School-aged children with mild bilateral and unilateral hearing loss: parents’ experiences

Abstract

Approximately 50% of children first identified with hearing loss present with mild bilateral and unilateral hearing loss (MUHL), but little is known about their functioning in the school years. The purpose of this study was to examine caregivers’ perceptions of their child’s functioning and needs at school age. This qualitative inquiry was a follow-up to interviews conducted following the diagnosis of MUHL. Seventeen of the original 20 caregivers participated in this study. The median age of the children at the time of the interviews was 1.0 (8.7-10.7) years. Results represent parents’ experiences in four key areas: (a) the challenge of transition, (b) the impact of hearing loss on functional outcomes, (c) the challenges of MUHL, including concerns about “falling through the cracks” and low expectations, and (d) the importance of advocacy. Parents indicated that while their child may not need as much direct support as children with more severe hearing loss, as parents, they still need support and guidance to navigate the educational system. These findings provide valuable insight into parents’ perspectives, contribute to our understanding of the impact of MUHL on educational outcomes and highlight the need to ensure that these children are not overlooked.

Mild bilateral hearing loss and unilateral hearing loss (MUHL) account for approximately 50% of children who are first identified with permanent hearing disorders (Fitzpatrick et al., 2014; Russ et al., 2003; Watkin & Baldwin, 2011). These children are now identified early due to the widespread implementation of early hearing detection and intervention programs, increasing opportunities for timely support. Despite this progress, the consequences of milder hearing loss, clinical needs, and optimization of care for children with MUHL continue to receive considerable attention (Bagatto et al., 2019; Carew et al., 2023; Sung et al., 2023).

Studies indicate that a substantial number of children with MUHL experience difficulties in some areas of development and may require support during the school years (Carew et al., 2023; Lieu, 2013; Nassrallah et al., 2020). Historically, the term “language deprivation” has been used to describe the long-term consequences of limited access to language during early childhood (Hall et al., 2017). Recent research reframes language deprivation as “insufficient early language access” to better reflect the developmental processes influencing language acquisition in children who are deaf and hard of hearing (DHH) (Moeller et al., 2024). While it may be assumed that children with MUHL have adequate auditory input for spoken language development, research indicates that all children with hearing loss, regardless of severity, are at risk for insufficient language access if early and consistent intervention is not provided (Ching et al., 2018; Pimperton & Kennedy, 2012; Szarkowski et al., 2024a; Yoshinaga-Itano et al., 2017). Factors such as reduced auditory access in noisy environments, under-identification of language delays, and delayed intervention can contribute to subtle but significant language gaps, affecting vocabulary, syntax, and social communication skills, which may lead to long-term academic and social-emotional challenges (Porcar-Gozalbo et al., 2024). As these children transition into the early school years, gaps in foundational language skills can compound, impacting literacy development, classroom participation, peer relationships, and overall confidence in communication. Comprehensive monitoring of language development in this population is important to prevent overlooked language delays that could otherwise lead to long-term educational and social consequences (Walker, 2020; Walker et al., 2020). Addressing insufficient early language access in this population is essential for mitigating developmental risks and supporting academic success and social-emotional well-being throughout the school years.

Typically, research on children with MUHL has focused on comparing their function with their peers with typical hearing. Research on children with MUHL has highlighted various developmental, educational, and social outcomes. Some children thrive with minimal intervention, while others may benefit from targeted support to optimize their access to language, learning, and social interactions (Carew et al., 2023; Sung et al., 2023). Reviews of outcomes for children with unilateral hearing loss (UHL) indicate potential challenges in language development and cognitive function (Anne et al., 2017; Purcell et al., 2016, 2020). Similarly, studies on mild bilateral hearing loss suggest potential impacts across multiple domains (Lewis, 2014; Tharpe, 2008; Winiger et al., 2016). Understanding the factors that contribute to these outcomes is essential for developing effective, individualized strategies to support children and their families.

Recent studies continue to focus on the outcomes of children with MUHL compared to their peers during their school years. For instance, Carew et al. (2023) reported that language outcomes for a large cohort of early-identified children with MUHL in Australia were delayed compared to population norms. Nassrallah et al. (2020) found that school-aged children with MUHL exhibited difficulties, most notably in the area of phonological memory. In a series of studies, Lieu et al. found that children with UHL used resources 4.4 times more and were 2.6 times more likely to receive speech-language pathology services than their siblings with typical hearing (Lieu, 2013; Lieu et al., 2010, 2012). Academic and behavioral difficulties in the early years persisted into the later school years (Lieu et al., 2012). Additionally, recent studies have revealed concerns about the quality of life, social, psychoeducational, emotional, and behavioral development of school-age children with milder degrees of hearing loss (Carew et al., 2023; Laugen et al., 2017; Ong et al., 2023).

These ongoing concerns about developmental and educational outcomes and the rapid increase in the number of children with MUHL bring major clinical and educational challenges. Optimizing services for these children, particularly in terms of audiologic management and early intervention (EI), requires careful consideration. A study involving interviews with audiologists in Australia highlighted the impact of a lack of evidence-based protocols on the audiological management of children with MUHL (Ching et al., 2022). This is particularly evident when considering amplification needs and use. A review of hearing technology candidacy criteria showed that national guidelines and position statements generally recommend the consideration of amplification for these children (Fitzpatrick et al., 2019); however, the quality of evidence for its effectiveness is limited (Bagatto, 2020; Sung et al., 2023). Furthermore, fitting of hearing devices has generally occurred at later ages than for children with more severe hearing loss (Fitzpatrick et al., 2014; Laugen et al., 2017; Walker et al., 2017), likely due to uncertainty on the part of both clinical providers and caregivers. In addition, experience with the uptake and use of amplification has been mixed, even when hearing aids are fitted at an early age, and especially for children with UHL (Fitzpatrick et al., 2019). In the study by Fitzpatrick et al., although 86% of young children with MUHL received amplification recommendations, only 66% achieved consistent use by age 3-4 years. For children with mild bilateral loss, Walker et al. (2012) also reported that parents indicated less consistent hearing aid use than parents of children with more severe hearing loss, and in a subsequent study, authors suggested that consistent use was difficult to achieve because parents do not see clear benefits from amplification (Walker et al., 2017). Our qualitative interviews highlighted the uncertainty of caregivers regarding hearing aids for their children and their need for support in decision-making and use (Fitzpatrick et al., 2016).

Early intervention guidelines for children with MUHL are mixed, with some reports highlighting the lack of evidence for the benefits of hearing technology or intervention (Ching et al., 2022; Wood et al., 2015). This inconsistency may result in a lack of consistent services (Carew et al., 2023). Walker et al. (2017) reported that 82% of children with mild bilateral loss enrolled in a longitudinal study who were identified through NHS accessed EI while Fitzpatrick et al. (2025) found that about two-thirds of a population-based cohort of 182 children with MUHL utilized at least some intervention services. Presumably, caregivers’ understanding and perspectives of the impact of milder hearing loss could affect whether they seek services and use hearing technology.

Research suggests that caregivers of preschool-age children with MUHL have similar concerns and questions as those of children with more severe hearing loss (Fitzpatrick et al., 2016). Understanding the impact of milder hearing loss and the potential benefits of hearing technology can be challenging for caregivers, particularly in the early stages of learning about hearing loss (Fitzpatrick et al., 2016) and even into the school years (Grandpierre et al., 2018).

Recent qualitative interviews with audiologists in Australia have underscored how family characteristics and perspectives influence the audiological management of children with MUHL, accounting for differences in recommendations and follow-up (Ching et al., 2022). Interviews with caregivers of preschool-age children in Australia with mild bilateral hearing loss have highlighted their different perspectives on audiologic recommendations and the challenges surrounding amplification decisions (Lin et al., 2022).

Caregivers play a central role in shaping their child’s experiences by making decisions about amplification, intervention, and educational services. Their perspectives provide critical insight into how children with MUHL engage with their environments and what supports may be most beneficial. While previous research has explored the clinical and educational aspects of MUHL, less attention has been given to the perspectives of caregivers as they advocate for their children and make decisions about their care. This study seeks to address this gap by focusing on caregivers’ experiences, needs, and priorities as their children transition into the school years.

There is a need for research focused on early-identified children with MUHL, particularly from the perspective of caregivers. While previous studies have primarily relied on objective outcome measures, exploring parents’ perspectives provides essential insight into how children with MUHL navigate and experience the educational system. Conducted as part of a larger project examining the trajectory and consequences of MUHL (Fitzpatrick et al., 2019; Fitzpatrick et al., 2023), this study investigates caregivers’ experiences as their child transitions into the early school years, with a focus on audiologic and intervention services, the child’s functioning, and the needs of both the child and family. Findings reveal that children with MUHL are at risk of “falling through the cracks” due to low expectations and inadequate accommodations, emphasizing the need for greater awareness and structured guidance for families. By shifting the focus to caregiver perspectives, this research enhances our understanding of the support needs of children with MUHL and provides important insight into how services can be optimized to ensure that all children and families receive the resources necessary to reach their full potential.

The current study was part of a longitudinal project investigating the communication outcomes and impacts of the early identification of MUHL in children. This inquiry was a follow-up to interviews conducted following diagnosis to better understand families’ experiences with the identification of their child’s hearing loss. Qualitative, semi-structured interviews were conducted in this phase of the project to elicit parents’ perceptions of the impact of their child’s hearing loss in school and other social environments. This qualitative inquiry was used to complement quantitative data collected through language assessments. The study was approved by the CHEO Research Institute (#09/64X and the uOttawa Research Ethics Boards (#A05–17-03). Consent was obtained prior to each interview.

Participants

The sample for this study was drawn from families who enrolled in the longitudinal project from 2009 to 2012 and participated in initial interviews (Fitzpatrick et al., 2015; Fitzpatrick et al., 2016). The families were recruited from three regions in Ontario: Ottawa, Toronto, and Southern Ontario. Families included in this inquiry were those still enrolled in the original longitudinal study. Clinical characteristics (e.g., type, degree of hearing loss, and amplification) were collected via parent questionnaires and audiology reports as part of the MUHL longitudinal study prior to the interview. The interviewer was unaware of the characteristics of the children, except that they had either mild bilateral or UHL.

Seventeen of the original 20 families interviewed participated in this phase of the study. Both parents participated in two of the interviews, for a total of 19 individual adult participants. Table 1 details the characteristics of the 17 children (10 girls and 7 boys) collected as part of the larger study. At the time of the interview, the children were a median age of 1.0 years (IQR 8.7,10.7). All children underwent newborn hearing screening and were identified with permanent hearing loss (nine unilateral, eight mild bilateral) in infancy at a median age of 4.3 (IQR 2.9, 4.9) months. Of the 17 children, 14 were fitted with amplification at a median age of 8.3 (IQR 5.4, 18.7) months. As shown in Table 1, three children experienced a drop in hearing and later received a cochlear implant(s). Three children, all with UHL, used a frequency or digital modulation assistive listening system (FM/DM system) only or no amplification. The children had no known additional disabilities.

Table 1.

Clinical characteristics of 17 children with mild bilateral and unilateral hearing loss.

Characteristics	Unilateral (n = 9)		Bilateral mild (n = 8)		Total participants (n = 17)
Sex, n (%)
Female	3	(33.3)	7	(87.5)	10	(58.8)
Screening status n (%)
Screened	9	(1.0)	8	(1.0)	17	(1.0)
Onset of hearing loss, n (%)
Congenital	9	(1.0)	6	(75.0)	15	(88.2)
Early onset	0	(0.0)	2	(25.0)	2	(11.8)
Type of hearing loss, n (%)
Sensorineural	5	(55.6)	7	(87.5)	12	(70.6)
Permanent conductive	4	(44.4)	1	(12.5)	5	(29.4)
Etiology, n (%)
Unknown	4	(44.4)	6	(75.0)	10	(58.8)
Known
ENT malformationa	4	(44.4)	0	(0.0)	4	(23.5)
Prenatal infection	1	(11.1)	1	(12.5)	2	(11.8)
Familial/genetic	0	(0.0)	1	(12.5)	1	(5.9)
Age at confirmation (months), median (IQR)	4.6	(3.4, 8.3)	3.9	(2.7, 4.9)	4.3	(2.9, 4.9)
Age at hearing aid fitting (months), median (IQR)b	8.4	(6.7, 35.1)	6.5	(4.7, 15.9)	8.3	(5.4, 18.7)
Age at interview (years), median (IQR)	10.0	(8.6, 10.7)	10.0	(8.8, 10.8)	10.0	(8.7, 10.7)
Degree of hearing loss at diagnosis (worse ear), n (%)
High frequency	0	(0.0)	1	(12.5)	1	(5.9)
Mild	1	(11.1)	5	(62.5)	6	(35.3)
Moderate	1	(11.1)	2	(25.0)	3	(17.6)
Moderate–severe	3	(33.3)	0	(0.0)	3	(17.6)
Severe	3	(33.3)	0	(0.0)	3	(17.6)
Profound	1	(11.1)	0	(0.0)	1	(5.9)
Degree of hearing loss at interview (worse ear), n (%)
High frequency	0	(0.0)	1	(12.5)	1	(5.9)
Mild	2	(22.2)	3	(37.5)	5	(29.4)
Moderate	1	(11.1)	2	(25.0)	3	(17.6)
Moderate–severe	1	(11.1)	0	(0.0)	1	(5.9)
Severe	3	(33.3)	1	(12.5)	4	(23.5)
Profound	2	(22.2)	1	(12.5)	3	(17.6)
Amplification at interview, n (%)
Hearing aids
Unilateral HA	5	(55.6)	0	(0.0)	5	(29.4)
Bilateral HAs	0	(0.0)	6	(75.0)	6	(35.3)
Cochlear implants
Unilateral CI	0	(0.0)	1	(12.5)	1	(5.9)
Bilateral CIs	1	(11.1)	1	(12.5)	2	(11.8)
FM only	2	(22.2)	0	(0.0)	2	(11.8)
No device	1	(11.1)	0	(0.0)	1	(5.9)

Note. n = number; IQR = interquartile range; HA = hearing aid; CI = cochlear implant.

^acochlear anomalies, enlarged vestibular aqueduct syndrome (EVAS), and Mondini malformation

^bn = 15 children fitted with hearing aids

Procedures: Interviews and Data Analysis

Seventeen semi-structured interviews were conducted by the first author, an experienced EI provider for families of DHH children. Caregivers participated either in person or virtually, using Zoom video conferencing software. Caregivers were asked to describe their experiences with the transition to school and their perceptions of the impact of their child’s diagnosis on academic and social functioning (see Appendix S1 for Interview Guide). Interviews were audio-recorded, transcribed verbatim, and verified before being uploaded into NVivo (2020, Release 1.7), a qualitative data analysis software used to organize and facilitate detailed analysis. Analysis was informed by the principles of interpretive description (Burdine et al., 2020; Thorne, 2016). To preserve confidentiality, participant, educational professional, and site names were removed.

Reflexive thematic analysis was used to analyze interview data, which consists of an inductive, iterative, six-phase process: (a) familiarization, (b) generating codes, (c) constructing themes, (d) reviewing themes, (e) defining and naming themes, and (f) producing the report (Braun et al., 2019; Braun & Clarke, 2006; Terry et al., 2017). Two authors discussed, reviewed, and refined codes throughout the analysis to deepen our understanding and create meaningful themes that adequately represent what was learned from the participants.

Results

As caregivers shared their perceptions of their children’s early years in school, we identified four overarching themes related to their experiences: (a) the challenge of transition, (b) the impact of hearing loss on functional outcomes, (c) the challenges of MUHL, and (d) the importance of advocacy. Participants are identified by interview number; in interviews where both parents participated, they are identified by interview number and A or B (P2A, P2B).

The Challenges of Transition

All the caregivers reported that the time of transition from EI into school was difficult, and several mentioned similar concerns for later school transitions. During this time of uncertainty, caregivers reported a desire for continuity, a need for readiness, and specific concerns about their child transitioning into a new environment.

Desire for continuity

Nine families shared that the transition into school felt sudden, especially compared to the support and resources they received in EI. Several caregivers indicated that their EI services were discontinued—and in some cases, audiology services transferred—before this transition occurred, so they no longer had access to their providers and were left wondering who to ask and where to find the information they needed to feel prepared for transition.

But, to me, it just felt like the support early on was so fantastic, and then it just like all of a sudden, that was it - go fend for yourself type of situation…It just felt, for me to simplify it, it was too abrupt and too soon. (P2B)

I would have liked to have stayed with the EI audiologist longer in terms of like consistency…I think it would be beneficial for them to stay with them…and then when they transition to high school, I feel like that would be a good time to change. (P17)

Need for readiness

The caregivers reported a desire to approach the transition to school feeling equipped and ready, which included the need for information, preparation, and support.

I think for me, my need was that I felt like I needed to be part of a community, or a worry I had was that she was going to be the only one like her and so, I wanted to know that there was some kind of support system or other caregivers that had gone through it. (P2A)

All 17 families mentioned resources they accessed for information prior to the transition, including a local parent support group that offered educational workshops, online parent groups, and reconnecting with the provider who worked with their child during EI, even though they were no longer receiving services.

But we had her when he was little, little, like a baby. She used to come and teach me…but then she came back in when he was transitioning into school. I think she actually even went into the school a couple times and met with the teacher and gave her a couple tips….it eased my mind knowing someone who is an expert…because regular classroom teachers aren’t equipped with that information. (P7)

Finally, caregivers shared that meeting with the teachers and other school professionals in advance helped them feel more confident that their child’s needs would be met appropriately.

I was very, very worried. The only thing that helped allay my fears was that they have an excellent special ed. teacher at the school. And we went in the week before school started and I was very comforted by her…so instantly all the fear I had kind of dissipated because I really trusted this uh, this one teacher. (P15)

One family described an informational meeting held by the school district for all the caregivers of DHH children prior to school starting as particularly helpful for easing the fear of the unknown.

And we actually got to go and meet with the director of the deaf and hard-of-hearing program and some of the hearing resource teachers. We asked questions, they told us how the program would work, and I think that was a great thing, in terms of letting us understand what services would be available and how they decide on those services and that kind of thing. So, that was terrific. (P14)

Transition concerns

Caregivers shared concerns related to their child transitioning into school for the first time. These included background noise, effective communication with teachers, uncertainty about academic performance, equipment and device concerns, speech and language concerns, making friends, and a general concern about the unknown of a new environment.

Most caregivers described the time of transition as uncertain and stressful, with a lack of sufficient preparation and support. When discussing transitioning her child from a small, private preschool into public school, one caregiver shared, “that’s when I really felt like I lost control.” She described her experience as being “at the mercy” of the skills of the teacher (P9). She indicated that meeting with the principal and outlining her child’s learning needs before school started contributed to her readiness for that transition.

There were a few notable exceptions—four caregivers who said that they did not have many concerns, either because their child was not exhibiting any delays in language or academic functioning, or because they had an older child in the district, so there were not as many unknown factors. Additionally, several caregivers reported that comparing their child to others with greater needs minimized their concern. One parent described herself as “very, very lucky,” stating, “I mean, there’s other children who are struggling more so than him, so I only have his experience to go on, which is very mild” (P4). Finally, in the few cases where caregivers had access to additional resources and support, they reported feeling less concerned about the transition. One went so far as to describe transition as “very comfortable” due to the extra support she received (P5).

Six families mentioned similar concerns about the transition into high school, indicating that this is another transition for which caregivers need additional information and support.

The Impact of Hearing Loss on Functional Outcomes

We asked caregivers to share their overall experiences as their children progressed through their early school years, from transition into school until the present. They reported current updates and concerns regarding their child’s overall functioning related to their hearing loss, including school functioning, social competence, and community involvement.

School functioning

Most caregivers reported average to above average academic performance, although not without some struggles to obtain the services they believed their child needed. When asked about academic performance, 15 caregivers reported that their child was doing well or that they had no concerns academically. Caregivers who reported strong academic performance described their child’s performance as “thriving” (P4), “gifted” (P7), “one of the top of the class” (P10), “straight A student” (P12), and “on par with her peers” (P17). Other caregivers shared concerns about their child’s learning, specifically in reading and math, but it was not clear if their child’s struggles were related to their hearing loss. One parent summarized her child’s academic performance this way: “It’s amazing what these kids can accomplish.” (P10).

All but one child had an Individualized Education Plan (IEP) in place at the time of the interview. All the IEPs included accommodations, such as preferential seating, an FM/DM system, and tennis balls on the chair legs to minimize noise. Children who received direct services from a teacher of the deaf were seen anywhere from weekly to monthly. Several caregivers reported that a teacher of the deaf was listed on their child’s IEP on a surveillance or consultation basis only (no direct services) because their child was doing well, or they were told that limited resources necessitated other children with more significant needs be prioritized. Seven caregivers indicated that the frequency of services had decreased since their child began school because their need for support had decreased. Additionally, several caregivers were not certain of the frequency of services, suggesting few concerns about their child’s progress and overall satisfaction with their child’s school performance.

Social competence

When sharing about their child’s social skills, caregivers’ responses fell into two categories. The first was how they felt about their child’s competence in this area: either that their child was doing well socially, or they were concerned about isolation. Secondly, they talked about the importance of connections with other DHH people.

Six families expressed explicit concerns about their child’s social struggles, indicating that they have few or no close friends. Several caregivers reported that this had gotten more difficult as their child has gotten older, and some indicated that their child’s struggles were due to a lack of confidence or an inability to follow group conversations because of their hearing loss.

[S]he’s told me, too, that when kids talk…in a group, she often loses a lot of the conversation, because she’s doing the searching for meaning thing half the time, and she can’t slow down what people are saying (P3).

Conversely, social competence was not a major concern for 11 families, with several indicating that they found this to be reassuring, suggesting that it was a concern at some point in their child’s life.

Community involvement

Several families talked about the challenges their child faces when participating in community events because of their hearing loss. In some cases, community members refused to use their child’s FM/DM system, which one parent reported as discouraging for her child.

And it’s, there’s a lot of like extra tech sort of “know how” that has to go into it, and we’ve had issues with people refusing to wear it. Like for mass, the priest just refuses to wear it (laughs)…So, then she feels very uncomfortable…And like field trips, we’ve had the same thing. So, there’s some negative association, you know, that she’s picking up onto that it’s a chore, it’s a burden, “I’m a problem,” you know. (P12)

In other cases, caregivers reported having to educate and advocate for their child. One parent reported that she believes that her child refuses to participate in extracurricular activities because she is not comfortable advocating for herself.

My daughter hasn’t joined any sports teams – nothing - because she knows it’s going to be too much of a challenge…And it’s not because she can’t do it, it’s because she won’t do it. She won’t meet that challenge because she just doesn’t want to tell the coach…“Can you please wear the FM while we’re running around the track,” or whatever, “because I can’t hear you?” Like, she just won’t do it. (P3)

The Challenges of MUHL

Many of the concerns that the caregivers shared were similar to those of caregivers of children with more severe degrees of hearing loss. However, caregivers reported several challenges and concerns specifically related to mild and UHL, including the dilemma of device use, concerns about hearing stability, and worries that their child will be overlooked in terms of services and supports from the school system. One parent put it this way: “And when you’re not deaf enough for those services, you’re really on your own and the experience is very different, and it’s isolating” (P12).

Amplification use

Thirteen families reported that their child uses amplification consistently at school, either bilaterally or unilaterally. Fourteen use an FM/DM system at school, although one reported that consistency was an issue. Two caregivers reported that their child does not wear devices but uses an FM/DM system at school, and one child with UHL does not utilize any devices at home or at school. Six families reported that their child does not use devices at home, with three stating that they do not notice a significant difference when their child is wearing them. Several reported that they received mixed messages from professionals about whether it would benefit their child, including one parent who stated, “one of the reasons why we didn’t do amplification is because we went to about four or five specialists, and they were like half and half” (P10). Two caregivers felt strongly that their child should make the decision about device use, and one mentioned that the only reason their child uses devices is because they were told it could be helpful.

Hearing stability

Several families shared explicit concerns about hearing stability. Three children experienced a rapid and substantial deterioration in hearing; two with an initial diagnosis of mild bilateral hearing loss and one with UHL. All three received at least one cochlear implant, two just prior to entering kindergarten and one at the end of first grade. One parent stated, “And I’ll tell you the one concern that I do have as a mom, and it’s because an audiologist put it in my head, is any type of deterioration of the good ear” (P10).

Falling through the cracks

Many families shared experiences with their child’s needs not being fully understood or met appropriately due to their degree of hearing loss. They shared stories about having to fight for services and feeling like their child’s disability was not being taken seriously. Several caregivers expressed frustration with low performance expectations held by teachers, and some shared stories of teachers not using accommodations outlined on the IEP because they did not think the child needed them.

One parent expressed frustration that “the problem with kids with mild-to-moderate hearing loss…fly beneath the radar all the time…they’re not exactly what people would consider disabled-disabled [participant emphasis added]…but my child…does have a disability that needs to be taken into account.” (P3). Regarding accommodations, she shared that she feels like her child “falls between the cracks every single day in that respect” (P3). She went on to explain how low expectations frustrate her and negatively impact her child:

For me, it was about the like, “Who do you see my daughter as? Is she just supposed to be average in your world? Or is she supposed to achieve more?” Because in my books, she’s supposed to be more. And she can be more if she’s given the right guidance, and the right reassurance, and her self-esteem is nurtured…But I didn’t really see that happening, I just saw it as being like, “Oh, she’s this poor little girl with hearing loss and she’s doing so well! Amazing!” It was like everybody was surprised, almost, that she was doing as well as she was…I think a lot of people just kind of, like they set the bar very low, very low, you know? (P3)

Another parent shared similar frustrations with access to accommodations, stating:

And I’ve had other teachers who were like, “I did this for a million years, this is all not new to me.” And then I’ll be like, “Oh, when you do those videos, can you find something with captioning?” And she looked at me like, “Oh, you think she needs that?” (P9)

The Importance of Advocacy

Advocacy stood out as a significant theme throughout all the interviews. Caregivers shared their need and/or desire to advocate for their child’s needs and reported on their child’s ability to advocate for themselves, which they felt was a very important skill for them to master. Additionally, a child’s identity as a DHH individual impacted their self-advocacy skills.

Parental advocacy

All families mentioned the importance of advocating for their child in school. Parental advocacy is divided into two sub-themes: (a) motivation, which represents why caregivers feel the need to advocate, and (b) needs, which includes what the caregivers said they need to advocate effectively.

Caregivers’ motivation to advocate for their child stemmed from worry, their level of satisfaction with the services their child was receiving, a desire to be involved in their child’s education, and a desire to teach their child to advocate for themselves. One parent shared that her desire to advocate for her child originated from worry, stating, “I had a bunch of concerns…around her ability to function like any other child would…I think that my goal was to try to normalize her experiences as much as I possibly could” (P3).

As caregivers navigated their role as advocates, they reported that resources and parent-to-parent support were needed. Caregivers indicated that connecting with other caregivers helped them understand services and accommodations that they should be advocating for and resources that were available to them. Three caregivers reported that they had this kind of support when their child was a baby, but found it lacking now that their child is in school, and they would still find it valuable. Alternatively, eight caregivers indicated that while they sought out support and resources in the early years, their needs diminished over time because their child was doing well, and they no longer had significant concerns. One parent indicated that, while her need for support has decreased, she now enjoys offering support to caregivers of younger children who are just beginning the school journey.

Self-advocacy and identity

We identified three sub-themes related to self-advocacy and identity: (a) the dilemma of difference, which involves not wanting to stand out as different among peers, (b) the desire to “not rock the boat,” which represents not speaking up when they need help because they believe their needs are a burden, and (c), identity as a DHH individual.

Some caregivers reported that their child hesitated to self-advocate because they did not want to draw attention to their hearing loss or because they did not want to be perceived as different from their peers. A child’s willingness and ability to self-advocate were tied to their perception of their own hearing loss. When asked about how their child felt about their hearing loss, caregivers’ responses ranged from little impact, “It’s just normal to her,” (P9), to negative perceptions, including few close friendships and the “social cost” of wearing the FM/DM system, “so she will reject it” (P12). Several caregivers shared about “that mushy middle ground” (P3) of becoming a teenager when they noticed that their child vacillates between acceptance and not wanting to be singled out as different. One parent described it this way: “The fact that she doesn’t like being different a lot of the times and then other times she’ll be like, ‘yeah, but my hearing loss is part of me’” (P3).

Another reason caregivers believed their child was unwilling to self-advocate was the belief that asking for accommodations was a burden to others. One parent said her daughter “doesn’t really rock the boat” (P3) because she thinks it’s too much trouble. Another parent shared that she has had challenges with people refusing to wear the FM/DM microphone and that her daughter is “picking up on that it’s a chore, it’s a burden” and that her daughter thinks she’s “a problem” (P12).

When talking about their child’s identity as a DHH individual, caregivers reported a continuum from acceptance, which was tied to willingness and ability to advocate, to hearing loss not having a significant impact on their child’s identity, to resistance, including refusal to advocate for themselves. Four caregivers indicated that hearing loss is not a significant part of their child’s identity, stating that “I don’t think he’s aware…[it’s] just his normal” (P1) and, when talking about the need for an FM/DM system, “he doesn’t notice he really needs it” (P4).

Discussion

As part of a larger longitudinal study, this qualitative inquiry sought to elicit the perspectives of caregivers of children with MUHL regarding their experiences during the school years. These interviews were a follow-up to interviews completed when their child was approximately two years of age (Fitzpatrick et al., 2016) and provide important insight into their ongoing needs, including concerns that many caregivers of DHH children share and those that are unique to children with MUHL.

We identified four key themes from the interviews: (a) the challenge of transition, (b) the impact of hearing loss on functional outcomes, (c) the challenges of MUHL, and (d) the importance of advocacy.

The transition to formal educational environments is a major milestone for all young children. Research has shown that the transition to early childhood special education evokes in caregivers feelings of worry and confusion, and the shift from family-centered to school-focused services is a significant adjustment (Douglas et al., 2022; Gaspar & Jahromi, 2024; Malone & Gallagher, 2009). Caregivers have indicated that communication and collaboration can serve as either facilitators or barriers to the transition process, and the continuation of services from trusted clinicians is an important source of support for families (Douglas et al., 2022). The transition to school was identified as a particularly concerning time for the caregivers in our study, as well. Caregivers were concerned about their child’s school performance and ability to adapt to the unknown factors of the school environment. Like other families entering early childhood special education, for many caregivers of children who are DHH, this transition involves a disruption in familiar services and relationships with familiar health or education providers. Caregivers in our study who faced a change in providers during the transition period reported feeling unsupported and inadequately informed to prepare for the transition. They emphasized the importance of continuity of care during this challenging and uncertain time. Clinicians have indicated that for children who are DHH, the transition period from a home and/or preschool environment merits special attention (Fitzpatrick & Doucet, 2013). Despite their children having milder hearing loss and, in many cases, language on par with their typically hearing peers, most caregivers in our study felt that they needed special preparation and guidance to navigate the transition into a formal educational environment. It was interesting that many caregivers mentioned that the source of most of the resources, information, and support they received was from an outside agency, either through a local parent support group or through the agency that provided their EI services, and these agencies did not work directly with the school district. This suggests an area for improvement during the transition process. While professionals aim to equip caregivers to advocate for their child, it is clear that more support and information are needed during times of transition. Parent support and specific guidance during the transition period need to be an integral component of intervention programs for these children.

An important and promising finding in this study was that a majority of the families reported strong academic functioning and minimal concerns about their child’s school performance, in contrast to previous MUHL research. Traditionally, objective measures used in quantitative research findings suggest that speech-language development and academic functioning appear to be delayed or reduced in children with MUHL (Anne et al., 2017; Carew et al., 2023; Winiger et al., 2016). In a series of studies comparing children with UHL with their hearing siblings, Lieu and colleagues reported poorer language scores and a much greater likelihood of requiring speech-language therapy and additional support at school (Lieu et al., 2010, 2012). A later study that included some of these children as adolescents reported that the gap in language scores persisted (Fischer & Lieu, 2014). It is important to note that in these studies, children were diagnosed with hearing loss on average at almost 5 years of age. The children in our sample had a median age of diagnosis of 4.3 months (IQR 2.9, 4.9) and had access to early amplification and EI. However, a recent study of early-identified children in Australia indicated that they continue to be delayed in linguistic skills compared to their peers with typical hearing (Carew et al., 2023). One possible explanation is that while these studies relied on objective measures of language and social functioning, this study focused on parent perceptions of these factors. Parental perspectives, while valuable, may not capture subtle differences in abilities that would be detected through objective assessments, including formal standardized tests or informal methods like language samples. Additionally, children in our study had access to EI services, which may have played a role in mitigating language and speech delays, potentially supporting improved academic functioning. As pointed out by Winiger et al. (2016), historically, school systems frequently adopted a failure-based or “wait and see” approach for children with MUHL. Our findings are encouraging for future outcomes for children with MUHL who receive intervention in the early years.

In contrast to caregivers’ comments that suggested relatively little concern about academic performance, about half of the caregivers shared concerns about their child’s social functioning in school, particularly highlighting that they felt the hearing loss might be impacting their child’s confidence in keeping up with conversations in group settings. They also felt that this affected their child’s willingness or success in participating in community activities. However, several other caregivers indicated that while social functioning was a preoccupation in the early years, they felt reassured that their child had now established close friendships. Social competence has been a longstanding concern for DHH children and studies of children with MUHL have yielded mixed results. Recent research has suggested that children with MUHL may not be compromised in this area in the early school years (Nassrallah et al., 2020). Other research has shown poorer social skills based on parent ratings even at preschool age (Laugen et al., 2017). More recently, large, population-based Australian studies of early-identified children with MUHL showed poorer psycho-social health-related quality of life scores relative to population norms, both in the preschool and school years (Carew et al., 2023) and a higher likelihood of emotional/behavioral difficulties during the early school years (Ong et al., 2023). Our caregivers were split on this issue, although they all expressed that social competence and friendships were a concern at some point along their child’s educational journey.

Caregivers also shared concerns that appeared to be specific to children with MUHL. Although most caregivers reported consistent use of amplification in school, questions about the benefits of hearing aids for milder hearing loss persisted. Several caregivers talked about the uncertainty around the decision to obtain hearing aids because of mixed messages from professionals in the early stages of diagnosis. Caregivers’ experiences likely reflect the continued uncertainty around the management of children with MUHL, which often leads to a case-by-case approach and later fitting of amplification (Bagatto & Tharpe, 2014; Ching et al., 2022; Lin et al., 2022). A previous review of literature that included position statements and guidelines related to hearing aid candidacy for DHH children found that, for children with MUHL, guidelines tend to reflect this hesitation, indicating that hearing aids may be considered on an individual basis and that trial amplification may be appropriate (Fitzpatrick et al., 2019). Recent interview research from Australia highlighted that audiologists continue to struggle with the management of children with MUHL, particularly concerning amplification recommendations (Ching et al., 2022). Our findings that most children were using amplification in school and at home contrast with earlier reports where up to one-third of children were reportedly not using their hearing aids (Fitzpatrick et al., 2010, 2014). This may reflect a change in practice and guidance for caregivers of contemporary children with MUHL or may be a result of characteristics specific to our study sample. In the outcomes study, from which this sample of caregivers was drawn, 85% of children with MUHL were fitted with amplification by one year of age (Fitzpatrick et al., 2019). Similarly, Walker et al. (2017) reported that 94% of children with mild bilateral hearing loss were fitted with hearing aids. Children with all degrees of hearing loss have been reported to increase amplification use with age (McCreery & Walker, 2017).

In addition to the issues around hearing technology, several caregivers raised concerns about the stability of their child’s hearing, including three children whose hearing deteriorated so significantly that they received cochlear implants. Previous research based on population-based data indicated that one-third to one-half of children with MUHL experienced deterioration in their hearing over time (Fitzpatrick et al., 2016; Purcell et al., 2016). Notably, the parents of all three children who received cochlear implants reported high academic functioning but shared concerns about their child’s social development. Additionally, all three families sought additional speech and language services beyond what was provided by the school district. Most caregivers seemed well-informed about the potential for changes in hearing, leading them to understand the importance of monitoring their child’s hearing.

Caregivers expressed frustration that their child’s MUHL was not well understood and not considered important by school professionals. In previous research with caregivers of preschool-age children with MUHL, we reported that they sometimes found audiologists or other providers to be dismissive right after diagnosis, attributing less importance to milder hearing losses (Fitzpatrick et al., 2016). It is interesting that several years later, these same caregivers raised similar concerns about school professionals’ lack of understanding of MUHL. Research has indicated that general education teachers feel inadequately prepared to teach DHH students and lack understanding of how to meet their needs in the classroom (Eriks-Brophy & Whittingham, 2013). This concept of low expectations or lack of understanding of deafness has been raised as an ongoing issue and an important area to consider when educating school professionals (Szymanski et al., 2013). This may occur even more frequently with children with MUHL, given the likelihood that they are less delayed in auditory and spoken language development. Professionals should share information about the impact of any degree of hearing loss on educational performance and establish appropriate goals and expectations for all DHH children. This information is an important component of the transition process from EI and preschool programs to school environments.

The need to advocate for their child was an important concept that permeated all the interviews. This includes the caregivers’ need to advocate, as well as their desire for their child to learn to advocate for themselves. Supporting caregivers in their advocacy efforts is an important component of providing quality services (Hess et al., 2006; Szarkowski et al., 2024b). Research indicates that caregivers who advocate for their child, regardless of the response from school professionals, believe that their efforts positively impact child and family outcomes (Burke et al., 2019), and researchers assert that supporting caregivers’ advocacy efforts is an important step in creating equal parent/professional partnerships, especially during the transition period (Gaspar & Jahromi, 2024; Hess et al., 2006). Additionally, caregivers felt strongly that to be successful, their child should learn to advocate for themselves. Researchers have found that students with disabilities face barriers to advocating for their needs that persist into post-secondary educational settings, so self-advocacy skills should be taught as soon as a child enters school (Kartovicky, 2020; Lopez et al., 2020). This is an important consideration for children with MUHL, as well, especially due to concerns caregivers shared about their child’s hearing loss being misunderstood, which may necessitate needing to speak up and request accommodations. Although children with MUHL may not require intensive intervention, parent concerns indicated they may need additional support in self-advocacy.

Research on parental advocacy for children with disabilities suggests a strong correlation between satisfaction with services and level of advocacy (Burke & Hodapp, 2016). This is important to consider as we aim to better support families in their advocacy efforts. Several caregivers in our study indicated concerns that their child would fall through the cracks because their needs were not as great as children with more severe hearing loss. This suggests a need for professionals to provide support during times of transition, offer information on appropriate services and accommodations, and assist caregivers in becoming strong advocates to ensure their child with MUHL is successful in the educational environment.

Implications for Practice

It is clear from our results that caregivers of children with MUHL share many of the same concerns as parents of other DHH children. However, this study identified some important distinctions. Our findings indicate that parents of children with MUHL are particularly worried about their child’s needs being overlooked and underestimated. To address this, it is essential to provide continuous information and support to general educators beyond the initial transition period. This ensures educators fully comprehend the necessity for accommodations and can effectively monitor students’ progress, reducing the risk of the needs of children with MUHL going unnoticed. Moreover, setting appropriate expectations and implementing consistent monitoring for students with MUHL is crucial. This approach benefits students who may not outwardly struggle but still require additional support. Finally, there is a pressing need for standardized procedures during the transition process. Parents have expressed a strong desire for information and support, especially during their child’s initial school transition. This presents a valuable opportunity for school districts and EI agencies to collaborate, develop comprehensive materials, enhance transparency about available supports and services, and establish clear communication channels. Such efforts will empower parents, making them feel more confident and supported throughout the process.

Limitations

This study has some limitations that should be considered in interpreting the findings. Caregivers were part of a longitudinal study and, consistent with other studies of this type, they tended to have a high education level and therefore may have had access to resources and supports not available to other caregivers. As such, caregivers’ views may not reflect those of people from other socio-economic and cultural backgrounds. In addition, although our study criteria included all children with MUHL, only caregivers with typical hearing joined the study. While a strength of our study is that caregivers were from three different regions in Ontario, they all received services in one Canadian province where pediatric hearing health and education services are publicly funded and where well-established early detection and intervention protocols are in place for DHH children. Finally, at the time of the interviews, these caregivers had been enrolled in the larger longitudinal study examining the outcomes of MUHL for five to eight years and their views may not necessarily reflect those of caregivers in typical clinical situations. Additionally, the caregivers were asked to recall experiences from the beginning of their child’s educational journey until the present, so, although unavoidable, there is a possibility of recall bias of their early education experiences. Also, while obtaining the parent perspective through qualitative interviews provided a rich understanding of their experiences and was a strength of this study, the pre-selected small sample sizes are not intended to be representative of all families of children with MUHL. Furthermore, having only the parents’ perspectives and not the lived experiences of the children limit our understanding of how to support these children. Future research should explore strategies to effectively support families of children with MUHL during transitions and throughout their school years. An additional limitation of our study is the absence of a Deaf individual on our research team. Future research should consider the inclusion of a Deaf researcher to ensure a more holistic approach to studying the impacts of hearing loss.

Potential areas of investigation include examining the perspectives of the students, their teachers, and DHH support personnel, and comparing these insights with parental perceptions to gain a comprehensive understanding of their experiences and needs. This study underscores the critical need to address the unique challenges faced by children with MUHL, despite their less apparent delays compared to peers with more severe hearing loss. These children remain at risk of being overlooked, with their needs potentially going unmet in educational settings. Caregivers of children with MUHL share concerns similar to those of other families with DHH children, highlighting the universal need for guidance and support in navigating educational systems and advocating for their child’s success. Given that children with MUHL comprise up to 50% of the DHH population, it is imperative that health and education professionals prioritize continuous support for these families from diagnosis through the school years. Transition periods, in particular, demand heightened attention to ensure that both children and their caregivers are equipped with the resources and guidance necessary for successful outcomes. Recognizing and addressing these needs can help bridge the gap and create equitable opportunities for all DHH children.

Author contributions

Dorie Noll (Conceptualization, Data curation, Formal analysis, Investigation, Methodology, Project administration, Writing—original draft, Writing—review & editing), Celine Fawagreh (Data curation, Formal analysis), and Elizabeth M. Fitzpatrick (Conceptualization, Formal analysis, Funding acquisition, Validation, Writing—original draft, Writing—review & editing)

Funding

This work was supported by a Canadian Institutes of Health Research (CIHR, grant number 366311). The funder was not involved in the conception or any other aspect of the study or manuscript.

Conflicts of interest

The authors have no conflicts of interest to declare related to this research.