Our objective was to elicit clinicians’ and parents’ perspectives about decision-making related to hospitalization for children with bronchiolitis and the use of shared decision-making (SDM) to guide these decisions.
We conducted individual, semistructured interviews with purposively sampled clinicians (pediatric emergency medicine physicians and nurses) at 2 children’s hospitals and parents of children age <2 years with bronchiolitis evaluated in the emergency department at 1 hospital. Interviews elicited clinicians’ and parents’ perspectives on decision-making and SDM for bronchiolitis. We conducted an inductive analysis following the principles of grounded theory until data saturation was reached for both groups.
We interviewed 24 clinicians (17 physicians, 7 nurses) and 20 parents. Clinicians identified factors in 3 domains that contribute to hospitalization decision-making for children with bronchiolitis: demographics, clinical factors, and social-emotional factors. Although many clinicians supported using SDM for hospitalization decisions, most reported using a clinician-guided decision-making process in practice. Clinicians also identified several barriers to SDM, including the unpredictable course of bronchiolitis, perceptions of parents’ preferences for engaging in SDM, and parents’ emotions, health literacy, preferred language, and comfort with discharge. Parents wanted the opportunity to express their opinions during decision-making about hospitalization, although they often felt comfortable with the clinician’s decision when adequately informed.
Although clinicians and parents of children with bronchiolitis are supportive of SDM, most hospitalization decision-making is clinician guided. Future investigation should evaluate how to address barriers and implement SDM in practice, including training clinicians in this SDM approach.
Bronchiolitis is the most frequent lower respiratory tract infection and the most common reason for hospitalization in children age <2 years.1 Of the >250 000 children evaluated for bronchiolitis annually in US emergency departments (EDs),2 up to 40% are hospitalized, with a total estimated annual cost of $734 million.3–5 Up to 14% of children with bronchiolitis have hospitalizations that last ≤12 hours without the need for major intervention, suggesting that hospitalization may not have been necessary.6 These short hospitalizations increase iatrogenic risks and costs.7 Additionally, hospitalizations are stressful for parents.8 Clinicians must weigh these risks of hospitalization against the risks of discharge from the ED when deciding whether to hospitalize a child with bronchiolitis. As seen in the available literature, researchers have suggested an ∼1% risk of a return visit to the ED within 12 hours that results in hospitalization6 and a 0.3% risk of admission to the ICU within 14 days.9 Having a young child at home with significant respiratory symptoms may also be stressful for parents.
Because the benefit/harm ratio of hospitalization is unclear for many children with bronchiolitis, some hospitalization decisions should incorporate both clinicians’ and parents’ input through a shared decision-making (SDM) process.10 SDM is a process through which clinicians and patients (or parents) work together to reach a decision, taking into account the best available evidence alongside patients’ preferences. During the SDM process, clinicians communicate benefits and potential harms of options while patients and families communicate their personal needs and preferences.11 Although the 2014 American Academy of Pediatrics guideline identifies SDM as a key tenet of patient-centered care for children with bronchiolitis,12 no study of SDM for bronchiolitis has been conducted.13 Understanding clinicians’ and parents’ perspectives on SDM for bronchiolitis can help clinicians to identify current practice patterns and barriers to implementing SDM for hospitalization decisions. Our objective was to elicit clinician and parent perspectives about (1) decision-making about hospitalization for children with bronchiolitis and (2) the use of SDM for these hospitalization decisions.
Methods
Study Sample
We conducted individual, semistructured interviews with clinicians (pediatric emergency medicine [EM] physicians and nurses) and parents of children with bronchiolitis.
Clinicians
We recruited physicians and nurses from the pediatric EDs at 2 quaternary care children’s hospitals: a freestanding midwestern children’s hospital pediatric ED (hospital 1) with ∼60 000 annual visits (∼1400 for bronchiolitis), and a northeastern children’s hospital pediatric ED (hospital 2) with ∼38 000 annual visits (∼800 for bronchiolitis) within a larger medical center. We recruited clinicians through e-mail using purposive sampling to ensure inclusion of clinicians with a range of experience as well as nurses. We included nurses because of their observations of decision-making and SDM during clinical care for bronchiolitis and their frequent communication of care plans to parents.
Parents
We recruited parents of children age <2 years with bronchiolitis without comorbidities evaluated in hospital 2. We screened the electronic health record system daily for eligible parents. Parents were enrolled in the ED or, in the case of hospitalization, on the inpatient floor. Because of visitor restrictions secondary to the COVID-19 pandemic, only 1 parent was present for most of the ED and inpatient care and approached for enrollment. We used purposive sampling to recruit parents of diverse demographic backgrounds, parents of children who were hospitalized or discharged from the ED (with or without a 72-hour return visit), and parents for whom SDM about hospitalization was and was not documented in the ED note. Although race and ethnicity are social and not biological constructs, we purposefully sampled to ensure inclusion of Hispanic and non-Hispanic Black parents given the documented disparities in management and hospitalization of children with bronchiolitis.14,15
Verbal consent was obtained from all participants, and each participant received a small monetary incentive. The institutional review board at Yale University determined the study to be exempt after limited review as the study only included interview procedures.
Interviews
The clinician interview guide included open-ended questions to elicit perspectives on communication, decision-making, and SDM for bronchiolitis, including challenges with decision-making and barriers to and facilitators of SDM. The parent interview guide included questions about perceptions of communication and decision-making and experiences with SDM about hospitalization. Probes were used to allow participants to elaborate on their responses.16 Interview guides were iteratively revised during interviews. The final questions are included in the Supplemental Information.
Interviews with clinicians were conducted using videoconferencing technology; interviews with parents were conducted by telephone or, for some hospitalized children, in the inpatient room. Two-thirds of parent interviews were performed within 72 hours of ED presentation; some were up to 9 days later. A pediatric EM physician trained in qualitative interviewing, not involved in the care of the children, conducted the interviews. Interviews were audio recorded and transcribed verbatim by a Health Insurance Portability and Accountability Act–compliant transcription service.
Clinicians completed a demographic survey asking for age, sex, race and ethnicity, and years of experience posttraining. Parents completed a survey asking for age, sex, race and ethnicity, number of children, highest education level, and preferences for participating in their child’s health care decisions.17 From the electronic health record, we extracted demographic, historical, and clinical information (eg, disposition) for each child.
Data Analysis
To identify themes, we conducted an inductive analysis that followed the principles of grounded theory.16 The investigator performing the qualitative interviews developed separate codebooks for clinicians and parents, and then coders independently applied codes to transcripts using the constant comparative method.18,19 The interviewer applied codes for all clinician and parent interview transcripts. The clinician interviews were also coded by 2 research team members (one an undergraduate student and one a graduate student) while the parent interviews were also coded by a research team member with training in qualitative data analysis and who is a parent of older children. The investigators met weekly to compare codes, resolve discrepancies by consensus, and iteratively revise the codebook. All transcripts were recoded to reflect the final coding framework. Data saturation was achieved after 24 clinician interviews and 20 parent interviews, consistent with the 20 to 30 interviews typically needed for data saturation.19,20 We used ATLAS.ti version 8 software for data management.
Results
Characteristics of Participants
Participant characteristics are listed in Table 1. We included 24 clinicians (17 physicians and 7 nurses) and 20 parents. Of the 17 physicians, 6 (35.3%) were from hospital 1 and 11 (64.7%) from hospital 2. The median years of experience as an attending physician was 8 (range, 1–34 years). Of the 7 nurses, 3 (42.9%) were from hospital 1 and 4 (57.1%) from hospital 2. The median years of experience as a nurse was 24 (range, 7–36 years).
Participant Characteristics
| Characteristic . | Value . |
|---|---|
| Clinicians, n | 24 |
| Physicians, n | 17 |
| Sex, n (%) | |
| Female | 9 (52.9) |
| Male | 8 (47.1) |
| Race and ethnicity, n (%) | |
| Non-Hispanic White | 10 (58.8) |
| Non-Hispanic Black | 0 (0) |
| Hispanic | 1 (5.9) |
| Asian | 4 (23.5) |
| Multiracial | 2 (11.8) |
| Years as an attending physician, n (%) | |
| 1–5a | 7 (41.2) |
| 6–10 | 2 (11.8) |
| 11–20 | 6 (35.3) |
| >20 | 2 (11.8) |
| Nurses, n | 7 |
| Sex, n (%) | |
| Female | 7 (100) |
| Race and ethnicity, n (%) | |
| Non-Hispanic White | 7 (100) |
| Years as a nurse, n (%) | |
| 1–5 | 0 (0) |
| 6–10 | 2 (28.6) |
| 11–20 | 1 (14.3) |
| >20 | 4 (57.1) |
| Parents, n | 20 |
| Sex, n (%) | |
| Female | 20 (100) |
| Age, median (IQR) | 32 (27–38) |
| No. children, median (IQR) | 2 (1–2) |
| Race and ethnicity, n (%) | |
| Non-Hispanic White | 9 (45) |
| Non-Hispanic Black | 3 (15) |
| Hispanic | 7 (35) |
| Other Non-Hispanicb | 1 (5) |
| Highest education degree obtained, n (%) | |
| No degreec | 1 (5) |
| Vocational-technical school | 1 (5) |
| High schoold | 6 (30) |
| College | 6 (30) |
| Graduate | 6 (30) |
| Preferences for making health care decisions for the child, n (%) | |
| Prefer to make final testing/treatment decision | 1 (5) |
| Prefer to make final testing/treatment decision after seriously considering physician’s opinion | 4 (20) |
| Prefer to share responsibility with the physician for testing/treatment decision | 11 (55) |
| Prefer that physician makes final testing/treatment decision after seriously considering the parent’s opinion | 3 (15) |
| Prefer to leave all testing and treatment decisions to the physician | 1 (5) |
| Age group of child, mo | |
| <2 | 6 (30) |
| 2–12 | 8 (40) |
| 13–24 | 6 (30) |
| Disposition of child at initial ED visit | |
| Hospitalizede | 13 (65) |
| Dischargedf | 7 (35) |
| Characteristic . | Value . |
|---|---|
| Clinicians, n | 24 |
| Physicians, n | 17 |
| Sex, n (%) | |
| Female | 9 (52.9) |
| Male | 8 (47.1) |
| Race and ethnicity, n (%) | |
| Non-Hispanic White | 10 (58.8) |
| Non-Hispanic Black | 0 (0) |
| Hispanic | 1 (5.9) |
| Asian | 4 (23.5) |
| Multiracial | 2 (11.8) |
| Years as an attending physician, n (%) | |
| 1–5a | 7 (41.2) |
| 6–10 | 2 (11.8) |
| 11–20 | 6 (35.3) |
| >20 | 2 (11.8) |
| Nurses, n | 7 |
| Sex, n (%) | |
| Female | 7 (100) |
| Race and ethnicity, n (%) | |
| Non-Hispanic White | 7 (100) |
| Years as a nurse, n (%) | |
| 1–5 | 0 (0) |
| 6–10 | 2 (28.6) |
| 11–20 | 1 (14.3) |
| >20 | 4 (57.1) |
| Parents, n | 20 |
| Sex, n (%) | |
| Female | 20 (100) |
| Age, median (IQR) | 32 (27–38) |
| No. children, median (IQR) | 2 (1–2) |
| Race and ethnicity, n (%) | |
| Non-Hispanic White | 9 (45) |
| Non-Hispanic Black | 3 (15) |
| Hispanic | 7 (35) |
| Other Non-Hispanicb | 1 (5) |
| Highest education degree obtained, n (%) | |
| No degreec | 1 (5) |
| Vocational-technical school | 1 (5) |
| High schoold | 6 (30) |
| College | 6 (30) |
| Graduate | 6 (30) |
| Preferences for making health care decisions for the child, n (%) | |
| Prefer to make final testing/treatment decision | 1 (5) |
| Prefer to make final testing/treatment decision after seriously considering physician’s opinion | 4 (20) |
| Prefer to share responsibility with the physician for testing/treatment decision | 11 (55) |
| Prefer that physician makes final testing/treatment decision after seriously considering the parent’s opinion | 3 (15) |
| Prefer to leave all testing and treatment decisions to the physician | 1 (5) |
| Age group of child, mo | |
| <2 | 6 (30) |
| 2–12 | 8 (40) |
| 13–24 | 6 (30) |
| Disposition of child at initial ED visit | |
| Hospitalizede | 13 (65) |
| Dischargedf | 7 (35) |
IQR, interquartile range.
Two third-year fellows who are attending physicians in an affiliated ED classified as 1 y of experience.
One mother identified as Persian.
One parent completed high school through 11th grade.
Two parents completed some college.
Four children hospitalized for <24 h.
Four children discharged from the ED had a 72-h return visit, and 3 were hospitalized.
Of the 20 parents interviewed, all were mothers, of whom 10 (50%) identified as non-Hispanic Black or Hispanic. When asked about their preferences for decision-making, 16 (80%) preferred to share the responsibility with the physician or make the decision themselves. Of the 20 children of participating parents, 13 (65%) were hospitalized, including 4 for <24 hours, and 7 (35%) were discharged from the ED, 3 of whom were subsequently hospitalized on a return visit.
Clinicians
Clinicians identified factors in 3 domains that they used to decide on hospitalization: (1) demographics, (2) clinical factors, and (3) social-emotional factors. Demographics primarily included the child’s age, with clinicians more likely to admit younger children, particularly those age <3 months. Some clinicians also incorporated day of illness in relation to age into decision-making and were more likely to admit younger children early in the course of bronchiolitis.
Clinical factors that influenced hospitalization decisions included work of breathing, oxygen saturation, and hydration status. Clinicians also considered social-emotional factors for hospitalization decisions, including parents’ emotions, comfort with discharge, and the degree of outpatient support, such as availability of follow-up with the child’s pediatrician. Nurses also identified their perception of parents’ ability to continue care at home as a factor that influenced decisions related to hospitalization (Table 2).
Domains That Clinicians Use for Decision-Making About Hospitalization for Children With Bronchiolitis
| Domain . | Representative Quotation . |
|---|---|
| Demographics | |
| Age | Physician: “I look at the patient age. Age is the big factor, at least for me, recognizing that the young infants are more at risk of decompensation, so those children who are—the 3-mo-old, the <6-mo-old who are kind of borderline….I may err on the side of caution, and that’s when I talk with the families about it and explain to them the typical course of RSV bronchiolitis, where it may be not as bad for the first couple days and then gets worse days 3–5, then gradually gets better. If they’re at that like day 2 where the parents say it’s getting worse—they look decent in the ER, but if there may be like low 90s in sats—the more high-risk patients, I have a little more conservative approach and maybe will admit them more frequently than the older children with bronchiolitis. Age is a factor.” |
| Clinical factors | |
| Work of breathing, oxygen saturation, and hydration status | Physician: “Really it comes down to 3 things. Is this child’s work of breathing sustainable, or is there a real concern that this child will tire out and need respiratory support? Is it safe? Their level of work of breathing is number 1. Number 2, is there a degree of hypoxia that’s unacceptable? Meaning say, sats below 92% or something along those lines. The final one is does this bronchiolitis make it so that this child’s hydration and nutrition are in jeopardy?” |
| Social-emotional factors | |
| Parents’ emotions, comfort with discharge, and degree of outpatient support | Physician: “When I think about the equation that runs into my mind, some of the other variables that are in that equation are things like…how do I feel the child’s support network is doing with caring for them? By that, I mean, not just the parent and the extended family and care providers but also the health care folks who are supporting the family. Is this an office that’s open over the weekend, and it’s a Friday, or is this child heading into a weekend where they don’t have anybody to check on them from a medical perspective? How is the family feeling? Have they been awake for 3 days straight with this child?” |
| Perception of parents’ ability to continue care at home | Nurse: “It really comes down to that work of breathing and being able to keep up with the suctioning. Some parents, they tell you they suction, but I’m sure they’re really not, or they’re not doing it as often as they think or they’re not doing it correctly at all. We have an idea of the success of a patient being able to stay at home versus get them into the hospital.” |
| Domain . | Representative Quotation . |
|---|---|
| Demographics | |
| Age | Physician: “I look at the patient age. Age is the big factor, at least for me, recognizing that the young infants are more at risk of decompensation, so those children who are—the 3-mo-old, the <6-mo-old who are kind of borderline….I may err on the side of caution, and that’s when I talk with the families about it and explain to them the typical course of RSV bronchiolitis, where it may be not as bad for the first couple days and then gets worse days 3–5, then gradually gets better. If they’re at that like day 2 where the parents say it’s getting worse—they look decent in the ER, but if there may be like low 90s in sats—the more high-risk patients, I have a little more conservative approach and maybe will admit them more frequently than the older children with bronchiolitis. Age is a factor.” |
| Clinical factors | |
| Work of breathing, oxygen saturation, and hydration status | Physician: “Really it comes down to 3 things. Is this child’s work of breathing sustainable, or is there a real concern that this child will tire out and need respiratory support? Is it safe? Their level of work of breathing is number 1. Number 2, is there a degree of hypoxia that’s unacceptable? Meaning say, sats below 92% or something along those lines. The final one is does this bronchiolitis make it so that this child’s hydration and nutrition are in jeopardy?” |
| Social-emotional factors | |
| Parents’ emotions, comfort with discharge, and degree of outpatient support | Physician: “When I think about the equation that runs into my mind, some of the other variables that are in that equation are things like…how do I feel the child’s support network is doing with caring for them? By that, I mean, not just the parent and the extended family and care providers but also the health care folks who are supporting the family. Is this an office that’s open over the weekend, and it’s a Friday, or is this child heading into a weekend where they don’t have anybody to check on them from a medical perspective? How is the family feeling? Have they been awake for 3 days straight with this child?” |
| Perception of parents’ ability to continue care at home | Nurse: “It really comes down to that work of breathing and being able to keep up with the suctioning. Some parents, they tell you they suction, but I’m sure they’re really not, or they’re not doing it as often as they think or they’re not doing it correctly at all. We have an idea of the success of a patient being able to stay at home versus get them into the hospital.” |
RSV, respiratory syncytial virus; sats, oxygen saturation.
Most clinicians were supportive of SDM for hospitalization decisions for “borderline” children with bronchiolitis, defined by clinicians as those children with moderate bronchiolitis symptoms but who did not require oxygen therapy, respiratory support, or intravenous hydration. Clinicians varied in what they considered SDM. Many described asking parents about their comfort level with disposition but did not have the parents express their values. Some clinicians reported driving the decision-making process by first giving their opinion and then assessing the parents’ preferences and comfort level. These approaches, however, are reflective of a clinician-guided approach and do not meet the criteria for SDM. One physician said:
Typically, just at least to get the conversation going, I’ll ask parents, “Here’s what we think, but what are your thoughts? What do you think? What do you think about having a stay in the hospital, or what are your thoughts about going home? Are you comfortable going home?” Just to kind of open the discussion and see what the parent says.
Few clinicians first had the parents express their concerns and preferences before making a joint decision:
So just trying to address specifics around going home, fears about admission, whichever way they are leaning. Yes, I feel comfortable including the parents, and also, it’s very important to get their input because I need to know how comfortable they are, because if they’re extremely uncomfortable or extremely comfortable, that will change the way I’m going to support the decision.
Some clinicians allowed some parents to make the choice about hospitalization after first assessing the parents’ ability to recognize the symptoms of worsening bronchiolitis if they were discharged from the hospital:
If it’s a parent that I feel is trustworthy, meaning they have a high degree of health literacy, and maybe they’ve experienced bronchiolitis before, so they know what to look for, I do explain to them in those borderline cases where their respiratory rate was in the 50s. Now it’s better, or they have some work of breathing, maybe mild retractions. I really describe to them what to look for and give them the 2 options of staying for observation or going home and keeping a close eye on both respiratory rate and work of breathing.
Clinicians also identified several barriers to SDM for hospitalization decisions, including clinical and social-emotional factors. Clinical factors included the presence of only 1 viable management option (eg, the child clearly requires hospitalization) and the unpredictable nature of bronchiolitis. Social-emotional factors included perceptions of parents’ ability and preference for engaging in SDM and parents’ emotions, health literacy, preferred language, and comfort with care at home (Table 3).
Barriers to SDM for Hospitalization Decisions
| Barrier . | Representative Quotation . |
|---|---|
| Clinical | |
| Decision not appropriate for SDM | Physician: “I think one big thing a lot of us will feel is if there isn’t something that—especially I guess bronchiolitis there’s some areas that are gray, but when it’s not gray, I think it’s then hard to then say, ‘Oh, we’re going to make shared decision-making,’ but it’s actually no, this is what should happen.” |
| Unpredictable clinical course | Physician: “I think it’s hard to ask the parent to weigh in acutely on the expected clinical course. I don’t find there’s a lot of families who are able to really meaningfully engage in a conversation about what I expect their child’s oxygen saturation or work of breathing or things like that to do because, quite frankly, I think, sometimes, we struggle as medical providers to understand exactly what that trajectory might look like.” |
| Social-emotional | |
| Perception of parents’ ability and preference for engaging in SDM | Physician: “There are situations where I think families like to participate. I think other situations; I think they feel very stressed by that and that they don’t want to be responsible for the decision. They want the decision to be your decision. Sometimes I feel like I go into a room and I’m being very empowering to the family and I realize that when I am through, it’s actually made them more bewildered and they really want me to say what to do. I think it’s a real balance. I’m not sure I know which families it helps with and which families it doesn’t.” |
| Parents’ emotions | Physician: “Maybe objectivity, is that—although we do presume that their parents have some subjectivity when it comes with their children’s. How do you—I guess that’s the tension, that we have to acknowledge that their parents want the best for their kids, but they might be emotionally attached in a way that makes our objective decisions more difficult than it is for the physician.” |
| Parents’ health literacy and preferred language | Physician: “I think a potential barrier could be health literacy or even limited English proficiency where you’re trying to explain these complicated situations through an interpreter. Something may get lost in translation.” |
| Parents’ comfort with care at home | Nurse: “I think it really depends on if the kid looks well, and they feel comfortable being able [to suction]. Because if they’re not going to suction the kid, then I don’t know how they’re going to do it at home. I try to have them do it here just to see their take and feel and comfort on it. I mean, it is ultimately their decision. I think if they’re hesitant on if the baby’s going to feed or if they’re going to be able to do that stuff at home, then I think it is appropriate to admit them. I think it depends on their comfort level.” |
| Barrier . | Representative Quotation . |
|---|---|
| Clinical | |
| Decision not appropriate for SDM | Physician: “I think one big thing a lot of us will feel is if there isn’t something that—especially I guess bronchiolitis there’s some areas that are gray, but when it’s not gray, I think it’s then hard to then say, ‘Oh, we’re going to make shared decision-making,’ but it’s actually no, this is what should happen.” |
| Unpredictable clinical course | Physician: “I think it’s hard to ask the parent to weigh in acutely on the expected clinical course. I don’t find there’s a lot of families who are able to really meaningfully engage in a conversation about what I expect their child’s oxygen saturation or work of breathing or things like that to do because, quite frankly, I think, sometimes, we struggle as medical providers to understand exactly what that trajectory might look like.” |
| Social-emotional | |
| Perception of parents’ ability and preference for engaging in SDM | Physician: “There are situations where I think families like to participate. I think other situations; I think they feel very stressed by that and that they don’t want to be responsible for the decision. They want the decision to be your decision. Sometimes I feel like I go into a room and I’m being very empowering to the family and I realize that when I am through, it’s actually made them more bewildered and they really want me to say what to do. I think it’s a real balance. I’m not sure I know which families it helps with and which families it doesn’t.” |
| Parents’ emotions | Physician: “Maybe objectivity, is that—although we do presume that their parents have some subjectivity when it comes with their children’s. How do you—I guess that’s the tension, that we have to acknowledge that their parents want the best for their kids, but they might be emotionally attached in a way that makes our objective decisions more difficult than it is for the physician.” |
| Parents’ health literacy and preferred language | Physician: “I think a potential barrier could be health literacy or even limited English proficiency where you’re trying to explain these complicated situations through an interpreter. Something may get lost in translation.” |
| Parents’ comfort with care at home | Nurse: “I think it really depends on if the kid looks well, and they feel comfortable being able [to suction]. Because if they’re not going to suction the kid, then I don’t know how they’re going to do it at home. I try to have them do it here just to see their take and feel and comfort on it. I mean, it is ultimately their decision. I think if they’re hesitant on if the baby’s going to feed or if they’re going to be able to do that stuff at home, then I think it is appropriate to admit them. I think it depends on their comfort level.” |
Parents
Parents reported mixed experiences with their involvement in hospitalization decisions in the ED. Some parents said that they did not participate in decision-making, and a few of these expressed that they would have needed more information to participate:
Well, what could be some of the things that could happen? The oxygen saturation, what should her oxygen be? What should I look for when she has—what if she starts turning blue? How much time would I have to get her to the hospital if she starts to decompensate or her oxygen levels aren’t being maintained over night?…For me staying there, I would want to know what would they be doing? How would they be monitoring her? What are some of the things that they would possibly be looking at? Would they be checking her oxygen continuously? What if she does need oxygen? How long does she need to be on it for? How long does she need to be off of the oxygen to go home? What if she’s on oxygen, and then we take her off, and she doesn’t do well? What happens if we’re back and forth with oxygen?”
One mother felt uninformed and frustrated that she was not presented with options:
I’m at a point where I’m really frustrated about the whole situation, the way that it’s happening. I feel like, as parents, we obviously don’t know anything that the doctors know because we don’t know medical terms….I feel like they should be coming to us with all these options, laying them down, and explaining them.
Other parents said that although the medical team guided the process and gave a recommendation, they had the opportunity to express their opinions. One mother said:
They asked us initially if we were comfortable staying or if we were comfortable going home. We were kind of in between on it because he had just started breathing so much worse that day, so they said that we can just stay and they’d like to admit him just because he was a preemie and he did have a NICU stay when he was first born.
Several parents felt that they made the disposition decision. A mother of an infant discharged from the ED said:
I told them that if he’s not really that bad to stay, I will go home. I just wanted to make sure that he wasn’t getting really, really bad, and he’s doing good. They told me that he was doing good, so I was like, “Okay, so I can go home.”
Although they were not always involved in decision-making, most parents felt comfortable with the decision that was made, often agreeing with the decision after clinicians explained the rationale and the parents felt informed. For parents of children who were hospitalized, they often felt reassured to have their child monitored and, after monitoring, less nervous about going home. A mother of an infant hospitalized for <24 hours said:
I feel much calmer now that I’m home with her. I know we made the right decision of staying overnight. I know that she’s well enough now to get over the virus. I’m just very happy that I stayed overnight because if I was home, I would be worrying, “Oh, is she okay? Is she not okay?” Being in the hospital, I got confirmation that she’s able to get over the virus.
Reassurance from clinicians was also helpful for parents of children discharged from the ED. One mother said:
Just knowing that she could breathe, that she was still getting the amount of air that she needed because, to me, that was the most concerning part…the most important part to me was them saying that she was breathing well and that that was all working for her. That was the most important thing.
Parents expressed trust in the medical team and felt confident in the team’s decision about hospitalization, even though some were nervous or scared of being admitted. A mother of a hospitalized infant said:
I was nervous at first…I wouldn’t say hesitant because I trust the doctors and the nurses and what they think is best for her. When they said that she had to be admitted, I just told them, “Whatever you guys think is good.”...of course, I was scared at first. I was emotional, but I knew that that was the best decision for her.
Ultimately, most parents wanted to express their opinions during decision-making when either hospitalization or discharge would be reasonable. One mother said:
If they think that it’s something that’s really serious, and I’m not competent, and I’m saying she’s already having difficulty breathing, and I’m like, “No, I want to go home,” then they should step in be like, “You’re nuts. You should stay.” If it’s something where they feel like it could go either way, then I want to be involved in that decision-making.
Another mother added:
It’s great to have a weigh-in and kind of feel a part of the process, of course, because there’s security in that, and there’s a feeling of inclusiveness.
Discussion
In this qualitative study, clinicians reported using demographic, clinical, and social-emotional factors in making hospitalization decisions. For children with borderline clinical factors, many clinicians stated that they were supportive of using SDM for hospitalization decisions, although most described using a clinician-guided decision-making process in practice. Additionally, clinicians identified several barriers to SDM. Although parents wanted the opportunity to express their opinions during decision-making, many eventually deferred the decision to the medical team.
Hospitalization rates for bronchiolitis remain high, with only a marginal decrease since the publication of the American Academy of Pediatrics guideline.21 Although several studies have identified predictors of major interventions or, conversely, safe ED discharge, there is no validated prediction model to aid in hospitalization decisions for children with bronchiolitis.9,22–25 Consistent with our findings, clinicians may use mostly subjective clinical and social-emotional factors for hospitalization decisions. Beyond the child’s age, respiratory, and hydration status, clinicians also gauge the parents’ emotions, comfort level, and level of outpatient support, all of which affect the clinicians’ perceptions of whether the parents can provide the supportive care needed at home. Clinicians should be aware of the subjectivity in making these judgments, and they should actively engage parents in deciding whether they are comfortable with providing care at home.
In approaching SDM about hospitalization decisions for bronchiolitis, clinicians should similarly recognize their potential biases in making a judgment about the parents’ desire and ability to participate in SDM. In previous studies, investigators suggested that most adult patients want to be invited to participate in decision-making, even if they eventually defer decision-making to clinicians.26 Our findings were similar in that most parents of children with bronchiolitis wanted the opportunity to express their preferences. Although many clinicians were supportive of SDM for children with moderate bronchiolitis symptoms, most described a clinician-guided approach that did not include having the parents express their values and preferences before the clinician gave a recommendation, a discrepancy documented in other care settings.27 For parents to communicate their goals and preferences, they need to first be adequately informed about the trade-offs between options.28 Parents of children with bronchiolitis often have substantial information needs that, if unaddressed, can prevent them from participating in decision-making and can lead them to feel uninvolved in their child’s care plan.8 Communicating the benefits and potential harms of hospitalization versus discharge from the ED can help to address these information needs, help parents to participate in SDM, build parents’ confidence in decision-making, and enhance trust in the medical team.
Despite their overall support of SDM, clinicians identified several barriers. The unpredictable nature of bronchiolitis was identified as a barrier to giving parents information on risks and what to expect for the course of illness. Other identified barriers to SDM included parents’ ability and preference to participate in SDM, with a concern that parents might feel burdened if asked to make a decision and that parents’ emotions could negatively affect their ability to objectively weigh the risks and benefits of hospitalization versus discharge. Parents’ health literacy was also identified as a barrier to understanding information on risks and benefits, whereas parents’ preferred language raised concerns about clinicians’ ability to effectively communicate if an interpreter was needed. These barriers can be overcome by using plain-language communication accessible across literacy levels such that parents can decide whether and how they would like to participate.28 Many of these barriers could also be addressed with an evidence-based decision aid to facilitate the SDM process.29
Our study has several limitations. First, clinicians’ perspectives on decision-making and SDM about hospitalization may not represent their actual clinical practice. Second, the perspectives of clinicians and parents in our study may not be representative of all pediatric EM clinicians, those at general EDs, or all parents. However, we interviewed clinicians from 2 institutions and parents from diverse sociodemographic backgrounds, including parents of children who were hospitalized and those discharged from the ED. Third, although interviews were performed by a pediatric EM physician, which may have influenced participants’ responses, the physician was not involved in the care of any of the children. Finally, most interviews were not conducted in the ED, and outcomes of the children with bronchiolitis may have influenced parents’ perceptions of decision-making.
Conclusions
Hospitalization decisions for children with bronchiolitis are likely driven in part by clinicians’ interpretation of subjective clinical and social-emotional factors. Although clinicians were supportive of SDM for disposition decisions and parents wanted the opportunity to express their opinions, most decision-making is clinician guided in practice. The focus of future work should be on how best to implement SDM with parents of children with bronchiolitis and training clinicians in this SDM approach.
Acknowledgments
The authors express their immense gratitude to the parents, nurses, and physicians who participated in this study and shared their experiences.
FUNDING: This project was supported by Agency for Healthcare Research and Quality grant K08HS026006 to Dr Aronson. The content is solely the responsibility of the authors and does not necessarily represent the official views of the Agency for Healthcare Research and Quality. The funder did not participate in the work.
CONFLICT OF INTEREST DISCLOSURES: The authors have indicated they have no conflicts of interest relevant to this article to disclose.
Dr Aronson conceptualized and designed the study, developed the interview guides, conducted the qualitative interviews, performed the qualitative data analyses, drafted the initial manuscript, and critically reviewed and revised the manuscript; Ms Schaeffer contributed to the development of the interview guides, performed the qualitative data analyses, and critically reviewed the manuscript; Ms Ponce and Ms Gainey performed the qualitative data analyses and critically reviewed the manuscript; Drs Politi and Fraenkel contributed to the design of the project and critically reviewed and revised the manuscript; Dr Florin contributed to the conceptualization and design of the project and critically reviewed and revised the manuscript; and all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
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