Parent Perspectives on Sharing Pediatric Hospitalization Clinical Notes

In this qualitative study, we conducted in-depth interviews with parents of children hospitalized on a tertiary children’s hospitalist service in April 2019. Audio-recorded interviews were transcribed and coded by 2 researchers using thematic analysis.¹⁴  These researchers developed and iteratively refined a codebook with validation by a third researcher. Codes were analyzed into emerging themes until achieving thematic saturation.¹⁵ 

On the hospitalist service, pediatric interns write all admission and progress notes using standardized note templates. Enrolled parents could view these notes immediately after attending cosignature on an inpatient portal (MyChart Bedside, Epic Systems). This portal provides parents with real-time medical information from their child’s electronic health record (EHR).¹⁶  Since 2014, the portal has been made available to all families at this hospital through bedside tablets (Apple iPad 32 GB) during their stay.^7,17,18  The portal retained previously described functions; however, note-sharing was enabled specifically for this study. Notes written by students, nurses, consultants, and other staff were not shared.

On the basis of published differences in ambulatory note access,^5,19  parent participants were recruited using purposive sampling²⁰  to capture a racially and ethnically diverse parents with children hospitalized for a variety of acute and chronic conditions. Parents were eligible if they self-identified as English-speaking and had a child aged <12 years with an anticipated length of stay of >24 hours. Non-English-speaking parents were excluded because of limitations in the technology to translate note content. Parents of children aged >11 years were excluded because of legal limitations in access to private adolescent health information. Parents of children admitted with suspected abuse/neglect were also excluded.

Parent eligibility was assessed through EHR screening and confirmed with the attending physician (ie, whether there was concern for abuse). Eligible parents were approached by their nurse asking permission for a researcher to discuss the study. If permission was granted, a researcher explained the study and obtained written informed consent. Then, the researcher turned on the note-sharing capability, instructed the parent on how to find a note, and administered an enrollment survey. Physicians maintained the ability to withhold any note during the study.

An enrollment survey assessed parent/child demographics, previous Internet and portal use, and health literacy.^21,22  On the day of discharge, a researcher trained in qualitative methods (M.K.) conducted all 1-on-1, in-person interviews with parents at the bedside or in a private conference room. These 1-hour interviews were conducted using a semistructured interview guide (Appendix), which was developed from previous literature^6,8  and refined for clarity after piloting with 2 parents. Interviews started with an open-ended question asking what parents thought about having note access, followed by probes assessing benefits and challenges. Parents were then asked whether they would want access to notes during future hospitalizations, why/why not, and suggestions for ways to improve inpatient note-sharing if implemented broadly. Participants were given $50 for participation. The university’s institutional review board approved this study.

Interview audio recordings were transcribed verbatim by a professional transcriptionist, then deidentified and reviewed for accuracy by a research assistant (C.N.). Transcribed data were transferred to Dedoose (www.dedoose.com, v8.3.17 SocioCultural Research Consultants, LLC, Los Angeles, CA) for qualitative data management.

We conducted an inductive and deductive thematic analysis²³  of transcript data to identify benefits and challenges of and strategies to support note-sharing. To corroborate data during analysis and minimize disciplinary biases, 3 researchers trained in qualitative methods contributed to analysis (M.K., C.N., C.S.). Two researchers first read all interview transcripts independently, taking notes on all benefits, challenges, and improvement strategies mentioned by participants. All 3 researchers then met and created a preliminary codebook of codes, definitions, and exemplary quotes. Two researchers then independently coded 5 transcripts, meeting after each to develop and refine the codebook. These 2 researchers used the final codebook to independently code all transcripts. All 3 researchers met throughout the analysis process to review the coding and reach consensus over any discrepancies, always referring back to the transcripts.^24,25  Data collection and analysis occurred concurrently to allow for review of emergent themes and assess for thematic saturation.¹⁵  To further ensure rigor, an audit trail tracked methodological and analytic decisions during data collection and analysis.²⁶ 

All 36 eligible parents were approached and 33 agreed to participate (92%). Of 33 enrolled parents, 28 were included in analysis; 3 were discharged before note release and 2 were unavailable to complete the interview before discharge. Parent (n = 28) and child characteristics are shown in Table 1. Parents were predominantly female (75%) and aged <40 years (79%). Approximately half had limited, marginal, or inadequate health literacy (46%). Children had a wide range of previous hospitalizations and reasons for admission. Median length of stay was 2 days (range, 1–18 days). All parents read at least 1 note; most accessed 2 to 5 notes (64%). No notes were withheld from a parent during the study.

Parents described 6 benefits of having access to notes, including that the information in notes: provided a recap and improved their knowledge about their child’s plan of care, enhanced communication, facilitated empowerment, increased autonomy, and incited positive emotions (Table 2).

The most frequently mentioned benefit was having a recap of the “game plan” and goals of care. This recap served as a memory aid, helping some parents refer to decisions that were made and keep track of their child’s progress during an often hectic and overwhelming time: “When we were admitted, our room was like a revolving door. There were so many people coming in and out, different teams, different specialties. It was really hard for me to keep track of what day it was, let alone what was going on with my son. And it was nice having access to those notes and say, ‘Okay, yep, I remember talking about this,’ because it was really overwhelming” (Parent 23).

Many parents reported that notes improved their knowledge and provided them with “the right words” to describe their child’s condition and treatment. This information allowed parents to ensure accurate communication with the health care team, their child, and others who could not be present (eg, a spouse, teacher, or school nurse). One parent described how she used the information in a note to reassure her child: “I could be able to tell her and explain to her, you know, a little bit better, and so that she wasn’t quite so afraid” (Parent 27). Another parent described using notes to “hand off care” to a spouse who was coming in to stay with their child overnight.

Armed with this information, many parents felt more empowered as an important member of their child’s health care team. One father described his experience interacting with a nurse who was responding to an alarm in the middle of the night: “Last night, his [oxygen] kept dipping below 90 … the night nurse came in, was like, ‘Oh, no, it’s below 90.’ And I was like, ‘Well, in the notes, it said that 88 is okay.’ I was able to facilitate information that didn’t get to the nurse who was responding to an alarm … It made me feel more of a part of the health care team” (Parent 5). Some also felt that the information within notes helped them answer questions and rely less on staff, which increased their autonomy. Almost all parents thought that having notes incited positive emotions, such as increased confidence and trust in their child’s health care team, and decreased worry and anxiety.

Challenges were mentioned far less frequently than benefits. Four challenges were elicited from parents, including that the information in notes: caused confusion, hindered communication with the health care team, highlighted problems with note content, and could incite negative emotions (Table 3).

Many parents voiced confusion when seeing medical jargon in notes, which led some to seek information online. Others mentioned that, in some cases, notes hindered communication; for instance, when new information was revealed in notes before face-to-face communication or when there were discrepancies in information communicated in notes (versus in-person). Some parents voiced concerns about problems with note content, such as incomplete, excessive, or outdated information. Although some parents reported note inaccuracies in interviews, none reported these to the health care team.

Many parents thought notes could theoretically incite negative feelings, particularly in certain situations, such as when the diagnosis was “bad” or unclear, if their child was “severely ill,” or when medical terms were particularly confusing or perceived in the wrong way. In these cases, parents thought notes could cause anxiety, worry, or fear: “The only negative would be is if you don’t have any knowledge of medical terminology … some of that could be scary” (Parent 27). Others felt that seeing information in writing, such as a long list of medical problems or new diagnosis, may be more difficult than hearing it: “It’s a little harder having it in writing” (Parent 2). Despite any actual or theoretical challenges, all parents wanted access to notes during future hospitalizations.

Parents recommended 4 strategies to support note-sharing during hospitalization (Table 4).

Parents recommended that staff communicate with parents on admission or just before note release regarding what to expect. This could include a “disclaimer” or “orientation video” reminding parents that notes are meant primarily for communication among clinicians, the timing of their release may vary, and questions about note content can be answered by the team during rounds the next day. Some parents suggested using a “sample note” to explain the typical parts of a note. Parents also recommended that physicians receive training, such as setting expectations about the timing of note release and avoiding acronyms or potentially offensive language (eg, using shortness of breath instead of “SOB” and “parent has difficulty obtaining medicine” instead of “parent refuses”).

Parents thought that the team should ideally communicate the care plan with parents before sharing a note whenever possible. Most parents preferred reading notes in the evening after their child was asleep and recommended that physicians sign and release notes by the evening (eg, by 5–8 PM) and no later than the next morning so that they could prepare for daily rounds: “Everyone is busy, and I get that, so, just as long as I can kind of read through [the note] before rounds came in and kind of have a heads up and [have] my questions written down” (Parent 7). All parents wanted a notification within the application or sent to their e-mail to alert them when a new note becomes available.

Parents were consistent in their recommendations to improve the note icon language and layout to support viewing. They recommended using more parent-friendly language for note names (eg, admission note instead of “H&P”) and template headings (eg, “updates from overnight” instead of “subjective”). They also endorsed moving the assessment and plan to the top of the note (eg, Assessment, Plan, Subjective, Objective instead of Subjective, Objective, Assessment, Plan format) and employing collapsible headings so parents could expand for more information, if desired (eg, list of past medical problems). Some recommended changing the text color for test results to avoid unnecessary worry (eg, avoid red for abnormal vital signs and laboratory values).

Although some parents suggested modifying documentation for parent readers (eg, avoiding medical jargon, and using parent-friendly terms and objective and inoffensive language), others were concerned that modification might impair health care team communication or cause physicians to spend too much time writing notes. One parent describes this tension: “If [notes were] specifically for parents, there might be some things I would change, like those medical terms, but … I think [this would] just cause more time for the doctors to spend writing notes than being with patients or doing other things” (Parent 24).

Finally, parents recommended including educational resources within the application or on the tablet to prevent broad information-seeking online. Suggested resources included: standard ranges for vital signs and laboratory values, a glossary of frequently used medical terms and abbreviations, and trusted resources for common inpatient diagnoses. Ideally, parents preferred medical terms within the note to link out to online definitions and further information.

Our findings provide a framework to optimize note-sharing with parents during their child’s hospitalization. These results have important implications, not only for children’s hospitals working to comply with federal regulations requiring note-sharing,¹  but also for EHR vendors (re)designing inpatient portals and researchers looking to systematically assess the effects of increased information transparency in the inpatient setting.

Although stakeholders anticipated some of the potential benefits and challenges of sharing before releasing notes in previous studies,^6,8  this study presents parent experiences on the basis of the actual use of notes after implementation. After experiencing access to notes, all parents in the current study felt that the benefits outweighed the risks and wanted access to notes during future hospitalizations. Our findings build upon those reported in studies with outpatients^2,5,19,27,28  and adult inpatients,^29–32  notably that access to notes may play a role in improved parent engagement in their child’s care and influence their relationship and ability to communicate with their child’s physician. Although parental confusion did arise, most challenges remained theoretical. Parents expressed gratitude for having access, as well as increased knowledge of their child’s condition and trust in the child’s health care team as a result. Benefits and challenges elicited from this study may further inform the selection of patient- and family-centered outcome measures for future comparative effectiveness studies.

Parents made multiple practical recommendations that may ease the implementation of note-sharing in hospitals. Although parents were hesitant to recommended that physicians limit all medical jargon for parental benefit, physicians may be able to take advantage of built-in EHR features and template modifications to improve readability (eg, reword note titles, change text color, use collapsible headings, include assessment and plan at the top of the note^33,34 ). Automated expansion of common abbreviations may improve parent comprehension of medical terminology, as has been shown with adult patients reading notes.³⁵  To support parent knowledge and empowerment and mitigate confusion and worry, inpatient care teams should set expectations for parents upfront. Hospitals should also consider including information within their admission materials to communicate the primary purpose of notes, what to expect within them, when to expect their release, and whom to ask if questions or concerns arise. Finally, to avoid confusion and delay and further enhance transparency, physicians should ideally communicate the care plan with parents before note-sharing, such as during family-centered rounding, whenever possible.

Previous research questioned how note-sharing would impact those with limited education or health literacy, and suggested that advancing Web-based health technologies may worsen the “digital divide.”^36,37  Recent findings suggest that these vulnerable populations may instead benefit the most from note access, at least in the ambulatory setting.^5,19  Nearly half of parents in our sample had limited health literacy, and yet all wanted to continue to have access to notes in future hospital stays. The question of whether and how access to notes may differentially be used and impact health outcomes for vulnerable populations, including hospitalized patients and caregivers with limited English proficiency, education, and health and digital literacy, deserves further investigation.

This study has limitations that should be considered. It was conducted with a purposive sample of available, largely non-Hispanic, white parents on a hospitalist service at a single center. Although all parents identified as English-speaking, almost half had limited health literacy. Their perspectives may or may not be representative of the overall parent population at this and other hospitals. Although findings from in-depth interviews are not intended to be generalizable, this type of qualitative inquiry provides the rich, contextual information necessary to inform the development of strategies to support note-sharing. Only parents of children aged <12 years were recruited in this initial study and parents had varying exposure to notes. Further, at the time of the study, medical student notes were not included as part of the formal medical record at this institution and were not shared. Future studies are needed to evaluate note-sharing with other patients and caregivers (eg, adolescents, those in critical care) and notes written by other hospital staff and providers (eg, students, nurse practitioners, subspecialists).

The simple act of inviting parents to access notes may counteract the uncertainty and disempowerment inherent to pediatric hospitalization and serve to reassure and empower parents.¹²  Large, multicenter interventional studies are needed to determine the effects of note-sharing practices on outcomes important to patients, families, and the health care team.

EHR

electronic health record