurred concurrent withnoncompliance with home monitoring, and noted `` . . . for the total population of infants, themortality rate associated with noncompliance was greater than with compliance'' (p. 161).Along with the medical aspects, noncompliance is a ®nancial problem, when health care

resources are expended to cover equipment and care that is not being utilized, or being usedlonger than is necessary. At our clinic, the average monthly rental of a home monitor is$450.00, with nursing setup and additional visits at $125.00. This price does not includephysician costs associated with the interpretation of downloaded information, or additionalnursing and technical costs.There are a few studies which have studied the phenomenon of caregiver noncompliance

with home apnea monitor regimens (Gibson, Spinner, Cullen, Wrobel & Spitzer, 1996; Silvestriet al., 1995), of which several relied solely upon parental self-report of monitor use (Meny etal., 1988; Ahmann, Meny, Wul� & Fink, 1993). In general, few demographic factors haveemerged which reliably predict compliance, and it has been retrospectively suggested that morefrequent clinician contact with families prescribed monitors tends to be associated with greatermonitor use. The one prior study evaluating an intervention intended to promote compliancewith using a home infant apnea monitor was conducted by Baker and Thyer (in press), whoevaluated a treatment package involving behavioral prompting, education, and casemanagement. The outcomes were assessed using an A±B single case research design with oneinfant's family. Parental compliance was signi®cantly enhanced to the extent that thepediatrician was able to safely discontinue home monitoring. We now report a directreplication of the Baker and Thyer (in press) study, with an additional series of eight families.

2. Method

2.1. Clinic setting and patient sample

This study was conducted at the Apnea Clinic of Egleston Childrens' Hospital (Atlanta,GA), a follow-up clinic for babies born prematurely at the hospital and who were prescribedhome apnea monitoring from their initial hospital discharge, or had other medical conditionswhich required home monitoring. Many patients seen at this clinic were already considered a`high risk' due to social circumstances, including lower socioeconomic status, single parentfamilies and adolescent mothers. A convenience sample was used, consisting of the ®rst eightreferrals that met the following criteria:

1. The family was referred by an Apnea Clinic sta� member for concerns regardingcompliance, where the family had a history of non-compliance greater than 30 days andwho required at least one more month of reliable and consistent monitoring before themonitor could be discontinued.

L. Baker, B. Thyer / Behaviour Research and Therapy 38 (2000) 285±296 287

2. The family was seen initially during a clinic appointment, hospital admission or a home visitand had a phone available in the home.

3. The family members spoke English.

2.2. Intervention package

The same intervention package described by Baker and Thyer (in press) was provided,involving education, case management and behavioral prompting. The ®rst part of theintervention consisted of an initial face-to-face, semi-structured interview which gatheredinformation about the family and provided information about the role of the social worker inhelping the caregiver follow the monitor regimen. During this interview, information wasprovided regarding the impact or consequences of noncompliance, and barriers to caregivercompliance were identi®ed. The parent was cautioned that prolonged failure to appropriatelyuse the infant apnea monitor may result in a referral of the caregivers to the state'sDepartment of Family and Children's Services, who would then conduct an investigation forpossible child neglect. When appropriate, the social worker intervened to help the parentovercome barriers to compliance (e.g., obtain telephone services in the home; obtainappropriate daycare services for her medically fragile infant, so that the mother could workoutside the home; assist with transportation services, such as providing bus tokens, etc.).Without telephone service, it is di�cult to download the monitor in the home without anursing visit, requiring extra time and e�ort to coordinate. Many daycare centers will notaccept infants with special needs such as monitoring, and hence the family may refrain fromusing the monitor if daycare is necessary for the family to function. Additionally, a service assimple as providing transportation may assist the family in keeping scheduled clinicappointments.The second part of the intervention consisted of behavioral prompting in the form of

reminder phone calls at weekly intervals. As well as serving as a prompt, the phone callsprovided an opportunity to provide verbal reinforcement for reported compliance and toproblem-solve any additional barriers. The calls continued weekly until such time as themonitor had been discontinued by the physician. The present use of prompting is consistentwith the de®nition provided by Fischer and Gochros (1975, p. 78): `` . . . a social worker would®rst prompt a client by clarifying what behaviors should be performed and under whatconditions, and second and more speci®cally, by verbally encouraging or assisting the client toperform the behavior.''Ðand with the description of Malott, Whaley and Malott as `` . . . (a) asupplemental verbal stimulus (b) that raises the probability of a correct response'' (1993, p.230). The weekly phone calls also served to continue the case management functions ofidentifying and removing barriers to compliance.

2.3. Outcome measure

The apnea monitor used with these infants recorded the number of days and hours themonitor was used between downloads. Downloads could also be obtained by a visiting nurse in


the home if the family does not have telephone access; however, this was rare. Downloads wereroutinely obtained once a month, more frequently if many alarms ®lled the monitor memory tocapacity. While 100% compliance is ideal, adequate compliance was established as use for atleast 75% of the days for at least 8 h per day, or as otherwise determined by the pediatrician.While it would have been preferable to have a set criteria for each patient, patients could besafely discharged at a lower compliance level according to the physician's clinical judgment ofthe infant's condition.Retrospective data collection consisted of a chart review of archival apnea center data and

documentation of interventions in the medical record. Downloaded information on homemonitor usage was obtained by the Apnea Clinic sta� via chart review.

2.4. Research design

This study made use of an A±B research design, that was replicated over six cases, with twoadditional cases using an A±B±A design. The A phase was used to designate a baseline phaseand the B comprised a combination intervention using behavioral prompting and casemanagement. The second A phase designates a post-intervention or return to baseline phase(i.e., discontinuance of prompting calls and case management services).

3. Results

The sample consisted of eight African-American families involving ®ve male infants andthree female infants being followed by home monitors. In seven of the cases the primarycaregiver was the mother of the child, while in one case the maternal grandmother was theprimary caregiver. The caregivers ranged in age from 15±54 years (maternal grandmother)(M = 26.6, SD = 11.8). Five of the eight (63%) caregivers were single and three (37%) were

Table 1Selected demographic and medical variables of the eight infants and their families

Family no.

Variable 1 2 3 4 5 6 7 8

Gender F M M M M M F FCaregivera M M M M M GM M MCaregiver age (years) 24 28 18 26 15 54 24 24

Marital status M S S M S M S SNumber of siblings 0 2 0 0 0 0 1 1Medicaid Y Y Y N Y Y Y YLength of NICU stay (days) 60 5 54 11 257 60 67 55

Prenatal care Y Y Y Y N N Y YGestational age at birth (weeks) 23 35 27 36 28 31 26 26Diagnosisb AOP ALTE AOP AOP AOP AOP AOP AOP

a M=Mother; GM=Grandmother.b AOP=Apnea of Prematurity; ALTE=Apparent Life Threatening Event.


married and living with their husbands. The number of siblings for each of the cases rangedfrom 0±3 (M= 1.1, SD = 1.3). Seven (88%) of the families had Medicaid insurance coverageand one had private insurance coverage.All eight infants had a previous admission to the neonatal intensive care unit, with a mean

length of stay of 71 days (SD = 78.8, range=5±257 days). Prenatal care was obtained by sixof the eight mothers, although speci®c information regarding number and quality of prenatalvisits was not available. The gestational age for the infants at birth averaged 29 weeks(SD = 4.6, range=23±36). Although all eight of the infants were clinically premature (i.e.,gestational age less than 37 weeks), only seven were followed by the apnea center with thediagnosis of apnea of prematurity. The remaining case was followed for a diagnosis of anapparent life threatening event. All infants were placed on a monitor either from their initialhospitalization at birth or within the ®rst month after their discharge home (see Table 1).Summary outcome data are presented in Table 2 and in Figs. 1±4. The goal of intervention

was to increase compliance to a level where the pediatrician could safely discontinue the homemonitor. In ®ve (63%) of the eight cases this goal was achieved and the monitor wasdiscontinued by the physician. With families 2, 3 and 5, compliance did not reach a level thatwas satisfactory to the pediatrician, and the monitors were discontinued for non-compliance.

Table 2

Percentages of days and hours per day of monitor use for the eight families

Baseline Intervention Post-intervention

Family 1Days 17% 100% 94%Mean h per day 2.8 14.6 11.6

Family 2Days 10% 49% 38%Mean h per day 9.5 9.1 6.9

Family 3Days 10% 35% n/aMean h per day 5.2 8.6Family 4

Days 0% 96% n/aMean h per day 0.0 11.7Family 5



Days 46% 74% n/aMean h per day 7.4 4.9Family 8Days 45% 79% n/a

Mean h per day 5.1 5.2


Fig. 1. Daily apnea monitoring compliance data for families 1 and 2.






In all eight cases, use of the monitor during the intervention phase was appreciably higher thanduring the baseline phase, with respect to both the number of days used or in the averagenumber of hours per day the monitor was operated.Another promising result of the data was found in the families that included a second

baseline phase (families 1 and 2): the post-intervention phase compliance level, while lower,



was appreciably higher than during the original baseline phase. These results re¯ect well on themaintenance of the intervention's e�ects.

4. Discussion

Experimentally, the consistent increases in monitor use in all eight families, which occurredonly after intervention, argue in favor of attributing these changes to the intervention itself,and not to some intervening variables. Clinically the intervention was unambiguouslysuccessful in ®ve of the eight cases. These results support the use of relatively simpleeducational, behavioral, and case management interventions as e�ective methods to promotefamily compliance with home-based infant apnea monitor use.The intervention package has several components and thus precludes making any strong

inferences about the critical ingredients of the program. However, since all components wererelatively low cost as well as clinically necessary, it seems likely that future interventions willsimilarly consist of multiple interventions.Anecdotally we observed from the onset of intervention that all three of the eventually

noncompliant cases required higher levels of support and case management than the otherfamilies. This was associated with greater problems being experienced by the families (e.g.,di�culties in housing, employment, childcare, marital stress). The small number of families weworked with preclude any generalizations, but we believe that the above observation suggests afruitful area for future studies aimed at isolating the causes of noncompliance.We believe that downloading monitor data more frequently than once a month, and

providing relatively more rapid feedback to families, both written, verbal, and graphic, holdpromise as additional methods to enhance compliance. Another potentially useful interventionwould be to augment verbal praise with more tangible reinforcers, contingent upon adhering togradually more stringent improvements in compliance.

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Promoting parental compliance with home infant apnea monitor use