Parent Experiences Caring for a Child With Bronchiolitis: A Qualitative Study

Sample

Qualitative description guided this study (14,15). Participants were recruited by purposive sampling (16), at the Stollery Children’s Hospital emergency department (ED). Participants were eligible if they were (a) a caregiver of a child 16 years old or younger; (b) presenting to the ED seeking care for their child with respiratory symptoms; and (c) fluent in English. In the ED, clinical team members identified eligible participants via the ED Information System and notified the Stollery research recruitment team so potential participants could be approached after triage in the ED waiting room. AC followed up with interested caregivers by telephone or email to schedule an interview once participants had been discharged home.

Data Collection

Data collection and analysis occurred concurrently until data saturation was achieved (16). Research assistants trained in qualitative data collection (AC, SLP) followed up with interested caregivers by telephone to schedule an interview at a mutually agreed upon date, time, and location or by telephone. Caregivers completed demographic information forms after consenting to participate. A semi-structured interview guide was used to capture caregiver experiences in relation to their child’s bronchiolitis (see Supplemental Appendix). Interview questions moved from general to more specific with later interviews becoming more focused.

Data Analysis

Interviews were digitally recorded, transcribed verbatim and uploaded to NVivo 12 qualitative data management software (17). Data were analyzed thematically by a research assistant trained in qualitative data analysis (AC) and reviewed by the research team. No predetermined themes were created, rather attributes were derived from the data as the analysis progressed (18). Data analysis followed 4 steps. First, transcripts were read in detail several times. Second, AC conducted open coding of all transcripts and grouped codes into preliminary themes. Third, preliminary themes were grouped into a beginning organizational framework according to specific experiences. Field notes documented impressions and decisions. Rigor was enhanced through methods proposed by Morse (19) including thick description, and discussions among authors in which the coding framework, analytic procedures, preliminary findings, and interpretations were reviewed. Demographic data were analyzed descriptively.

Their Children’s Symptoms and Behaviors

All children in our study could not verbalize feeling unwell, leaving parents to interpret the presence and severity of symptoms. Parents reported their child experiencing a loss of energy, appetite, and seeming generally uncomfortable. As one parent described,

“So first, they get a cold, runny nose, they’re still pretty energetic. And the next thing you know—like the following day, they’ll start a little cough. And then, I would notice a bit of wheezing coming in as well. He started getting more fussy, and restless.” (B-001).

Bronchiolitis Affects the Entire Family

Parents reported caring for a child with bronchiolitis caused emotional strain and impacts family life. One parent reported, “I feel helpless” (B-001). All parents were experiencing bronchiolitis for the first time, which elevated their fear and anxiety. One parent said, “Yeah. Of course, we feel nervous. Because it’s our first time to experience this, we don’t know what to do if the baby is having difficulty breathing.” (B-044). Parents reported feeling unprepared stating, “we weren’t prepared for how sick he would get.” (B-023).

Some parents (n = 4) were health care professionals (HCPs), but working in health care did not ease their fear and anxiety or prepare them for when their child became sick. One HCP parent stated, “Sometimes we think that we know what we’re doing, but it’s totally different when it’s your own child right?” (B-001). Parents reported losing sleep and combined with stress and worry sometimes resulted in tension in their family. As one parent stated, “Lack of sleep, honestly it was very stressful for both of us, obviously created some tension when you’re not sleeping.” (B-026).

Daily routines were disrupted, as parents typically had to take time away from work to care for their child. Children often had to miss child care to prevent passing on their symptoms. For children hospitalized, parents would often stay in hospital with them. For families with other children at home, this meant that while one parent was in hospital the other had to stay home from work with the other children. One parent said,

“We had to quit everything we were doing, ‘cause I was with him in the hospital for four days. And my husband was affected and my daughter as well. Like he had to drop everything he was doing to come help us.” (B-042).

Factors Influencing Parent’s Decision to Go to ED

Many parents’ decision to go to the ED was based on their child’s work of breathing. It was common for parents to wait 3 to 5 days before seeking emergency care when their child first began experiencing symptoms. However, as soon as their child’s breathing worsened, parents took them to the ED right away. One parent said, “With the breathing, for sure. He was working you know, a little bit more to breathe. And then, I noticed that he became kind of…he was restless, then he became kind of lethargic.” (B-001). Another parent said, “Yeah…we took them because their breathing was—it was apparent that they’re struggling to breathe.” (B-026).

Some parents decided to go to the ED due to persistent high fevers (>39.5 °C). One mother said, “His fever lasted for more than three days. I think it was the third day I took him in—and his cough was just super bad.” (B-005). Most parents described follow-up appointments with their pediatrician, but it was not common to take their child to see their pediatrician initially.

In Alberta, Alberta Health Services (AHS) Health Link provides a 24/7 telephone nurse advice and general health information service. Parents reported phoning AHS Health Link and taking their child to the ED based on the recommendation they received. One parent said, “We called our health link and they said to go to the hospital right now.” (B-026). In contrast, another said, “Yeah, I would definitely call health link if it was something different, but at that moment in time it was kind of like an emergency situation, so I didn’t.” (B-028).

Emergency Department Experience for Parents and Their Children

Parents reported having to wait hours (4-12 hours) in the ED before seeing a doctor. Others reported being assessed quickly (within 30 minutes). One parent said, “I was actually worried we were going to have to sit there for a while. But the nurse took me in right away, it was, I don’t know, less than 10 minutes.” (B-042). Another parent with sick twins said, “They got us in quickly when they realized the trouble the girls were having.” (B-026). Once assessed by a doctor, children were either sent home (n = 4), advised to wait in the ED for at least 12 hours for further testing/monitoring (n = 3), or admitted to an inpatient medical unit (n = 6). One parent said, “He ended up having to be admitted overnight for low sats.” (B-001). Another said, “They assessed and monitored them and didn’t let them go until they were confident they were okay.” (B-026). Two children were admitted to the intensive care unit for 3 days, followed by 2 days on an inpatient medical unit. This occurred in 2 cases due to severity of the episodes.

Children sent home after assessment were advised to monitor symptoms or were prescribed medications, such as bronchodilators (eg, Ventolin inhaler). Others were given oral steroids like, dexamethasone. One parent, sent home without medication said, “They [physician] just asked us to get some Tylenol.” (B-035). Some children were prescribed antibiotics like, amoxicillin. Parents stated antibiotics were prescribed as a precautionary medication where a bacterial infection, such as pneumonia, was suspected. One parent stated, “They asked me to use the antibiotic until they got the results [lab results]” (B-040). Some parents who were sent home, came back to the ED for reassessment as they felt symptoms were worsening or not improving (n = 5).

Children were advised to wait in the ED for further testing or monitoring to rule out other problems (eg, pneumonia) or to assess how the child responded to treatments (eg, nebulized medications). One parent said, “They did the urine, the blood tests, and the x-ray to make sure that it wasn’t anything like pneumonia.” (B-005). Another parent said, “They were just watching her. They waited to see if after they gave her that mask [nebulizer] if she’d pick up a bit” (B-043). The most common reasons for children being admitted to an inpatient medical unit was low oxygen saturations on room air (<90%) indicating the child required oxygen therapy.

The tests and procedures performed in the ED varied. Many children received a diagnosis of bronchiolitis based on low oxygen saturations (<90%) on room air. Another common test performed was a nasal swab, where a mucous sample was obtained from the child’s nose and sent for testing. Some parents reported their child having chest X-rays or blood work. Other procedures, such as urine tests, were not typically performed or only performed to rule out other potential problems. Parents reported their children being irritable, often accompanied by inconsolable crying during tests and procedures, making for a traumatic experience. One parent said,

“He didn’t like the hospital for sure. He hated it, actually. And when they had put the nasal prongs in he just—he was trying to rip it out of his nose. So yeah, he didn’t sleep much at all.” (B-001).

Bronchiolitis Treatment and Management in ED

Children were placed on pulse oximetry in the ED (measured blood oxygen saturation). If low (<90%), children were placed on oxygen therapy. Two children, with severe bronchiolitis, were placed on an Optiflow machine which administers warm and humidified high-flow oxygen via nasal cannula. Suctioning of the nose due to excessive mucus production was performed on most children. One parent said, “Yeah, every hour we needed to call the nurse for them to suction his nose.” (B-044). Some children received bronchodilators (ie, Ventolin) and/or corticosteroids (ie, dexamethasone). Children who were eating and drinking less, received rehydration therapy. Once children were able to maintain adequate oxygen saturations (without oxygen therapy), they were sent home. A few children were sent home with inhalers (ie, Ventolin, Q-Var), but the majority of children were sent home with instructions to monitor symptoms and make a follow-up appointment with their pediatrician in 1 to 2 weeks.

More than half of parents indicated not receiving education about bronchiolitis. During their time in the ED, one parent said,

“People were kind of like staring—outside of our room. And there’s a crowd of doctors and nurses, but nobody was really communicating to us what was going on. So that was hairy, ‘cause we could tell that they were concerned or that they were watching him, but they wouldn’t communicate to us.” (B-023).

Their Child’s Symptoms and Behaviors

Parents described common bronchiolitis symptoms, including difficulty breathing, excess mucous production and increased irritability. While these symptoms are common, parents admitted not knowing these symptoms were indicative of bronchiolitis. This finding is congruent with other qualitative work, where parents regarded these symptoms as unusual and worrisome, but were unable to recognize them being related to RSV, or when to go to the ED (20,21).

Bronchiolitis Affects The Entire Family

Our findings suggest bronchiolitis causes emotional strain for parents and disruptions of daily routines. These findings are similar to another study by Leidy et al (7) reporting parents of RSV-infected children show anxiety levels similar to those of mothers with premature infants in the neonatal intensive care unit. Leader et al (22)found that infants hospitalized for RSV infections results in numerous time, productivity, and out-of-pocket losses for parents. This study found the average time burden associated with an RSV hospital admission for full-term infants was 3 to 4 days and increased for premature infants (5-6 days). These time losses are slightly higher compared to children in our study. However, children less than 1 year, premature infants, or those considered to have severe RSV infections had longer admissions.

All parents experienced bronchiolitis for the first time, causing feelings of worry and unpreparedness, as they had no experience against which to judge the illness (23). Similarly, Peeler et al (20) found mothers expressed intense fear when their child was diagnosed with bronchiolitis due to feeling unprepared and not understanding what was happening or going to happen to their child. Through discussion with parents, it is clear that bronchiolitis can be as distressing for them as for children.

Bronchiolitis negatively impacts quality of life for families. Lack of sleep, worry, feeling helpless, and having to alter daily schedules are most affected. Lapillonne et al (24) found similar results. This study, and others, found the emotional impacts and alteration to daily schedules persists several weeks after hospital discharge (7,24).

Emergency Department Experience for Parents and Children

The ED experience for parents and children in our study mirror the published literature on practice variation for bronchiolitis (25,26). While some parents received care in accordance to current practice guidelines, others did not. It is recognized that the decision to hospitalize a child with bronchiolitis is a complex process impacted by the course of the illness and other clinical, social, and resource factors. However, lack of standardization in treatment can result in unwarranted care and economic and resource strain to the health care system (26). A large international study on practice variations in acute bronchiolitis revealed more than 30% of infants hospitalized for bronchiolitis did not receive any evidence-based supportive therapies. Not only does this practice variation occur between hospitals and facilities but within hospitals among different physicians (25). This may explain why some parents who made multiple trips to the ED received different care each time.

Parents feared for their child when they had bronchiolitis. Similar to the study by Peeler et al (20), parents felt they were unable to control the situation; they felt fearful and helpless and questioned their parenting skills. Parents described procedures performed on the child such as X-rays, nasal suctioning, and oxygen therapy as traumatic to witness. Leidy et al (7) also found caregivers described the procedures performed on children to be among the most stressful aspects of their experience with bronchiolitis.

Supportive care is the cornerstone of treatment for bronchiolitis. The main management goals are to ensure adequate oxygenation and hydration. Supplemental oxygen is not recommended unless oxygen saturations persist below 90%. Limited suctioning to clear the nares is also recommended, as there is insufficient evidence to support its use. (25,27). Children were commonly treated with bronchodilators and oxygen therapy, viral studies, and X-rays in the ED. These treatments place significant burden on the child and family, in addition to increasing health care costs. Furthermore, despite the implementation of treatments such as bronchodilators, X-ray, or viral studies, these treatments and investigations may potentially add little in managing bronchiolitis (28). In fact, bottom-line recommendations indicate that routine laboratory tests and chest X-rays are not helpful in diagnosing or managing bronchiolitis and chest X-rays are associated with increased use of antibiotics, which are also not a recommended treatment (27). The variation in treatment practices further highlights a need for improved knowledge translation (KT) processes among HCPs that will allow recommendations to be disseminated widely.