OT: Teaching Children How To Swallow Pills

[Guest guest]

I found this mentioned in the most recent edition of Medscape's

Pediatrics MedPulse. It's not about JRA but rather some research about

teaching children how to swallow pills. The children, in this case, have

HIV ... but since some of our children take quite a few pills I thought

it still might still be relevant and/or interesting.

~Georgina

Teaching and Maintaining Pill Swallowing in HIV-Infected Children CME

http://pediatrics.medscape.com/SCP/TAR/2000/v10.n02/a6834.czyz/a6834.czyz-01.htm\

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Danita I.Czyzewski,PhD; R. Duane Runyan,PhD; Molly A.,PhD; R.

Calles,RN, BSN

[The AIDS Reader 10(2):88-94, 2000. © 2000 Cliggott Publishing Co.,

Division of SCP/Cliggott Communications, Inc.]

Abstract:

Learning to swallow capsules with no anxiety or discomfort should help

facilitate long-term compliance with an HIV treatment regimen.

Twenty-nine 3- to 13-year-old children with HIV infection who were naive

to pill swallowing or who had difficulty with pill swallowing were seen

for training. The training was done by a neutral therapist and used a

shaping technique to teach the swallowing of progressively larger

placebo capsules. Seventeen children learned to swallow large capsules

and were able to comply with their protease inhibitor regimen for at

least 6 months. Fourteen of these children learned with one 30-minute

training session. Specifics of the training and difficulties with

training are discussed.

Introduction:

HIV treatment regimens today are more powerful than ever, especially if

the treatment includes a protease inhibitor (PI). Most PIs do not have a

pediatric formulation, and those that do are often unpalatable to

children. One of the significant practical struggles in treating

pediatric HIV infection is ensuring that children can follow these

medication regimens, which often include swallowing multiple, large

capsules every day for an unlimited time, and with as little fuss as

possible.

Difficulties with pill swallowing include children being unable to

swallow a large capsule even once, as well as swallowing medication with

such coercion, discomfort, or anxiety that each administration is a

struggle. Parents or nonbehavioral health care providers tend to focus

on attaining compliance at that moment, even if it requires substantial

cajolery, bribery, or punishment. However, they may neglect the

long-term problems that these immediate solutions can cause. Research

suggests that an important reason for noncompliance with long-term

pediatric regimens is behavioral struggles with the child.[1] Thus,

although a parent may be willing to struggle to give a week's worth of

medication even if it takes 15 minutes of cajoling per dose, this

struggle will only escalate the problem of nonadherence with long-term

regimens.

Typical approaches used to encourage taking pediatric medications are

not reliable enough in general, or they do not apply to antiretroviral

treatment regimens that include a PI. For example, no other pediatric

regimen so consistently lacks alternative dosage forms, whether liquid,

chewable, or even nonoral. Chewing, crushing, or opening the capsules

often is not an option with PIs because of the manner in which they are

formulated. Capsules are too big to be hidden in foods, and hiding

medications in foods all too frequently produces its own problems, such

as food aversion and lack of trust in the caregiver. The possible risks

of nonadherence include viral resistance and treatment failure, which

may permanently limit treatment options.

This article describes our experience teaching pill swallowing to 29

children and adolescents with HIV infection, whose ages ranged from 3 to

13 years, before their enrollment in a PI trial. We describe the

techniques used to teach the skill, as well as the child, family,

medical team, and factors that support or interfere with acquiring and

maintaining the skill over time. The behavioral techniques reported are

not new, but their use has not been reported in children who are

HIV-positive, in whom the consequences of poor compliance with an oral

regimen are very serious.

Review of the Pill-Swallowing Literature:

Seven case studies involving 14 normally developing children aged 18

months to 14 years were found in the pill-swallowing literature.[2-9]

Most of these children had difficulty with pill swallowing and were

referred for treatment. These reports define successful pill swallowing

as the child's ability to swallow medications independent of any

tangible reinforcement. As already noted, the ability to swallow the

medication without any simultaneous inducements, either positive or

negative, is an important long-term goal.

The published case reports typically attributed problems with pill

swallowing to some combination of skill deficit, anxiety, and lack of

motivation. These three factors often interact. For example, lack of

skill produces anxiety when pill swallowing is necessary, and anxiety

avoidance produces an apparent lack of motivation to learn the skill.

Attempts to teach pill swallowing must present the skill in a way that

is simple and nonthreatening enough to keep the anxiety under control

and the motivation to persevere as high as possible.

Table 1 (on website) summarizes the published case reports over the past

30 years. All the reports used shaping as the primary technique to teach

the skill of pill swallowing.[2-9] Shaping pill swallowing involves

presenting pills (placebo pills, candy, ice chips) in increasingly

larger sizes until the target or larger pill is reached. Demonstrating

the specific steps of the skill by the therapist (called " modeling " ) is

also typically employed to teach the skill.[3-6,8]

Some studies used other techniques to minimize anxiety during training.

Two studies specifically kept parents out of the room for most of the

training,[4,5] and two used relaxation techniques to reduce

anxiety.[6,7] In six of the studies, children were given tangible

rewards during training to maintain motivation to learn, [2,4-6,8,9]

while in the other two studies, only praise was given.[3,7]

Length of training in the case studies varied from 1 30-minute

session[5] to 10 1-hour sessions.[3] Twelve of the 14 children learned

to swallow pills, and those who learned maintained the skills through

follow-up ranging from 3 months to 4 years. ( and colleagues[2]

did not report follow-up on their one successful child.)

Pill-Swallowing Training Procedure:

To begin the pill-swallowing shaping procedure, the trainer and child

meet in a distraction-free room without the parent. The trainer tells

the child that he or she will learn a new skill and suggests other

skills the child is likely to have learned, such as skipping, dressing,

or eating independently. The training involves a series of seven placebo

pills from " sprinkle " size, through gelatin capsule sizes 4, 3, 2, and

1, to 1,000-IU gelatin capsules. However, the trainer shows the child

only one size of placebo pill at a time.

First the trainer may ask the child to take a drink of water simply to

provide a successful experience and to increase confidence in the

procedure. The trainer then models the behavior for the child with the

smallest placebo. Specifically, the trainer sits up straight, notes the

level position of his head and neck, places the pill on the middle of

the tongue, and drinks the water. Then he shows the child that his mouth

is empty and that the pill has been swallowed.

The trainer then tells the child to practice swallowing with the

sprinkle-sized placebo. This task is so simple that no child has refused

to try. The child places the pill on the tongue and drinks water. If the

pill is swallowed, the trainer praises the child's success: " You did

it! " But the child is given no extrinsic rewards, such as stickers,

money, or tokens.

A few children have had difficulty with swallowing this tiny placebo.

After drinking the water, the " sprinkle " was still on the tongue or lost

somewhere in the mouth. The trainer may then have the child merely drink

water in the appropriate posture. This failure is usually a poor

prognostic sign.

After a success, the trainer moves quickly to the next trial, using the

term " next pill, " never " bigger pill. " The trainer uses short,

repetitive commands ( " Sit up straight. " " Keep your head straight. " " Put

the pill on your tongue. " " Drink the water. " ) With each trial, the

trainer and child each swallow a pill. The trainer puts two identical

pills on the table and asks the child which pill he will swallow. To

vary the situation, the trainer occasionally asks the child who should

" go first " or if the child wants to teach the trainer. Occasionally, the

trainer makes an obvious mistake and asks the child for instruction.

When the child successfully swallows the largest pill, the trainer

brings the parent back into the room and the child demonstrates

swallowing the largest placebo for the parent. For children who have

some difficulty learning the task, several demonstrations to the parents

are requested. This models the behavior for parents and increases

generalizability of the behavior to other settings.

If a pill is not swallowed at any time during the training, the trainer

says, " That's okay. Keep drinking. " Other than saying " Keep drinking, "

the trainer does not give reassurance or multiple commands. The trainer

is quiet, limits eye contact, and even looks away to allow the child to

swallow the water calmly. This quiet supportive stance by the trainer

serves several functions. It models calm, allows the child to use his

own resources to complete the task, and does not inadvertently reinforce

failure with attention. The trainer is more involved when the child is

succeeding than when failing the task.

Occasionally, a child wants to remove a pill from the mouth if the pill

is not successfully swallowed. The trainer initially suggests, " Keep

drinking. " If the child persists in wanting to remove the pill, the

trainer allows the child to do so.

Generally, the trainer tries twice with a particular pill size if the

child is not successful in swallowing it at first. After two consecutive

failures, the trainer has the child swallow the largest pill that was

successfully swallowed to end the teaching session with a success. The

trainer then praises the child for his efforts and schedules another

training session.

If the parent has been assessed to be calm and competent about the

training, the child is sent home to practice daily with the largest

placebo that he has swallowed successfully. Parents are advised to stop

practice sessions if the child experiences any difficulties during the

home practice so that negative experience is minimized.

Characteristics of the Trainer:

Both knowledge-based and interpersonal factors are important in

selecting a competent trainer. The trainer must be familiar enough with

learning therapy and behavioral change techniques to follow the

procedures, to be aware of inadvertent reinforcement of behaviors

incompatible with learning, and to make small changes in the procedure

dictated by the child's progress.

Although a medical caregiver or parent could learn these training

techniques, we believe the trainer needs to be a neutral figure to the

child. Emotional neutrality affords the best chance of minimizing

anxiety during training. While it is obvious that the presence of

authority figures (physicians in some cases) may increase a child's

anxiety, nurturing figures may also increase a child's anxiety and

impede the training. Anxiety in front of nurturing figures may arise

because a child wants to please parents or nurses and focuses on their

reactions rather than learning pill swallowing, or because parents are

so invested in the child's success that their anxiety is evident to the

child. Therefore, in this intervention we used clinical psychology

interns and trainees who are well versed in the techniques but who had

no other relationship with the children.

Assessment and Selection of the Children:

Children were seen for pill-swallowing training in order to enroll in a

PI trial. The children were referred by the medical service if they met

the following criteria: the child could not swallow pills or had never

tried to swallow pills, the parent or caregiver agreed to pill training,

the child was in a home environment that could provide consistency for

the new treatment regimen, and the patient and family had complied with

treatment regimens in the past.

Immediately before the training session, the caregiver was interviewed

briefly about the child's pill-swallowing history and other factors that

might interfere with training. Treatment procedures may have been

altered slightly based on this information, but no children were

excluded from training after this brief assessment.

Three areas of experience were briefly assessed because they tend to

predict difficulties with learning to swallow pills. First, children

with oral-motor difficulties and food aversions are likely to have more

pill-swallowing problems. These children may be characterized by a

current or former strong taste or food texture dislike and even by

refusal of certain food textures, such as lumpy foods or meats.

Second, negative experiences of gagging or choking on food or pills may

indicate problems with oral-motor functioning and/or anxiety about pill

swallowing and choking. Often, it is difficult to determine in a short

interview whether anxiety or actual oral-motor deficits are more

relevant. Measures to combat anxiety are much easier to implement within

the treatment (see below), so such measures were used in these cases.

Finally, psychological or behavioral factors that may interfere with

training were assessed. Children who were generally anxious and found

any new task frightening were likely to have more problems with

pill-swallowing training. With these children the trainer would use a

breathing exercise before trials, use distraction, avoid any discussion

of the sensation of the pill, and repeat successful trials

(overlearning).

We also anticipated that generally oppositional children would have

problems with the training. These children can be recognized by a

history of difficulty in taking even good-tasting medication or

cooperating with any medical intervention. With these children, the

trainer would deviate from the standard protocol by considering a small

reward when necessary.

Parent-child interaction and discipline are critical to the

effectiveness of the intervention and its long-term maintenance. If

parents have few effective strategies to manage the child's behavior in

general, they will probably have difficulty in facilitating the learning

of this complex skill. Their poor parenting skills could even exacerbate

any learning difficulties the child has. Parent-child interaction and

discipline were assessed briefly through observation of the pair at the

beginning of the training session and through screening questions to the

parent about discipline strategies. When problems were obvious, home

practice

was not suggested until the child exhibited no difficulties in a session

with the trainer.

With older children who had had difficulties swallowing pills, the

child's perspective on what may be contributing to his inability to take

medications was assessed. For example, children sometimes reported fears

of the medicine " getting stuck. " By helping the child clarify such

feelings about taking medications, the consultant could assist the child

in reducing those concerns. However, with younger children and

especially with those who have had no pill-swallowing experience, the

child's attitudes and feelings toward pill swallowing were not assessed.

We felt this conversation would delay the training and might

inadvertently

increase anxiety about pill swallowing. Further, this strategy was

consistent with our explanation that the child was simply learning a new

skill.

When Did Training Work, and When Did It Fail?:

Seventeen children learned to swallow PIs through this procedure and

continued to swallow these medications over time (Table 2). Their ages

ranged from 3 to 13 years. Training sessions typically lasted less than

30 minutes. Of the successful children, 14 learned the skill in only one

visit, 2 required two visits, and 1 required three visits.

Three children learned the skill in one visit but could not maintain it

and were considered failures with this technique. The problem seemed

behavioral in one of these children. She refused to attempt to swallow

the pills after several days (see case 3). However, the reason for

failure in the other two children was more complicated. They appeared to

be trying to swallow the pills but were unsuccessful. Work on lowering

anxiety and decreasing external pressure did not result in regained

skill. One of these children (age 4) had a history of strong food

preferences, suggesting poor acceptance of new taste and textures or

oral-motor difficulties. After 12 months with no attempts to prompt pill

swallowing in this child, she was retaught in one 30-minute session and

successfully maintained the skill.

Nine children did not learn to swallow pills (Table 2). Their ages

ranged from 3 to 11 years. Two of these children were progressing in

learning the skill and were scheduled for further training, but the

family chose not to pursue the training when other options for

medication routes arose.

The training failures experienced by the other children could be

partially explained or predicted by previous experience or current

behavior. Specifically, one child had a history of oppositional behavior

in medical settings, and one adolescent was severely depressed and did

not want further medical treatment. Two children had a history of

coercion to take PIs, and one had a history of eating difficulty. One

child could not swallow on command during the training, and this problem

turned out to be an early manifestation of HIV CNS involvement. Finally,

a 3-year-old had recent experience with candy in capsule form and could

not be stopped from biting on the placebo capsules. We expect that after

a several-month break with no candy capsules,

she will be able to learn. The following case studies illustrate some of

the more difficult cases encountered and demonstrate some of the lessons

learned.

Case 1

This 8-year-old boy was enrolled in the PI protocol after his caregiver

reported that he swallowed pills and would be able to take the large

capsules. After enrollment, he was admitted to the research unit,

initial blood work was done, and he was given his first dose of

medication. When he was unable to swallow the medication, several staff

members attempted to cajole and/or force him to take the medication

without success. Psychology staff was then called to intervene. Two

practice sessions during the day were not successful, perhaps because of

the negative experience he had had and the amount of pressure he felt to

perform that day.

Lesson Learned

Parents may not know or may not be completely truthful about pill-taking

behavior when given the chance to enroll their child in a potentially

lifesaving clinical trial. The revised protocol now requires that all

children must demonstrate to investigators that they can swallow a large

placebo capsule before enrolling in the study. If there is any problem,

the child is referred for pill-swallowing training.

Case 2

A 5-year-old girl learned pill swallowing fairly easily and was in the

PI trial for 1 year when " strep throat " developed and made swallowing

painful. She refused medications at that point and even after the sore

throat resolved. Her parents were instructed to restrict her activities

completely until she took the medication.

Despite the real threat that the PI regimen would be rendered useless

unless compliance was regained immediately, the parents were unable to

enforce the restrictions, citing the child's need to go to school and

their need to go to work. With the parents' permission, the child was

placed in the hospital for several days, where the restrictions were

strictly enforced (no television, no visits). Within several hours, the

child resumed taking the medication.

Lesson Learned

This family appeared to adhere well to this long-term regimen because

they made the pill-taking a normal part of life, rather than an anxiety

producing, lifesaving task to be done several times a day.

Unfortunately, when the noncompliance arose, they did not respond to it

appropriately because they did not assess the situation as an emergency

demanding an urgent response. Parents are now told to respond

immediately to noncompliance and to stop all the child's normal activity

when a single episode occurs so that pill refusal is never reinforced.

Case 3

A 4-year-old girl was taught to swallow pills without too much

difficulty and immediately began taking the protocol medications. She

did well for several days. When she visited her mother, the noncustodial

parent, the child refused to take the medication, and appropriate

consequences were not enforced. After that short visit, her father and

stepmother could not induce her to take the medication again. As with

the 5-year-old described above, she was hospitalized briefly, but

contingency management did not induce her to take the medication, and

she could not complete the protocol.

Lesson Learned

Since this experience, 1 month of compliance with a large placebo has

been required before a child begins a medication protocol to ensure that

long-term compliance is possible.

Discussion

The cases described illustrate the importance of closely coordinating

medical and behavioral services when a child's behavior so strongly

determines whether a medical treatment can be implemented. Most children

aged 4 years or older who were referred for training quickly learned to

swallow very large capsules through a shaping technique administered by

a neutral trainer.

Although most children outside clinical trials learn to swallow pills

without training by a psychologist, this short intervention appeared

cost-effective and justifiable for several reasons. Treating a child who

has had a negative experience with a medical intervention such as pill

swallowing is much more difficult and time-consuming than training a

treatment-naive child. The parents' understandable pressure to have

their child swallow pills so that they could participate in this PI

trial increased the likelihood of a poor training result.

Further, although most children eventually learn to swallow pills, few

medications used in pediatric medicine are large capsules. That fact

suggests it is more normative to learn this skill later in childhood,

rather than at age 3 or 4.

Finally, many children and even adults who swallow pills do so only with

difficulty. Any difficulty with swallowing pills when many pills must be

taken daily and indefinitely greatly increases the burden of the

regimen. Therefore, using a pill trainer was justified to train children

as young as possible and as easily as possible.

Factors related to failure at pill swallowing do not necessarily point

to straightforward or easy modifications of the program. Children with

oral-motor difficulties constituted the largest group for whom this

technique was not effective. While none had oral-motor difficulties

severe enough to compromise their nutrition, those with a history of

food aversions or those who could not swallow sprinkles or gulps of

water during training were more likely to be unable to learn to swallow

pills or maintain this behavior. It is unclear whether oral-motor

therapy with an occupational therapist or speech pathologist would

remedy these

problems, but the course of treatment would likely be lengthy.

Previous coercive pill-taking experiences preceded failure in two

children, but coercion did not predict failure in another child. One

father came into the training room and removed his belt to threaten

punishment of his young son, yet the child learned the task without

apparent interference from this gesture. It may be that coercion

interacts with some other child factor, such as a high tendency to

anxiety, and is most detrimental to highly anxious children.

Medical staff's understanding of the training tenets and adherence to

these tenets may help maximize successes in a given program. For

example, staff may need to remember to refer children for

pill-swallowing training far ahead of the time that the skill will be

needed for medical treatment. This will reduce pressure on the caregiver

and child and allow time to attempt to resolve behavioral and emotional

problems that may complicate the learning.

Staff must also learn to avoid inadvertently reinforcing bad

pill-swallowing habits (coercion, bribery, intermittent noncompliance),

though at times immediate success may seem very desirable. Focusing on

the factors that will help the family and child adhere to this demanding

regimen over time is a difficult task best accomplished when the entire

team works together.

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