Perception of Physicians’ Notes Among Parents of Different Health Literacy Levels

This was a secondary analysis of qualitative parent interview data obtained from a larger, mixed methods study, Bedside Notes.^9,11  For this secondary analysis, the same participants and interview data from the parent study were used, in which semi-structured interviews were conducted with parents until thematic saturation regarding the overarching study question was reached. In the parent study, on the basis of published differences in ambulatory note access,^18,19  participants were recruited by using purposive sampling²⁰  to capture a racially and ethnically diverse sample of parents of children with a variety of acute and chronic conditions. Parents were eligible if they had a child <12 years old admitted to a hospitalist service at a Midwestern tertiary children’s hospital in April 2019. Parents were excluded if they spoke a language other than English, if their children were ≥11 years of age, if their child had an anticipated length of stay <24 hours (determined by the treating physician), or if the children were admitted with concerns of abuse. Parents’ eligibility was determined by reviewing electronic health records and verified by the attending physician.

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. Parents were enrolled on the day of admission, surveyed about basic demographic information, and screened for health literacy using the Brief Health Literacy Screen (BHLS).²¹  Parents were then provided a tablet (Apple iPad 32 GB) with the note-sharing capability enabled within an inpatient portal application (MyChart Bedside, Epic Systems). Parents were then instructed by the researcher who enrolled participants on how to access their child’s hospitalist physicians’ admission and daily progress notes.

On the day of discharge, semi-structured interviews were conducted with parents to elicit their perceptions of the benefits and challenges of having note access. These one-on-one, in-person interviews were conducted by a researcher trained in qualitative interview techniques (MK) using a guide (Supplemental Information) that was developed from previous literature^12,22  and refined after piloting with 2 parents. Interview questions elicited parental perceptions of receiving notes and personal experience (eg, “What do you think about having access to your child’s notes while they’re in the hospital?” “What were the benefits of having access?” “What were the downsides of having access?”). Interviews lasted 45 to 60 minutes and were audio-recorded, transcribed by a professional service, and deidentified. Parents were given $50 as compensation for their participation. During interviews and analysis, researchers observed that parents with proficient health literacy had different reactions to having note access than those with limited health literacy and, thus, performed a post-hoc secondary analysis to compare content across health literacy levels. The University’s Institutional Review Board approved this study.

For this secondary analysis, interviews were grouped by parent BHLS score. The BHLS was previously validated in outpatient, emergency department, clinical, and hospital settings.²¹  Researchers were instructed to read 4 questions out loud to parents: (1) How often do you have someone help you read hospital materials? (Response options: always, often, sometimes, occasionally, never), (2) How often do you have problems learning about your medical condition because of difficulty understanding written information? (always, often, sometimes, occasionally, never), (3) How often do you have a problem understanding what is told to you about your medical condition? (always, often, sometimes, occasionally, never), and (4) How confident are you in filling out medical forms by yourself?. Response options were not at all (1), a little bit (2), somewhat (3), quite a bit (4), extremely (4), with total scores ranging from 4 to 20. Scores are interpreted as inadequate (4–12), marginal (13–16), or adequate health literacy (17–20). In this study, researchers observed that parents with inadequate and marginal health literacy scores were thematically similar and, thus, were grouped together to form (“limited health literacy”) and compared with parents with adequate health literacy (“proficient health literacy”). Similar groupings based on BHLS scores have been previously used.²³ 

Further detail on the primary analysis of interviews can be found in the parent study.¹¹  Briefly, thematic analysis^24,25  was conducted by 3 researchers trained in qualitative methods: 1 physician, 1 parent with experience caring for a hospitalized child, and 1 research specialist. Two researchers first developed and iteratively refined a codebook. Then they independently coded all the interview transcripts using the final codebook and met periodically to resolve any coding disagreements and identify themes with a third researcher.²⁶ 

For this secondary analysis, researchers grouped interview data and original codes according to parent BHLS score (proficient vs limited health literacy). Then they refined themes and explored any differences and similarities in themes among interviews of parents with proficient versus limited health literacy.

All data analysis was performed by using Dedoose Version 8.3.17 (Los Angeles, CA: SocioCultural Research Consultants, LLC; www.dedoose.com).

In total, 33 of 36 eligible parents agreed to participate and were enrolled (92%) and 28 were included in this analysis; 3 were discharged before receiving notes and 2 were unavailable to complete the interview before discharge. The demographic characteristics of the 28 parent participants are shown in Table 1. By using the BHLS, 16 parents were identified as having proficient health literacy and 12 had limited health literacy. Compared with parents with proficient health literacy, those with limited literacy were generally younger, more racially and ethnically diverse, had less formal education and lower household income, and spoke English as a second language more often. The 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.

Overall, there were 9 themes identified in this secondary analysis, which are shown with representative quotes in Table 2. Parents described 6 benefits of having access to notes, including that the information in notes (1) served as a recap of information and memory aid, (2) increased their autonomy, empowerment, and ability to advocate for their child, (3) allowed them to check for accuracy of information, (4) facilitated their understanding and sharing of information, (5) increased their confidence in and appreciation of the health care team, and (6) decreased their anxiety, stress, and worry. Challenges included (1) parents disliked receiving bad news from the notes before hearing it from their physician face-to-face, (2) some felt that certain parents would not do well reading these notes, and (3) some self-identified their own limited comprehension of medical terms.

All parents reported more benefits than challenges with access to notes and reported that they would want to access their child’s notes if the child was hospitalized in the future. Parents appreciated that notes served as a recap of information or memory aid; one parent described: “I think it is a really good idea, because sometimes you may feel like you missed something, and being able to go back and review what was really discussed is really helpful” (Parent 21). Both parents with proficient and limited health literacy mentioned that having access to notes made them feel more in control and, as a result, more autonomous and empowered to advocate for their child: “It made me feel like I can do more on my own for my own child” (Parent 26). Of the few challenges described, the only challenge shared by parents across health literacy levels was the possibility of receiving bad news in the note before hearing it from their physician face-to-face in conversation.

Parents with proficient health literacy emphasized multiple unique benefits with access to notes. These parents frequently used notes to check the accuracy of information. For example, one parent stated: “I did check them over, for instance, how the plan matched what I had heard” (parent 14). When the information was correct, parents felt more confident in their child’s health care team. If the information was incorrect, parents felt uneasy or unhappy.

Although parents with proficient health literacy did not mention their own difficulty understanding medical terms, they reflected that other parents might not do well reading these notes. They proposed that some parents may not understand the content and subsequently worry or have other negative emotions. Parents with proficient health literacy often clarified that their concerns were theoretical: “I can see how some people may take things that are in the notes personally or misconstrue what is written because a doctor is going to write them in just kind of a very technical way…it wouldn’t affect me because I get it” (Parent 3). Parents with proficient health literacy similarly anticipated that viewing notes when a child was severely ill could be challenging: “[My child] isn’t like a critically ill baby, so it wasn’t like a life-or-death situation, but I think if it was like more severe, I think it would be a lot harder [to read physicians’ notes]” (Parent 2).

Parents with limited health literacy cited some distinct benefits and challenges to having access to notes. Parents with limited health literacy uniquely noted limited comprehension of medical terms in notes. Despite this challenge, they preferred having the information that the notes provided, even if they did not understand all of it. One parent described that it was “nice to be able to see what was happening, what [my physician’s] thoughts were, even though I didn’t understand all of it, but it was still nice to have it” (Parent 13). Parents with limited health literacy used notes to increase their understanding of their child’s care or diagnosis. Some used the information in notes to inform their discussion with their health care team. Others used the information to research online (while acknowledging that this can sometimes be harmful) or crowdsource recommendations (asking friends or family members who may have more medical knowledge or experience). Parents with limited health literacy also often mentioned using notes to share more accurate information with others who were not in the hospital with them: “I read it to [family out of town] off of there, which made it a lot clearer than me trying to put it in my words and then still have it be medically correct” (Parent 18).

Compared with parents with proficient health literacy, those with limited health literacy expressed more appreciation for receiving notes and, in turn, an increased appreciation for their child’s health care team. One parent was in disbelief about having access to notes: “For [a physician] to even share this with you…it’s a lot of trust being built. And that’s some like it’s just crazy to me” (Parent 26). All these factors resulted in decreased anxiety, stress, and worry for many parents with limited health literacy: “It took a lot of stress off our shoulders having these notes” (Parent 26).

This is the first study to reveal parent experiences with accessing physician notes based on health literacy level. Parents across the health literacy spectrum experienced more benefits than challenges when accessing their child’s physicians’ hospital admission and daily progress notes. Although parents with limited health literacy indicated difficulty with medical terminology, they did not associate this with negative outcomes (eg, anxiety, worry), and all parents wanted access to notes during future hospitalizations.

Parents with proficient health literacy oftentimes mentioned that notes would be beneficial for them but not for other parents in hypothetical situations (eg, those with lower health literacy or with a seriously ill child). In our previous focus group study before note release, physicians, nurses, health care administrators, and other parents also opined that parents with limited health literacy may not fully understand medical terms in notes and, thus, may feel more stressed, anxious, or worried as a result.¹²  Parents with limited health literacy in this study acknowledged their limited ability to comprehend medical terminology; however, they still appreciated having access to notes. They described that notes could provide multiple unique benefits to them, including an improved understanding of their child’s condition and trust in their child’s physician. Many parents with limited health literacy associated these benefits with decreased (rather than increased) anxiety, stress, and worry. Although health literacy and formal education do not always align, previous studies have similarly revealed that patients with lower formal education learn about their health as a result of accessing physicians’ notes.^27–30 

Our results highlight the necessity of including parents with limited health literacy as representative stakeholders in clinical and research initiatives (eg, family advisory councils, research project design). In addition, as health care becomes more digital, there are real concerns with equity. Individuals with sociodemographic characteristics (ie, age, race, education, income) associated with disadvantage have lower health literacy,³¹  less internet access,³²  and access physicians’ notes less frequently.^33,34  Given that 85% of all Americans own a smartphone as of 2021,³⁵  disseminating physician’s notes to patients’ personal devices may be a beneficial dissemination strategy. Artificial intelligence and machine learning (AI/ML) have been used successfully in previous studies to translate medical notes into plain language.²⁷  Using AI/ML to translate notes into plain language has the potential to increase comprehension across all health literacy levels without increasing physician workload,³⁶  which was a major concern in previous studies.¹²  This could be a method provided either on personal devices or hospital-administered devices, depending on availability.

Another potential strategy for improving equity and reducing the digital divide may be to reduce the amount of medical terminology in notes. Previous studies have similarly revealed that patients with less formal education found that notes included too much medical terminology.³⁷  Using more lay terms or providing a lay language summary at the end of notes could potentially decrease the gap of understanding, particularly for parents with limited health literacy. Using AI/ML to translate physician’s notes to plain language may be a technique to change the content of medical terminology in notes without increasing the workload of clinicians. Another strategy may be to include a glossary or index of commonly used terms on the tablets for participants to consult.¹¹  One study among adult inpatients with limited health literacy revealed that comprehension was significantly associated with an artificial intelligence-simplified plain-language note as opposed to standardized medical-language versions.²⁷  Health care organizations may also consider incorporating recommendations from the evidence-based AHRQ Health Literacy Universal Precautions Toolkit into note-writing best practices and templates, which may increase understanding of health information for parents of all health literacy levels.^38–40 

This study had several limitations. This qualitative study included English-speaking parents on a single hospitalist service; thus, findings may or may not be generalizable. The exclusion of parents who spoke languages other than English is an important limitation because immigrant and racial and ethnic minority populations often face higher rates of inadequate health literacy.^15,16  Future research should include parents who speak languages other than English and should investigate other health care settings beyond this single center to examine sharing notes on a larger scale. Additionally, health literacy exists on a continuum and can vary on the basis of contextual factors. Dichotomizing health literacy using a singular screening tool may not comprehensively describe a parent’s health literacy level³⁹  nor account for differences in digital literacy. In addition, this study did not include parents of children between the ages of 12 and 17 because of the Cures Act designation that these patients may access their own portal if recommended by the provider.⁴⁰  Including patients of this age should be considered in future studies. This exploratory study is hypothesis-generating and lays the groundwork for further in-depth quantitative analyses comparing the impact of notes on measures of understanding and other outcomes among parents with different health literacy levels. The authors of future studies should consider oversampling parents with limited health literacy to adequately understand their unique needs and challenges. By doing so, we can develop and test interventions to support improved information transparency for this important and often overlooked population.

In conclusion, all parents appreciated access to physicians’ notes and reported more benefits than challenges but experienced different benefits depending on their health literacy level. Although parents with limited health literacy indicated difficulty with interpreting medical terminology, all of them wanted access to notes during future hospitalizations. Future research should consider using AI/ML to simplify medical terminology without increasing the workload of health care teams.