AIDS PATIENT CARE and STDs
Volume 22, Number 8, 2008
© Mary Ann Liebert, Inc.
Family Experiences with Pediatric Antiretroviral Therapy:
Responsibilities, Barriers, and Strategies
for Remembering Medications
Stephanie L. Marhefka, Ph.D.,1Linda J. Koenig, Ph.D.,2Susannah Allison, Ph.D.,3
Pamela Bachanas, Ph.D.,4Marc Bulterys, M.D., Ph.D.,2Linda Bettica, R.N.,5Vicki J. Tepper, Ph.D.,3
and Elaine J. Abrams, M.D.6
This study examines the relationship between adherence to pediatric HIV regimens and three family experi-
ence factors: (1) regimen responsibility; (2) barriers to adherence; and (3) strategies for remembering to give
medications. Caregivers of 127 children ages 2–15 years in the PACTS-HOPE multisite study were interviewed.
Seventy-six percent of caregivers reported that their children were adherent (taking ? 90% of prescribed doses
within the prior 6 months). Most caregivers reported taking primary responsibility for medication-related ac-
tivities (72%–95% across activities); caregivers with primary responsibility for calling to obtain refills (95%) were
more likely to have adherent children. More than half of caregivers reported experiencing one or more adher-
ence barriers (59%). Caregivers who reported more barriers were also more likely to report having non-adher-
ent children. Individual barriers associated with nonadherence included forgetting, changes in routine, being
too busy, and child refusal. Most reported using one or more memory strategies (86%). Strategy use was not
associated with adherence. Using more strategies was associated with a greater likelihood of reporting that for-
getting was a barrier. For some families with adherence-related organizational or motivational difficulties, us-
ing numerous memory strategies may be insufficient for mastering adherence. More intensive interventions,
such as home-based nurse-administered dosing, may be necessary.
lenges, the widespread availability of antiretroviral therapy
(ART) in the United States and other high-resource settings
has led to decreased mortality among perinatally HIV-in-
fected children, and many are surviving into adolescence and
adulthood.2With recent initiatives to increase the availabil-
ity of pediatric care and treatment in lower-resource set-
tings,3many more children with HIV are expected to sur-
vive and begin life-long therapy with ART. Research that
enhances our understanding of ART adherence will be crit-
STIMATES SUGGEST that worldwide, more than 2.5 million
children are living with HIV infection.1Despite chal-
Research has generally failed to examine the specific ways
in which families manage children’s ART regimens and how
those family factors relate statistically to adherence. Rather,
studies have focused on individual characteristics of a child
or caregiver that may indirectly impact adherence, such as
depression or substance use,4,5or interpersonal factors, such
as a caregiver’s perceived social support.6,7While such fac-
tors may be important determinants of adherence, they pro-
vide little information about families’ roles and processes
that may affect adherence. Understanding families’ experi-
ences—especially who is responsible for regimen-related
tasks, what keeps them from accomplishing those tasks, and
what helps them succeed—may be critical for developing ef-
fective adherence-promoting interventions. For example, it
1HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute and Columbia University of the City of New York,
New York, New York.
2Division of HIV/AIDS Prevention, Centers for Disease Control and Prevention, Atlanta, Georgia.
3Department of Pediatrics, University of Maryland School of Medicine, Baltimore, Maryland.
4Department of Pediatrics, Emory University School of Medicine, Atlanta, Georgia.
5Department of Pediatrics, University of Medicine and Dentistry of New Jersey, Piscataway, New Jersey.
6Department of Pediatrics, Harlem Hospital Center and College of Physicians and Surgeons, New York, New York.
may be important to know whether adult caregivers or chil-
dren are responsible for tasks related to adherence (e.g., re-
filling prescriptions, remembering to take the medicine, etc.)
so that we can both understand how differences in regimen
responsibility affect adherence and know to whom inter-
ventions should be directed. Research among adolescents
with a variety of chronic illnesses suggests that children as-
sume increasing levels of responsibility for disease manage-
ment as they mature,8–11and at least one study suggests that
caregivers may assume less responsibility as children be-
come older.12At the same time, adherence problems increase
as children get older,13–15especially during adolescence.15–18
Thus, children and adolescents may be given responsibility
for regimen-related tasks when they may be unlikely to com-
plete them successfully. Studies have reported on some as-
pects of responsibility for medication-related behaviors
within families of children on ART.11,19,20In a study by Boni
and colleagues,1986% of 25 caregivers of children on ART
reported that they “watched children while they took their
therapy.” No additional information about regimen respon-
sibility was provided.19Wrubel and colleagues,20in a qual-
itative interview study, reported on experiences of 71 moth-
ers of children (ages 1–18 years) on ART; while 89% of
mothers reported taking responsibility for their children’s
adherence on at least one occasion, 21% indicated that they
shared the responsibility with their children at least part of
the time, and nearly 25% of mothers indicated a desire for
their children to be responsible for ART adherence. Only 2
mothers recognized that their adolescents may not be able
to take their medications consistently without maternal re-
Only one known study has directly assessed the relation-
ship between regimen responsibility and ART adherence.
Martin and colleagues11studied ART adherence among 24
children ages 8 to 18 years and used both child and caregiver
report to assess the extent to which the caregiver, child, or
both assumed responsibility for regimen-related tasks. From
their report, it was not clear what percentage of children and
caregivers were solely responsible for regimen-related tasks.
Neither child nor caregiver reports of regimen responsibil-
ity were directly associated with adherence, although greater
caregiver–child discrepancies about regimen responsibility
were associated with worse adherence at the second time-
point. Also, children’s regimen responsibility increased sig-
nificantly with child age.
Multiple regimen-related tasks must be completed in or-
der to achieve adherence, including: (1) remembering that it
is time to take the medications; (2) opening the bottles and
retrieving the medication; (3) swallowing the medication; (4)
noticing when refills are needed; and (5) calling to arrange
for refills. It is possible that responsibility for some of these
tasks could be allocated to children or youth without detri-
mental effects on adherence. For example, it may be that ad-
herence could be achieved easily if a child is responsible for
opening the bottles and retrieving the medication, as long as
an adult ensures that the medications are swallowed. The
importance of children versus caregivers assuming respon-
sibility for these specific tasks has not been well studied.
As suggested by the Health Belief Model,21,22identifying
barriers to adherence may also help to inform intervention
efforts, especially to the extent that barriers are associated
with adherence outcomes. Studies have examined families’
barriers to pediatric ART adherence regimens,19,20,23–34but
only three small studies have examined the statistical asso-
ciation between reported barriers and adherence, and those
have produced conflicting results. When a checklist was used
to assess barriers to adherence, more barriers were associ-
ated with lower levels of caregiver-reported adherence29,30;
yet when 10 barriers were rated on a Likert-type scale, the
mean barrier frequency score was not associated with ad-
herence measured by caregiver report, pill counts, or elec-
tronic monitoring.33Studies with larger sample sizes are
needed to clarify the relationship between barrier reporting
and adherence, as well as to identify which specific barriers
statistically account for adherence difficulties.
Once we identify the critical barriers, it is then important
to identify strategies for overcoming those barriers. Under-
standing which strategies help families successfully manage
ART regimens is important for helping other families im-
prove adherence behavior. Some such strategies have been
enumerated, including: using reminder devices (e.g., calen-
dars, timers, beepers), using physical reminders such as
putting bottles in an obvious location or posting reminder
notes, asking other family members to help with reminding,
incorporating medication-taking into daily routines, and im-
proving or masking unpleasant tastes.24,35,36
Studies have generally not supported the effectiveness of
several commonly recommended strategies for improving
adherence among adults. A recent meta-analytic review
showed that three interventions using electronic reminder
devices (i.e., beepers or pagers) failed to increase the likeli-
hood of participants obtaining ?95% adherence relative to
controls.37One of those studies found more one-log de-
creases in plasma HIV RNA loads among intervention ver-
sus control participants, suggesting that electronic reminders
may have some adherence-enhancing effects.38Another con-
trolled study found improvements with the use of an online
pager system, but adherence was still low in the interven-
tion group (64%).39Other interventions have included teach-
ing patients to use cues as reminder of medication times. One
controlled study found that using electronic medication
monitoring feedback and having participants identify cues
that would help them remember to take their ART medica-
tions was not effective in improving adherence or plasma
HIV RNA loads unless it was paired with a monetary re-
ward.40Another study tested a single-session and follow-up
phone call “Life-Steps” intervention that included assistance
identifying cues for medication-taking and guided imagery
review of medication-taking in response to identified cues.
Compared to participants who used daily dairies to monitor
their adherence, Life Steps participants showed better ad-
herence outcomes after two weeks but no difference at 12-
Few studies have examined the use of memory strategies
for increasing adherence among children on ART. A recent
cross-sectional study of children and adolescents found in-
creased odds of adherence among those who used a buddy
system to help them remember to take medications, although
they found no greater likelihood of adherence among those
who tied medication-taking into other activities or used pill
boxes to remember doses versus those who did not.15An in-
tervention pilot study with youth ages 15–22 provided par-
ticipants with two reminder devices: a beeper that vibrates
and can hold pills, and an alarm watch; provision of these
MARHEFKA ET AL.638
devices did not significantly improve adherence or reduce
the problem of youth forgetting doses, although youth be-
lieved that the multiple alarm watch was helpful.41These
studies provide little support for using cue-based strategies
to improve adherence among children and adolescents with
HIV. Nevertheless, the literature in this area is too sparse to
be conclusive. While the adult literature suggests that mem-
ory strategies are of limited effectiveness for improving ad-
herence to ART, it is important to examine the value of cue-
based strategies for facilitating adherence among children,
as pediatric clinicians continue to recommend these strate-
gies with very limited pediatric data regarding how the use
of such strategies impacts adherence.
Using data from the Pediatric AIDS Collaborative Trans-
mission HIV Follow-up of Exposed Children (PACTS-
HOPE) study, we aim to further understanding of adherence
to pediatric ART by examining three family experience fac-
tors and their relationship to adherence. Those family expe-
rience factors include: (1) division of regimen responsibility;
(2) barriers to adherence; and (3) strategies for remembering
medication. Briefly we describe medication regimens and ad-
herence rates for the sample. Based on the extant literature,
we test hypotheses that caregivers who report sole respon-
sibility for each regimen-related tasks have younger children
than those who report caregiver–child shared responsibility,
and that adherence is more likely when caregivers (versus
children) assume responsibility for each medication-related
task, report fewer barriers, report more memory strategies
overall, and report at least one (versus no) cue-based strat-
egy (defined as a visual, auditory, or behavioral cue that
serves as a reminder of dosing times).
From October 1985 until September 1999, the U.S. Centers
for Disease Control and Prevention (CDC) funded the Peri-
natal AIDS Collaborative Transmission Study (PACTS),
which enrolled HIV-infected pregnant and peripartum
women and their newborns. The primary purpose of PACTS
was to examine the rate of and risk factors for perinatal HIV
transmission and early childhood survival in four U.S.
HIV/AIDS epicenters (Atlanta, Georgia; Baltimore, Mary-
land; Newark, New Jersey; New York, New York).42–44From
March 2001 to March 2003, children formerly enrolled in
PACTS were recruited into the PACTS HIV Follow-up of
Perinatally Exposed Children (PACTS-HOPE) study, which
was designed to examine markers of disease progression,
medication adherence, and psychosocial adjustment over
time. Procedures have been previously described.45Included
in the source population were all living HIV-infected chil-
dren not lost to follow-up during PACTS (n ? 196) plus 8
children who had been lost to follow-up and were subse-
quently found. In total there were 204 potential participants.
Of these 204, 7 refused to participate, 12 had relocated, and
3 were ineligible because in some states children in foster
care were not allowed to participate. Altogether, 182 chil-
dren were enrolled.
For the present analyses, children had to be prescribed
ART at the time of enrollment and had to have a caregiver-
completed interview. Eighteen children were not receiving
ART at the time of enrollment. Thirty-seven others did not
have a fully completed caregiver adherence interview. Six of
those were missing the adherence interview and are pre-
sumed to have not been prescribed ART, although because
their baseline medical record review was missing this could
not be confirmed. Two participants had begun or changed
their medication during the time period assessed, and thus
did not have an adherence interview. Six children were pre-
scribed ART, yet their adherence interview was missing. Ad-
herence interviews were available for the remaining 23 par-
ticipants but data were missing for the primary outcome of
this investigation (i.e., adherence, based on reports of the per-
cent of doses taken in the past 6 months). Ultimately, 127
children were included in the present analyses. Children
who were excluded from these analyses did not differ sig-
nificantly from those included in terms of age, gender, race,
Participants. Child and caregiver demographics were ob-
tained via caregiver report. Children ranged from 2 to 15
years of age (M ? 7.8, standard deviation [SD] ? 2.7). Chil-
dren were 61% female and most were African American (82%
versus 17% Caucasian; 1% marked “other”; 1% refused to an-
swer) and non-Hispanic ethnicity (84%). Caregivers ranged
in age from 22 to 73 years (M ? 45, SD ? 11.7); most were fe-
male (88%) and of African American race (80% vs. 9% Cau-
casian; 1% Alaskan; 1% marked “other”; and 9% refused to
answer) and non-Hispanic ethnicity (79%). Caregivers’ rela-
tionship to the child varied (42% biologic parent; 21% adop-
tive; 7% foster; 27% other kin; 2% other; 2% missing).
Institutional Review Board (IRB) approval was obtained
from the CDC and all study sites. Following receipt of writ-
ten informed consent from caregivers or legal guardians, and
assent from children who were 7 years of age or older, care-
givers were interviewed by research assistants not directly
involved in their care. Research assistants recorded care-
givers’ responses to the interview questions. Data were also
derived from medical chart abstraction, including children’s
HIV viral load drawn up to 90 days before or after the ad-
Self-report measures. Adherence was assessed during a
structured face-to-face interview designed for the present
study. Previous research among adults supports the valid-
ity of a global, 6-month recall of ART adherence, based on a
significant relationship with viral load.46In this study, care-
givers were asked to recall the proportion of doses the child
took over the previous 6 months, and select one item from
a 5-point Likert-type scale. Options were: “almost all (or at
least 9 out of 10);” “most (or at least 8 out of 10);” “more than
half (or more than 5 out of 10);” “less than half (or less than
4 out of 10);” and “none.” Due to extreme skewness and
small cell size in the latter three categories, adherence was
dichotomized to reflect those who were 90% or more ad-
herent (henceforth “Adherent”) versus those who were less
adherent (?90% adherent; henceforth “Nonadherent”). As
previously reported from this dataset, significantly lower
log10viral loads were found among children categorized as
Adherent on this measure (odds ratio [OR] ? 0.71, 95% con-
fidence interval [CI]: 0.51, 0.97).47
FAMILY EXPERIENCES WITH ANTIRETROVIRAL THERAPY639
Barriers to adherence were assessed with the following
question, based on the Pediatric AIDS Clinical Trials Group
Adherence Module 2,48a modification of the Adult AIDS
Clinical Trials Group Adherence tool.49“When a dose of
your child’s medication is missed, what are the reasons for
the missed dose?” Nine barriers were listed (e.g., “forgot to
give”; “change in daily routine”; “afraid of side effects”; etc.),
as well as the option of “never missed a dose”; caregivers
were instructed to identify all applicable responses.
Regimen responsibility was assessed with a modified version
of Anderson and colleague’s regimen.50Diabetes Regimen Re-
sponsibility Inventory. The authors revised items to reflect tasks
required for adherence to ART. For example, one item on the
diabetes version, “Remembering to take morning or evening in-
jection” was revised to, “Remembering to take medications on
time.” Caregivers were given the list of regimen-related tasks
and asked to indicate whether an adult, the child, or both an
adult and child are responsible for each task. Most responses in-
dicated that an adult was responsible; therefore, responses were
scored as “yes” or “no” based on whether an adult assumed
sole responsibility or shared responsibility with the child.
Strategies for medication-taking were assessed with a
question designed by the study team. Based on research sug-
gesting that families use a variety of strategies to enhance
medication administration32; caregivers were asked to list
“the three most helpful things that [they] use or do to help
[them] to remember to take/give medication.” Caregivers
provided up to three strategies. Responses were examined
for content themes, and a coding scheme was developed by
the first author and a graduate assistant, who then coded
each response by hand51; coding agreement was high (? ?
0.86, p ? 0.001). Discrepancies were resolved following code
clarification. Responses were categorized as cue-based
strategies if they involved pairing medication-taking with
other daily activities or routines, or using specific reminder
devices (e.g., pill boxes, calendars, beepers, other visual
cues). A variable was created to reflect the number of unique
strategies for medication-taking reported by each caregiver.
Statistical analyses. Descriptive statistics were generated
to describe regimen characteristics, the proportion of chil-
dren categorized as Adherent versus Nonadherent, virologic
findings, and the three family experience factors (regimen
responsibility, barriers, and strategies). We also explored the
relationship between adherence and child demographics, in-
cluding age, gender, race, and ethnicity to provide contex-
tual information for interpreting study findings. Next, Stu-
dent’s t tests were conducted to test for age differences
between children of caregivers who reported sole responsi-
bility (versus shared responsibility with the child) for regi-
men tasks (Hypothesis 1). Logistic regression analyses were
conducted to test the hypothesis that caregivers are more
likely to be categorized as Adherent (versus Nonadherent)
when they report sole responsibility (Hypothesis 2), fewer
barriers (Hypothesis 3), more memory strategies (Hypothe-
sis 4), and at least one cue-based strategy (Hypothesis 5).
Medication regimens.As previously reported,47many chil-
dren (83%) were prescribed three or more different anti-
retroviral medications (range ? 1–6). The most frequent
combination included both liquid and pill formulations
(37.6%); other common regimens included liquids only
(28.9%) and pills only (26.8%). Most children (94.0%) were
expected to take ART at least two times per day.
Adherence rates. Seventy-six percent of caregivers indi-
cated that “almost all (at least 90%)” of their child’s med-
ication doses were taken in the previous 6 months. Girls were
less likely to be categorized as Adherent than boys (OR ?
0.34, 95% CI: 0.13, 0.90). Adherence was not significantly as-
sociated with child age, Hispanic ethnicity, or African Amer-
Virologic findings. Viral RNA tests were available for 83%
of the sample and results ranged from less than 50 to 446,000
cells per milliliter. The median viral RNA was 1453 cells per
milliliter. Sixty-five participants (62% of those with virologic
data) had viral RNA in the undetectable range, defined as
less than 400 cells per milliliter.
Regimen responsibility. Table 1 shows the proportion of
caregivers reporting sole regimen responsibility for each
task. Over half of all caregivers (65%) reported taking sole
responsibility for all tasks related to their child’s medication
Barriers to adherence. Table 2 shows the proportion of
caregivers selecting each barrier to adherence. Among 127
caregivers, 75 (59.1%) selected at least 1 of 9 listed reasons
that their child missed medications, 27 (21.3%) reported an-
other reason that was not listed, and 31 (24.4%) marked that
they, “never missed a dose.” “Change in daily routine” was
the barrier most commonly selected (28.3%), followed by
“forgot to give” (16.5%). Caregivers who indicated “another
reason” for missing doses were asked to state that reason;
those were examined qualitatively by the primary author. Of
those responses, 4 indicated that doses were never or rarely
missed, and thus did not reflect actual barriers; 12 pertained
to being away from home during the dosing time; 2 responses
reflected disorganization and difficulty fitting the medica-
tion-taking into a busy day; 8 responses were idiosyncratic;
and 1 participant did not provide the other reason.
Strategies for remembering medication. One hundred
twenty-six caregivers provided 201 responses to a question
about strategies (one had missing data; Table 3). Most
(85.8%) reported using at least one strategy for remember-
ing medication. Pairing medication-taking with another ac-
tivity, such as eating meals, was the most commonly em-
ployed strategy (n ? 77), followed by keeping a daily
schedule or routine that involves taking the medication at
the same time every day (n ? 45). Other common reports
(n ? 25) included using pill boxes, calendars, beepers, or ad-
ditional cues as reminders.
Hypothesis 1: Caregivers who report sole responsibility for
each regimen-related task have younger children than those
who report caregiver-child shared responsibility. For each
task, children’s mean age differed significantly based on
MARHEFKA ET AL.640
whether their caregiver reported sole or shared responsibil-
ity; caregivers who reported sole responsibility had children
who were younger (test statistics shown in Table 1).
Hypothesis 2: Caregivers who assume sole responsibility
(versus shared responsibility with the child) for each med-
ication-related task are more likely to have Adherent (versus
Nonadherent) children. Results provide partial support for
this hypothesis. Caregivers who reported sole responsibility
for remembering to call the doctor for pharmacy refills (n ?
121) were more likely to have children characterized as ad-
herent (test statistics shown in Table 4). No other responsi-
bility item was significantly associated with adherence. We
explored the possibility that caregivers who reported shared
responsibility for remembering to call for pharmacy refills
also reported shared responsibility for each of the other four
adherence-related tasks. Of those six participants who re-
ported shared responsibility for remembering to call for re-
fills, all reported shared responsibility for opening the con-
tainers and taking out the medications; five reported shared
responsibility for remembering to take medications on time
and for assuring that medications have been swallowed; and
three reported shared responsibility for noticing that med-
ications need to be refilled.
FAMILY EXPERIENCES WITH ANTIRETROVIRAL THERAPY641
TABLE 1.AGE DIFFERENCES IN FAMILY RESPONSIBILITY FOR REGIMEN-RELATED TASKS: PERINATAL AIDS COLLABORATIVE
TRANSMISSION-HIV FOLLOW-UP OF PERINATALLY EXPOSED CHILDREN (PACTS-HOPE) STUDY, 2001–2004
age in years
n (%) value
Remembering to take medications on time
Caregiver solely responsible
Caregiver and child both responsible
Opening the containers and taking out the medications
Caregiver solely responsible
Caregiver and child both responsible
Assuring that medications have been taken (swallowed)
Caregiver solely responsible
Caregiver and child both responsible
Noticing when medicines need to be refilled
Caregiver solely responsible
Caregiver and child both responsible
Remembering to call the doctor or pharmacy
Caregiver solely responsible
Caregiver and child both responsible
TRANSMISSION-HIV FOLLOW-UP OF PERINATALLY EXPOSED CHILDREN (PACTS-HOPE) STUDY, 2001–2004
ODDS OF CHILD ADHERENCE IF BARRIERS WERE REPORTED: PERINATAL AIDS COLLABORATIVE
is a barrier
Odds ratio of child
adherence if barrier
Any barrier (not including “Other”)
Forgot to give
Change in daily routine
Can’t get drug (drug store doesn’t supply)
Busy with other things
Afraid of side effects
Ran out of medicine
Couldn’t give at school or other situation
because of lack of privacy
Another caregiver missed the dose
Never missed a dose
0.20 (0.07, 0.57)**
0.35 (0.13, 0.93)*
0.25 (0.10, 0.58)**
0.23 (0.07, 0.69)**
0.06 (0.01, 0.49)**
0.54 (0.17, 1.75)
0.15 (0.01, 1.75)
0.97 (0.10, 9.66)
6.28 (1.40, 28.06)*
aPercentages based on n ? 127.
bNot calculated due to insufficient sample size in a given cell.
cNot calculated because some responses to this item did not reflect actual barriers (e.g., “does not miss”).
dCI, confidence interval.
*p ? 0.05, **p ? 0.01, ***p ? 0.001.
Hypothesis 3: Caregivers who report fewer barriers (in-
cluding barriers listed under “another reason”; versus those
who report more barriers) are more likely to have Adherent
(versus Nonadherent) children. This hypothesis was con-
firmed (OR ? 0.36, 95% CI: 0.20, 0.64), and is consistent with
the finding that most caregivers who did not identify a bar-
rier (89%) or who identified only one barrier (78%) also re-
ported that their child took “almost all” of their doses. As
shown in Table 2, several barriers were significantly associ-
ated with Nonadherent categorization: “forgot to give,”
“change in daily routine,” “too busy,” and “child refused.”
Conversely, caregiver reports that the child “never missed a
dose” were associated with Adherent categorization.
Hypothesis 4: Caregivers who report more (versus less)
memory strategies are more likely to have Adherent (versus
Nonadherent) children. This hypothesis was not supported,
as the number of memory strategies was not significantly as-
sociated with adherence (OR: 0.74; 95% CI: 0.38, 1.46). It may
be, however, that using memory strategies protects families
against experiencing forgetting as a barrier to adherence.
When we conducted a post hoc analysis to explore this, we
found the opposite: those who used more memory strategies
were more likely to have reported forgetting as a barrier than
those who used fewer strategies (OR: 3.67; 95% CI: 1.54, 8.75).
Hypothesis 5: Caregivers who report at least one (versus
no) cue-based strategy are more likely to have Adherent
(versus Nonadherent) children. This hypothesis was not sup-
ported, as reports of using cue-based strategies were not sig-
nificantly associated with adherence (OR: 0.70; 95% CI: 0.31,
This paper examined family experiences with pediatric
ART regimens among participants enrolled in the PACTS-
HOPE study, focusing on responsibility for medication-re-
lated activities, barriers, and strategies for remembering
medication administration. Caregivers who reported taking
primary responsibility for calling to refill ART prescriptions
(versus giving the responsibility to or sharing the responsi-
MARHEFKA ET AL.642
TABLE 3.CAREGIVER-REPORTED STRATEGIES FOR REMEMBERING MEDICATION: PERINATAL AIDS COLLABORATIVE TRANSMISSION-
HIV FOLLOW-UP OF PERINATALLY EXPOSED CHILDREN (PACTS-HOPE) STUDY, 2001–2004
Strategy categorySample quotes
Pair medication-taking with another activity
She takes it just before school and just after dinner.
She remembers the time. It is the same time as food.
I just do it at the same time every day.
8 AM and 8 PM every day.
I keep medication out in the open on the kitchen
All his medications are set up in a pill box.
I take medicine, too, so we take them together.
She also reminds me.
The child won’t let me forget.
I use measuring tubes.
I just remember.
I just know it’s got to be done.
Keep a daily schedule or routine that involves taking
medication at the same time every day
Use pill boxes, calendars, beepers, or additional cues
Child and caregiver take medication at the same time
Child or other person reminds caregiver that it is time
for the child to take medication
Other response, does not easily fit into categories.
Responded, but did not identify a strategy
Said they used no strategies3 (2%)
Note: Percentage based on 126 participants who provided a response.
TABLE 4.ODDS OF ADHERENCE WHEN CAREGIVERS REPORT SOLE REGIMEN RESPONSIBILITY: PERINATAL AIDS COLLABORATIVE
TRANSMISSION-HIV FOLLOW-UP OF PERINATALLY EXPOSED CHILDREN (PACTS-HOPE) STUDY, 2001–2004
Adherence odds ratio
Remembering to take medications on time (n ? 126)
Opening the containers and taking out the medications (n ? 127)
Assuring that medicataions have been taken (swallowed) (n ? 126)
Noticing when medicines need to be refilled (n ? 127)
Remembering to call the doctor or pharmacy for refills (n ? 127)
1.47 (0.57, 3.82)
1.28 (0.53, 3.08)
0.67 (0.21, 2.15)
1.36 (0.33, 5.62)
6.93 (1.21, 40.09)b
avs. shared responsibility with the child.
bp ? 0.05.
bility with the child) were more likely to have adherent chil-
dren. This finding differs from that of a previous study,11
which found no relationship between adherence and the sum
of scores for nine responsibility items. Ours is an important
finding, because it suggests that to achieve adherence care-
givers may need to retain responsibility for some regimen
tasks, although they may be able to share or allocate re-
sponsibility for other tasks without compromising adher-
ence. Adherence may improve if clinicians help caregivers
and children identify which tasks can be safely allocated to
the child and which tasks are better left to caregivers. How-
ever, some caution is warranted in interpreting this finding,
as only six caregivers in the study reported sharing respon-
sibility with the child for making refill requests.
Confirming our hypotheses as well as a previous finding
in the pediatric ART literature,11children who shared re-
sponsibility with their caregivers were older than children
who did not share responsibility for each of five regimen
tasks. Caregivers often allow children to assume increasing
responsibility for medication adherence as they become
older and show signs of maturity,8–11which for some may
be an appropriate means of preparing children for self-care
during adulthood. Children and adolescents may appreciate
the opportunity to control whether or not and when they get
their medications, leaving them with less anger and greater
regimen-specific self-efficacy,52while caregivers may be re-
lieved to relinquish medication responsibilities.53Unfortu-
nately, across chronic conditions, data consistently show that
for many, adolescence—the time when caregivers are most
likely to grant their children greater responsibility—is a time
of poor adherence to medical regimens.15–18Thus, it may be
important for clinicians to offer caregivers anticipatory guid-
ance that stresses the importance of supervising and moni-
toring their child’s completion of regimen-related tasks,11,54
even when they allocate primary responsibility for medica-
tion-taking to their child or adolescent.
Older age was not significantly associated with nonad-
herence in this study. Other studies in the pediatric HIV lit-
erature have failed to find a direct relationship between age
and adherence30,32,33,55,56or have found that caregiver re-
ports of adherence increase with child age.26Like the pres-
ent study, most such studies have included primarily chil-
dren under age 13 years30,32,55,56at least partially excluding
adolescents, who may have the greatest difficulty adhering.
Therefore, the failure to find an age effect may be due to
truncation of the sample. Moreover, the relationship between
age and adherence is likely mediated by other factors, in-
cluding regimen responsibility, in which case identifying
and changing those mediators may be the most pertinent ob-
Consistent with findings of two previous studies, care-
givers who reported fewer barriers to adherence were more
likely to have adherent children.29,30Several individual bar-
riers were significantly associated with nonadherence, in-
cluding three barriers that may reflect disorganization (for-
got, busy with other things, and change in daily routine),
and one barrier associated with parent–child dynamics (child
refused). As they are the most commonly reported barriers
in this sample, determining whether or not families experi-
ence these barriers may be particularly important for iden-
tifying adherence problems and creating a dialogue with
families about their medication-related experiences.
Once adherence problems are identified, providers may
recommend commonly used strategies for remembering
medication. Our findings suggest that this approach may not
always be effective. Neither using more memory strategies
overall nor using at least one (versus no) cue-based strategy
was significantly associated with adherence. Although
strategies such as tying medication-taking into daily routines
and using reminder devices may assist some families with
adherence, using such strategies is insufficient for some fam-
ilies to achieve adherence.15,40,41,57In fact, our results show
that caregivers who used more strategies (versus less) for re-
membering medications were more likely to report a prob-
lem with forgetting doses. Similarly, Kalichman and col-
leagues58found that some adults on ART who used pill
boxes also used other memory strategies and were more
likely than non-pillbox users to report missing medications
due to forgetting. It seems unlikely that using memory strate-
gies contributes to problems of forgetting; rather, the prob-
lem of forgetting may trigger the use of multiple strategies
to address adherence problems. Families who miss doses due
to forgetting may try multiple strategies for remembering
medication dose times.
Families who struggle with forgetting, multiple demands,
or changes in their routine may have difficulties with orga-
nization in general. A beeper or other reminder device is only
helpful if, upon receiving the reminder, the child takes the
medication. The reminder device will be ineffective if the re-
minder is given but the child does not get the medicine. For
example, a child may not get the medicine after a reminder
due to a supply problem (e.g., they ran out of medication)
or a proximity problem (e.g., they did not take the reminder
device or the medication along when they left the house).
Families who experience such situations may benefit from
assistance in organizing their lives so that they have a dose
of medication available at all times. In the case of proximity
problems, families may also benefit from learning how to set
their reminder devices to alert them later, when they are
likely to be at home.
Stigma—anticipated or experienced— is a potential bar-
rier to the success of memory strategies for promoting ad-
herence. It is uncommon for families to disclose a child’s HIV
status to most people outside of the immediate family; thus,
even when families have effective strategies for remember-
ing doses, children may miss doses due to concerns that oth-
ers will inadvertently learn about the child’s HIV status.28,53
Yet stigma does not explain the lack of relationship between
memory strategies and adherence in this study, given that
only 2% of caregivers reported that nonprivacy was a bar-
Untested in this study is the hypothesis that motivational
barriers may keep some children from receiving the med-
ication in response to a reminder. The child or caregiver
might turn off a medication alarm with some vague inten-
tion of taking or administering the medication in the ensu-
ing minutes or hours, and then “forget” to take or give the
medication.28“Forgetting” may be a proxy for psychologi-
cal processes such as avoidance and denial.59Depression5,60
and posttraumatic stress related to the HIV diagnosis,61other
mental health problems,56and limited adherence-specific or
global social support56may fuel this avoidance or otherwise
make dose administration difficult if not impossible. Surely
most caregivers want to their child to get this critical med-
FAMILY EXPERIENCES WITH ANTIRETROVIRAL THERAPY643
ication, although some caregivers may avoid dosing either:
(1) because the medication reminds them of HIV—a life-
threatening, stigmatized chronic illness that burdens their
family, and in some cases, which they passed to their child53;
(2) out of compassion for their child’s reluctance to take the
medicine53or (3) to avoid stressful caregiver–child conflicts
around medication-taking.28,53Studies have examined atti-
tudes and beliefs related to ART medication62–64(see Fisher
et al.65for a brief review), but these psychological barriers
to adherence have not been well explored.
Research is needed to determine families’ goals or behav-
ioral intentions for medication-taking and how they relate to
adherence.66Although health care providers often have
near-perfect adherence as a goal, some families may be con-
tent with the child getting their medication most of the time
as long as their child appears healthy. Bauman67distin-
guishes between types of nonadherers: volitional and inad-
vertent. Volitional non-adherers consciously choose to not
follow a regimen. Inadvertent nonadherers make a decision
to follow a medical regimen but fail to do so; they may fall
into one of three subtypes: (1) those who are nonadherent
because they misunderstand the regimen; (2) those who want
to adhere but face barriers; and (3) those who miss doses at
times, but feel they are adhering sufficiently. In a study of
young women with HIV, Kalichman and colleagues68found
that intentions to adhere were significantly associated with
adherence; similar work is needed to better understand the
role of intentions in adherence to pediatric regimens. Such
research should attempt to reduce social desirability bias, be-
cause women may be concerned about the consequences of
reporting socially undesirable intentions for adhering to
their child’s regimen.69
This study has multiple strengths, including a large sam-
ple relative to most studies in the literature.70Data were
drawn from seven pediatric HIV clinics in four U.S. cities;
thus, these findings are likely generalizable to a large por-
tion of children living with HIV in the United States. More-
over, this study is unique in its examination of three family
experience factors as they relate to adherence. Several limi-
tations must be noted as well. First, conclusions about causal-
ity are limited due to the cross-sectional design. Addition-
ally, this study used a single caregiver self-report question
to assess adherence over a 6-month period. Although the as-
sociation between this measure and virologic outcomes sup-
ports its validity, replication of this finding is important, and
findings will be enhanced when multiple measures are
used.71For example, incorporating child as well as caregiver
reports may provide a fuller, if more complex, picture of ad-
herence. More objective assessment tools such as electronic
monitoring devices, while expensive and imperfect, can pro-
vide useful triangulation of data, as well.25
Both the present study and a previous study11adapted a
measure originally used to assess responsibility for diabetes
regimen tasks,50which asks caregivers whether the child,
caregiver, or both are primarily responsible for regimen
tasks. The current study found limited variability in re-
sponses to most items, suggesting that a different response
set may improve the measure. A similar measure to assess
responsibility for asthma management has the respondent
rate each task on a 5-point Likert-type scale ranging from 1
(parent is completely responsible) to 5 (child is completely
responsible),12although only limited support was found for
the relationship between that measure and children’s ad-
herence.12,72Another option would have respondents report
how frequently over a set period of time a caregiver (versus
child) actually completed each task. For some regimen tasks
it may be valuable to reframe the construct from responsi-
bility to supervision and monitoring.54Presumably, the child
is typically the one who puts the medication in his/her
mouth, so the important question may be whether or not a
caregiver was present and watched it occur.73With either
modification, efforts to limit response biases due to social de-
sirability will be critical to the future success of this measure.
In conclusion, this multisite study of children’s adherence
to ART highlights the importance of caregivers taking re-
sponsibility for the medication supply and demonstrates the
utility of barrier assessments for identifying suboptimal ad-
herence. This study also suggests that for some families, us-
ing strategies for remembering medication may be insuffi-
cient to address problems with forgetting doses, although
this finding warrants replication with a longitudinal, exper-
imental design that can clarify the causal direction of these
preliminary findings. Clinicians and researchers working
with families may want to investigate how motivating fac-
tors account for adherence problems, and how established
techniques, such as cognitive-behavioral and motivational
interviewing may be useful in addressing these issues. Al-
though some adherence-promoting interventions have been
tested among children and youth, their effectiveness has
been limited, at best, and their effects on adherence motiva-
tions have not been well studied.41,70–73For some struggling
families, home-based nurse-administered dosing may be the
only viable strategy for ensuring adherence74while we await
future studies to identify promising alternative intervention
Dr. Allison is now at the National Institute of Mental
Health, Division of AIDS & Health and Behavior Research,
Center for Mental Health Research on AIDS. Dr. Bachanas
is now at the CDC Global AIDS Program, Atlanta, GA. Dr.
Bulterys is now at the CDC Global AIDS Program, Beijing,
China. Dr. Marhefka is now at the University of South
Florida, College of Public Health, Department of Commu-
nity and Family Health.
PACTS and PACTS-HOPE were funded by the U.S. Cen-
ters for Disease Control and Prevention through cooperative
agreements U64/CCU207228 (MHRA of New York City),
U64/CCU202219 (UMDNJ-New Jersey Medical School),
U64/CCU306825 (University of Maryland School of Medi-
cine), and U64/CCU404456 (Emory University School of
Medicine). The findings and conclusions in this report are
those of the authors and do not necessarily represent the
views of the Centers for Disease Control and Prevention.
During the production of this manuscript, Dr. Marhefka
was supported by the Center Grant P30 MH43520 from the
National Institute of Mental Health to the HIV Center for
Clinical and Behavioral Studies, Anke A. Ehrhardt, Ph.D.,
Principal Investigator, and NRSA T32 MH19139, Behavioral
Sciences Research in HIV Infection, Anke A. Ehrhardt, Ph.D.,
The authors would like to thank the Bronx Lebanon Hos-
pital: Elizabeth Adams, Saroj Bakshi, Caroline Nubel, and
MARHEFKA ET AL. 644
Aida Rivas; the Centers for Disease Control and Prevention:
April Bell, Mary Glenn Fowler, Darcy Freedman, Siva Ran-
garajan, Shawn Wei, and Bob Yang; the Columbia University
Mailman School of Public Health: Louise Kuhn; the Emory
University School of Medicine: Corrine David Ferdon, Vickie
Grimes, Francis Lee, Steven Nesheim, Mary Sawyer, and
Kevin Sullivan; the Harlem Hospital Center: Susan Champion,
Julia Floyd, and Cynthia Freeland,; the Jacobi Hospital Cen-
ter: Jacob Abadi, Joanna Dobroszycki, Adell Harris, Genevieve
Lambert, Michael Rosenberg, and Andrew Wiznia; the Met-
ropolitan Hospital Center: Mahrukh Bamji, Grace Canillas,
Nancy Cruz, and Lynn Jackson; the Medical and Health Re-
search Association of New York City, Inc.: Tina Alford, Ros-
alind Carter, Mary Ann Chiasson, Eileen Rillamas-Sun, and
Elisa Rivera; the Montefiore Medical Center: Julia Arnsten, Va-
lerie Nedwin, Ellie Schoenbaum, and Anna Winston; the Uni-
versity of Medicine and Dentistry of New Jersey: Susan
Abudato, Lucia Ejiofor, Jennis Hannah, Mary Jo Hoyt, Paul
Palumbo, and Jeffrey Swerdlow; and the University of Mary-
land School of Medicine: John Farley, Susan Hines, Sue
Lovelace, Katie Peery, and Peter Vink.
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Address reprint requests to:
Stephanie L. Marhefka, Ph.D.
Department of Community and Family Health
College of Public Health
University of South Florida
13201 Bruce B. Downs Boulevard, MDC 56
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FAMILY EXPERIENCES WITH ANTIRETROVIRAL THERAPY647