Stakeholder Perspectives in Anticipation of Sharing Physicians’ Notes With Parents of Hospitalized Children

Abstract

Objective:

Elicit stakeholder perspectives on the anticipated benefits and challenges of sharing hospital physicians’ admission and daily progress notes with parents at the bedside during their child’s hospitalization and identify strategies to aid implementation of inpatient note sharing.

Methods:

Five semistructured focus groups were conducted with 34 stakeholders (8 parents, 8 nurses, 5 residents, 7 hospitalists, 6 administrators) at a tertiary children’s hospital from October to November 2018 to identify anticipated benefits, challenges, and implementation strategies prior to sharing inpatient physicians’ notes. A facilitator guide elicited participants’ perspectives about the idea of sharing notes with parents during their child’s hospitalization. Three researchers used content analysis to analyze qualitative data inductively.

Results:

Anticipated benefits of sharing inpatient notes included: Reinforcement of information, improved parental knowledge and empowerment, enhanced parent communication and partnership with providers, and increased provider accountability and documentation quality. Expected challenges included: Increased provider workload, heightened parental confusion, distress or anxiety, impaired parent relationship with providers, and compromised note quality and purpose. Suggested implementation strategies included: Setting staff and parent expectations upfront, providing tools to support parent education, and limiting shared note content and family eligibility.

Conclusions:

Stakeholders anticipated multiple benefits and drawbacks of sharing notes with parents during their child’s hospital stay and made practical suggestions for ways to implement inpatient note sharing to promote these benefits and mitigate challenges. Findings will inform the design and implementation of an intervention to share notes using an inpatient portal and evaluation of its effect on child, parent, and healthcare team outcomes.

Sharing honest, unbiased health information with parents is endorsed by the American Academy of Pediatrics as an important way to improve the quality and safety of pediatric care.¹ To increase information transparency, a growing number of hospitals have adopted inpatient portals, online applications on tablet computers that provide parents with real-time clinical information from the electronic health record (EHR) at their hospitalized child’s bedside.² To date, these portals have been used to share discrete clinical data, such as lists of diagnoses, medications, and test results. However, recent study findings suggest that parents want access to daily notes written by their child’s inpatient physicians,^3,4 which could provide detailed information about their child’s diagnoses, treatment and contingency plans, and insight into the reasoning behind clinical decisions made during hospitalization.

While governmental regulations will soon require that healthcare organizations share physicians’ notes with patients and/or their caregivers,⁵ little is known about the effects of sharing these notes during acute hospitalization. Initial studies suggest that sharing notes may help adult patients make more informed decisions during their hospitalization.^6–9 However, some providers are concerned that sharing notes before the end of an inpatient encounter could be detrimental, due, in part, to the higher acuity, uncertainty and faster pace of inpatient care.^10,11 These concerns are heightened in pediatrics with the added complexities of parent-patient-provider dynamics and the necessary protection of children.^10,12,13 To support implementation of inpatient note sharing, a clear understanding of the perspectives of families and the healthcare team is necessary to maximize potential benefits and proactively mitigate any negative consequences that might arise.¹⁴

As a first step toward sharing inpatient notes, the objective of this study was to identify the perspectives of parent, physician, nurse, and hospital administrator stakeholders on the anticipated benefits and challenges of giving parents access to physicians’ notes during hospitalization and strategies on how to most effectively implement the note sharing process. These data will be used to design a note-sharing intervention and evaluate its effect on outcomes important to stakeholders.^15–18

Methods

Study design, setting, and participants.

In this qualitative study, focus groups were conducted with stakeholders at a tertiary children’s hospital in the Midwest from October to November 2018. Qualitative methods were used to capture the wide array of beliefs, values, and expectations of a diverse group of stakeholders involved in pediatric inpatient care.¹⁹ In-person focus groups were chosen to encourage participant discussion and interaction - building upon ideas, agreeing or disagreeing with one another’s thoughts, and exchanging relatable experiences.²⁰

The research team chose relevant stakeholder groups based on those that were anticipated to be most affected by sharing physicians’ inpatient notes, including: (1) Parents with experience caring for a hospitalized child, (2) bedside nurses, (3) pediatric intern and resident physicians, (4) attending hospitalist physicians, and (5) hospital administrators. Parent participants were recruited from the hospital’s Patient and Family Advisory Council. Hospital administrators included representatives from hospital and residency program leadership, information services, risk management, and patient relations. We sought to include 6 to 10 participants in each focus group along with one facilitator and one moderator, which is within the confines of ideal group configuration.²¹ Separate sessions were conducted for each stakeholder group to allow for intragroup homogeneity and intergroup comparisons and for all individuals to freely share their respective stories and opinions without fear of retribution (ie, unlike if a participant’s superior were participating).^20,21

Study procedure.

Eligible participants from each stakeholder group were invited by email. Respondents were provided with an information sheet describing the study, risks and benefits, and contact information, and informed consent was obtained. Participants were not reimbursed for their participation. The University of Wisconsin-Madison Institutional Review Board approved this study.

Focus groups were conducted in a private hospital conference room and audio-recorded. Each group was attended by 2 research team members; one research specialist trained in qualitative methods (AT) moderated the groups while another researcher (PH) took notes. Groups were intentionally facilitated by nonmedical members of the research team in order to encourage participants to respond freely, minimize self-censoring, and avoid introducing facilitator bias.

Facilitator guide.

A semistructured facilitator guide was developed and refined after conducting a pilot focus group with representatives from each stakeholder group. These representatives did not subsequently participate in the final focus groups. Group sessions started with a description of the typical components, content, and an example of physicians’ inpatient notes. The facilitator followed with open-ended questions to explore: (1) Participant perceptions of the idea of sharing inpatient notes with parents, (2) the potential benefits and challenges, and (3) strategies to most effectively share physicians’ notes with parents during hospitalization. The facilitators used additional probes to encourage clarification of participant responses. At the end, the facilitators provided a summary of the discussion thus far, offered an opportunity for revisions or clarifications, and administered a short demographic survey. The full facilitator guide and survey can be provided upon request.

Data analysis.

Audio-recordings were transcribed by a professional service. A researcher (AT) reviewed all transcripts to ensure accuracy, complete gaps in text that the transcriptionist could not discern, and delete any identifying information inadvertently collected. Transcribed data were transferred to Dedoose Version 8.3.17 (Los Angeles, CA: SocioCultural Research Consultants, LLC; www.dedoose.com), software to assist with qualitative data organization.

To corroborate data and minimize disciplinary biases, 3 researchers trained in qualitative methods (AT, CS, MK) participated in the analysis of transcript data using inductive content analysis.^22,23 Two researchers (AT, CS) independently reviewed all transcripts, identifying all concepts related to benefits, challenges, and strategies. They met with a third researcher (MK) to develop and iteratively refine a codebook of identified codes, their definitions, and exemplary quotes. Two researchers (AT, CS) then independently coded all of the focus group transcripts. During this process, all 3 researchers continued to meet together to review the coding and reach consensus concerning any discrepancies, always referring back to the transcripts.²⁴

Results

A total of 34 stakeholders participated in the 5 focus groups: 8 parents, 8 nurses, 5 residents, 7 hospitalists, and 6 administrators. Focus groups lasted from 1.5 to 2 hours. Most participants were White (88%), female (79%), held a college degree (68%) and spent >15 hours per week on the Internet (56%). All focus groups engaged in robust discussion of the potential benefits and challenges of sharing notes as well as strategies to support implementation.

Potential benefits (Table 1).

Table 1.

Anticipated Benefits of Sharing Inpatient Notes With Parents, Definitions, and Exemplary Quotes

Benefit	Definition	Quote
Reinforcing information	Notes serving as a written reminder of previously communicated information	“Sometimes it reminds you of some of the things you discussed… part of the objective would be to talk about goals and getting released from the hospital, things like that. Sometimes those are multistep, and there’s a lot there, and it’s hard to remember just from a verbal conversation.”
Improving parental knowledge	Notes facilitating parent learning, understanding, knowledge, and/or health literacy	“I think in addition to that, you know, if I’m the parent, and it’s very hard in that five or ten minutes to take everything in and to be able to articulate it to your other family members or whoever you need to, and so if you have that record to look at, it can help you for yourself understand it better.”
Increasing parent empowerment	Notes increasing parent empowerment and/or advocacy for their child	“One word that came to mind when you were talking was empowering, because I think it’s really empowering to feel like you have some control…”
Enhancing parent-provider communication	Notes enhancing parent-provider communication	“I think the communication between the family and the team could be more robust [with access to notes]. I think then the experience that they have while they’re inpatient gets better because they feel like they were an active part of their child’s care.”
Facilitating parent-provider partnership	Notes facilitating the partnership, relationship and/or collaboration between patients, families and providers	“I think it has the potential to really enhance part of the patient and family-centered care experience here, which is to enhance the partnership and collaboration between patients and families and providers and getting everyone on the same page…”
Increasing provider accountability	Notes increasing provider accountability	“…to some extent, [sharing notes] is sort of forcing a layer of accountability upon ourselves…”
Improving documentation quality	Note sharing prompting improved quality of documentation by providers	“[Sharing notes] may increase the quality of note documentation.”

All stakeholder groups thought that notes could serve as a written reminder for parents and/or reinforcement of information discussed in prior face-to-face conversations with providers. All groups hypothesized that the information within notes could improve parental knowledge of his/her hospitalized child’s condition, specifically that parents could improve their health literacy by being exposed to medical jargon in notes. One parent explained, “…when [doctors] use the medical lingo that they use [in notes], we learn too.” They similarly agreed that this reinforcement and increased knowledge could lead to improvements in a parent’s ability to communicate with providers and advocate for their child.

Parents specifically mentioned that increased information transparency could enhance provider accountability and trust in their child’s inpatient providers, thus improving the parent-provider relationship. Some parents went even further, stating that families might feel more comfortable being open and honest with their child’s provider if they had access to notes. Physicians and hospital administrators also suspected that increased transparency might lead to improved accountability and documentation quality, as one hospitalist stated: “Whenever there’s more accountability or transparency, it sort of pushes everyone to try to do a better job.”

Anticipated challenges (Table 2).

Table 2.

Predicted Challenges of Sharing Inpatient Notes With Parents, Definitions, and Exemplary Quotes

Challenge	Definition	Quote
Increasing provider workload	Note sharing leading to increased provider workload	“Right now, we work 16 hours… and now if you’re going to add on top of that having to run to the parents’ bedside to explain our note, that’s going to delay all our other responsibilities. And if you are going to add extra documentation, like that’s going to be more work that we aren’t necessarily going to have time to do.”
Heightening parental distress and/or anxiety	Note content causing heightened parental distress, anxiety, worry and/or anger	“Do I really need to see all the notes at that point where they’re discussing every possibility that could be going on with him and the tests that they need to run? Because given that state of mind, I, it’s, you know, after a diagnosis is made…I know that I went into an anxiety attack.”
Causing parental confusion	Note content causing parental confusion due to medical jargon and/or ambiguity	“ You know, families should know what’s going on. But do they? Are they able to understand the level of ambiguity, uncertainty that sometimes comes in these inpatient settings, especially for really complicated patients?”
Impairing parent-provider relationship	Some note content leading to distrust or an impaired relationship between patients, families, and providers	“It would make me have less trust for that particular doctor if I’m looking at your notes and I know that you’re cutting and pasting or you’re not putting in accurate information. That changes what I think of our relationship and whether or not I can trust that you’re doing your job accurately.”
Compromising note quality and/or purpose	Alterations of notes for parent viewing resulting in compromised quality and/or purpose	“I was also wondering, in the challenges, whether it could inhibit doctors from talking freely to each other knowing that the parents are privy to [notes].”

All focus groups feared that reading bad news within a note, especially before hearing it face-to-face from a physician, could be distressing for parents and/or cause other negative emotions. As one parent described: “They basically told us we had a 5% chance of survival, and that we could take our daughter home and put her on hospice. If I would have read that in a doctor’s note, no matter good I am at absorbing this stuff, I think would have probably freaked out then too, because it was not a good day.” Additionally, all groups speculated that the parent-provider relationship could be adversely affected if parents disliked something about note content or the process of sharing (eg, delay in timing). Despite the potential benefit of increased transparency identified by parents, residents anticipated that parents might be less, not more, forthcoming with physicians if notes were shared, out of fear that personal or private information could be documented and shared within notes.

All stakeholder groups feared that the information in notes could cause confusion among parents who do not understand medical jargon, hospital processes, and/or the ambiguity inherent to healthcare (eg, differential diagnoses). Confusing information in the notes might drive some parents to search for information online, which could add to their anxiety, as one nurse explained, “A lot of times, [history and physicals] have differential diagnoses…a list of all of the possible things that this patient could have that they could be presenting with. Do they likely have any of those [diagnoses]? Probably not. But as a parent, you read all those in a note, and you are on Google. You are looking all those things up. Oh, your kid definitely has cancer.”

Resident, hospitalist, and nurse groups anticipated that sharing notes could increase physicians’ already heavy workload. They expected that physicians would spend more time on notes, including altering content for parent viewing, checking for inaccuracies, and/or answering additional parental questions related to content. One hospitalist anticipated that she would need to be more careful about what she writes in notes because “it’s important to me that the family feels good about what they’re reading, and that they don’t feel like it is in any way putting any blame on them, especially when it’s about a parent.” If physicians alter content for parents, some residents felt this could compromise note quality and, thus, their written communication with other providers. On the other hand, if physicians did not spend enough time checking over notes for inaccuracies and medical jargon, residents feared that sharing notes could lead to parental confusion and/or distrust in providers. Administrators and residents expressed uncertainty about how the purpose of the note and their daily work could change. Interestingly, parents also recognized and sympathized with the potential challenges that providers could face if notes were shared, as one parent stated, “[There’s] a lot of medical lingo, jargon, terminology, whatever, and I can’t fathom physicians needing to tone it into a different format. That just sounds like a lot of work.”

Implementation strategies.

Stakeholders made multiple suggestions regarding how to best implement note sharing with parents during hospitalization (Table 3). All groups agreed that parents would benefit from setting expectations for both parents and providers upfront. This could include a “disclaimer” regarding what parents might see in inpatient notes, expectations about the timing of note release, and who and when to ask if questions arose during hospitalization. They also felt that tools should be included to facilitate parent understanding of note content, such as a medical term glossary, hyperlinks to educational content, and/or setting up an EHR automatic abbreviation exchange for providers, as noted by an administrator “so ‘SOB’ can change to “shortness of breath” and without any effort.”

Table 3.

Strategies to Support Implementation of Inpatient Note Sharing With Parents, Definitions, and Exemplary Quotes

Strategy	Definition	Quote
Set expectations for staff and parents upfront	Train staff on note writing and release expectations and provide disclaimer for families about note purpose, content, timing and when and to whom to direction questions to	“I would agree that it would be helpful to say that like this [note] is a one point in time, and it may not be as up-to-date as current events. So, I mean, a disclaimer seems like a good plan.”
Provide tools to support parent education	Provide tools to support parent understanding of note content, such as medical glossaries, other educational links and/or setting up an EHR automatic abbreviation exchange for providers	“I also thought the idea of having some guidance on the note … maybe a glossary would be available.” “It would be awesome if you could just link to those patient educations. Like even on meningitis, like a link, like you hit the button, and that just pulls up the page, education.”
Limit shared note content and family eligibility	Share only part of the note (ie, plan of care) and exclude certain patients and families from note sharing (eg, sensitive diagnosis, child abuse, adolescents/teenagers)	“And maybe the full note … might not be beneficial for parents, maybe something that was more of like a snapshot… maybe something that is more focused on the plan or like what are the steps moving forward, as opposed to like the entire note.”

Parents recommended limiting the note to objective content and substituting at least some medical jargon and abbreviations with lay terms, such as the information in the assessment and plan. Physicians agreed and recommended clarifying these expectations for note writers before implementing note sharing. To avoid overwhelming parents with information, nurses suggested that physicians consider sharing only part of their note – the assessment and plan and/or a summary or “snapshot” of the leading diagnosis and treatment plan. Physicians and administrators also suggested that the hospital restrict sharing notes with families of children with “sensitive diagnoses,” such as those with suspected nonaccidental trauma and/or medical neglect.

Discussion

While acknowledging that note content could be confusing for some parents, all stakeholder groups anticipated that sharing notes had the potential to increase parental understanding of their hospitalized child’s condition and ability to communicate with inpatient providers. Residents were the most concerned about sharing, predicting many more potential challenges than benefits. These findings have important implications for children’s hospitals as federal guidelines will soon mandate sharing notes in real-time with patients and/or their caregivers.

Focus groups stakeholders predicted similar benefits of sharing inpatient notes to those demonstrated with adult patients accessing notes in the ambulatory setting, including improved understanding of their diagnoses and treatment plans and communication with providers.^25,26 Moreover, stakeholders anticipated that providing parents with access could lead to enhanced provider accountability and prompt improved inpatient documentation, while also increasing a parent’s ability to advocate for their hospitalized child’s health and healthcare. Some OpenNotes literature suggests that patients and/or caregivers with access to notes may also feel empowered to identify and correct errors in notes and alert their physicians of potential safety concerns.^27,28 Whether sharing notes will translate to improvements in patient safety in the pediatric inpatient setting is unknown, but is an important area for future investigation.

Whether challenges predicated by stakeholders will materialize with actual note sharing is unclear. Some hospitalized adults with lower education levels were confused by medical jargon in notes⁸ and physicians feared that this confusion could have increased patient anxiety.⁶ However, findings from another study reported that adult inpatients instead perceived a decrease in their anxiety as a result of having access to their physicians’ progress notes.⁷ In our study, physicians, nurses, and some parents voiced concerns that sharing notes could lead to more time spent writing, editing, and/or changing notes, which could dramatically increase physicians’ already heavy workload. However, physicians in previous studies in inpatient adult settings noted that any changes they needed to make in note content were minor or insignificant.^6,8 Although research from adult populations provides valuable insight, differences in sharing notes with parents of child patients compared to sharing adult patients could lead to important differences in the implementation and outcomes of note sharing.

Many implementation strategies suggested by stakeholders in this study have the potential to promote benefits and mitigate anticipated challenges. Suggestions by residents, faculty, nurses, and administrators centered around setting expectations for note writers. To support parental understanding of content and mitigate parental confusion and/or anxiety, stakeholders recommended that those writing notes limit excessive medical jargon and potentially subjective and/or offensive language. Providers may also take advantage of built-in EHR features to translate abbreviations, which could lessen their day-to-day workload. Given their hesitancy to share, resident physicians may benefit from targeted education and feedback on expectations for note writing. This training should include practical tips on ways to most efficiently write notes appropriate for parental viewing, while also meeting the other important functions of notes, such as facilitating trainee education, provider communication, and billing and legal documentation requirements. To avoid confusion and further enhance transparency, physicians should communicate with patients and families regarding the plan of care prior to note sharing whenever possible. Hospitals should also consider prefacing note sharing with a disclaimer or brief explanation for parents on admission of the purpose of notes, what they may include, and when and to whom questions should be directed. Finally, hospitals will need to operationalize ways to transparently and consistently limit access to notes when sharing has the potential to cause the child physical harm, such as with parents of children admitted for suspected nonaccidental trauma.

This study has limitations that should be considered. While findings from focus groups may not be generalizable, they provide the rich, contextual information that is needed to inform the implementation and evaluation of inpatient note sharing. All participants were volunteers and the recruitment process may have selected those who had stronger opinions, either for or against note sharing. Parent participants were drawn from the institution’s Patient and Family Advisory Council; their perspectives may not be representative of the overall parent population at this and other hospitals. Additional focus groups should be conducted with a more diverse group of parents in future studies. Further, the results in this study are hypothetical “best guesses” of the implications of sharing physicians’ inpatient notes and most effective ways to support the process of sharing by a limited number of stakeholder groups prior to implementation. These stakeholder groups may or may not have the necessary knowledge and experience to make these predictions. This study intentionally focused on parents of children <12 and a limited number of groups of hospital stakeholders as an initial step to inform inpatient note sharing. We plan to evaluate the experience of sharing notes with a more diverse sample of caregivers, adolescent patients, and other hospital staff and providers (eg, nurse practitioners, subspecialists) in future studies.

Sharing physicians’ inpatient notes with parents at their child’s bedside has the potential to improve parental understanding of their child’s condition, health literacy, and ability to advocate for their child during hospitalization. Hospitals should recognize and proactively address anticipated challenges of note sharing to amplify these anticipated benefits and mitigate negative consequences.

What’s New.

In this study, parent and healthcare team stakeholders anticipate benefits and challenges of sharing inpatient notes with parents during their child’s hospitalization and suggest practical ways that hospitals can implement note sharing to support positive outcomes and mitigate negative consequences.

Abbreviations:

EHR

Electronic Health Record