Understanding Parents’ Experiences and Information Needs on Pediatric Acute Otitis Media: A Qualitative Study

Sample

Purposive and convenience sampling approaches were used. Participants were recruited from a specialized pediatric emergency department (ED) in a major Canadian urban center. The inclusion criteria for study participation were (1) parent or guardian of a child 1 to 16 years old; (2) parents seeking care in the hospital ED for AOM or have a child who had AOM within approximately the past 6 months; (3) parent or guardian is fluent in English; and (4) parent agrees to be contacted by research team for one-on-one interview. In the ED, clinical team members located eligible participants via the ED information system and notified the recruitment team, so potential participants could be approached after triage. The first author (Sandelowski M) followed up with interested caregivers by telephone to schedule an interview. Iterative data collection and analysis occurred over a 6-month period until data saturation was achieved (23).

Data Collection

After consenting to participate, parents/guardians completed demographic information forms. The first author conducted 16 semistructured interviews that ranged in length from 8 to 40 minutes. The average duration was 19 minutes. Interviews were conducted in person at a place convenient for participants or by telephone, digitally recorded, and transcribed verbatim. A semistructured interview guide was used to explore parent’s experiences with their child’s current AOM episode or express their experiences in general (see Supplemental Material: Interview guide).

Data Analysis

Demographic data were analyzed descriptively. Qualitative data analysis was completed using thematic analysis aided by NVivo software (version 11; QSR International Pty Ltd, Australia) and was reviewed by the research team throughout the analytic process. Thematic analysis is a method for identifying, analyzing, and reporting repeated patterns of meaning (themes) across a data set (24). The steps in data analysis included becoming familiar with the data, generating initial codes, searching for themes, reviewing and refining themes, defining and naming themes, and writing the report (24).

First, transcripts were read in detail several times. Second, the first and second authors independently analyzed the data and discussed emerging themes. Third, preliminary categories across cases were grouped into a beginning organizational framework according to explicit information needs (eg, AOM symptoms, causes, medications, and management). Throughout the analysis process, analytic rigor was enhanced by discussions among all the authors to review the coding framework, analytic procedures, preliminary findings, and interpretations.

Demographics

Sixteen interviews were conducted with parents of children who experienced AOM. The demographic characteristics of participants are presented in Table 1. The mean age of children brought to the ED was 5.74 years. The majority of these children had multiple AOM episodes (n = 13, 81.3%), whereas only 3 (18.8%) children experienced their first episode of AOM. Thematic analysis of the interviews revealed 7 major themes: (1) frequency of AOM, (2) symptoms of AOM experienced by children and parents, (3) AOM symptom management strategies used by parents, (4) parents’ beliefs about AOM, (5) parents’ satisfaction with treatment prescribed by physicians, (6) the effect of AOM on family’s quality of life, and (7) parents’ source of information about AOM. Overall, interviews revealed that children experiencing AOM often present with similar symptoms and that AOM can have significant negative effects on both the child and the family.

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Table 1.

Demographic Characteristics of Sample of Parents of Children With AOM.^a

Variable	N	%
Gender
Female	16	100
Parent’s age
20-30 years	3	18.8
31-40 years	8	50.0
41-50 years	4	25.0
51 years and older	1	6.3
Marital status
Married	14	87.5
Single	2	12.5
Household income
Less than $25 000	1	6.3
$25 000-$49 999	2	12.5
$50 000-$74 999	2	12.5
$75 000-$99 999	4	25.0
$100 000-$149 999	1	6.3
$150 000 and over	5	31.3
I do not want to share this information	1	6.3
Highest level of education
High school diploma	3	18.8
Some postsecondary	3	18.8
Postsecondary certificate/diploma	3	18.8
Postsecondary degree	3	18.8
Graduate degree	4	25.0
Total number of children in the house
1 child	5	31.3
2 children	9	56.3
3 children	1	6.3
5 children	1	6.3
Age of child with AOM
Under 1 year old	1	6.3
1-2 years old	4	25.0
3-5 years old	5	31.3
6-10 years old	3	18.8
11-18 years old	3	18.8
Frequency of AOM
First episode	3	18.8
Multiple episodes	13	81.3

Abbreviation: AMO, Acute otitis media.

^aN = 16.

Frequency of AOM

Interviews revealed that it was not uncommon for children with AOM to experience more than 1 episode per year. Parents were often uncertain of the exact number and reported that their child had “numerous episodes” of AOM (participants 2 and 6). Parents with young children, aged 1 to 3 years, reported multiple AOM episodes averaging 1 to 4 per year when compared to children older than 3 years of age. Six of 16 children had 1 to 2 episodes per year, while 3 of 16 children experienced more than 3 episodes per year. The remaining participants (n = 7) could not provide an exact number of episodes per year. One participant said her son had “an earache probably…once every year or two” (participant 8), and another said that her daughter “started when she was 3 months old with ear infections” (participant 6). One mother reported that her daughter typically “gets 1 or 2 a year. But this year she’s had—that was her third ear infection in the last 2 months” (participant 2). Another said her son had multiple ear infections. “I think this is…4 this year, so far” (participant 15). Three participants experienced their child’s first-ever ear infection.

Acute Otitis Media Symptoms Experienced by Children

Participants with younger children (n = 10) aged 1 to 5 years commonly reported their child becoming irritable when experiencing AOM, often displaying inconsolable crying or screaming. Presence of a cold or flu-like symptoms were common associations with AOM in all age-groups, followed by pain, and fever. Participants described the presence of symptoms as:

[He’d] just get really irritable, he wouldn’t look well, and he’d get a fever. (participant 12)

She’s crying and screaming and I basically have to rush her to the emergency room. (participant 2)

The last time he was just sick with, you know, cold, flu [then] started having ear pain, crying a lot and had a fever. (participant 9).

Acute Otitis Media Symptom Management Strategies Used by Parents

The majority of participants (n = 14) reported using an age-appropriate dose of acetaminophen (Tylenol) or ibuprofen (Advil) or alternating between the 2 to treat pain and fever associated with AOM. Administration of these medications was both a parental decision and recommended by physicians.

So, I’d give her Advil when it started to hurt a little bit. Four hours later or whatever, I’d give her the Tylenol. (participant 2)

I had been told by the doctors to give her Tylenol—infant Tylenol, the children’s Tylenol to help bring down the fever. (participant 7)

Parents’ Beliefs About AOM

Parents understood bacteria to be the underlying cause of AOM. Some believed that environmental factors, such as cold weather or water in the ears, was the cause.

I thought maybe the swimming was causing the ear infections. (participant 6)

Parental Satisfaction With Treatment Prescribed by Physicians

The majority of participants (n = 12) reported that their child received some form of antibiotic treatment for AOM, oral antibiotics being the most common among all age-groups. Amoxicillin was the oral antibiotic prescribed in most cases, for a duration of 5 to 10 days. Four participants reported antibiotic ear drops being prescribed and 1 reported a prescription for an antibiotic cream. Only 6 (<40%) participants were satisfied with the antibiotic treatment plan:

I’m satisfied because they’re giving me what I need at that time. (participant 2)

If they [physicians] say like he needs antibiotics, I usually do what they say (participant 16).

Parent Experiences and AOM Effects on Family’s Quality of Life

Overall, participants reported that caring for a child with AOM does impact daily life and can cause emotional strain for parents. Participants with children aged 1 to 5 years (n = 10) often reported feeling fear, stress, anxiety, and worry. One participant said “I hurt for him” (participant 15). Another parent mentioned that “It’s hard for a parent too” (participant 12). One participant said “it was very distressing to me” (participant 10). Another participant stated: “It’s emotionally draining, it’s physically draining, and sometimes—you just wish that you could fix it” (participant 9).

Parents caring for younger children (aged 1-3 years) expressed more fear and anxiety when their child experienced their first episode of otitis media (n = 3) than parents caring for children older than 3 years of age and having experienced multiple episodes (n = 13). As one parent explained, “In the beginning, the first one was the one where you were like—what is that? and then after that…you had learned things” (participant 5). Daily routines were often disrupted as parents typically had to take time away from work to care for their child. In some instances, time away from work caused financial strain for families. Children often had to miss school or child care due to the pain and fever of AOM. “It definitely impacted our lives,” one participant said. “Every time we’ve had to—well, you lose sleep, because he’s up all night [and so we] have to cancel work” (participant 1). Another participant recalled that their son had to miss day care for 2 weeks, but the family had to pay anyway, “I had to cancel 2 contracts because of my child’s ear infection—because she didn’t go to day care for 2 weeks. So, it would cost us the price of day care for 2 weeks” (participant 7).

Some participants reported that they did not always feel confident treating their child’s symptoms and often contemplated whether to seek medical attention. One participant stated: “I get nervous. Should I go, should I not go? Am I wasting people’s time? Is this a legitimate concern?” (participant 6). Another participant reported feeling guilty for not tending to her child’s symptoms earlier: “My husband and I are terrified, because it’s like, why is this seeping out of his ear? So, it’s been yeah, you know, it’s scary. You feel awful. It’s like, why didn’t I pick that up sooner?” (participant 1).

Parent’s Source of Information About AOM

Participants (n = 9) reported that they preferred to take their child to see their own pediatrician to seek medical advice or the local ED. In the province of Alberta, AHS Health Link provides a 24/7 telephone nurse advice and general health information service. Participants did report phoning AHS Health Link when they were uncertain if their child needed to be seen by a physician (n = 6). More than 50% of parents (n = 9) preferred to receive information from health-care providers and believed that health-care professionals knew best: “I trust my pediatrician only for any health-related information, she’s phenomenal” (participant 12). However, only 2 of 16 parents reported that they received an adequate explanation about AOM and its management.

In addition to seeking information from health-care professionals, parents would use Internet search engines, (eg, Google) to look up information about childhood illness. Parents often turned to Internet sources to find more information about the signs and symptoms of AOM and its treatment, specifically home management. Few participants (n = 5) reported seeking information about AOM and its management from friends or relatives whose children also had AOM:

I don’t use a—typically don’t use a specific source. But Google is often—if I’m gonna punch something in, it’s gonna be with Google (participant 10).

I usually just ask my mom. Or go to the doctor. Our doctor here is pretty good. (participant 3).

Children’s Presenting Symptoms and Long-Term Effects of AOM on Children

Participants shared similar experiences and described similar presenting symptoms in their children. For instance, parents commonly reported that their child became irritable, experienced pain, fever, and excessive crying in addition to other flu-like symptoms. These experiences are consistent with what other studies have reported about general symptoms of AOM in children (25, 26). A sudden appearance and drainage of fluid from the middle ear with a rapid onset of signs and symptoms of infection were also reported by parents (26).

The majority of participants did not mention any concern about potential long-term effects of AOM. Parents were typically more concerned about the immediate symptoms of pain and discomfort. Only 1 parent voiced concern about the potential long-term effects of AOM on hearing. This is consistent with other studies that evaluated parents’ concerns about long-term effect of AOM on hearing and communication (9, 27, 28).

Parents’ Beliefs and Information Needs About AOM and Its Management

Our findings provide evidence that AOM places a significant burden on children and families (26, 29, 30). Parent beliefs about AOM identified in this study appear to be related to environmental and social factors. Participants reported that they believed cold or upper respiratory infection, day-care attendance, formula feeding, swimming, and teething predisposed children to ear infections. Notably, previous studies identified similar, yet inaccurate, results (3, 25, 26).

Our findings also identified that parents preferred to receive information from their own pediatrician when they had a sick child, followed by other trusted health-care professionals, like their family physician or nurses. This is consistent with findings from Kautz-Freimuth et al (9), who determined that the pediatrician or general physician was the most important contact partner for parents seeking medical advice regarding AOM treatment. Similarly, Russell et al (27) also found that parents preferred to see their own general practitioner whom they trusted more. Although parents in this study often turned to and preferred health-care professionals as a primary source of information for their child’s AOM, few reported receiving a thorough explanation about the nature of the illness or risks and benefits of different treatment options. Parents’ information deficits were evident in their comments (eg, What causes AOM? What can I do to help my child get better? When do I go to ED?). Pshetizky et al (30), reported that a brief explanation to parents about the disease and possibility of self-cure without antibiotics, although time-consuming, could alleviate parental anxiety and reduce antibiotic overuse. According to participants in this study, information about how to treat a child who has AOM is neither readily accessible nor consistent. It is critical to develop appropriate, accessible, and consistent information to share with parents.

The majority of parents reported oral antibiotics to be the initial form of treatment. This assumption is also supported by previous studies reporting that a high proportion of parents believe antibiotics are necessary when treating AOM (3, 9, 27, 28). Despite current practice guidelines, stating that mild AOM symptoms will often resolve spontaneously without antibiotics (4, 10, 31, 32), parents reported that it was not common practice for their physician to suggest waiting before starting an antibiotic. In majority of cases, an antibiotic (typically oral amoxicillin) was prescribed. According to American Academy of Pediatrics clinical practice guidelines, amoxicillin is the drug of choice as an initial treatment (32). There is no evidence to support using topical antibiotics to treat AOM; however, 1 parent did report being prescribed the topical antibiotic, fusidic acid. Almost 50% of parents who participated in the study were satisfied with receiving antibiotics and believed their physician’s recommendation was best, which is consistent with the evidence that parents prefer and trust their physicians (3, 9, 27).

In our study, participants who reported a lack of satisfaction with antibiotics usually had a child with reoccurring ear infections and believed that antibiotics were not effective. In fact, some participants discussed the possibility of their child developing “antibiotic resistance.” This finding is consistent with previous studies exploring parents’ perspectives on antibiotics for AOM and reported that the most common parental concerns related to antibiotic prescriptions were antibiotic resistance and adverse effects (9, 28, 33). Parents feared antibiotic resistance; indeed, research has shown that antibiotic resistance is a potential side effect of recurrent antibiotic use (34). However, the children of parents in this study preferred to be prescribed and use antibiotics, despite their negative perceptions and the evidence that mild AOM symptoms will typically resolve on their own. The majority of parents in this study reported administering oral analgesics or antipyretics (eg, Tylenol or Advil) to combat pain and fever. However, parents did not consider these medications to be sufficient treatment, and they often opted to supplement with antibiotics (3, 9, 31). Parents requesting or making decisions about naturopathic approaches were rare in this study, as well as in previous studies (3, 9, 27).

Emotional Strain and Impact of AOM on Child and Parents’ Quality of Life

Our findings suggested that an AOM diagnosis often meant great emotional strain for parents (stress, fear, and anxiety) and a disruption of daily routines, including a lack of sleep and missed work or school. These findings are comparable to previous studies where parents of children with AOM had to take time off from paid work (27, 29, 35). In this study, parents with younger children or those experiencing AOM for the first time described more worry and less confidence in managing their child compared to those who had experienced multiple episodes of AOM or who had older children. Parents described that this was due to the child’s distress and inability to communicate the presence and severity of symptoms. These findings are similar to Russell et al (29) who found parents with young children with AOM are more concerned and wanted to understand the cause of their children’s distress so they will be able to help their children to relieve their symptoms as soon as possible. Through discussion with parents, it became clear that AOM can be as distressing for parents and families as for the child.

Acute otitis media also negatively impacts the quality of life (QoL) of parents and children. Previous studies have also reported that the negative impact of AOM on a child’s QoL is greater with an increasing number of AOM episodes and in children with more severe disease (1, 2, 28, 35). In our study, the aspects of parental QoL most affected by childhood AOM were lack of sleep, worry, and having to alter their daily schedule. This is similar to results from Dube et al (2) who found sleep to be most affected, followed by concern, changes to daily activities, emotional distress, and canceling family activities. Boruk et al (36) found 3 aspects of caregiver QoL to be most affected, namely, lack of sleep, feeling nervous/ agitated/irritable, and feeling helpless/frustrated.

Limitations

We conducted interviews at a single point in time and only with parents who were seeking care in the ED. We relied on parent self-report of their experience and information needs; other forms of data collection (eg, observation) may have enhanced our understanding of information needs and parent experience. Further, recall bias is a limitation as we relied on self-report data. All the study participants were mothers; hence, fathers are not represented in this study. This is due to the reality that in our recruitment site, mothers most often brought their children to appointments with health-care practitioners or for emergency visits. It is important to note that because we sampled exclusively from the ED, the majority of participants had children with a severe case of AOM (eg, child with raptured eustachian tube [n = 3], high-grade fever [n = 7], and seizure [n = 1]). Also, the majority of participants (n = 13) reported that their children experienced multiple AOM episodes. Despite extensive effort to ensure variation in parent demographics, our participants consistently possessed high levels of education. As a result, our findings cannot be extrapolated to all parents, including those who may have more pronounced information needs and information deficits.