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Children’s Health Care, 37:78–92, 2008 Copyright © Taylor & Francis Group, LLC ISSN: 0273-9615 print/1532-6888 online DOI: 10.1080/02739610701766925 The Influence of Parental Supervision on Medical Adherence in Adolescents With Cystic Fibrosis: Developmental Shifts From Pre to Late Adolescence Avani C. Modi Department of Pediatrics Division of Behavioral Medicine and Clinical Psychology Cincinnati Children’s Hospital Medical Center Kristen K. Marciel and Shalonda K. Slater Department of Clinical and Health Psychology University of Florida Dennis Drotar Division of Behavioral Pediatrics and Psychology Case Western Reserve University Alexandra L. Quittner Department of Psychology University of Miami Previous research suggests that both parental supervision and adherence decrease in adolescence, as the drive for independence and autonomy emerge naturally dur- ing this developmental period. The current study evaluated relationships between patient-reported parental supervision and adherence in 103 preadolescents and adolescents with cystic fibrosis (CF). Activity patterns (medical and nonmedical) Correspondence should be addressed to Avani Modi, Ph.D., Cincinnati Children’s Hospital Medical Center, Division of Behavioral Medicine and Clinical Psychology, 3333 Burnet Ave., MLC 3015, Cincinnati, OH 45229. E-mail: [email protected] 78

The Influence of Parental Supervision on Medical Adherence in Adolescents With Cystic Fibrosis: Developmental Shifts From Pre to Late Adolescence

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Page 1: The Influence of Parental Supervision on Medical Adherence in Adolescents With Cystic Fibrosis: Developmental Shifts From Pre to Late Adolescence

Children’s Health Care, 37:78–92, 2008

Copyright © Taylor & Francis Group, LLC

ISSN: 0273-9615 print/1532-6888 online

DOI: 10.1080/02739610701766925

The Influence of Parental Supervisionon Medical Adherence in AdolescentsWith Cystic Fibrosis: DevelopmentalShifts From Pre to Late Adolescence

Avani C. ModiDepartment of Pediatrics

Division of Behavioral Medicine and Clinical Psychology

Cincinnati Children’s Hospital Medical Center

Kristen K. Marciel and Shalonda K. SlaterDepartment of Clinical and Health Psychology

University of Florida

Dennis DrotarDivision of Behavioral Pediatrics and Psychology

Case Western Reserve University

Alexandra L. QuittnerDepartment of Psychology

University of Miami

Previous research suggests that both parental supervision and adherence decrease

in adolescence, as the drive for independence and autonomy emerge naturally dur-

ing this developmental period. The current study evaluated relationships between

patient-reported parental supervision and adherence in 103 preadolescents and

adolescents with cystic fibrosis (CF). Activity patterns (medical and nonmedical)

Correspondence should be addressed to Avani Modi, Ph.D., Cincinnati Children’s Hospital

Medical Center, Division of Behavioral Medicine and Clinical Psychology, 3333 Burnet Ave., MLC

3015, Cincinnati, OH 45229. E-mail: [email protected]

78

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SUPERVISION AND ADHERENCE IN ADOLESCENTS WITH CF 79

were measured using the daily phone diary (DPD) and adherence to nebulized

medications was measured electronically. Age was strongly related to amount of

supervision, with less supervision provided for older adolescents. Further, pread-

olescents and adolescents who spent more of their treatment time supervised by

parents, particularly mothers, had better adherence.

Medical advances have led to longer life spans for individuals with cystic fibrosis

(CF), with median life expectancy estimated at 36.8 years of age (Cystic Fibrosis

Foundation, 2006). As a result, the standard of care treatment regimen for CF has

expanded and now includes inhaled antibiotics, dornase alpha, oral antibiotics,

enzymes, dietary alterations, digestive medications, and airway clearance, which

can take several hours a day to complete (Rowe & Clancy, 2006). Nebulized

medications (e.g., tobramycin, dornase alpha), one of the primary treatments for

patients with CF, are known to improve health outcomes. Specifically, inhaled

tobramycin has been shown to reduce infection and prevent hospitalization

(Geller, Pitlick, Nardella, Tracewell, & Ramsey, 2002; Murphy et al., 2004)

and dornase alpha reduces inflammation and improves lung function (Fuchs

et al., 1994; Paul et al., 2004).

From infancy through the school-age period, parents are primarily responsible

for organizing and assisting their children with treatments. However, as children

transition into adolescence, there is a shift toward greater independence and

autonomy, which leads to changes in parent-child roles. The adolescent’s move

toward independence and efforts to renegotiate family roles and responsibilities

for disease management are significant developmental tasks that can cause

greater conflict and stress for both adolescents and parents (Leonard, Garwick, &

Adwan, 2005; Quittner, Drotar, et al., 2000). Recent results suggest that conflict

between parents and adolescents about disease management predicts adherence

for teens with CF (Quittner, Drotar, & Ievers-Landis, 2004) and metabolic control

for teens with diabetes (Anderson, Auslander, Jung, Miller, & Santiago, 1990).

To date, research on parental supervision of medical treatments and its rela-

tionship to adherence has been sparse, with the exception of pediatric diabetes

(Anderson, Ho, Brackett, Finkelstein, & Laffel, 1997; Ingersoll, Orr, Herrold, &

Golden, 1986). The diabetes literature suggests that parents decrease involvement

in diabetes management during adolescence (Anderson et al., 1997), with virtu-

ally no parental participation after 15 years of age (Ingersoll et al., 1986). Un-

fortunately, less parental supervision was not balanced by increased adolescent

responsibility for insulin injections and testing. In fact, across several pediatric

conditions, including human immunodeficiency virus (Mellins, Brackis-Cott,

Dolezal, & Abrams, 2004), diabetes (Anderson et al., 1997), and CF (Zindani,

Streetman, Streetman, & Nasr, 2006), studies indicate that adherence to medical

regimens decreases during adolescence. In CF, Zindani and colleagues found

a trend suggesting that adherent patients tended to be younger (e.g., 12 and

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80 MODI ET AL.

under) rather than older (e.g., up to 18; Zindani et al., 2006). Overall, research

suggests that older adolescents are at highest risk for poor adherence and, as

such, it is important to identify the developmental age at which adolescents

become capable of managing a complex disease on their own. Thus, one goal

of the current study is to understand the link between parental supervision and

adherence, particularly in the context of this developmental period (Anderson

et al., 1997; Johnson et al., 1992; Wysocki et al., 1996).

One significant limitation of prior research is its reliance on self-report

measures of supervision—typically developed on an ad hoc basis using global

ratings rather than actual behaviors. For example, Anderson and colleagues

(1997) developed an interview in which families were asked about the division of

responsibilities related to insulin injections and blood glucose monitoring. Each

task (e.g., set up glucose meter) was scored on parental involvement with scores

ranging from 1 (no parental involvement) to 4 (maximum parental involvement).

Although this type of measure provides descriptive information about parental

supervision, it does not assess amount of supervision in the context of real-time

interactions. These global ratings make it difficult to translate the effects of

parental supervision into an intervention we can teach to parents.

Recently, researchers have begun to adapt activity pattern analysis (Stephens,

Norris-Baker, & Willems, 1983) to the electronic age. For example, ecological

momentary assessment (EMA) and day reconstruction methods (DRM) are

types of activity pattern analyses that evaluate a wide range of behaviors in

various social and health contexts (Csikszentmihalyi & LeFevre, 1989; Kahne-

man, Krueger, Schkade, Schwarz, & Stone, 2004; Massimini, Csikszentmihalyi,

& Carli, 1987; Modi & Quittner, 2006; Shiffman et al., 2002). Measurement

of daily activities has several advantages over summary global ratings. First,

data are collected in real time or within a short, 24-hour period so that actual

behaviors rather than global estimates of behavior are obtained. Second, because

data is collected in real time, there is less memory decay and less potential for

social desirability biases. Finally, activity pattern analysis measures experience

and affect embedded within social and interpersonal contexts, yielding infor-

mation that integrates social roles with medical contexts (Quittner, DiGirolamo,

Michel, & Eigen, 1992). For example, Schiffman and colleagues (2002) utilized

handheld computers to record behaviors that preceded smoking in individuals

who had completed a smoking cessation program. This allowed them to identify

the precise social and biological triggers for smoking.

Another method that captures daily activity patterns is the DRM, which

facilitates recall of activities during the previous day by constructing a diary.

The DRM allowed Kahneman and colleagues to assess situational, personality,

and affective experiences contributing to life satisfaction in adults (Kahneman

et al., 2004). Similarly, pediatric researchers have developed computerized phone

diary procedures (24-Hour Recall, Johnson, 1995; daily phone diary [DPD],

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SUPERVISION AND ADHERENCE IN ADOLESCENTS WITH CF 81

Quittner & Opipari, 1994). The DPD tracks activities, companions, and mood

over the previous 24 hours (Quittner & Opipari, 1994; Quittner, Opipari, Regoli,

Jacobsen, & Eigen, 1992) and has been used to assess parental differential

treatment in children with CF (Quittner & Opipari, 1994), marital and family

activity patterns in families with chronically ill children (Modi & Quittner, 2006;

Quittner et al., 1998; Quittner, Opipari, et al., 1992), and adherence to medical

regimens in children with asthma and CF (Modi et al., 2006).

The purpose of this study was to evaluate the effects of age and parental

supervision on adherence in a large sample of preadolescents and adolescents

with CF, ages 10 to 17 years. It was hypothesized that parental supervision

of treatments would decrease with age, with no parental supervision once the

adolescent entered high school. It was also hypothesized that the transition

from middle school to high school would mark a critical period of decline

in parental supervision of medical treatments (Ingersoll et al., 1986). Finally,

parental supervision was expected to be significantly related to adherence of

nebulized medications.

METHOD

Participants

The current study is based on data from a larger randomized, controlled trial

comparing the effects of a family learning program (FLP) and behavioral family

systems therapy (BFST) in improving adherence and reducing family conflict

(DeLambo, Ievers-Landis, Drotar, & Quittner, 2004; Quittner, Drotar, et al.,

2000). One hundred and seventeen participants were recruited from six pediatric

pulmonary centers across three states. Eligibility criteria for participants included

(a) age between 10 and 17 years, (b) a proven diagnosis of CF, and (c) no

evidence of serious psychopathology. Serious psychopathology was determined

by parent report of a previous psychiatric diagnosis; no cases were reported. Two

hundred and thirty-one families were approached for participation in the larger

study. Eighteen were eventually excluded for not meeting study criteria, and

96 who met criteria declined to participate for the following reasons: distance

needed to travel (n D 22; 23%), time constraints (n D 21; 22%), lack of interest

(n D 4; 4%), and other (e.g., unwillingness to talk about the illness; n D 15;

16%). Some of those approached did not state a reason for declining (n D 26;

27%), and others (n D 8; 7%) agreed to participate but could not be reached

after several attempts. Of the 117 families eligible for the current study, 14

families did not have adolescent daily phone diary data at baseline; thus, data

from 103 families were included in this study.

Mean age of participants was 13.4 years (SD D 1.8) and 47% were female.

Average forced expiratory volume in one second (FEV1% predicted), a measure

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82 MODI ET AL.

of pulmonary functioning, was 82.1% (SD D 18.8). Seventy-seven percent of

the sample was classified as having mild disease, 20% moderate disease, and

3% severe disease. Ninety-four percent of preadolescents and adolescents were

Caucasian, 4% African American, and 2% Other. Mean age of primary care-

givers was 39.7 (SD D 5.5) and 69% were married. Ninety percent of primary

caregivers were mothers and 10% were fathers. Education level for the primary

caregiver was as follows: less than a high school diploma (11%), high school

graduate (31%), partial trade or college education (54%), and college/university

graduates (4%).

Measures

Background information form. Parents completed a background informa-

tion form at the initial visit, which asked about patient’s date of birth, gender,

parents’ ages, socioeconomic status, occupation, and composition of the family.

Daily phone diary (DPD). The DPD is a phone-based diary that tracks

patients through their activities over the past 24 hours using a cued recall proce-

dure. This provides a fine-grained analysis of activity patterns, companions, and

mood (Quittner & Opipari, 1994; Quittner, Opipari et al., 1992). A set of 3 DPDs

(2 weekdays and 1 weekend day) was conducted with patients by phone. For all

activities lasting 5 minutes or longer, preadolescents and adolescents reported

the type of activity, its duration, who was present, and a mood rating ranging

from 1 (extremely negative) to 5 (extremely positive). The phone interviewer

assisted each participant in reconstructing his day as accurately as possible by

providing prompts, such as the time of day or information about the previous

activity (“After you finished dinner, what did you do next?”). Each activity was

recorded by the interviewer on a computer screen with clock hands that rotated

through a 24-hour clock. The DPD has yielded reliable stability coefficients over

a 3-week period (rs D .61–.71, p < .01) and high levels of interrater reliability

(> 90%) in CF samples (Quittner, Opipari, et al., 1992). In the current study, the

phone interviewers were trained to criterion; however, interrater reliability was

not assessed. Good agreement (77–80%) was found between daily activities

measured on the DPD and the Self-Observation Report Technique (Stephens

et al., 1983). Finally, strong convergence was found between rates of adherence

measured on the DPD and objective measures, such as electronic monitors

of nebulized medications (Modi et al., 2006; Modi & Quittner, 2006). It is

important to note that only adolescents’ DPD data were analyzed because we

did not assume that parents would overlap significantly with their teens in daily

activities and interactions. Thus, the adolescents’ diaries were considered a more

reliable source of data on how their time was spent and with whom each day.

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SUPERVISION AND ADHERENCE IN ADOLESCENTS WITH CF 83

For the purposes of this study, time in various activities was grouped accord-

ing to companions: activities with parents and activities performed alone. If the

adolescent spent time with both parents simultaneously, the activity was counted

for each parent. Time spent alone did not include sleeping, which averaged 556

minutes for this sample. Time in minutes was extracted for two types of daily

activities: nonmedical and medical care. Nonmedical activities included the fol-

lowing: (a) recreational activities outside of the home (e.g., shopping, dancing),

(b) recreational activities inside the home (e.g., watching television), (c) self-care

(e.g., bathing, dressing), (d) chores, and (e) school/work. Medical care included

the following: (a) preparing medications; (b) doing treatments, including airway

clearance, enzymes, and whatever medications were currently prescribed (e.g.,

oral antibiotics, nebulized antibiotics); (c) picking up prescriptions; (d) time

speaking with healthcare professionals; and (e) medical appointments.

Electronic monitoring. Electronic monitors provide an objective method

of measuring adherence (Modi et al., 2006; Quittner, Espelage, Ievers-Landis,

& Drotar, 2000). Although several treatments were monitored electronically in

the larger study (e.g., The VestTM Airway Clearance System monitors, nebulized

medications, metered dose inhalers), only adherence to nebulized medications

was used in the current analyses. These monitors were selected because a larger

proportion of patients (n D 51) had nebulized medications prescribed and a

monitoring device was available compared to The VestTM Airway Clearance

System (n D 12) or metered-dose inhalers, which were often prescribed as

needed instead of on a regular basis. The electronic monitor for the nebulized

medications connected the nebulizer plug to the electrical outlet and recorded

the date, time, and duration of use (Hill-Rom Services, Inc., St. Paul, MN).

Prescribed treatment plan. The prescribed treatment plan (PTP) is a brief

instrument completed by physicians that documents the current treatment regi-

men (Quittner, Espelage, et al., 2000). Each component of treatment, including

all nebulized medications, was documented with the PTP.

Health status. Pulmonary function tests (PFTs) are the gold standard for

measuring respiratory functioning and lung damage for patients with CF. The

most recent FEV1% predicted value obtained from the Knudson equations was

recorded for all participants (Knudson, Slatin, Lebowitz, & Burrows, 1976).

Procedure

The protocol and consent forms were approved by the appropriate institutional

review boards. All patients meeting the basic entry criteria were contacted, either

during a clinic visit or by mail, and given an information letter describing the

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84 MODI ET AL.

goals and procedures of the study. The letter indicated that the study’s purpose

was to compare the effectiveness of two family interventions for improving

adherence in adolescents with CF and their parents. A clinical nurse or trained

research assistant approached the patient and parent to discuss the requirements

of the study. Informed consent was obtained from parents and written assent from

the patient. The baseline assessment was completed in the clinic or investigator’s

laboratory at a convenient time for the participants. Daily phone diaries were

conducted approximately one month after the baseline visit. The larger study,

which enrolled participants from 2001 to 2003, included a baseline assessment,

11 family sessions, and follow-up measures. The current study examined only

baseline data using the following measures: background information, daily phone

diary (average of 3 days), electronic data on nebulized treatments, and pulmonary

functioning (e.g., FEV1% predicted).

Data and Statistical Analyses

Calculation of adherence to nebulized medications. Adherence to neb-

ulized medications was calculated for both frequency and duration of the treat-

ments. Frequency was calculated from the number of treatments performed each

day, divided by the number of treatments prescribed, then multiplied by 100% to

determine rate of adherence for the number of times prescribed per day. Duration

was calculated from the number of minutes the nebulizer was used, divided by

the prescribed number of minutes (e.g., 20) required for these medications, then

multiplied by 100% to determine rate of adherence.

Statistical analyses. Multivariate analyses of variance (MANOVA) were

conducted to examine age differences in parental supervision for both nonmedi-

cal and medical daily activities. First, the sample was dichotomized into two age

groups: 10 to 13.9 years of age (preadolescents) and 14 years of age and older

(adolescents), based on developmental studies and research on pubertal delays

in adolescents with CF (Orenstein, Rosenstein, & Stern, 2000). Both sex and

pulmonary functioning were controlled in these analyses because more rapid

decline in pulmonary functioning has been observed for females after puberty

(Liou et al., 2001; Rosenfeld, Davis, FitzSimmons, Pepe, & Ramsey, 1997) and

pulmonary functioning naturally declines with age (Rosenbluth, Wilson, Ferkol,

& Schuster, 2004). Second, descriptive data on amount of parental supervision

was calculated by age, using the following groups: 10–11, 12, 13, 14, 15, 16–17

years. Due to the smaller sample size of 10- to 11-year-olds and 16- to 17-year-

olds, they were grouped together. Supervision time was calculated separately

for mothers and fathers. Finally, hierarchical linear regression analyses were

conducted to determine whether parental supervision predicted adherence to

nebulized medications, after controlling for age, patient sex, FEV1% predicted,

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SUPERVISION AND ADHERENCE IN ADOLESCENTS WITH CF 85

parent education, and marital status. Note that the sample size for these analyses

was smaller (n D 51) because only a subset of patients had been prescribed

nebulized medications.

RESULTS

Age Differences in Parental Supervision Across

Nonmedical and Medical Activities

Controlling for sex and pulmonary functioning, no significant differences were

found between preadolescents (<14 years old) and adolescents (�14 years old)

in amount of time spent in nonmedical activities, either with parents or alone

(Hotelling’s T D .02, F[2, 98] D 1.1, p D n.s). However, in a second analysis

of medical care activities, after controlling for sex and pulmonary functioning,

the overall MANOVA indicated significant differences between younger and

older adolescents (Hotelling’s T D .11, F[2, 98] D 5.3, p < .01). Post hoc

analyses revealed a trend for an effect of age and parental supervision, with

preadolescents spending more time with parents in medical activities (M D

32 minutes) than adolescents (M D 17.6 minutes; t(101) D 1.8, p D .07).

Furthermore, preadolescents spent significantly less time in medical activities

alone (59.2 minutes) than adolescents (83.3 minutes; t(101) D �2.8, p < .01).

Developmental Trends in Parental Supervision

Descriptive data regarding the percentage of time mothers and fathers spent

supervising medical activities by age are shown in Figure 1. Although no

significant differences were found, these data suggest a pattern in which parental

supervision of medical treatments decreases and adolescents begin to assume

more responsibility for managing their disease by age 15. At ages 16–17 years,

parents appear to reengage in supervision of treatments.

Predictors of Adolescent Adherence to Frequency and

Duration of Nebulized Medications

First, a hierarchical regression analysis was used to identify significant predictors

of adherence to the frequency of nebulized treatments (R2D .31, adjusted

R2D .20, F[2, 42] D 2.7, p < .05). Significant predictors included older age,

better FEV1% predicted, and amount of parental supervision (see Table 1).

Supervision by mothers and fathers was analyzed separately. Results indicated

that time spent with mothers, but not fathers, supervising treatments was a

significant predictor of better adherence (mothers [ˇ D :38; p < .0001] vs.

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86 MODI ET AL.

FIGURE 1 Percentage of time spent in medical care alone and with parental supervision.

TABLE 1

Hierarchical Regression Analysis Predicting Frequency of Electronically

Monitored Nebulized Medications

Step and Predictor Variables R2 �R2 ˇ

Step 1 .15

Adolescent age .27

Sex �.30

Parent education �.21

Marital status .04

FEV1 % predicted .28

Step 2 .31 .15�

Adolescent age .36��

Sex �.20

Parent education �.15

Marital status �.02

FEV1 % predicted .40��

Time spent with parents in medical treatment .35��

Time spent alone in medical treatment �.25

�p < :05, ��p < :01:

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SUPERVISION AND ADHERENCE IN ADOLESCENTS WITH CF 87

TABLE 2

Hierarchical Regression Analysis Predicting Duration of Electronically

Monitored Nebulized Medications

Step and Predictor Variables R2 �R2 ˇ

Step 1 .04

Adolescent age .07

Sex �.20

Parent education �.09

Marital status �.02

FEV1 % predicted .05

Step 2 .42 .38�

Adolescent age .22

Sex �.11

Parent education �.02

Marital status �.12

FEV1 % predicted .21

Time spent with parents in medical treatment .60�

Time spent alone in medical treatment �.22

�p < :001.

fathers [ˇ D �:06; p D n.s.]). Note that the interaction between age and parental

supervision was entered into the regression analysis, but was not significant.

Next, similar analyses were conducted to identify predictors of adherence to

the duration of nebulized treatments (R2D .42, adjusted R2

D .31, F[3, 41] D

3.7, p < .01). The only significant predictor was amount of parental supervision

of medical care (see Table 2). Analyses comparing mothers’ and fathers’ super-

vision indicated that, as presented above, supervision by mothers, but not fathers,

was highly predictive of better adherence (mothers [ˇ D :63; p < .0001] vs.

fathers [ˇ D �:04; p D n.s.]). The interaction of age and parental supervision

was not significant.

DISCUSSION

Results from this study indicated that parental supervision of CF medical treat-

ments declines from preadolescence to adolescence. This is consistent with

findings from the diabetes literature (Anderson et al., 1997; Ingersoll et al.,

1986). Prior studies have also shown that lack of parental supervision was

associated with worse health outcomes in adolescents with diabetes (Anderson

et al., 1997; Johnson et al., 1992; Wysocki et al., 1996). This raises an important

question about how parents and teens should negotiate the natural shifts toward

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88 MODI ET AL.

less supervision of adolescents’ activities and greater independence, with the

critical need to manage a serious and complex chronic illness.

Several strategies may potentially facilitate this transition. Parents may need

to reeducate the young adolescent on basic knowledge and understanding of the

disease and its treatments. Next, they may initially provide close supervision,

followed by a period of “fading”; decreasing time supervising as the adolescent

demonstrates greater responsibility. By the end of high school, parents may just

need to be present during some treatment times to provide support for the teen

and stay connected in terms of a positive relationship.

Surprisingly, our data also suggest that parental supervision decreased only

for medical activities but remained fairly consistent across ages for nonmedical

activities (e.g., recreation, work/school). Parents may experience burnout at this

point, having spent several hours each day since the child’s birth managing

daily treatments. This interpretation is bolstered by two studies of parental role

strain in families of young children with CF. These were parents of infants

and preschoolers who reported high levels of stress in their parenting roles,

significant symptoms of depression, and minimal time for recreation as a family

(Quittner et al., 1998; Quittner, Opipari, et al., 1992). These data, in combination

with the current results indicating differential effects for maternal and paternal

supervision, point to the need for greater participation in treatment by fathers.

Our results also indicate that there may be a critical period in which parental

supervision begins to decrease. Consistent with the diabetes literature, we found

a downward trend for parental supervision with increasing age, the implicit

assumption being that the adolescent is assuming greater responsibility for

completing his or her treatments. Our data suggest that this assumption is false.

By age 15, adolescents are completing nearly 90% of their daily treatments on

their own, at the cost of poorer adherence. Interestingly, this trend appears to

change at ages 16 and 17, when parents become reinvolved in their adolescents’

daily medical care. Perhaps parents become aware that the adolescent is not

taking sufficient responsibility.

Although our results supported the hypothesis that parental supervision, specif-

ically by mothers, is related to better adherence to nebulized medications, our

diary measure did not reveal the type of supervision that was provided. Parental

supervision could have taken many forms, including emotional and social sup-

port, help preparing medications, and reminders about which treatments need to

be done. Parental supervision in the current study was defined as the parents’

presence during various activities. Future studies should identify which types

of supervision are most helpful for which age group, with some consideration

of demographic and cultural differences (Quittner, Schechter, Rasouliyan, Pasta,

& Wagener, 2006). Preadolescents may require more physical assistance with

treatments than older adolescents, whereas older teens, who are increasing their

social activities, may need more reminders. For example, for adolescents with

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SUPERVISION AND ADHERENCE IN ADOLESCENTS WITH CF 89

diabetes, mothers’ involvement in concrete tasks (e.g., assistance with injections

and blood glucose testing) contributed to better diabetes adherence in younger

vs. older girls (Bobrow, AvRuskin, & Siller, 1985). Finally, given the key role

that parent-adolescent conflict appears to play in treatment adherence (Anderson

et al., 1990; Quittner et al., 2004), it will be important to assess the quality of

the parent-teen relationship in future studies examining parental supervision in

relation to adherence.

Although this is one of the first studies to examine parental supervision in

families with an adolescent with CF and represents a first step, it has sev-

eral limitations. First, the study was cross-sectional and therefore could not

determine whether parental supervision increases adherence or adolescents with

better adherence encourage their parents to be more involved. These questions

will be addressed in the larger, longitudinal dataset that is currently being

analyzed. Second, adolescents with CF must adhere to a complex treatment

regimen that includes several different types of therapies. Our study focused

on nebulized medications, an important component of the treatment regimen,

in which objective electronic monitoring data were available. Future studies

should focus on examining the relations between parental supervision and other

treatments, including airway clearance, diet, and oral medications. Third, our

analyses were primarily based on chronological age, which may be a gross

reflection of cognitive maturity. Future studies should examine age, cognitive

maturity (measured by education level or intelligence), and parental supervision

to determine whether cognitive maturity may be a more precise indicator of the

optimal time for adolescents to assume greater responsibility for disease manage-

ment. This information would be extremely valuable for the healthcare team and

family. Another limitation might lie in our measurement of parental supervision

from the adolescent’s perspective. It is possible that parents’ perceptions might

have differed from their teens, in part because they may define these activities

differently. For example, calling the pharmacy to check on prescriptions may be

counted by parents as supervision of medical care. Future studies could examine

the concordance between adolescent and parent agreement on supervision using

real-time measures. Finally, although only 3 days of DPD data were collected

to assess parental supervision, this measurement approach builds upon existing

literature and provided more specific information compared to global ratings of

parental supervision.

Implications for Practice

Parents and adolescents appear to need anticipatory guidance on how and when

to transition responsibility for daily treatment regimens. This may include teach-

ing parents how to reward adherence behaviors when adolescents engage in

them independently and how families can better share the responsibilities for

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90 MODI ET AL.

caregiving in the context of CF care (Quittner et al., 1998). Currently, little time

is devoted to these issues during routine clinic visits, which occur quarterly. This

study and others strongly suggest that family interventions are most effective

in improving adherence for adolescents with chronic illnesses. Empirically sup-

ported interventions, such as behavioral family systems therapy (Quittner et al.,

2004; Robin & Foster, 1989; Wysocki et al., 2006, 2000), have demonstrated

initial benefits for both improved adherence and reduced parent-teen conflict.

However, to date, they have not been integrated into the health care systems

in which children and adolescents with chronic illnesses are treated. Although

challenging, this next step may prove to be the key to better long-term health

outcomes for these populations.

ACKNOWLEDGMENT

This study was funded by grants from the National Institutes of Health (RO1

#HL47064) and Cystic Fibrosis Foundation to the senior author. We would like

to extend our deepest appreciation to the adolescents with cystic fibrosis and

their families who participated in this study, as well as members of the research

team who made this study possible.

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