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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 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: avani.modi@cchmc.org
78
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
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],
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
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.
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
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,
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.
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:
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
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
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
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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