Family Perspectives on Continuous Monitor Use in a Children’s Hospital: A Qualitative Study

We performed a qualitative study of hospitalized children and their families using semistructured interviews combined with direct observations. We chose to conduct observations in addition to interviews to capture components of families’ experiences that may not readily arise during interviews.²⁷  The study took place on 2 pediatric hospital medicine units: a 48-bed unit at a large, midwestern children’s hospital and a 22-bed unit at its community satellite hospital. There are ∼7000 annual admissions to these units, including patients with common acute and with chronic complex medical conditions. Patient care on these units is provided by pediatric nurses, resident trainees, advanced practice nurses, and pediatric hospitalists. Approximately 40% of patients on these units are continuously monitored.⁵  Nurses and other clinicians orient families in an ad hoc manner, and no structured monitor-related education materials exist.

We identified patients admitted to the hospital medicine service who had experienced continuous cardiorespiratory and/or pulse oximetry monitoring for at least 6 hours during their stay. Our team thought that 6 hours was a reasonable minimum experience for families to observe the monitors and witness several alarms and alarm responses. We used a purposive approach to recruitment targeting a variety of diagnoses as well as diversity in terms of the child’s sex, race, and ethnicity. Although we did not specifically study the impact of self- or family-identified child race and ethnicity on our outcomes, we included this information to characterize our patient population more fully. Although we targeted families of patients admitted for a variety of illnesses, respiratory illnesses were particularly targeted as they are among the most common reason for children to be hospitalized. We planned to conduct interviews and observations until we were no longer identifying new themes (thematic saturation).^28,29  We conducted interviews with parents and the child, if the child was developmentally able to participate.

The study team, which included 3 hospitalists and a qualitative methods expert, developed an interview guide (Supplemental Information 1) and a structured observation form (Supplemental Information 2) on the basis of expert input and existing literature. The interview guide and observation form were vetted with content experts in inpatient care, including physicians, nurses, and parents whose children were previously hospitalized.

We approached participants during their hospital stay to participate and obtained informed consent (with assent for children developmentally able). We assured participants that their data would not be shared with their clinical team. Participants could receive an incentive of up to $20 ($10 for participation in each component).

For families participating in observations, a trained research coordinator took detailed field notes during a 2-hour period, scheduled at the family’s convenience outside of medical rounds, taking note of any alarm or monitor-related events (eg, parent’s comment or behavior in response to alarm) and relevant contextual details (eg, position of individuals, parent–child interactions). The same research coordinator then conducted an approximately hour-long audio-recorded interview in the patient’s room. The interview guide included structured questions regarding the family-identified reason for hospitalization and number of previous hospitalizations.

This hospital’s institutional review board reviewed and approved the study.

We audio recorded, transcribed, and deidentified interview text, then imported it into qualitative coding software (Dedoose, SocioCultural Research Consultants LLC). Then, 3 team members (2 hospitalists and a qualitative methods expert) individually reviewed 6 interview transcripts, conferring after each, to generate preliminary codes. Two team members then individually coded subsequent transcripts and came to consensus on codes, with any disagreements referred to the third team member. The coding team then identified illustrative quotes.

The team reviewed structured observation notes to add detail to themes revealed in interviews. We summarized demographic data using counts and percentages as appropriate to the variable.

We enrolled 24 families. Of those families, 23 (27 parents and 4 patients) completed interviews, and 9 completed observations (1 family consented to observations only). The hospitalized children ranged in age from 11 days to 15 years, and most were publicly insured. We detail additional family demographic information in Table 1; themes, explanations, and brief illustrative quotes below; and full quotes provided in Table 2.

Participants expressed varied comprehension of how monitors functioned or were used. For example, medical team explanations about why or how they were using the monitors led to confusion or frustration for families– “[the numbers are] so high…. I don’t understand it at all.” Expressing uncertainty about the significance of the values on the monitor, 1 parent said “I can see him in front of my face, and I don’t see anything that’s like ridiculous. In my mind, I kind of came up with my own numbers of what would be too high.” Participants expressed that the medical team’s decisions to initiate or discontinue monitors rarely involved parents; however, when monitors were being used, parents viewed that as a sign of how sick their child was. One parent, explaining that she was not sure how the decision was made to stop monitoring said, “…they were saying…they would take him off if they felt like it was okay to.”

Parents interpreted their function as an intermediary between the monitoring system and the bedside staff. Rationalizing why the nurse did not react immediately to alarms, 1 parent said, “I loved our night nurse that night, but he had 5 patients. So, he was all the way down at the end of the hallway. I just stuck my head out like, ‘his monitors have been going off for a while.’” This intermediary role often involved parents conducting brief assessments of their child in response to alarms to help them decide when to alert staff– “I always look …. are his leads still on? Did he pull them off?…And then, normally, they level out.” Parents offered that certain categories of alarms did not warrant immediate attention from the medical team (eg, “if it's a crazy number, I call… normally, it's just because he's moving, and 6 months old, and likes to grab wires.”)

Participants expected monitoring to occur as part of the hospital experience, while acknowledging discomfort and inconvenience that monitors sometimes caused. Perceiving that having their child monitored was the primary or sole reason for hospitalization, 1 participant stated, “[Monitors] are a big reason why I'm here. The second reason is they have oxygen.” Participants acknowledged the inconvenience that monitors imposed, including alarm-related sleep loss or restrictions in child movement caused by leads as an expected part of the hospital experience. Speaking about the leads, 1 parent said, “Yeah, it’s a little annoying for him…but, I feel like it's …. needed.” Related, 1 patient shared, “It’s alright [the monitor got turned off]…so I can sleep better, and so I can go to the bathroom.” Another parent, speaking to the frequency of sleep disruptions due to alarm noises at night explained, “…it wasn't like I was checked in for a nice, restful hotel sleep.”

Parental perceptions toward alarms varied depending on the context of past medical experiences. Families inexperienced with hospitalization reported that alarms made them nervous. Contrasting experiences between hospitalizations and noting how previous hospital experience resulted in less monitor-related anxiety, 1 parent stated “Well, last time I was here it made me nervous, but this time…I'm not so much nervous, just a little bit worried.” Although parents perceived monitors to provide useful information, overreliance on monitors could lead to clinicians and parents missing major changes in the child’s status. “…I feel like you can get so fixated on it, myself included, that you forget to watch her. And she was starting to develop …some symptoms that were very visible, but we kept looking at the monitor.” In contrast, 1 parent reacted to the low perceived utility of the monitor, mentioning “I just think they’re ignoring it. I don’t see no point in it being right there.” Other participants saw the monitor as reassuring especially as part of their child’s “safety net.” One parent described their preference to “leave the monitors on all the time…I feel like I react quicker than what the nurses’ station does.”

Feeling included and heard as part of their child’s care team affected participants’ perceptions of the monitors overall and the perceived responsiveness of hospital staff in addressing the monitors: “It’s like they don’t come here, they don’t come in and tell me anything about it.… To me, they’re ignoring me.” Parents discussed the length of time it took clinicians to address monitor alarms for their children. One parent stated, “…it was below what it should have been for long enough period of time that somebody should have came in.” Another parent, speaking more positively stated, “For the most part…I think they were always really good at getting him taken care of as fast as they could.”

Observations confirmed several concepts participants shared in interviews. Related to “alarm intermediaries,” parents were noted to frequently look at the monitors, check on their child, and adjust monitor lead wires in response to alarms. Related to “value,” alarms often came and went without the observer noting a specific nurse response, and sometimes without any parent response temporally associated with the alarm. Supporting the theme “monitor use and alarms are expected,” the alarms were observed to be part of the hospital experience and responses around alarms were not distinct events. Families and nurses saw and responded to alarms in the context of a child’s activities of daily living such as eating, napping, and playing.

Patients and families conveyed their shared experiences and varied perceptions of continuous cardiorespiratory and pulse oximetry monitors. Participants perceived benefit from continuous monitors by (1) being part of their expectations for hospitalization, (2) being reassured by their presence, and (3) serving as a conduit for their participation in their child’s care. Yet, they also described the challenges faced by clinicians, such as high rates of nonactionable alarms and long clinician response times. Our participants saw themselves as an extension of the medical team by being a part of the surveillance system in the room and reported interacting with the monitors by watching the values, checking monitor wires, and calling for their nurse for alarms. These findings can inform the design of family-facing educational materials addressing the clinical use of continuous monitors in children’s hospitals as well as the design of deimplementation interventions³⁰  aimed at reducing continuous monitor overuse in children’s hospitals.

Participants described perceiving their role as part of the monitoring system, including when they notified clinicians about long alarm response times. These experiences are juxtaposed with families perceiving themselves as integral to their child’s in-hospital safety. Study participants noting long response times is not surprising given a previous study documenting a median of 10.4 minutes for response to potentially critical alarms.²  Interestingly, participants reported not always notifying staff of alarms; instead, they would first assess their child’s condition and monitors themselves before determining whether to call for help. Researchers in previous studies have highlighted how families can contribute to improving safety, including identifying medical errors and deterioration.^22,23  However, there is currently no systematic or formalized way to engage families in responding to alarms or in care plan discussions around continuous monitor use. It is concerning to note that nurses consider the presence or absence of family when deciding whether to respond to alarms,^2,25,31  given our study participants expressed a range of understanding of monitor function. Our findings add complexity to our as-yet underdeveloped understanding of the role families play in how monitors are used and how clinicians approach patient surveillance in everyday practice.

Participants in our study expressed uncertainty about what monitors were used for and how the information would be used clinically. In the context of our other findings, including of family members being “alarm intermediaries,” families expressing confusion about monitors suggest that structured approaches to educating and engaging families in care with the monitor system may be acceptable. Uncertainty or misunderstanding about the utility of monitors combined with the expectation that children be monitored when they are hospitalized may indicate that families overvalue the contribution monitors make to their child’s care. Although it is not previously documented among families of hospitalized children, physician-focused studies have suggested physicians may overvalue monitors.^32,33  It is possible that families may detect subtle signals from clinicians and adopt similar views about the usefulness of monitors. This suggests training for clinicians in clear ways to talk about the benefits and harms of monitoring should accompany family-targeted monitor education.

Parents’ expectations that their children receive monitoring during hospitalization has implications for ongoing and future work related to monitor overuse and alarm fatigue. Parent participants in our study expected that their child would be placed on monitors, even while they acknowledged monitor wires cause discomfort and alarms disrupt sleep. This resonates with previous study findings involving parents of children hospitalized with bronchiolitis in which parents demonstrated a preference for monitors, even if it prolonged their child’s hospital stay.^20,21  Participants in our study also acknowledged monitor alarm-related anxiety; interestingly, a recent randomized controlled trial of intermittent versus continuous pulse oximetry for bronchiolitis care revealed no difference between parents in the 2 groups using a single-item anxiety scale.³⁴  Family preference or concerns may influence clinician monitoring practice,^25,26  and there is evidence this may affect guideline use.³⁵  Guidelines from the American Academy of Pediatrics, the American Board of Internal Medicine Choosing Wisely Campaign, and recently published evidence-based recommendations have identified opportunities for less monitoring,^7,36,37  including for children with respiratory illnesses, and national patient safety organizations have highlighted the hazards of excessive alarms in hospitals.^38–40  Our findings suggest ways in which deimplementation studies focused on continuous monitor overuse⁴¹  can address family expectations and preferences as a driver of clinician behavior.

Our study findings are limited in the following ways. We included English-speaking participants only. This calls for greater attention to engaging diverse patient and family stakeholders in creating family-focused education or in deimplementation work, which our team will do moving forward. Relatedly, we were not able to examine differences in the experience of families across different subgroups (eg, medically complex versus not, sociodemographic differences). There were few patient participants. Although we achieved thematic saturation, it is possible that there are child-specific perspectives missing from our study. The findings from this qualitative study conducted at 2 general hospital medicine units within a single medical system was not intended to be directly generalizable to other populations of hospitalized patients and families. Nonetheless, the themes identified can inform additional studies and suggest immediate targets for improving patient and family experience, including education.

Researchers in future monitor-related studies in children’s hospitals, particularly deimplementation studies striving to alter clinician practices, should consider the experience and educational needs of patients and families. Because parental understanding of monitors may vary, clinicians should partner with families to design monitor orientation and education materials that meet families’ needs. These efforts should strive to engage parents with diverse perspectives to ensure materials are useful to a range of individuals. Such materials should address making sure families feel adequately informed about their child’s care such that they can participate in decision-making and feel empowered to advocate for their child’s safety. This could include family-focused interventions addressing clinical as well as nonclinical impacts of continuous monitoring, including potential monitor-related adverse effects for clinicians and families when clinical benefit is questionable.

Families identified beneficial aspects of continuous monitoring, including monitoring being a part of their expectations for hospitalization, and that having continuous monitors meant they could participate in their child’s care. Yet, families also conveyed that explanations about why monitors were used could cause confusion and remarked on long staff response times for alarms. We suggest that communication with children and their families will be an essential part of continuous monitor deimplementation.