Open Notes Experiences of Parents in the Pediatric ICU

Abstract

OBJECTIVE

We examined how parents experience and navigate open access to clinical notes (“open notes”) in their child’s electronic health record and explored their interactions with clinicians during an ICU admission.

METHODS

We performed a qualitative analysis using semistructured interviews of English-speaking parents who accessed their child’s clinical notes during a pediatric ICU (general or cardiac) admission. We included patient-parent dyads with an ICU admission ≥48 hours between April 2021 and December 2022, note access by proxy timestamp during the ICU course, and either patient age <12 years or incapacitated adolescent ages 12 to 21 years. Purposive sampling was based on sociodemographic and clinical characteristics. Phone interviews were audio-recorded, transcribed, and analyzed using inductive thematic codebook analysis.

RESULTS

We interviewed 20 parents and identified 2 thematic categories, outcomes and interactions, in parents accessing clinical notes. Themes of outcomes included applied benefits, psychosocial and emotional value, and negative consequences. Themes of interactions included practical limitations and parental approach and appraisal. The ICU context and power dynamics were a meta-theme, influencing multiple themes. All parents reported positive qualities of note access despite negative consequences related to content, language, burdens, and lack of support. Parents suggested practice and design improvements surrounding open note access.

CONCLUSIONS

Parental experiences with open notes reveal new, unaddressed considerations for documentation access, practices, and purpose. Parents leverage open notes by negotiating between the power dynamics in the ICU and the uncertain boundaries of their role and authority in the electronic health record.

What’s Known on This Subject:

Federal mandates require clinicians to share clinical notes with patients and their caregivers. Parents have reported benefits and negative consequences from note access during pediatric hospitalizations. How these effects translate to critical care settings is unknown.

What This Study Adds:

Parents’ experiences with open access to their child’s clinical notes are characterized by interactions between role and power in critical care settings. Our findings highlight existing gaps and inform practice and design interventions to optimize health information delivery to parents.

The 21st Century Cures Act¹ was developed to modernize digital health infrastructure. The Cures Act Final Rule, implemented in April 2021, prohibits information blocking and requires timely patient access to all health information in the electronic health record (EHR). Open access to clinical notes (“open notes”) has primarily been studied in adult and outpatient settings, with favorable effects on patient engagement, empowerment, relationships with clinicians, and safety.^2–7 Furthermore, benefits are prominent among groups experiencing disadvantage, primarily those who are less educated, Black, or Hispanic.^2,3,5,8 There are limited studies of note access in pediatrics despite the major implications of this information sharing on patient-family-provider dynamics.^9,10 The pediatric inpatient setting is unique, as care inherently depends on surrogate decision-making by parents.¹¹ Additionally, EHR proxy access among adolescents is fraught with ethical challenges related to privacy and autonomy.^12–16

Recent studies report the largely positive experiences of parents using open notes outside of the ICU setting.^17,18 In the ICU, written communication of complex patient information can improve family satisfaction and emotional well-being.¹⁹ However, it is unknown how open notes will influence, overlap, or replace current inpatient verbal communication.²⁰ There is a need to evaluate how information-sharing processes and experiences in the ICU have changed since the Cures Act was implemented.

We aimed to understand parents’ experiences with open notes in the ICU, examine how parents navigate clinical notes in their child’s EHR, and explore their interactions with clinicians. Our study considers the lived experiences of parents and focuses on intrinsic and extrinsic factors contributing to their access to and use of clinical notes.

Methods

Our study adhered to the Standards for Reporting Qualitative Research checklist (Supplemental Table 6).²¹

Setting

This study was conducted at a quaternary, academic, free-standing pediatric hospital with a 40-bed general ICU and 16- to 24-bed cardiac ICU, using the Epic (Epic Systems Corporation, Verona, WI) EHR. Parents and legal guardians accessed their child’s EHR as a proxy through MyChart (Epic Systems Corporation, Verona, WI), an online patient portal integrated with the hospital’s EHR platform. All notes were shared via MyChart immediately upon signing.

Study Design

We performed, under a constructivist paradigm, exploratory, qualitative, semistructured interviews of parents who accessed clinical notes through MyChart during their child’s ICU admission between April 2021 and December 2022. Additional details of our institution’s study setting and data criteria are found in Supplement 1.

This study was approved by the Washington University in St Louis Institutional Review Board.

Participants and Sampling

Our study population included English-speaking parents or legal guardians of patients admitted to the pediatric (general or cardiac) ICU for ≥48 hours. Patients were either age <12 years or permanently incapacitated adolescents (confirmed by chart review) between ages 12 and 21 years. We excluded parents of competent patients ages ≥12 years because of the legal and ethical distinctions associated with adolescent note-sharing. Decedents and patients under state custody were also excluded. Proxy access of at least 1 inpatient clinical note during ICU admission was confirmed by EHR timestamps. Inpatient clinical notes were defined as nontelephone or messaging documentation published by a hospital care provider. Parents were contacted by telephone at any time after patient discharge from the ICU. We queried our institution’s Epic Clarity (Microsoft SQL) database in April and December 2022 to identify patient-parent dyads. We collected patient EHR clinical and demographic information to facilitate purposive sampling for parent selection and recruitment. Quota characteristics were derived from existing literature describing disparities in the use and benefits of portal and note access by race, ethnicity, education level, and socioeconomic vulnerability.^8,22,23 Our target minimum quotas were based on our institution’s portal activation demographics and reflect the local population. Purposive quota sampling²⁴ ensures key, diverse viewpoints to enrich data quality. A phone script was used for recruitment and screening questions confirmed proxy access and legal guardianship. Eligible parents provided verbal informed consent and participants received a $20 electronic gift card as compensation.

Data Collection

All parent participants completed an online demographics survey using REDCap (Research Electronic Data Capture, 13.1.28, hosted by Washington University School of Medicine) before the study interview. A semistructured interview guide (Supplement 2) focused on how and why parents accessed their child’s notes in the ICU, changes in their interactions with clinicians, and feedback for improvement. It was informed by existing survey and interview guides,^25–27 tested with 2 parents, and revised for flow and clarity. Subsequent amendments to the interview guide were made as iterative themes of interest were identified.²⁸ All interviews were conducted over the phone and digitally audio-recorded with verbatim, offline transcription through the Google Recorder app (Google, Mountain View, CA). Transcriptions were individually reviewed, deidentified, and edited for accuracy.

Researchers

Our research team was comprised of a pediatric critical care fellow with board certification in hospice and palliative medicine (S.C.), a pediatric oncologist, bioethicist, and experienced qualitative researcher (B.S.), a pediatric intensivist and experienced qualitative researcher (A.K.), and a pediatric intensivist and bioethicist (J.M.). S.C. created the interview guide, conducted and transcribed all interviews, performed study sampling, and recruited and screened all participants. S.C. provided direct ICU care for some patients before study enrollment.

Data Analysis and Rigor

We performed an inductive codebook thematic analysis to identify salient concepts and overarching themes (Supplemental Fig 2).^29,30 All qualitative data management and coding was done on Dedoose (v9.0.17, SocioCultural Research Consultants, LLC, Los Angeles, CA) by S.C. and A.K. Both coders met regularly to review codes, discuss discrepancies, and iteratively update the codebook. Codebook refinements were made until reaching thematic saturation,^31–33 which we defined as no new codes produced and no further adjustments to code definitions. Investigative rigor was achieved through reflexive journaling throughout the study process, investigator triangulation with debriefing of qualitative methods and data analysis, memos taken during coding, and an audit trail of codebook adjustments.³⁴

Results

Our Epic database query yielded a total of 2396 note access timestamps among 108 unique patients (Fig 1). Of the 43 parents contacted, 20 parents were interviewed Supplemental Table 7). Interviews averaged 41 minutes (range 28–73 minutes) (Table 1). Most were mothers (80%), and median (range) age was 35 years (22–57 years). Parents were predominantly white (80%), married or partnered (65%), and received a degree beyond high school (85%). Notes were accessed a median (range) of 11.5 times (1–82). Patients were mostly white (70%) and were admitted to the general ICU (75%). ICU lengths of stay were a median (interquartile range) of 192 hours (130–429 hours).

FIGURE 1.

Study recruitment protocol.

TABLE 1.

Summary of Parent and Patient Characteristics

Parent Characteristics	Total (n = 20)	%
Parent age (years)
18–29	4	20
30–39	11	55
40–49	4	20
50+	1	5
Parent sex
Female	16	80
Male	4	20
Relationship to patient
Mother	16	80
Father	4	20
Parent race and ethnicitya
White	16	80
Black or African-American	4	20
Native American, American Indian, or Alaskan Native	2	10
Hispanic or Latinx	1	5
Marital status
Married or partner	13	65
Single or never married	4	20
Divorced	2	10
Widowed	1	5
Education level
Some high school, no diploma	1	5
High school diploma or equal	2	10
Some college, no degree	5	25
Associate’s	6	30
Bachelor’s or higher	6	30
Employment status
Employed, full-time	11	55
Employed, part-time	4	20
Not employed, looking for work	1	5
Not employed, not looking for work	1	5
Unable to work	2	10
Prefer not to answer	1	5
Annual household income
<$20 000	3	15
$20 000–$39 999	3	15
$40 000–$59 999	2	10
$60 000–$79 999	3	15
$80 000–$99 999	2	10
≥$100 000	7	35
Insurance type
Managed care	8	40
Managed Medicaid	7	35
Medicaid	4	20
Other	1	5
Note access count
1–4	4	20
5–9	4	20
10–19	3	15
20–49	4	20
50+	5	25
Time from ICU discharge to interview (days)
1–7	2	10
8–30	2	10
31–60	2	10
61–180	7	35
181–365	5	25
>365	2	10
ICU location
General ICU	15	75
Cardiac ICU	5	25
Patient age (years)
<1	6	30
1–3	7	35
4–11	5	25
12–21	2	10
Patient sex
Female	10	50
Male	10	50
Patient race and ethnicitya
White	14	70
Black or African-American	5	25
Hispanic or Latinx	2	10
Native American, American Indian, or Alaskan Native	1	5
Admission problem
Respiratory	7	35
Cardiac	4	20
Neurologic	4	20
Sepsis	4	20
Oncologic	1	5
ICU length of stay (hours)
48–120	5	25
121–240	7	35
241–480	3	15
>480	5	25

^a Multiple race and ethnicity selections available.

We identified 2 categories of themes in parents’ experiences with accessing clinical notes: outcomes of reading notes and interactions with the medical record. Themes of outcomes included applied benefits, psychosocial and emotional value, and negative consequences. Themes of interactions included practical limitations and parental approach and appraisal. Definitions and representative quotes of themes for outcomes and interactions are presented in Tables 2 and 3, respectively. The ICU context and power dynamics were a meta-theme, spanning multiple themes, and its subthemes with definitions and representative quotes are detailed in Table 4.

TABLE 2.

Themes of Outcomes of Reading Notes, With Definitions and Representative Quotes

Themes	Definitions	Quotesa
Applied benefits, n = 6
Coordinate care	Coordinate care and ensure follow-through of plans, anticipate needs, and leverage support services and clinicians	I think some doctors aren’t always open to a parent providing input based on their child’s past experiences … [You] see the notes that you don’t agree with, and that prompts me as a parent to contact our palliative care team so they can come and help advocate for my child. (Parent 9)
Corroborate information	Corroborate or supplement information across sources for comprehensiveness, consistency, and credibility	We’ve had providers that have stopped in and they spend 15, 20 min in your room … and you have no idea what they were actually thinking … As a parent, it was great to be able to read that and feel reassured that what they are telling me in person is also what they’re putting in their notes. (Parent 1)
Share information	Easy to receive, share, and organize information or perspectives across stakeholders, inside and outside of the hospital	[I]n his notes … they would describe … that he’s autistic, and the things that he does or doesn’t like. So, that made it easier for me. Because, when you have a child that has epilepsy or on the spectrum, you’re always explaining to people that this is who he is, and this is how he’ll react to them … I didn’t have to explain it every time. (Parent 12)
Platform for engagement and learning	Establish a platform for engagement and learning, generate questions, and increase exposure to medical terminology	Those notes help me to understand a little bit better … how my daughter’s body is reacting based on the condition that she’s got … the technical detail is where the notes helped me the most ask those questions. (Parent 5)
Framework for oversight and monitoring	Provide a framework for oversight and monitoring of progress, changes, or gaps; functions as an orienting and discriminatory resource	I was just really trying to understand the terms of the ventilator … I was associating every noise, every word … anything that seemed negative, was automatically bad in my mind, even if they assured me it wasn’t. And so, I was digging deeper trying to understand what these things were … instead of just labeling them all as bad. (Parent 7)
Reference and bandwidth resource	Serve as a comprehensive reference available for study and review; spares parental bandwidth for information and memory	I can go back to even previous hospital stays … This is what we did, here’s the notes from that doctor at the time … You can look back and I can give them a date and a time and a lot of times they’re able to go back and say, “Okay, let me go read those notes. I didn’t read that. I’ll go back and look.” (Parent 9)
Psychosocial and emotional value, n = 5
Trust and transparency	Enhance trust and transparency through validation of parental concerns and feelings; offers reassurance of quality care	Sometimes people think of doctors as unapproachable, but … they’re just people too. I can read this. I can approach them. I can have faith that because of what they’re telling me and this note document, that they are doing what is best for my child. They have her best interests at heart just like I do. (Parent 7)
Comfort and connection	Provide comfort as a reliable resource that allows for reflection and connection away from the bedside	[T]he notes make me feel good because … it shows that there’s nothing to hide … Because sometimes you forget how many good days they had versus all the bad days we had there … And it helps remind me that she’s done so good before, that she can turn around and do good again … Like a hope. (Parent 14)
Empowerment through partnership	Support parental empowerment through engagement and partnership; shrinks relational distance with efficient encounters, humanizes clinicians, and bolsters parental knowledge and respect	I’m a little bit more trustworthy because I’m not worried about all the things that I don’t know and if people are or aren’t holding information back to me or if they’re giving me the full picture. I feel like I’m … more equipped to participate in the planning and giving my perspective on [patient’s] status. (Parent 13)
Control and anticipation	Regain a sense of control and reduce uncertainty with the ability to anticipate or steer conversations	[T]hat’s the only type of control I had during his care … [M]aybe I wasn’t able to be there during the rounds, I could see what they wrote in the notes and what the plan of care was. I was able to read … about like, maybe how his day went … anything that they did to him, I was able to see it. (Parent 15)
Legitimizing	Legitimate and credible resource from which to build expertise, and foster acceptance or agreement	It was very hard for me to accept the fact that we were going down a transplant route … And then, seeing it in writing, it just is all real … I was just in denial that that’s the route we would be taking. But the notes definitely reflected that that would be the path. That he was in failure. The failure was getting worse. (Parent 22)
Negative consequences, n = 5
Inconsistent or inappropriate	Inconsistent or confusing information may exacerbate worries, sow doubt; inappropriate or unexpected content may be intrusive, threatening	These were PT, OT notes where I just wondered what they were saying about his progress and, all of a sudden, I see all this personal family information … stuff that was completely irrelevant. So then, I started watching very closely his notes because, not that I have anything to hide, but if it’s not pertinent to his health or health care or his current situation, I’m not sure why it would arrive in a chart. (Parent 16)
Burdens and bias	Overwhelming information with pressure to learn under duress may expose uncertainty, trigger hypervigilance, and reveal biases or misrepresentations that provoke self-consciousness	I find it really helpful but it’s also really overwhelming because I’m not a doctor. (Parent 4); I think it was a nurse [who] put a note in there that said that I was not coming to bedside as much as I was supposed to. (Parent 6)
Medical literacy, semantics, and tone	Jargon and abbreviations challenge medical literacy and comprehension with language that may be construed as intimidating or impersonal	[M]y comprehension is not very good with big, long terms … and then that gets kind of discouraging because sometimes, when I look stuff up, it gets mistranslated and stuff like that. So, it’s kind of difficult to fully understand what is going on. (Parent 10); It could be very harsh because the way I saw a lot of those notes, kind of how technical they were, it feels a little bit heartless, but I understand that’s not the purpose of it. (Parent 5)
Errors, omissions, and conflict	Errors, omissions, and conflicts are often specific to social interactions, clinicians, or perceived falsified information. Parental reactions vary and may damage trust, or provoke anger, frustration, disappointment	I would see other kids’ names in [the notes]. I mean, it’s one of those things where I do not expect perfection from anyone … I did correct several errors where I thought there could be potential for harm … [A]s I was paying attention to the notes, I would notice more mistakes and that prompted me to not leave [the room]. (Parent 21)
Unsupportive environment	Feel unsupported because of a lack of instruction or resources, with concerns of hostility and insecurity around correcting or confronting clinicians	I really don’t like correcting physicians and so that makes it difficult when we know the information before they do … And I don’t think they like that either. (Parent 17)

OT, occupational therapist; PT, physical therapist.

^a All quotes edited for clarity.

TABLE 3.

Themes of Interactions With the Medical Record, With Definitions and Representative Quotes

Themes	Definitions	Quotesa
Practical limitations, n = 5
Design flaws and technical issues	Design and organization flaws, technical issues with account sharing and connectivity, all hamper usability	I don’t always know who is whom on those [progress] notes? And it’s hard to go from one to the next … I don’t always remember where I was in the list … I kind of have to hunt around in that list, to be like, okay, this – I read this one. This one needs to be read still. (Parent 20)
Unidirectional nature	Unidirectional nature limits recourse for user feedback or corrections	[I]t says that she’s had the Glenn procedure and she never has … and they told me I had to talk to somebody random … and I was like, “Okay, well I didn’t put it in there, so I don’t know how to get it off.” (Parent 14)
Supplementary and untailored tool	Supplementary tool untailored to parent needs since note quality varies with copied or auto-populated sections, and content may be vague, generic, or misaligned	[S]ome of the daily notes were “we’re watching how he does,” which is good. But some of them were vague … like I was focused more on, “Hey, this test came out looking good” versus “Today, we’re watching to make sure that he continues breathing”. Stuff like that. Still important. (Parent 3)
Limited influence on decisions and interactions	Limited influence on parents’ decision-making, care of their child, or expectations and relationships with clinicians	[D]ealing with my daughter’s care is not going to just be based off of notes. Any little thing can happen and you have to … change [the] plan of care … because anything can happen in between the time that the notes was made or when I read them. (Parent 18)
Sharing restrictions	Information is well-protected and safeguarded but sharing may be overly restrictive between systems	No one’s gotten into it yet that I know of … I got a different phone, and I couldn’t get in and had to make a phone call to get access to it. So, I mean it was pretty secure. (Parent 11)
Parental approach and appraisal, n = 6
Parental agency	Use and solicit available resources for guidance or interpretation, and otherwise take a deliberate approach to notes with context clues and pattern recognition	[The team] would talk to me about his findings in his urinalysis, and I would look at the note and then Google because I didn’t understand it. And if I still didn’t understand with Google, I would ask a nurse about it and she would … help me understand it better. (Parent 12)
Easy and understandable	Easy and convenient to set-up, access, and use, especially with the phone app. Content is generally understandable.	[I]t is convenient. I can always go back and look and read back through it. It’s just there. (Parent 18)
Haphazard discovery	Haphazard discovery or referral to notes is biased to families with health backgrounds, frequent exposure, or personal MyChart use	I can’t remember how I discovered that, but no one really explained how to get to everything in the MyChart. I just kind of fumbled upon things by just clicking. (Parent 10)
Navigation and triggers	Access is triggered by app notifications, events, uncertainty, or status changes. Navigation builds familiarity with note organization and approaches vary between chronologic review, trial and error, and scanning for new content. Test results or reports are viewed separately and accessed more often than notes.	Anytime I got a notification that I had a new note or new test results, I would go, and I’d look at them … Or, if I had a little downtime, I would go in and look, especially … anything that took a little longer for me to read and comprehend. (Parent 20); [Y]ou have to scroll through all that default stuff … [S]ince I read it so many times, I know where it kind of ends. (Parent 20)
Information flow	Information flow is altered and leveraged according to parental role and needs, related to parental expectations and desire for accountability	I feel like the doctors … when they’re trying to explain it to you in person, they … put it into a jargon that you’re going to understand as a parent and not as a doctor. But when you go into the note, it has every little detail … [and] reading that is a lot better for me … I like to know every little detail. (Parent 8)
Note appraisal	Notes are considered representative of experiences, acuity, and team familiarity with the patient. For parents to safeguard note content, they must rely on clinicians for accurate documentation and points of focus.	[W]henever it came to people putting down the necessary information that you have to read, it hurt me more to see my daughter going through it than the truth be put within the system, and that makes sense. Where I could see how other parents may not be able to separate the 2. And that could become something difficult for them to kind of understand, comprehend, especially in moments where you’re just very, very down. (Parent 5)

^a All quotes edited for clarity.

TABLE 4.

Meta-theme of ICU Context and Power Dynamics, With Definitions and Representative Quotes

Subthemes	Definitions	Quotesa
ICU burdens	Burdens of the ICU are unsparing; families, clinicians, and resources are all under constraints. Parents are in an unfamiliar environment or situation, experiencing uncertainties, stress, and intense emotions.	It was a little overwhelming because obviously when you’re in the ICU – yes, it’s a little more 1-on-1 with the patients, but everyone is busy and hospitals are understaffed. And so, I’m not one that, unless it’s an emergent situation, I’m not going to go ask somebody for something, and so I’m like trying to figure out and read what I can and understand what I can. And we all know, the wonderful thing about smartphones is being able to look up online what words mean. And that is not always such a good thing when you’ve got a child laying intubated in a bed in the ICU. (Parent 7)
ICU complexity and medical hierarchy	ICU care is complex, dynamic, and susceptible to errors. Medical hierarchy challenges consensus-building and shared decision-making, and imposes practical limitations on clinician availability, communication, and team dynamics, whereas parents feel limited in control, role, and decision-making.	[I]t was just a snowball effect, and then, it wasn’t just the ICU team involved. It was cardio. It was neuro. It was gastrointestinal. It was nephrology, it’s a lot of specialties involved and sometimes when that happens, the specialties, as much as we would hope that they talked to each other, sometimes they don’t. (Parent 1)
Patient complexity and vulnerability	Patients experiencing disadvantage because of medical complexity, race, ethnicity, and socioeconomic status have extraordinary care and coordination needs with smaller margins for error.	It is a lot. Anytime you have a complex child with so many hospital admissions and so many providers … I don’t feel like you can ever really relax … [S]taying up-to-date on all of his changes is very hard, and to have something that I could turn to when I forgot what somebody said, or maybe I just need a refresh, with where he’s at on his therapy … There’s no way that I could provide him the level of care, as his mother and now as his home health nurse, without having access to those notes. (Parent 13)
Parental preferences and role	Parents demonstrate a range of help-seeking behaviors, communication preferences/styles, and self-perceived roles. They may be monitored or judged according to the expectations of a parental archetype.	[M]y only control is being involved with the plan of care and helping make decisions. So, if you made a change, I feel like you tried to make a decision without me. If it’s a decision that I can be involved in, I want to be involved in [it]. Don’t make medical decisions without me. (Parent 15)
Accommodation and adaptation	Parents accommodate clinicians’ time and attention limits and are considerate of clinician burdens, use of jargon and shorthand. They adapt to the immediacy and responsiveness of an ICU.	I knew if there’s something I missed when I’m talking to them, or if I had a simple question, I can always go back and look at the app first and I might not have bothered. Because I know they’re busy. They got a lot of patients. You know, it possibly saves them time. (Parent 11)
Variable information processes	Timing of information release varies according to information type, setting, and health system. Variable perceptions and preferences on criteria for note release and timing exist alongside limited clinician awareness or expectations of parental note access.	[T]here’s still a lot of information that’s not available on that system and certainly delays where somebody has to click “Accept”. And so, there’s a lot of instances where I get the information a lot later than when I would have potentially been given an opportunity to ask questions from the actual provider. Not that they necessarily want all the questions that I have. (Parent 21)
Disparities and privilege	Disparities in discovery, access, use, and interpretation of notes can be seen with privileges, including connections to health professionals, and other racial and socioeconomic disparities.	[B]eing a worker of the NICU … it just makes you … be more careful and just understand other people’s side of it. And to know that we need to actually watch what we’re writing in here and what we’re doing, or make sure that, what we’re saying we’re doing … And sometimes it just makes me sad because not everybody has this knowledge that we have … by working there, not everybody knows what to look for or what to question or what not to question … I’m blessed to know what I know, but I just wish everybody knew what I knew. (Parent 15)

^a All quotes edited for clarity.

Outcomes of Reading Notes

Applied Benefits

All parents reported benefits from note access that facilitated their subjective ability to function and care for their child in the ICU. Parents were able to coordinate care by updating clinicians with new information, ensuring follow-through of care plans, and obtaining consensus on next steps. They frequently used notes to corroborate information across in-person sources, such as physicians and nurses, and online resources through social media or Google. They compared verbal communications with documentation. Note access allowed for easy sharing of information with stakeholders outside of the hospital, including family, friends, primary care clinicians, outpatient therapists, and home health services, both during and after ICU stays. Notes facilitated parental engagement, improved parents’ self-perceived understanding, triggered questions, and identified knowledge gaps. The information provided an operational framework, helping to track progress and orient monitoring efforts. Notes spared parental bandwidth, serving as a memory tool to accommodate the heavy cognitive load demanded by the ICU.

Psychosocial and Emotional Value

Parents found immense value in their ability to maintain connection while away from the bedside. Information transparency fostered trust, inspired confidence, and offered reassurance of high-quality care. Many parents highlighted the ability of notes to validate their concerns and empower them as experts on their children. They felt legitimized as care team partners, rendering clinicians more approachable. Reading notes also conveyed parents’ engagement to clinicians, bolstering parents’ efforts to gain respect. Notes produced a sense of control from improved anticipation and fluency to dictate discussions. To some parents, notes that specifically acknowledged their bedside presence or involvement were considered a potential source of support in custody disputes.

Negative Consequences

Despite parents’ unanimous support for note access, they also described negative consequences of reading notes. Some parents grew concerned when they encountered variable wording or inconsistent statements across documents, online resources, and clinicians. Many parents described the overwhelming complexity and quantity of information in notes. Most considered medical jargon to be intimidating. Some found unexpected note content, typically related to social concerns, that was deemed inappropriate or intrusive. At times, parents themselves felt misrepresented or judged, often from incorrect quotes or inaccurate summaries of parent perspectives. One parent encountered a note reporting the parent’s insufficient bedside presence.

Parents who found errors usually responded with heightened vigilance, manifesting in a closer reading of notes, more careful review of medications and care plans, or more assertive presence at the patient’s bedside. They sought corrections but were unsure how and to whom they should alert. Some parents raised the issue with staff but continued to see the error carried forward. Two parents were either met with defensive responses from clinicians or sensed that parental input was unwelcome. Parents often resigned to focusing their efforts on errors that posed the greatest safety risks. A few parents described documentation conflicts regarding problem lists and perceived falsified assessments and encounters. They found notes from specialty consultants that were never seen despite parents’ continuous bedside presence or read descriptions of physical exams by clinicians who didn’t perform a bedside exam. Emotional reactions to errors included anger, frustration, and disappointment. One parent was hesitant to disclose their use of notes to the care team, citing concern that clinicians might feel pressured in ways that increase the risk of medical errors.

Interactions With the Medical Record

Practical Limitations

Parents described several limitations in the electronic platform and note content. Note design and organization hampered usability. The user interface required lots of clicks and scrolling, with 1 parent describing notes as buried from view. It also lacked functions to search and filter notes or distinguish care teams and team members. Parents pointed out their inability to make corrections or provide feedback on note content. Note content could be vague, generic, or of unknown relevance. Overall, notes were inconsistent in quality. They were frequently seen as a supplemental tool, secondary to verbal communication. Most parents felt notes lacked any role in their decision-making or relationships with clinicians. All parents felt that their child’s health information was secure. Some complained that health data sharing was overly restricted.

Parental Approach and Appraisal

Parents received little to no external guidance on how to navigate notes or use the information that notes contained. They solicited support from available resources to satisfy information needs exposed by notes, whether to clarify note content, collect supporting details, or bolster their depth of knowledge. Most found note access to be convenient and portal registration easy. However, the discovery of note access within the portal was haphazard. Study participants, many with close connections to healthcare, encountered the note access function through casual portal use or incidental referral at various healthcare encounters. Nearly all parents accessed notes primarily on their phones, where app notifications often triggered views. Many reported viewing test results more often than, and separately from, notes. Factors influencing note appraisal included patient acuity, past experiences, and team familiarity. Although distressing items in notes did not retraumatize or inflict additional harm, notes could become overwhelming; 1 parent took a brief respite from note reading during their ICU stay, unrelated to any specific negative information in the notes. Parents’ suggestions for improvement are listed in Table 5 and categorized as practice and design considerations. There may be some overlap between the 2 broad categories. Generally, practice considerations are relevant to EHR users regarding content generation and awareness, whereas design considerations appeal to EHR builders regarding portal updates and overall human-centered design.

TABLE 5.

Parents’ Suggestions for Improvement

Practice Considerationsa	Design Considerations
• Understandable language	• Disclaimer for potentially triggering content
• Improved writing clarity and explanation of condition, trajectory, and goals	• Integrated support and resources for use and contact info
• Accurate reporting of specific parent presence	• View imaging or primary documents for comparison
• Reflect parental concerns or requests consistently and accurately	• Bookmarking and highlighting capabilities
• More details and explicit documentation of clinical reasoning or background discussions	• Area for parents to provide feedback, replies, corrections, input, or history
• Standard introduction and promotion, workflow support for registration and access	• Distinct summary page or section
• Early introduction or exposure to build familiarity before critically needed	• Export function
	• Audit trail and linking of primary with consultant notes
	• Design language for intuitive movement between notes and differentiating read and unread notes
	• Fewer clicks and less scrolling to reach notes

^a Some suggestions may apply to either or both categories. The categories are meant to distinguish the considerations most relevant to users (practice) or builders (design) of the electronic health record.

ICU Context and Power Dynamics

Parents exhibited a wide range of help-seeking behaviors, communication preferences, and identities in the ICU. They were sensitive to clinician bandwidth limits and burdens. Some linked patient care complexity with limitations in their control, role, and decision-making, whereas others considered patient vulnerability to be a driving factor in asserting their role and control where possible. Parents acknowledged controversy surrounding the criteria and timing of EHR information release and considered the release process opaque across information types and settings. Some parents expressed gratitude for their convenient access to medical knowledge, fluency with technology, and availability to remain at their child’s bedside, recognizing that these privileges likely affect open notes use.

Discussion

Our findings provide insight into the many consequences – positive, negative, and indeterminate – of open notes in the ICU setting. Similar benefits and challenges were recently described by Kelly et al according to parents on a pediatric hospitalist service.¹⁸ We elaborate on the motivations and context that raise important, unanswered questions regarding parents’ open notes use.

Open notes have been thought to “extend the visit” for patients, offering them a way of revisiting information and finding clinician guidance easily.² Parents leverage notes similarly, echoing notions of extending clinicians’ bedside visits by reviewing notes or preparing questions in advance of limited face-to-face time. Open notes also disrupt the information hierarchy, democratizing healthcare and information flow.³⁵ As our study participants describe, notes do not replace verbal communication since they remain unidirectional. Nevertheless, note documentation reinforces communication quality, serving as a check for understanding and a record of accountability. Parents described the scope of note content as limited to reviewing events and discussions, rather than introducing new information. As an adjunct to verbal updates, notes helped reinforce expectations and anticipatory guidance. The primarily retrospective nature of inpatient notes may limit any potential role in parental decision-making.

Parents leverage open notes according to their perceived role in their child’s care. Parents of sick children have previously defined their beliefs of what being a “good parent” means, which includes making informed decisions, advocating for their child, and promoting health.³⁶ Notes may help parents fulfill the “good-parent” role by helping them stay informed, comforted, and involved.^36,37 However, clinician language may also hinder these efforts. Note-writing practices may not have changed with Cures Act implementation,³⁸ and our study reinforces reports of parents’ challenges with interpreting medical jargon in notes.^10,18 Parents want health literacy accommodations and innovations in artificial intelligence with large language models may offer solutions that bridge professional communications with lay comprehension.^39–41 Parents also described certain notes as having an impersonal nature and blunt narrative content. The socioemotional power of clinician language in notes is now open for appraisal by its very subjects. In racial, ethnic, and gender minorities,⁴² and low socioeconomic groups, stigmatizing language,⁴³ poor word choice,^44,45 and judgmental content in clinician notes may add psychosocial burden to parents striving to fulfill their “good-parent” duties.

It remains unclear if the benefits of open notes only apply to a self-selecting population of users. Other compelling reasons, like those reported in a study of Norwegian patient-accessible EHRs describing the impersonal, incomprehensible, misery-oriented, or fear-provoking nature of clinical documentation,⁴⁶ may outweigh the benefits for nonusers. Incomplete parental adoption of open notes may reflect clinicians’ ambivalent attitudes toward patient portal access^47,48 – rendering it visible only to certain privileged groups.⁴⁹ Despite the majority of our study group being well-educated, they still struggled with portal use and note navigation. At times, the lack of clinician guidance resulted in uncertain expectations surrounding parental note use – shrouded by tensions between professional privilege and parental permission in seemingly unfettered access. Parents' enhanced sense of partnership brings expectations of shared authority, which may be more sensitive to perceived attempts at unilateral medical decisions. If open notes access grows, the imbalance between who controls content and who suffers from content errors may drive broader questions surrounding information ownership. As boundaries over authority in the EHR continue to blur, parental concerns over uncorrected documentation errors may evolve into calls for note edits and EHR curation.⁵⁰

Our findings suggest a need to address conventional documentation practices and information processes that neglect the uncertain role parents now occupy in the EHR space. Clinical notes serve vastly different functions, spanning clinician and parent communications, billing documentation, and medical-legal records. As notes are forced to satisfy every distinct interest, the potential for notes to fulfill any specific objective is diluted. Identifying best practices will be impossible without clear, shared goals. Future studies are needed to reconsider note-writing objectives, inclusive of patient and parent needs and disparities. An updated, integrated approach toward platform design would also keep up with the rapid pace of technological advancements in our electronic healthcare reality.

Our study has notable limitations. We interviewed parents at varying times after ICU discharge, introducing recall errors. Despite reminders of the study’s ICU- and note-specific focus, parents sometimes discussed experiences outside of the ICU and conflated portal information. This study may not represent all open notes experiences in the ICU, though our study population demographics were consistent with reported disparities in patient portal access.^23,49 As a single-center study, our local demographics may differ from other institutions and may not capture how other diverse settings or populations experience open notes. Non-English speakers were excluded, and future research should include their unique perspectives to support equitable health services. Eleven of our study participants either worked in or had personal connections to healthcare, which may indicate a sampling bias or a disparity incurred by limited patient portal investment. The interviewer introduced himself as a physician and had pre-existing clinical relationships with certain participants, which may have influenced responses. Although qualitative interview studies may not be generalizable, our findings produce novel insights that are valuable to anyone interfacing with the EHR.

Conclusions

Parents leverage open notes in the setting of their child’s critical illness by negotiating between the power dynamics in medicine with their parental role. This brings forth considerations for improvement opportunities in patient and family-facing information services. The entrance of parents into a historically restricted space brings them into uncharted territory at the intersection of health literacy, patient data, and information technology. As health information platforms integrate this new audience, pediatricians face a new challenge – to bring family-centered care into the EHR.

Glossary

EHR

electronic health record