Needs Assessment: This article aims to educate others on the application of a pill-swallowing training protocol for children with cancer. It describes the main points of the training and the role of adequate parental training via brief vignettes.
• Describe general issues with pill-swallowing training for young children.
• List helpful suggestions for parents of children learning how to swallow pills.
• Understand the role of parents in their children’s learning this skill.
Target Audience: Primary care physicians and psychiatrists.
CME Accreditation Statement: This activity has been planned and implemented in accordance with the Essentials and Standards of the Accreditation Council for Continuing Medical Education (ACCME) through the joint sponsorship of the Mount Sinai School of Medicine and MBL Communications, Inc. The Mount Sinai School of Medicine is accredited by the ACCME to provide continuing medical education for physicians.
Credit Designation: The Mount Sinai School of Medicine designates this educational activity for a maximum of 3 AMA PRA Category 1 Credit(s)TM. Physicians should only claim credit commensurate with the extent of their participation in the activity.
Faculty Disclosure Policy Statement: It is the policy of the Mount Sinai School of Medicine to ensure objectivity, balance, independence, transparency, and scientific rigor in all CME-sponsored educational activities. All faculty participating in the planning or implementation of a sponsored activity are expected to disclose to the audience any relevant financial relationships and to assist in resolving any conflict of interest that may arise from the relationship. Presenters must also make a meaningful disclosure to the audience of their discussions of unlabeled or unapproved drugs or devices. This information will be available as part of the course material.
This activity has been peer-reviewed and approved by Eric Hollander, MD, chair and professor of psychiatry at the Mount Sinai School of Medicine, and Norman Sussman, MD, editor of Primary Psychiatry and professor of psychiatry at New York University School of Medicine. Review Date: June 4, 2008.
Drs. Hollander and Sussman report no affiliation with or financial interest in any organization that may pose a conflict of interest.
To receive credit for this activity: Read this article and the two CME-designated accompanying articles, reflect on the information presented, and then complete the CME posttest and evaluation. To obtain credits, you should score 70% or better. Early submission of this posttest is encouraged: please submit this posttest by July 1, 2010 to be eligible for credit. Release date: July 1, 2008. Termination date: July 31, 2010. The estimated time to complete all three articles and the posttest is 3 hours.
Primary Psychiatry. 2008;15(7):49-53
Dr. Cruz-Arrieta is senior psychologist and clinical assistant professor in both the Departments of Child & Adolescent Psychiatry and Pediatrics at New York University School of Medicine in New York City.
Disclosure: Dr. Cruz-Arrieta reports no affiliation with or financial interest in any organization that may pose a conflict of interest.
Please direct all correspondence to: Eduvigis Cruz-Arrieta, PhD, Stephen D. Hassenfeld Children’s Center for Cancer and Blood Disorders, 160 E 32nd St, Second Floor, New York, NY 10016; Tel: 212-263-9925; Fax: 212-263-8410; E-mail: Eduvigis.firstname.lastname@example.org.
The use of behavioral techniques such as shaping and differential attention used to teach children ≥18 months of age how to swallow pills is well documented. However, there is a lack of data on the capacity of children of various ages to ingest pills. Pediatric cancer patients as young as 3 years of age must learn to take pills in order to benefit from alternative treatments for their conditions due to difficulties in drinking liquid formulations or requiring medication only available in pill form. Parents are trained on how to hide medication in foods, but they are not coached on how to teach their children to take pills. The stress of pediatric cancer and its effect on caregivers makes this a priority. This article provides guidelines on how to do this.
The use of well-known behavioral techniques such as shaping and differential attention used to teach children ≥18 months of age how to swallow pills has been documented extensively.1-7 There is a lack of data on the capacity of children of various ages to ingest pills. One recent study showed that the majority of children 6–11 years of age say they can successfully swallow small tablets.8 The majority of the literature has further developed from the research and treatment of young pediatric AIDS patients who needed help learning how to take several pills per day indefinitely as part of the long-term management of HIV. At the Stephen D. Hassenfeld Children’s Center for Cancer and Blood Disorders of New York University Langone Medical Center, the need for patients as young as 3 years of age to learn how to take pills in order to benefit from alternative treatments for their conditions was identified. Some children were rejecting liquid formulations due to its bitter taste. This prompted both medical staff members and parents to seek other ways to provide the medicine. Other children required medication only available in pill form. Although parents can be advised to hide medication in palatable foods, some are uncomfortable with this strategy, especially if their child notices this. Most deny it to the child and report feeling “bad” for “tricking” him or her. As children are perceptive, they sense when “something is up” as one parent described it. This sometimes increases the child’s resistance to participating in other medical procedures. Given the stressful nature of pediatric cancer and its effect on caregivers, finding less stressful alternatives to caring for their children is always a priority.
Treatment Goals and Method
The treatment goals include increasing children’s self-efficacy in one aspect of their treatment by applying something they already know how to do (eg, “swallowing”) to their medical regimen at will, shortening the time spent taking medication by introducing a simple, fast way of ingesting it, reducing the need for coercive methods for administering medication by teaching parents how to present medication to their children, and providing age-appropriate psycho-education on why, when, and how children take medicine. This article reviews the author and colleagues’ experience teaching this skill to pediatric cancer patients. It illustrates modifications necessary when working with pre-schoolers with cancer in acute need to begin oral chemotherapy through case examples. Additional emphasis on role modeling and attention to cultural sensitivity as it applies to the interaction between patients and therapists of different ethnic and cultural backgrounds will be noted.
Various research studies document the use of candy and chunks of ice3,7 for this training. Cruz-Arrieta and colleagues believe that a method that distinguishes between eating candy and taking medicines aligns with the goal of sending a cohesive message about best practices to parents, despite anecdotal reports about successful use of candy (eg, “Tic Tac” mints, mini M&Ms, jelly beans) for this purpose in non-clinical settings.
The authors adopted the pill training protocol designed by Czyzewski from the Texas Children’s Hospital (D. Czyzewski, personal communication, June 2007). This spells out the presentation of placebos of increasing size, after demonstrating proper posture and pill swallowing technique, while providing no further attention to protests or distractions. Czyzewski and colleagues10 have produced two training videos designed to demonstrate proper training techniques as well as suggestions for common problems during and after the training.12,13 Modeling their tools after this material, the authors organized pill boxes using sugar-free, odorless, flavorless, gluten-free, and kosher placebos that ranged in size from size 4 (38–44 mg) to 00 (93–105 mg). None of the medications currently administered to the patients exceed a size 2 (57–65 mg). Regardless, the trainers practiced taking all placebo sizes to be able to compare and answer such questions from parents. In addition, the psychologist/trainer selected what to say beforehand and practiced a basic script to become comfortable with the information provided to the parents and their children during the session.
Six children (four boys and two girls) 3–5 years of age were referred by either the nurse practitioners and physicians working with the families or by the parents themselves. Five of these patients had brain tumor diagnoses and one had leukemia. As all of the children were from a different cultural and racial background than the trainer, questions relevant to the children’s family background were answered to accommodate parental requests when appropriate (eg, “my son cannot eat anything that is not kosher”). For example, a staff recreational therapist was asked to join the training session with the psychologist to increase the level of comfort for a boy 5 years of age with vision problems who responds very well in the presence of the recreational therapist but withdraws from unfamiliar people. The recreational therapist took turns taking placebo, modeling the behavior for the child. Another patient required that the psychologist discuss commonly used parenting strategies in the mother’s country of origin (eg, instructing the child to do something in a stern tone of voice to command respect) versus mainstream American practices (eg, instructing the child in a neutral tone) pertinent to handling the child’s potential medication refusal.
The psychologist met with each child’s parents before beginning the child’s training to review the plan and discuss how they can supplement their child’s learning of the skill using positive behavioral techniques. For example, they were instructed to reinforce approximations of successful pill swallowing while withdrawing attention for avoidance, whining, gagging, and vomiting behaviors.14 The psychologist encouraged parents to model pill-taking behavior at home as part of their morning routine by taking their multivitamins or any other medication within view of their child. Emphasis on keeping this as low key as possible was made. A tip sheet based on Czyzewski’s instructions (D Czyzewski, personal communication, June 2007) given to the parents at the end of the consultation is shown in the Table.
In general, all parents voiced disbelief about children’s ability to swallow pills and their child’s ability in particular. Parents with stronger opinions mentioned their “child is too young,” the pills are too big,” or the child “is stubborn.” These parents experienced more difficulties in maintaining their child’s newly acquired behavior at home.
Case 1: K.S.
At 5 years of age, K.S., a brain tumor patient, had a history of medication refusal and difficulties with medical procedures such as intravenous placements. Coercion was used to make him drink liquid medication at least once prior to referral for pill-swallowing training. The child required structured play time (ie, listening to a story about children with illness) in the psychology office before he was able to separate from his mother for the training. Despite a brief episode of gagging and some regurgitation, he learned to swallow pills on his first visit. Following two successful courses of oral medication that required five pills in a row over a 3-week period, K.S. reverted to his medication refusal behaviors. He attended a second training session after which he regained his skill. However, his parents remained anxious about his ability to do this at home, and shortly after he began to refuse again. Additional parental consultations were offered during a time off from treatment to assist them with resuming their giving pills to the patient.
K.S.’s statements concerning his not having to take pills (“I do not have to do this”) followed by his refusing all parental attempts to convince him to accept his pills were the most striking features of the interaction. He convinced his parents of their inability to make him do what he did “not have to.” The work continues as of the time of writing this report.
Case 2: S.D.
The parents of S.D., a 5-year-old boy, also expressed doubts about his ability to learn pill taking given his tendency to get “nervous easily.” Upon meeting S.D., it was evident that he tended to talk himself into feeling “scared,” as he repeatedly mentioned this to the psychologist on the way to the office. On his third visit, he was able to take three placebos and shared his newly learned skill with his father. He began his oral chemotherapy pills the next day and did not have any difficulties with his medication schedule for 6 months.
Case 3: S.N.
S.N., another 5-year-old brain tumor patient, was referred by her neuro-oncologist. She was identified as having some developmental delays. Her family needed additional guidance regarding the training, as she was perceived as “too young” for it. She was easily engaged by the psychologist; she separated easily from her mother and completed the training faster than anticipated (ie, 5 minutes into the presentation of the task). S.N. quickly demonstrated it for her mother who had originally been skeptical of her child’s achievement due to the ease in which the girl mastered the task. A follow-up after 6 months since training indicated no relapses in her ability and willingness to take pills.
Case 4: C.A.
C.A., a 9-year-old boy, was seen after completing a second round of treatment, post-relapse, for a brain tumor. He successfully learned to take pills under a psychologist’s supervision using Tic-Tacs but was not able to resume taking any medication in pill form due to intense gagging each time he tried. In addition, C.A. had a history of being extremely controlling of his environment as well as showing signs of hyperactivity and inattentiveness. C.A. refused to cooperate, citing increased anxiety at the thought of engaging in pill taking. Additional anxiety-reducing techniques that he previously learned to assist him during magnetic response imaging scans and radiation therapy were offered without success. He complained about wanting to be “retrained” with candy. The training was canceled after one session rather than risking an increase of his refusal behaviors that could prevent future training. Family issues and changes in the family structure took precedence over pill taking training, particularly since C.A. had finished treatment and was now on long-term follow-up.
Case 5: E.L.
E.L. is a very bright girl who was 32 months old at the time of her training. Her parents expressed multiple questions regarding her age, the size of her throat (she is petite for her age), the protocol, how to implement the pill-taking schedule at home, and what to do if she did not learn. They were somewhat surprised and reassured after she successfully swallowed a size-2 placebo in two brief visits. After this, the parents wanted to “practice” at home with more placebos. Concerns about practice failure with overanxious parents led to the psychologist discouraging the parents, beyond the general guidelines listed in the learning tip sheet, from doing any practice in the home. They succeeded in presenting the medication to their daughter on the first night of treatment. E.L. took the medication as prescribed. On the second day, she gagged after tasting the bitterness of the medication, as it dissolved in her mouth. Parents’ efforts were not successful and E.L. resumed taking the rest of the doses in liquid form. E.L. informed the psychologist that she will try this again when she turns “four.”
Case 6: O.B.
O.B., a 5-year-old leukemia patient, was referred for training soon after his diagnosis. The family provided a history of learning problems, parenting issues, and anxiety. However, only anxiety was mildly evident in O.B.’s overt behavior. These were considered factors working against maintaining his anxiety low and keeping motivation high enough to learn and practice pill taking on a regular basis. O.B. participated in the training after some initial difficulty separating from his mother to do so. His parents succeeded at having O.B. take pills 2 nights in a row, followed by refusal and vomiting as well as another parent training session in person (without the patient present) to review basic troubleshooting strategies for home and offer additional support to decrease parental anxiety over the procedure. Two weeks later, O.B. spontaneously reported mastering his new skill when greeted by the trainer in the clinic’s hallway. Three months later, he still takes pills successfully and uses empty placebo caps to consolidate several smaller tablets into one dose.
The examples briefly described here emphasize the importance of proper parental preparation for pill-taking training prior to attempting to teach the child. While maintaining a “matter-of-fact” attitude about medical procedures; offering brief, age-appropriate explanations for why their kids need to take medicine; modeling the behavior for their child without pressure to perform; and keeping their own nervousness in check, parents of young children with cancer can better incorporate pills into their children’s treatment. However, even after a successful training, children may dislike the taste of some medications. This may be addressed by using strategies such as placing a bitter tablet inside a flavorless capsule to help maintain the newly acquired skills of these children. The literature points to a combination of skill deficit, anxiety, and lack of motivation as factors related to pill swallowing difficulties. The author and colleagues’ experience with the cases briefly presented here showed that when training was not successful, this could be partially explained by pre-existing risk factors associated with poor success rates. These include a history of negative experiences associated with pill taking such as coercion; oppositional or controlling tendencies; anxiety; strong food preferences (eg, “picky eaters”); or a perception of a sense of urgency and desirability of quick learning to the child coming from parents and staff. The importance of a comprehensive pre-training interview with parents and medical staff as a strategy to plan how to teach the skills best while reducing anxieties and increasing motivation in both the child and the parents cannot be stressed enough.
There is a need to further study the usefulness of teaching pill-swallowing skills to both parents and medical staff as well as training children with cancer. A formal clinical trial evaluating the success of this approach in the pediatric oncology setting is needed in order to provide a more comprehensive way of determining success rates using this approach.
Providing psycho-education to parents and medical staff on pill swallowing training principles and techniques ensures that all adults communicate a consistent message to the child (“you can do it,” “this is easy,” and “we are here to teach you how”). Their children will become confident and competent participants in their own medical treatment if given the proper tools. PP
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