Hematopoietic stem cell transplantation (HCT) is a necessary treatment to cure a range of otherwise incurable pediatric malignant and nonmalignant conditions. The treatment begins with an onerous and lengthy hospitalization, where the patient's complex care is managed by an interdisciplinary team. The responsibility for the implementation of this regimen abruptly transfers to the family after discharge. During the first year after transplant, families must navigate the logistical challenges of frequent clinic visits and establish patient and family daily routines all while maintaining appropriate isolation procedures and managing the patient's complex medication regimen which includes frequent changes in medication type and dosing to prevent transplant-associated complications.
Adherence to the post-HCT medication regimen is critical to the patient's long-term health and offering protection against significant and serious complications after transplant (eg, graft vs host disease, infections).
The few studies that have examined adherence to the HCT medication regimens showed that adherence was poor both during inpatient hospitalization  and after discharge.  This is particularly concerning because recent research has documented that poor adherence to the HCT medication regimen was associated with an increased risk of infection after discharge  and increased risk of mortality 1 year after transplant.  Thus, given the significant impact of adherence on treatment outcomes, it is imperative to better understand mechanisms associated with adherence to the HCT regimen after discharge. 
The pediatric self-management model
has been used as a framework for understanding mechanisms that facilitate or impede adherence in pediatric chronic illness populations. Within this framework, adherence-related behaviors are driven by individual, family, community, and health care system factors. In the health care system, adherence promotion interventions by the medical team significantly increase medication adherence across a variety of pediatric illness populations.  Caregivers of HCT patients cite discharge teaching and the acquisition of knowledge, delivered by members of their medical team, as particularly important for medication adherence.  Perceptions of quality discharge teaching can increase caregivers' readiness for discharge and efficacy in their ability to manage their child's care.  Though not well-documented in pediatrics, among adult HCT recipients, discharge teaching improves the accuracy of the medication type and dosage taken.  Thus, effective discharge teaching is a core component of medical care that is necessary for caregivers to successfully manage complex medication regimens after their child is discharged from the hospital. 
However, little information is known about which components of discharge teaching are needed to promote caregiver efficacy regarding their child's medication management and whether caregiver efficacy has an impact on adherence-related behaviors. In addition, there are no documented standards for medication discharge teaching practices within pediatric HCT. Therefore, the aims of this study were exploratory in nature. Our first aim was to describe themes related to information provided by the pharmacists regarding medication (eg, medication name, dosage) and adherence promotion (eg, organizational skills, use of pillboxes/reminders). Second, we examined communication and environmental factors (eg, distractions) during discharge teaching that could facilitate or impede caregiver learning. Finally, we documented caregivers' impressions of discharge teaching including knowledge, communication, and self-efficacy to manage their child's medication regimen.
1.1. Participants and procedures
A subset of patients from a larger study examining adherence after pediatric HCT were recruited and consented to participate in an additional aspect of the study that video-recorded their medication discharge teaching. As a standard of care, patients at a large Midwestern pediatric medical center received discharge teaching from a HCT pharmacist on the day of discharge. No modifications were made to the discharge teaching process. Caregivers completed a five-minute structured interview and an eight-item questionnaire immediately after the completion of discharge teaching (baseline) and at 1 week postdischarge. All study procedures were approved by the Institutional Review Board at Cincinnati Children's Hospital Medical Center.
1.2.1. Structured interview
Interviews were verbally conducted by a trained research assistant at baseline, using predetermined questions to obtain caregivers' perceptions of what was most and least helpful about the discharge teaching. The same questions, with one additional question about time at home, were verbally administered again 1 week postdischarge.
1.2.2. Caregiver perceptions of pharmacy teaching
A seven-item questionnaire was administered at baseline and 1 week postdischarge to assess caregivers' perceptions of their knowledge, adherence plan, and experience after the discharge teaching. Owing to the lack of an available validated measure addressing medication discharge teaching in this population, this measure was developed for this study. See
Fig. 1 for specific items. Figure 1.:
Percentage of caregiver-reported knowledge about medication immediately after discharge teaching (baseline) and 1 week postdischarge (n = 19).
1.2.3. Chart review
Chart reviews were conducted to obtain pertinent participant medical information such as date and type of transplant, length of inpatient hospitalization, medications prescribed (type, prescribed dates, and dosing), and days patients were hospitalized.
A grounded theory approach
was used to conduct the primary analyses, and procedures for reporting  qualitative research were followed as outlined by the consolidated criteria for reporting qualitative research (COREQ). The sample size was determined based on having achieved saturation and no new codes emerging. 
All video recordings were reviewed by the first author to identify themes to guide the development of codes. Transcriptions of the video recordings were then entered into NVivo 10 software which was used to organize and code the data. Coders also watched all video recordings for environmental and nonverbal codes that could not be obtained from the transcript alone. Coding was performed by two independent coders, and each theme was then examined for consistency. In addition, there was an “other” category that allowed coders to add additional information that they considered to be significant to the aims of the study that were then reviewed and, based on group consensus that a new code should be included, were incorporated into the subsequent analyses. Coding discrepancies (ie, a portion of the teaching was identified to be a part of a theme by one coder but not the other) were discussed during weekly meetings with the first author and coders and resolved through consensus. After the review of discrepancies of coding, operational definitions were revised for clarity. All teachings were then coded for the presence or absence of each identified theme, and frequencies of each theme across teachings were calculated. Owing to the small sample size and novel measure, only descriptive statistics (ie, frequencies) were calculated for caregiver responses for each item on the caregiver perceptions of pharmacy teaching measure at baseline and 1 week postdischarge.
A total of 20 participants were included in the medication discharge portion of the study. One participant's data were removed due to video equipment failure, resulting in a total of 19 participants. See
Table 1 for demographic information.
Table 1 -
Descriptive data of patient and caregiver demographics and pharmacist factors
N = 19
Mean age in years (SD, range)
5.8 (4.5, 0–12)
Mean days in hospital (SD, range)
71.4 (69.5, 32–264)
More than one race
N = 19
Mean age in years (SD, range)
35.4 (6.8, 23–48)
N = 10
Number of teachings per pharmacist
Completed 4 teachings
Completed 3 teachings
Completed 2 teachings
Completed 1 teaching
Mean time of teaching in minutes
17.1 (6.8, 7–31)
Mean number of medications
11.5 (4.1, 6–22)
2.2. Medication information
Medication information themes were identified and examined in relation to caregiver self-reported knowledge about medications and administration. Pharmacists were consistent with providing general medication information to families during teaching. The following information was covered in 100% of discharge teachings: medication dosage, purpose (eg, “this medication is for his blood pressure”), administration instructions (eg, drawing with a syringe, cutting pills, administering medication in food), and timing (eg, “give every 12 hours or twice a day”). Pharmacists reviewed possible side effects in 84% of teachings. Side effects discussed included weight gain, stomach discomfort, rash, liver damage, and behavioral sequelae (eg, “[this medication] can be more sedating or calming”). In addition, pharmacists stressed the importance of one or more medication in 53% of teachings. The refill process was explained in 94% of teachings. The high rates of coverage related to this content potentially suggest a high level of comfort by the pharmacists, which is consistent with their training.
All patients were prescribed at least one liquid medication, and caregivers were responsible for measuring doses using a syringe. In 74% of teachings, the pharmacist had a caregiver demonstrate administering the dose with a syringe. However, pharmacists were less consistent about explaining how to read increments on the syringe, which occurred in only 37% of teachings, and a little over half of the teachings (53%) included an explanation from the pharmacist about which syringe to use with each medication. This behavioral intervention that is directly connected with medication information suggests one specific attempt at improving adherence. However, it was evident that it was not a standard part of the teaching and rather a component that specific pharmacists determined may potentially be helpful to integrate into their teachings. This resulted in inconsistency in both the usage of the strategy and the way in which it was implemented.
2.2.1. Caregiver impressions
During the structured interview, many caregivers reported that the pharmacists were thorough and highly detailed in the information that they provided for each individual medication. In every instance in which this was expressed, it was noted as a helpful portion of the discharge teaching. A few parents did separately report that they had been caring for their child for a long time, and the information was not new information to them. In two instances, this was due to their professional training (ie, nurse and pharmacy technician). In addition, a couple of caregivers reported that it was a lot of information to obtain all at one time and it would have been beneficial to be slower, focused on one at a time, and potentially before the day of discharge when there are typically several competing demands for the caregiver's attention. Finally, approximately a third of caregivers discussed the physical demonstration (either by the caregiver or the pharmacist) of the syringe usage as a helpful component to the teaching, with several specifically noting it being beneficial to do it themselves with potential additional benefit had they been administering the medication before discharge. One caregiver specifically reported that this was not helpful because she was already familiar.
Caregivers were asked to rate their level of agreement with the statement “I know the names of all my child's medications” at baseline and 1 week postdischarge. The number of caregivers who agreed or strongly agreed with that statement increased from baseline to 1 week postdischarge (see
Fig. 1). Similarly, caregivers expressed greater confidence with knowing their children's medication dosages at 1 week postdischarge compared with baseline. All caregivers reported they knew the timing of their children's medications and that they had all the information needed to be successful at baseline and 1 week postdischarge. 2.3. Adherence promotion
Adherence promotion themes were identified and examined in relation to caregiver self-reported confidence with having a plan in place for implementing the regimen at home. Pharmacists addressed how to handle late or missed medication doses in 42% of teachings. Across all eight of these teachings, pharmacists provided acceptable time windows (eg, “within 2–3 hours”) for administering a dose late. For some medications, caregivers were discouraged from administering a missed dose outside of that time window, while for other medications, pharmacists advised caregivers to administer a double dose at the next scheduled time.
As far as if you miss a dose with this one, as long as it's within 6 hours of when the dose is due go ahead and give it. If it's after that 6 hour mark, just hold off because we don't want to lower his blood pressure too much.
This is one medication that if you were to miss the morning dose, as soon as you remember it, go ahead and give it. Even if it's time for the second dose, then just go ahead and give a whole one instead of a half.
In several teachings, the pharmacist identified a subset of medications that were the most important to administer at the prescribed times, with the caveat that adhering to scheduled times for all medications is preferred.
The big ones to try to make sure he gets every day at the right time are the acyclovir and the voriconazole, but obviously all of them we try to keep on schedule.
Beyond handling missed and late doses, pharmacists addressed ways that caregivers could adjust their child's medication schedule in 53% of teachings. Nearly all these suggestions were general and were not tailored to family-specific concerns about scheduling. Pharmacists explained how caregivers could adjust times of administration to better fit their child's schedule (eg, child's sleep–wake schedule) or set a dosing time based on the number of other medications administered at that time.
The next medication is pretty important for you to give around the same times every day. The two doses we always give them at 9 AM and 9 PM, but you can choose what is most convenient for you. Just make sure you stick on that same regimen every day.
Only two instances were observed where the pharmacist made specific scheduling recommendations based on concerns the family shared.
If you notice that you're frequently missing it, you might need to just reevaluate what times you're giving it to help you out at home, just to make sure that we can get on a good schedule…If you definitely have any issues or find that you can't keep up with the schedule, let us know and we can work something out and find a better schedule.
Coding revealed that in 26% of teachings, the pharmacist mentioned additional strategies for adherence promotion beyond handling missed doses and adjusting the medication schedule. In two of these teachings, the pharmacist advised on strategies to make the medication more palatable (eg, mixing with chocolate syrup). One caregiver raised the concern that her child was refusing his lozenges, and the pharmacist encouraged the caregiver to “try your best with it” and have a conversation with the team to consider switching that medication if refusal continued. In two teachings, the pharmacist discussed using a pill box to keep track of medications.
2.3.1. Caregiver impressions
During the structured interview, most of the feedback around helpful components of the interactions and suggestions for future interactions were related to improving adherence. Almost half of the caregivers specifically commented on a handout that the pharmacists routinely include that shows all the medications, dosages, and timing for each as a helpful tool. Several others referenced visual aids and having everything laid out on the table all at once. Finally, two caregivers suggested having things more organized (ie, syringes separated by size and most important information highlighted on handout) to help ease transition to home.
Caregivers were asked to rate their level of agreement with the statement “I have a plan in place for how I will implement my child's medication regimen” at baseline and 1 week postdischarge. All 19 caregivers agreed or strongly agreed with that statement at baseline. Eighteen caregivers agreed or strongly agreed at 1 week postdischarge, while one caregiver strongly disagreed.
2.4. Communication and environmental factors
Communication and environmental themes were identified and examined in relation to caregivers' self-reported effectiveness of the conversation. In all the discharge teachings, the pharmacist elicited questions from the family and family members asked questions of the pharmacist.
In four teachings, the pharmacist was observed directing information to the patient or initiating communication with the patient related to aspects of the discharge care at some point during the session, while the teaching was directed only toward the caregivers in the other 15 coded sessions.
In four of the coded teachings, the patient self-initiated involvement in the session by asking questions or commenting on the instructions.
am I gonna have to take them all with my mouth again?
Pharmacists were observed to provide reinforcement to patients and caregivers in seven teachings. Reinforcement was related to progress the family had made thus far while inpatient, encouraging caregivers to engage in practice during the teaching and reassuring the family about the process after discharge.
Perfect, you're already a champ at this.
You're never alone.
Additional themes related to the discharge teaching environment emerged. In 47% of the teachings, an interruption or off-task behavior was observed. Interruptions/off-task behaviors included a caregiver or nurse performing patient care unrelated to discharge teaching during the session (n = 4), patient watching television (n = 4), and caregiver or patient talking off topic during the teaching session (n = 5). Given the significance and technical nature of the information being presented, this may suggest that the environment that discharge teaching is occurring may be less than ideal. One strategy to help with orienting to and remembering information that was observed in the video analyses was note-taking, which was present by the caregivers in 53% of the coded sessions.
2.4.1. Caregiver impressions
During the structured interview, environmental factors were included from a few caregivers as suggestions for improvements. Two caregivers indicated that it would have been helpful to have someone available to care for their child or to do it at a time that the child is more content. In addition, a few caregivers reported that a friendly and warmer environment would have been nice, including being seated during the teaching and having a larger space.
All caregivers reported they agreed or strongly agreed that they had the opportunity to ask questions and get answers at baseline and 1 week postdischarge. All caregivers reported they agreed or strongly agreed that they felt respected and heard at baseline, while 95% of caregivers reported they agreed or strongly agreed when asked the same question 1 week postdischarge, with one family indicating they were unsure. All but one caregiver indicated they agreed or strongly agreed that they would have the opportunity to discuss concerns with the pharmacist at baseline and 1 week postdischarge, while one caregiver reported they were unsure at both time points.
After HCT, families are discharged with an extensive outpatient treatment regimen that is essential to be followed to optimize patients' long-term outcomes and prevent transplant-associated complications. Various aspects of discharge teaching are targeted to promote success for families in managing the complex regimen. One that is potentially of utmost importance is the time spent between the medical staff (ie, pharmacist) and the family to ensure a thorough understanding of the oral medication regimen before the family having to navigate it on their own. This study aims to examine one institution's process to attempt to address this need along with caregivers' perceptions of the efficacy of this interaction.
Caregivers overwhelmingly felt that they had a good amount of information and that they were prepared for discharge. The vast majority continued to have that perspective after discharge, but several noted how difficult it was at home and that there was not a way to be fully prepared for that. This speaks to the inherently vast challenges that families face caring for their children with significant medical complexities and potential benefits of empathy through the discharge teaching process.
Pharmacists are the primary providers responsible for reviewing and ensuring that families are familiar with their daily medication regimen. In this study, it was found that there is structure and consistency across some domains whereas others had notable variability. As would likely be expected based on pharmacists' primary focus of training, they were consistent in their review of the names, dosages, and frequency of the medications being prescribed. However, there was less consistency among factors related to promoting adherence, such as more specific learnings (ie, how to read/fill a syringe) and behavioral modifications (ie, pairing timing with an already engrained event). It is well established that
both knowledge and behavior must be targeted for optimal adherence with behavioral interventions demonstrating a more robust change in outcomes.  Therefore, specific behavioral training for pharmacists might be beneficial to optimize adherence promotion. An additional consideration for a more targeted approach to teaching may be a brief assessment of the caregiver's regimen-specific skills and knowledge to appropriately target gaps. This could be incorporated into the discharge teaching but may also be done by starting the discharge teaching process before the day of discharge, allowing caregivers to obtain greater comfort in caring for their child independently and staff to have a deeper knowledge of the caregiver's ability to manage the regimen at home. 
There were several limitations of this study, along with potential future directions in research. Given the exploratory nature, the primary focus was on observing pharmacist, family, and environmental factors that occur during the discharge teaching process. Future research should examine potentially modifiable aspects of discharge teaching, including provider, family, patient, and environmental factors with a larger sample. For instance, understanding the relationship between the number of family members involved in discharge teaching and the associated adherence outcome may identify a potentially useful approach to intervention. In addition, there was significant variability in the number of teachings that each pharmacist performed, thus resulting in difficulties with data analysis as to which aspects of the teachings were based on the person as an individual rather than the specific components that they included (ie, demonstrating with a syringe vs being a more experienced pharmacist and more comfortable teaching). This can easily be rectified with a larger sample that is able to control for those variables. Finally, further examination of the role of various family members, including the inclusion of children, would be beneficial because the family unit will be working together once they are home to optimize their adherence.
In future research, it would be beneficial to first standardize the discharge teaching process and develop trainings for pharmacists that include adherence promotion, such as family engagement, guided problem-solving, and understanding of behavioral modification. Once that has been accomplished, adherence outcomes can be measured to more fully explore the agents of behavior change and, ultimately, understand the outcomes that are of most importance.
These preliminary findings show that teaching caregivers about their child's prescribed medication regimen is a critical component of the discharge process that has the potential for facilitating medication adherence. Caregivers appreciated the information, along with concrete skills and tools to help them be as successful as possible at home. The findings suggest that there are a number of modifiable factors that can be more fully understood through additional research and reasonably implemented in to routine medical care after HCT.
National Cancer Institute; Grant number: 1R01CA157460-01; National Institutes of Health; Grant number: T32 HD 68233-7.
Conflicts of interest statement
The authors declare no conflict of interest.
Lauren Szulczewski led research design, performance of the research, data analyses, and writing of the paper.
Julia K. Carmody conducted
qualitative and quantitate data analyses, contributed to writing of the paper and approval of the final manuscript.
Rachel Tillery assisted with conducting
qualitative data analysis, contributed to writing of the paper and approval of the final manuscript.
Adam S. Nelson provided content expertise, contributed to writing of the paper and approval of the final manuscript.
Ahna L. H. Pai guided research design, assisted in data analyses, contributed to writing of the paper and approval of the final manuscript.
Thank you to all the patients, caregivers, and pharmacists who generously gave their precious time to this study. The data that support the findings of this study are available from the corresponding author on reasonable request.
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