Caregiver and Clinician Perspectives on Discharge Medication Counseling: A Qualitative Study Free

This study was conducted from October 2020 to February 2021 at a quaternary care children’s hospital with over 3500 children admitted annually to 1 of 4 pediatric hospital medicine (PHM) teams. The electronic health record (EHR) generates a patient-specific discharge medication list (after visit summary [AVS]) indicating which medications should be continued, stopped, or started, administration timing grid (ie, morning, afternoon, evening, bedtime, as needed), and pharmacy information. Medication instructions are typically reviewed with the caregiver by a nurse. Clinicians (resident and attending physicians, nurse practitioners and physician assistants) are expected to review discharge medications with patients and families; however, there is no standardization in content or delivery of information. Pharmacists only participate in discharge medication counseling if the patient is a part of our hospital’s bedside medication delivery and counseling program (limited to a single floor of the hospital) or if a caregiver requests counseling at the time of medication pick-up from the pharmacy.

Participants were English or Spanish-speaking caregivers of children <4 years old who were discharged from the hospital on a liquid medication. Children <4 years old were chosen since liquid medications are typically prescribed in this age group. Caregivers of children with medical complexity were included if a home health nurse did not administer medications. Clinicians were recruited via e-mail and included PHM faculty physicians, pediatric resident physicians, nurses, and pharmacists. The hospital’s institutional review board approved the study, which included a waiver of written informed consent. Before audio and video recording, participants provided verbal consent.

Caregivers completed a demographics survey and a health literacy assessment (the Newest Vital Sign) validated for use in clinical settings.¹⁸  Caregiver race and ethnicity were self-reported and considered as social constructs to ensure diverse perspectives. This study was conducted during the coronavirus disease 2019 pandemic when in-person meetings were not permitted for research. Video-recorded virtual focus groups were scheduled within 1 to 2 weeks following hospital discharge. Focus groups included 3 to 4 English speaking caregivers each for a total of 10 participants. Individual interviews were completed with 4 English speaking caregivers and all Spanish-speaking caregivers because of difficulty scheduling focus groups in a timely fashion. Individual interviews were also conducted with all clinicians for similar reasons (see Supplemental Fig 2 for enrollment flow diagram). Caregiver focus groups and interviews were facilitated by a trained qualitative methodologist using open-ended, semistructured interview guides (Appendix 1) devised by the research team and informed by published literature.^15,17  Caregivers and clinicians were also shown a deidentified AVS and a previously published pictogram-based medication instruction sheet designed for those with low health literacy.⁷ 

An iterative inductive and deductive thematic approach was used for analysis.^19–21  Inductively, we sorted the quotes by coding category to identify higher-order themes and relationships between themes. Deductively, we were guided by our clinical knowledge and our knowledge of the literature on out-of-hospital medication error and the Donabedian structure-process-outcome framework, which is a conceptual model for evaluating quality of healthcare delivery.²²  A hierarchical coding system was developed and refined using the interview guides and a review of several transcripts (Appendix 2). Potential targets for interventions were discussed among research team members at the conclusion of data analysis.

Coding and analysis of transcripts was done separately for caregivers and clinicians. Experienced qualitative coders (Schlundt and Bonnet) established reliability by using the coding system on 2 transcripts and resolving any discrepancies before independently coding the remaining transcripts. Each speaking turn was treated as a separate quote and could be assigned up to 10 different codes. Transcripts were combined and sorted by code. Analysis occurred in parallel with interviews and was stopped when members of the analytic team agreed that the same concepts were being observed repeatedly and no new themes were emerging.²³ 

Fourteen English-speaking and 3 Spanish-speaking caregivers (17 total) completed the study. All caregivers were mothers, 47% identified as nonwhite, 24% identified as Hispanic or Latino, and 47% identified their marital status as single. Most had obtained a high school degree or completed some college. About half of caregivers were unemployed (including stay-at-home caregivers) and 35% identified having difficulty paying bills. Forty-one percent of caregivers had limited health literacy (Table 1). Sixteen clinicians completed the study, including 5 resident physicians, 2 PHM faculty physicians, 6 nurses and 3 pharmacists (Table 2).

Figure 1 summarizes the domains and subthemes using the Donabedian structure-process-outcome framework, and representative quotes, subthemes, and key concepts and targets for potential future interventions are summarized in Table 3.

Themes within the Infrastructure of Healthcare Delivery domain included: (1) supplies for medication counseling (ie, oral dosing syringes and liquid medication bottles), (2) EHR written discharge instruction sheet, (3) clinician training and education, (4) roles and responsibilities of team members, and (5) hospital pharmacy medication delivery and counseling program (“Meds-to-Beds”). Each theme is detailed below.

Clinicians noted that a key barrier to demonstration of proper liquid medication dosing was lack of available supplies (medication bottles and oral dosing syringes) on the inpatient floors. One nurse said, “we don’t have the actual bottle, or we don’t have the actual syringes…to be able to show them.” Clinicians agreed that having supplies readily available for demonstration at the bedside would be useful to facilitate show-back with families.

A high quality medication instruction sheet, such as the EHR generated after visit summary (AVS), was felt to be a crucial element for discharge medication counseling because it includes a full list of current and new medications, serves as a guide for nurses doing verbal counseling, and helps caregivers with recall of verbal counseling after leaving the hospital. However, both clinicians and caregivers highlighted limitations of the current AVS, including having too much information presented at once, not understanding how the timing grid should be used, and confusion over medications being labeled “stop” and “start.” A faculty physician noted, “the bad part of the AVS is it just auto-imports, so it might not be the most family-friendly thing.”

In discussing clinician training and education, physicians frequently commented on their lack of expertise with medication counseling, noting deficits in knowledge around medication side effects, medication interactions, and storage information. One physician said, “sometimes I’m very good at talking about certain medications and counseling them. And other times I’m probably not as good as I should be.” Nurses noted that although there are some medications that they frequently counsel families on, “we don’t always remember every single side effect.” Both physicians and nurses expressed a desire for additional education and valued completing counseling with a pharmacist. A nurse said, “I think it’s super helpful to have it be a joint effort between pharmacy and nursing because I think a lot of times pharmacy has information that I don’t necessarily know.”

When discussing roles and responsibilities, caregivers and clinicians agreed that counseling should ideally be shared among all healthcare team members and this approach increased patient safety. Clinicians noted that a barrier to this ideal counseling approach is time, with one physician noting, “competing responsibilities that might at times limit the ability of providers to have that clear communication about discharge counseling.” Physicians acknowledged that nurses do the majority of discharge medication counseling and serve as a final safety check for families before leaving the hospital. Caregivers perceived value in hearing consistent information from multiple providers and having the ability to ask questions to all team members.

The hospital pharmacy medication delivery and counseling program (“Meds to Beds”) was universally felt to be beneficial. Having medications delivered to the bedside facilitated more robust medication counseling as the medication bottle and syringes could be referred to during teaching. Bedside delivery of discharge medications also eased clinician concerns about medication adherence for families who may struggle to obtain medications after leaving the hospital. Pharmacists perceived that this program also eliminated potential medication errors resulting from differences in prescribed versus dispensed medication concentrations.

Within this domain, emergent themes included (1) medication reconciliation, (2) counseling content, (3) counseling techniques, and (4) language barriers and health literacy. Although caregivers did not express problems specifically with medication reconciliation, pharmacists and physicians expressed that errors that appear in written discharge medication instructions often begin with an incomplete admission medication reconciliation. Nurses noted that they frequently identify errors in the discharge medication reconciliation, such as medications being listed twice or a chronic medication inappropriately being listed as “stopped.” Once this kind of error is identified one nurse noted, “we’re calling back to the doctor because we’re the last people to touch that paperwork to go home. So, coming out of our hands, we want to make sure it’s right.”

When describing counseling content, clinicians and pharmacists noted the importance of conveying key aspects for safe medication administration in both verbal and written forms, including medication name, indication, dose, route, frequency, duration, side effects, and storage information. Although some physicians and pharmacists described a thorough process that included these elements, many cited time constraints as a barrier. For caregivers, there was a desire to learn about frequently omitted aspects, including side effects, interactions, and storage information. A few caregivers also noted that the stress and fatigue experienced in the hospital makes it more difficult to remember details about medication administration, such as the timing for the next dose after being discharged. Addition of this detail in verbal and written form was desired to mitigate caregiver cognitive fatigue.

Although clinicians verbalized the importance of using health literacy-informed counseling techniques, like avoiding medical jargon, repetition, teach-back and show-back, they acknowledged that these techniques are not consistently used. One resident physician noted, “even for simple things, like take this antibiotic for 10 days, it seems like teach back isn’t used with all patients.” Caregivers routinely reported that they did not receive medication administration demonstrations, and they had questions about how to use an oral dosing syringe. Whereas caregivers acknowledged that people may have different learning styles (preference for verbal or written information), a written medication sheet was felt to be essential. Nurses also emphasized the importance of written instructions to ease the discharge instruction complexity saying, “I feel like writing things down for them has been really helpful because I feel like we go through so much information, especially at discharge, you’re reiterating so much stuff that it’s easy to go home and forget.”

Within the theme of language barriers and health literacy, many clinicians noted difficulty in verbal and written communication for families in whom English is not their first language. One nurse said, “I don’t ever see anything printed in Arabic, and we take care of lots of different kids from lots of different places.” Strategies to mitigate challenges related to low health literacy and language barriers noted by pharmacists included working “ahead of time before discharge to try to get medications prepared and [using] different systems like color coordination.” Implicit bias was a reoccurring theme for physicians who expressed that “there are probably some families out there that don’t quite understand what I’m saying, but they don’t show it.” Spanish-speaking caregivers discussed challenges around lack of translated verbal and written discharge medication instructions. One Spanish-speaking caregiver relied on a family member for translation of materials and noted that at nonhospital pharmacies, “there’s almost never interpreters available.”

Within this domain, emergent themes included: (1) medication dosing accuracy and (2) caregiver understanding and adherence to discharge instructions. Clinicians acknowledged that medication dosing errors likely occur after discharge, but they are not always aware of them. A key outcome for any future interventions to improve the quality of discharge medication counseling is dosing accuracy. Several clinicians echoed what one nurse said about the importance of using a standard approach in teaching about medication dosing accuracy: “so we make sure that parents do get the correct information, especially because with kids the weight-based dosing is so important.” Caregivers and clinicians agreed that to improve medication dosing caregivers should receive a demonstration about how to draw up a liquid medication.

Another key outcome for improving the quality of discharge medication counseling is caregiver understanding and adherence to discharge instructions. As children transition from hospital-to-home, the responsibility of medication administration falls to caregivers and how well instructions are carried out directly impacts patient safety. A nurse acknowledged that “it’s really important to go over medication instructions with families and make sure they know exactly what they’re doing once they leave the hospital.” One nurse emphasized that “medication [teaching] is probably the most important part of our discharge process.”

Patient and family characteristics that influenced the entire discharge medication counseling process included patients with chronic comorbidities and history of prior hospitalizations, caregiver stress and cognitive fatigue, and caregiver health literacy and numeracy (Fig 1). Caregivers of children with medical complexity or who have experienced frequent hospitalizations were more familiar with hospital discharge medication counseling and medication administration and were more confident giving their child medications at home. However, these caregivers also identified difficulties with adjusting complex medication regimens from the inpatient to home setting. Among all caregivers, increased stress and cognitive fatigue experienced during a hospitalization was perceived to influence their ability to retain discharge instructions and was cited as a reason that written instructions were crucial. Clinicians noted that caregiver health literacy and numeracy is not always assessed or accounted for during discharge medication counseling but acknowledged that counseling should accommodate these factors.

Collaborating with caregivers of young children discharged with a liquid medication and clinicians who provide medication counseling, we identified key concepts and targets for interventions to improve discharge medication counseling and caregiver understanding. Optimizing discharge medication counseling could reduce medication errors and adverse outcomes postdischarge for hospitalized children. Suboptimal infrastructure and processes were described by stakeholders and key barriers and facilitators were identified. Clinicians and caregivers desired a standardized process to discharge medication counseling and noted problems with the default EHR-generated medication sheet. Clinicians also felt medication counseling should be a shared responsibility, as did caregivers, but only if information was consistent across team members. Therefore, developing a standardized process for written and verbal discharge medication counseling, along with clear role assignment for each team member is essential.

Language barriers and lack of consistent use of health literacy-informed communication strategies were also highlighted. Although the sample of Spanish-speaking caregivers was small, caregivers and clinicians identified language discordance to be a major barrier to effective discharge medication counseling.¹⁵  This is consistent with work by Choe et al which found that 73% of families who preferred a language other than English received written discharge instructions in English only.²⁴  This is concerning given that caregivers who use a language other than English are also at increased risk for limited health literacy and medication administration errors.²⁵  To ensure equitable outcomes, it is imperative to provide families with both written and verbal discharge medication instructions in their preferred language.

Caregivers also acknowledged the effect that cognitive fatigue has on retention of discharge medication counseling, a theme noted in multiple prior studies.^17,26,27  This likely stems from the stress and exhaustion that caregivers experience during a child’s hospitalization that can increase cognitive load and impede the assimilation of detailed information that is critical to caring for their child at home.¹⁷  This suggests that caregiver health literacy in the context of a child’s hospitalization may be dynamic and underscores the need to adhere to universal precautions for health literacy: using plain language at the sixth grade reading level or less, utilizing pictures or pictograms, and using teach-back and show-back.²⁸  In addition, leveraging telehealth postdischarge to reinforce medication counseling may be a useful intervention to overcome caregiver comprehension challenges caused by the stress surrounding a hospitalization.

A key barrier for stakeholders was missing, incorrect, or inconsistent information in written medication instructions. Prior studies conducted in caregivers of children with medical complexity reached similar conclusions, but also emphasize that extraneous or unclear information is equally problematic.^15,29  Medication discrepancies between hospital discharge paperwork and the pharmacy is, unfortunately, common.⁵  Discrepancies in pediatric discharge documentation are found in 19% to 26% of encounters with medication details frequently omitted.^5,30  Unaka et al examined the discharge instructions from a single institution and found that instructions were often missing key elements for a safe discharge and often targeted a 10th grade reading level, rendering the instructions inaccessible for many US parents.³¹  Redesigning written discharge medication instructions to include all elements of safe medication administration (Table 4) and accounting for low health literacy in verbal and written instructions could improve patient safety during a high risk time for errors. The conceptual framework developed through this qualitative analysis can be used to prioritize the development and testing of interventions to improve the quality of discharge medication counseling.

Our findings should be considered in light of several limitations. Our study was conducted at a single, quaternary care children’s hospital and experiences at other institutions or settings may differ. Although we included English and Spanish speaking caregivers, we were not able to include caregivers speaking other prevalent languages (eg, Arabic). These caregivers may have unique challenges not captured in this study. A limited number of Spanish-speaking caregivers were included, but interviews were rich with consistent themes identified.

By including the views of both caregivers (including 41% with limited health literacy) and clinicians, we gained a comprehensive understanding of the discharge medication counseling process at our institution and identified important targets for improvement. Using data from this study, we aim to develop a novel health-literacy informed communication intervention that includes a patient-specific, written medication instruction sheet with a pictogram of a liquid dosing syringe, teach-back of all elements of safe medication administration, and demonstration and show-back of proper liquid medication administration.

Ms. Safia Mirza and Ms. Mariah Sanders facilitated focus groups and individual interviews and conducted data coding and analysis.