Socio-Educational Challenges for the Inclusion of Children with Cochlear Implants: The Role of Families

Abstract

The article examines the socio-educational barriers and facilitators faced by families of children with cochlear implants (CI) in Andalucía (a region in southern Spain). Through a qualitative approach based on surveys and interviews, three main categories of limitations are identified: access to and quality of services, parental stress related to caregiving and communication, and socioeconomic and individual factors. Among the facilitators, financial support, family-professional collaboration, and inclusive practices in educational settings are highlighted. The findings underscore challenges such as the lack of coordination between medical and educational services, the need for teacher training, and the emotional and financial impact on families. Conversely, effective strategies such as family support networks, specialized hospital coordinators, and inclusive educational practices are emphasized. The study concludes that improving access to comprehensive services and fostering collaboration between educational and healthcare agents is essential to promote inclusive education and the well-being of families and children with CI. This work advocates for a critical and participatory perspective in the development of inclusive policies.

1. Introduction

The origin of hearing loss can have various causes—genetic, infectious, trauma-related, or exposure to loud noises (Kral et al., 2016; Manno et al., 2021). In many cases of severe bilateral hearing loss, cochlear implants (hereinafter CIs) provide an effective solution to partially restore hearing by directly stimulating the auditory nerve through surgical implantation in the inner ear (Boisvert et al., 2020). The implementation of these devices has been extensively studied, with research highlighting their benefits in language development, communication, and the quality of life of users (Ching et al., 2018). However, the adaptation and rehabilitation processes for children with CIs also pose significant challenges, particularly at the educational and social levels, for both the implant recipients and their families (Zaidman-Zait et al., 2017).

In this context, while considerable progress has been made in understanding the experiences of parents of children with cochlear implants (Zaidman-Zait et al., 2017; Ingber & Dromi, 2021), research also underscores the importance of social support, access to healthcare services, and collaboration between professionals and families (Ching et al., 2018; Ingber & Dromi, 2021) as key factors in improving these experiences. Nevertheless, studies exploring the family’s role in this context remain relatively superficial. There is a persistent need—one which serves as the primary aim of this study—to delve deeper into this area to achieve a more comprehensive understanding of the barriers and facilitators faced by families of implanted children in their socio-educational processes and their role in fostering inclusion.

This research article arises from this premise and forms part of two broader research projects. First, the project titled- Multisensory Methodologies for the Inclusive Education of Deaf Students (MULTIEDU)-, funded by the internal grant program of the University of Málaga and the Junta de Andalucía with code B2-2023-11. Second, the ongoing doctoral thesis titled Communicative and educational strategies of families with children who have Cochlear Implants, developed by the second author.

2. Cochlear Implants: Socio-Educational Barriers and Facilitators from the Perspectives of Parents

Parenting children with cochlear implants (CIs) presents significant challenges while also offering unique opportunities for the development and well-being of both the children and their family members. In most cases, early implantation facilitates the acquisition of oral language. As technology and intervention practices advance, it becomes imperative to understand the experiences and needs of parents to enhance support systems and improve the educational outcomes of their children. Families, as primary educational agents, hold valuable experiences and knowledge that can benefit other socio-educational actors (Ruiz et al., 2023). At the same time, families often face their own needs to positively navigate disability and foster the holistic development of their children.

If we delve deeper into this issue, we can identify three types of limitations discussed in the reviewed studies. First, what we term as limitations related to access and quality of services, which include (1) the development of services, such as delays in timely referrals, time constraints, issues related to the device or surgery, and financial challenges (Armstrong et al., 2013; Kothari & Kumar, 2015; Lester et al., 2011; Ravi & Gunjawate, 2020); (2) barriers to accessing rehabilitation care, particularly in rural areas, with factors such as low socioeconomic status, types of health insurance, and parental education levels playing a significant role (Johnston et al., 2008; Noblitt et al., 2018); (3) coordination issues among specialists, with the literature highlighting a lack of communication between pediatricians and otolaryngologists, often leading to delayed diagnoses (Lester et al., 2011; Li et al., 2016); and (4) the impact of the COVID-19 pandemic, which has exacerbated difficulties in accessing auditory healthcare and rehabilitation services, disrupted in-person therapies, and caused challenges in scheduling and maintaining devices (Mostafa et al., 2021).

Secondly, there are limitations related to parenting and communication stress, which include (1) communication challenges, particularly during the early years, which significantly affect the development of socio-educational relationships (Bat-Chava & Deignan, 2001); (2) everyday challenges and stress (Kanji et al., 2023; Parmar et al., 2023), experienced when parents face technical issues with the implant, communication difficulties, the behavior and temperament of the child, socialization challenges, habilitation demands, parental responsibilities, financial strain, service accessibility, and academic concerns (Kanji et al., 2023; Zaidman-Zait et al., 2017); and (3) parental stress and emotional well-being, where high levels of pressure impact emotional health and daily life, even in light of technological advancements (Wiseman et al., 2021).

Finally, a third category of limitations can be grouped under socioeconomic and individual factors. These include (1) low socioeconomic resources, which can negatively affect the utilization of services and the performance of the implant (Mohan et al., 2023); and (2) health insurance coverage, which influences access to and quality of services (Noblitt et al., 2018). However, in the case of the Spanish healthcare system, which provides the context for this study, public healthcare covers the costs of implantation and the provision of external processors, although families are responsible for maintenance and other related services. (3) Parental education levels significantly impact the utilization of services and implant performance (Noblitt et al., 2018).

In parallel, studies also highlight positive experiences—facilitators—reported by children with cochlear implants. These facilitators can be categorized into two main groups. The first group comprises facilitators related to resources and external support, which include (1) availability of family resources (Jeddi et al., 2012; Moshtaghi et al., 2018); (2) financial support, such as state-provided aid (Li et al., 2016); (3) child-related factors, such as positive self-esteem, adaptability, resilience, and parental support (Ravi & Gunjawate, 2020); and (4) the positive impact of parental education levels, which significantly contribute to the academic, educational, and social progress of children with cochlear implants (Lester et al., 2011; Jeddi et al., 2012).

The second group consists of facilitators related to social interaction and the educational environment, including (1) perceptions of parents, teachers, and peers regarding children’s friendships. In this regard, the study by Punch and Hyde (2011) emphasizes the importance of children’s social interactions as viewed by families and educators. However, many children with cochlear implants report dissatisfaction with their social relationships, perceiving fewer friendships compared to their non-implanted peers. (2) The availability of inclusive educational projects or schools, which offer greater opportunities for positive relationships compared to those attending special education schools, is another faciliator (Bunch & Valeo, 2010; Punch & Hyde, 2011; Wiener & Tardif, 2004).

All these issues discussed above have a direct impact on family well-being and the development of each family member. A balanced family dynamic, regardless of its structure, not only directly supports the socio-educational development of the child with a disability but also positively influences the relationships and personal growth of each family member (Alemán de León, 2015).

3. Materials and Methods

3.1. Approach

As we have outlined, the primary objective of this study is to explore the socio-educational barriers and facilitators encountered by the parents of children with cochlear implants (CIs). This research is framed within a qualitative approach (Flick, 2018). Specifically, we employ a case study methodology (Álvarez & San Fabián, 2012), incorporating a biographical–narrative perspective (Rivas, 2007; Cortés, 2019). This approach assumes that by delving into the life fragments and experiences of participants, we can generate meaningful units of analysis to understand their realities and contribute to the study of the phenomenon.

3.2. Materials, Strategies, and Participant Selection

In this research, various strategies were combined to collect information.

• In the first phase, a qualitative survey (Bryman, 2016; Mertens, 2019) comprising 28 ad hoc questions was administered. Among others, the following questions were included: What was the first way you obtained information after the diagnosis? What therapeutic support did you initially receive? Who advised you on what to do? What were the first days like in educational centers after the implantation? What communicative and educational strategies were implemented in educational centers? This survey was distributed to 58 parents of children with cochlear implants. Additionally, two of the participants, who are co-authors of this study, used the snowball sampling technique (Naderifar et al., 2017) to reach this number of participants.
• In the second phase, 20 semi-structured interviews (Hernández-Sampieri & Mendoza, 2020) were conducted with parents to construct family narratives and capture the experiences of the selected participants (Cortés et al., 2020). The selection of these participants was based on accessibility and convenience criteria, ensuring that participants met specific conditions, such as voluntarily agreeing to participate in the research and being a parent of a child with cochlear implants in an educational stage.

The data collection process was conducted under informed consent, ensuring that the participants were informed about the study, its purpose, scope, and process, and that they voluntarily agreed to participate. To ensure anonymity, pseudonyms were used, and to protect their privacy and confidentiality, the provisions of Organic Law 3/2018 (Jefatura del Estado, 2018), on Personal Data Protection and Guarantee of Digital Rights, were strictly followed.

4. Results and Discussion

To present the results for subsequent discussion, we have drawn up

Table 1. Thematization (A Priori), Interpretative and Categorization and Subthemes.

Thematization (A Priori)	Interpretative Categorization and Subthemes
1. Need for Training and Adequate Support	Between Uncertainty and the Urgency to Understand the Diagnosis -Initial perceptions and stressful situations -Family needs
2. Experience with Healthcare and Education Professionals	Overcoming Obstacles -Confronting the educational system -Addressing the specific needs of children -Socio-educational challenges
3. Auditory, Social, and Emotional Strategies	Seeking Alternatives for Educational Relationships -Family networks -Institutional-level coordination units -Inclusive school experiences

Source: Own elaboration, 2024.

, which reflects the a priori categories derived from the scientific literature reviewed and their relationships with the emerging interpretative categories identified through an inductive analysis (Braun & Clarke, 2006). This approach enables a dialogue with the information provided, ensuring that the analysis integrates both quantitative and qualitative dimensions. The prevalence of these categories is determined not only by their frequency of occurrence but also by the depth and narrative richness they provide (Nowell et al., 2017). Evidence has been incorporated throughout the discussion, selecting the most representative or illustrative examples of the participants’ voices. This ensures that the initial categories remain relevant and anchored in prior knowledge, while the emergent categories enrich the discussion and deepen the interpretative process on more particular issues.

In the following, we proceed to address the three emerging categories based on fragments/evidence from the contributions of the study participants along with the discussion.

4.1. Between Uncertainty and the Urgency to Understand the Diagnosis

The study’s findings highlight the significant challenges that early identification and intervention for children with severe hearing loss often pose for healthcare and education professionals as well as for families. These challenges include stress related to the disability, according to (Kanji et al., 2023; Parmar et al., 2023), a lack of understanding about the journey ahead, managing the cochlear implant (CI) device, and addressing the communication needs of their children. This triad represents one of the greatest barriers faced by families (Wiseman et al., 2021), which can often lead to financial difficulties associated with CI expenses (Bhamjee et al., 2019), stress and depression (Ruiz et al., 2023), and fears about the diagnosis itself and the decision of whether to proceed with cochlear implantation (Shukla et al., 2023). This struggle is evident in the words of Manuel (father of Luis):

For informational purposes, the medical team guides you about the tests to be performed and the available options (…). However, as a parent facing a disability with no prior experience regarding CIs, every comment feels like a heavy blow that leaves you completely disoriented. Many of the things they briefly explain don’t make sense, and you feel utterly lost. Time passes, you search for information, try to talk to others, and the emotional roller coaster and endless doubts persist. (…) The nurses suggest you start processing aid applications, but it all sounds foreign. It’s only later that we began to learn through the internet, contact networks, therapists, etc., but everything happens at a snail’s pace.

The decisions families must make during these initial stages can be overwhelming, as parents worry about surgical risks, the device’s efficacy, and its impact on their child’s personal and social development as a deaf individual (Archbold & Mayer, 2012). Additionally, there is anxiety about societal acceptance and their child’s ability to develop normative language skills (García & Concepción, 2018). This concern is reflected in María’s (mother of Daniela) account of neurosensory testing and the stress (Kanji et al., 2023; Parmar et al., 2023) associated with inconclusive results, as well as in Lucía’s (mother of Juan) frustration with the lack of definitive test outcomes. These narratives underscore the need for more comprehensive follow-up procedures, which is in line with the study by Yoshinaga-Itano (2003). The informants reported the following:

Everyone said I was crazy, that I was obsessed. I said that when my dog barked, the baby didn’t turn her head. (…) At the children’s hospital, they told me I was crazy, that no mother had ever run more hearing tests on her child in all of Málaga (…) My daughter Daniela was two and a half months old when we got the result: (…) severe profound bilateral deafness. Before cochlear implants, her auditory nerve needed stimulation. For that, (…) she had to wear hearing aids for some time. My partner was skeptical from the start, but later, everyone admitted that, yes, hearing aids do stimulate the auditory nerve.

(María, mother of Daniela)

Psychological support? Zero. And that’s what I missed the most—that someone could help structure things for us and explain the situation. Lots of early intervention centers, but the first thing these centers should do is help the families.

(Lucía, mother of Juan)

These early moments illustrate the critical role of healthcare professionals, audiologists, speech therapists, and educators—not only to provide technical knowledge but also to offer emotional support, helping parents navigate their concerns and expectations (Boisvert et al., 2020). However, a gap often exists between the technical language used by professionals and the comprehension of families, further complicating communication: The pediatrician told me that her hair being like that was a symptom of a possible disease. (Lucía, mother of Juan).

These findings highlight the need for effective coordination among the multiple agents involved. Unfortunately, such coordination was not evident in the study results.

We align with the findings of Kecman and Knox (2023) and Stewart et al. (2020) regarding the barriers and needs faced by families of individuals with cochlear implants (CIs). Families of children with CIs encounter multiple challenges throughout the diagnosis and treatment process. These shared experiences highlight the critical importance of accessing clear and accurate information about the pre-, intra-, and post-diagnosis stages, as well as treatment and educational options for children with hearing loss. We find two voices in this regard: It was beautiful but very strange. (Lucía, mother of Juan). But all of that sounds foreign. It’s only later that we began to learn through the internet, contact networks, therapists, etc., but everything happens at a snail’s pace. (Manuel, father of Luis).

Simultaneously, parents express the need for resources and support programs to help them understand and manage the challenges associated with their children’s hearing loss (Continisio et al., 2023; Faheim et al., 2023). When these resources are unavailable, the uncertainty about what to do amplifies the urgency to act: At the same time, I also took him to another ENT specialist at the hospital. (Lucía, mother of Juan).

Addressing these situations requires time and the need to acquire knowledge or at least explore the possibilities for their children’s future, which leads us to understand it as a complex process that requires the collaboration and coordination of different social, clinical and educational agents. In this regard, Pascucci et al. (2021), in their study on the impact of interprofessional collaboration in chronic disease management, point out to the importance of establishing effective and efficient relationships between social and clinical actors through collaborative work, which involves linking patient health and well-being with education and interprofessional collaboration. However, Neubauer et al. (2024) point out the difficulty of evaluating and demonstrating the positive effects of interprofessional education and collaboration on the quality of a patient’s care.

4.2. Overcoming Obstacles

The experiences of parents reveal significant deficiencies within the educational system. Families face numerous educational challenges, particularly the need to identify appropriate school environments, given the lack of resources and experiences capable of supporting children with cochlear implants (CIs) (Bhamjee et al., 2019). The following sentiment was expressed by Carmen, a teacher with hearing loss: There isn’t much training on this topic today. I think there’s a lack of both training and motivation when teachers are faced with a student who has a cochlear implant.

This lack of training can lead to limited interactions and demotivation among both teachers and students, who often feel unprepared to manage these situations (Archbold et al., 2002; Jensema, 1997; Luckner & Bowen, 2006). This sentiment is reflected in this research, as illustrated by the following dialogue: I didn’t like it—did you? (Daniela, 8 years old, asking her mother). I didn’t like it either. No, because when you didn’t understand something, the teacher would say: ‘Well, Daniela, let them explain it to you at home. (María, mother of Daniela).

Two distinct perspectives emerged regarding how families and schools approach the educational development of children with CIs:

• The compensatory perspective, such as that of Lucas and his mother, highlights the importance of immediate and personalized support to resolve doubts and facilitate educational progress, as proposed by Karlsudd (2023). This approach relies on adaptive educational resources and the availability of one-on-one assistance.
• The inclusive perspective (Arnáiz et al., 2018), as expressed by other parents, emphasizes that schools should not focus solely on a child’s deficits. Instead, schools should aim to create an environment where all students can thrive: The school should not just address my child’s shortcomings but should strive to create a space where everyone has the opportunity to succeed. (Manuel, father of Luis).

On the other hand, families express their children’s specific needs, highlighting communication and language comprehension as major challenges. One significant difficulty relates to socialization with peers, as illustrated by the words of Lucía (mother of Juan) and Lucas (a student):

Juan tends to play alone. Sometimes, they find him eating his snack next to the cleaning staff, in the hallway near his pavilion, because he can communicate better with adults than with children. If you gesture to a child, they ignore you—even his older brother does it. However, adults make an effort to engage with him and help him integrate. He won’t be able to do it on his own.

(Lucía, mother of Juan)

During recess, there’s a lot of noise, so I still don’t understand my classmates very well. I was kind of alone… I don’t know, I didn’t socialize much because there’s so much noise during recess. For example, when you don’t understand well (…) you just stand there thinking… ‘What should I do?’.

(Lucas, student)

Another key challenge involves fostering language development. María (mother of Daniela) recounts how they began using sign language and other auditory and visual techniques to encourage communication with their daughter. Manuel (father of Luis) emphasizes the importance of constantly repeating basic sounds and words, which is crucial for language development in children with CIs according to Marschark and Spencer (2011).

These examples underscore not only the importance of employing varied and adaptive teaching methods (Easterbrooks & Beal-Alvarez, 2013; Mayer & Trezek, 2018) but also the critical roles of families and schools in fostering their children’s development. Families and schools are the primary agents with whom children spend most of their time in diverse life situations.

However, this essential role of families can lead to stress if there is no coordinated support, as the specific needs of the disability require additional attention and effort. Lucía (mother of Juan) provides a poignant example:

The early intervention psychologist taught us a few strategies. One was to sit him in a chair, show him a sad or angry face, or use pictograms, like a kind of color-coded chart with objectives, up to red, which represents anger. This worked for a while. (…) You have to wait for the tantrum to subside, and when he’s had enough, he hugs me and starts calming down. I end up completely drained, but in that moment, I try to stay calm so he doesn’t notice. (…) Once Juan is calm, I leave him with his father and take some time to be alone in my room, clear my mind, and recharge. I feel exhausted.

This narrative illustrates the psychological toll that these challenges can impose on families, emphasizing the importance of providing coordinated support to prevent burnout and ensure the well-being of both parents and children.

4.3. Seeking Alternatives for Educational Relationships

This section highlights three alternative experiences that foster cooperation and collaborative networks to enhance educational relationships.

One notable example is the creation of various WhatsApp groups for families, these groups facilitate informal learning by enabling families to share information, offer advice, and exchange resources (Ruiz et al., 2023). Such collaborative learning fosters active participation and collective knowledge-building, as noted by Abad-Salgado (2016). This dynamic is illustrated in a conversation from August 2024 in the WhatsApp group Cochlear Superpapas:

Mother 1:

Good morning, group! Tomorrow Valentina will have her implants upgraded (from Nucleus 6 to 8), and I wanted to ask those who have already gone through this if the new processor sounds different—like, a bit uncomfortable or strange for a few days—or not. Thanks!

Mother 2:

We also upgraded from 6 to 8, and the adaptation was very good and very quick.

Mother 3:

My daughter had hers upgraded in May, and by June, we had to go back because she wasn’t hearing well—it just needed an adjustment. Now she’s doing great. One important thing: they weigh much less, which is great, but if your child is small, always use the safety cord because they fall off more easily. Everything will go wonderfully, you’ll see.

Mother 1:

Yes! We’re excited, but she’s not so much (she’s 11 years old). She’s afraid of hearing differently. She feels safe and wants to stick with the Nucleus 6! That’s why I was asking—about school and activities, to know if she might feel a bit lost at first.

The Cochlear Implant Unit at the Virgen de la Macarena Hospital (Seville) has implemented the role of a coordinator within its otolaryngology department. This coordinator serves as a liaison between families, schools, and social resources to foster more integrated and interdisciplinary practices aimed at inclusion (Simón et al., 2016). Families have expressed their gratitude for this service:

Mother 1:

My son loves going to Seville, especially because of the toy motorcycle he gets to ride while we wait. It’s a service that rarely runs late, but while we wait, my child can ride the motorcycle up and down the hospital hallway.

Father 1:

Before coming to this hospital, waiting times were challenging. The waiting area was shared with adults from other medical departments. It was noisy and crowded, with hospital beds being moved around. My youngest could sit quietly for the first 15 min, but after that, he’d start running around the hallways. I’d bring snacks and play cartoons on my phone, but by the time he was called in, he was tired and unwilling to do the exercises with the speech therapist. I’m thrilled with the cochlear implant network in Seville. Now, when my son goes in for his consultations, he’s ready to engage and play with the healthcare staff.

Mother 2:

I have the direct phone number for the coordinator of the Andalusian Cochlear Implant Network, and every time I’ve needed help, they’ve responded effectively.

Some families shared inclusive school experiences where teachers and other school staff, such as the speech and language specialist, demonstrated diligence in collaborative work and inclusion:

Mother 1:

I asked the teacher if she could write summaries of the activities done in class. My daughter usually didn’t tell me what she did at school, so this helped me work on some concepts with her at home or with the speech therapists.

Father 1:

My partner and I currently have a WhatsApp group with our child’s speech and language specialist. Every week, the teacher sends us videos of exercises our child needs to practice at home. They also support the classroom teacher, not just for our child, but for the whole class. We can see a coordinated effort at work.

Mother 2:

At my child’s school, the teachers had no prior experience with students with cochlear implants. I asked the school administration if they could organize a practical training session for the staff. The training was held, and it was a wonderful experience. We’ve seen changes like the reorganization of the classroom or the implementation of an auditory traffic light system. They’ve ended up adapting it for all the children.

Schools represent another challenging space for implanted students, as they are, alongside families, primary agents of socialization, according to Fernández-Palomares (2003). This highlights a range of needs for advancing inclusive education projects. Addressing these needs through adequate teacher training, active participation, and the creation of collaborative networks is essential for ensuring inclusive education, as shown in the study by Arnáiz et al. (2018). These changes not only enhance the educational experience of children with CIs but also contribute to a more inclusive and equitable learning environment for all students.

Additionally, as discussed throughout this study, there is a critical need for comprehensive support programs focusing on students with CIs and their families. These programs should include not only academic and educational support but also emotional and psychological assistance for families. As noted in the studies by Geers et al. (2008), Kelly and Drasgow (2020), Majorano et al. (2019), and Spencer et al. (2004), such support is crucial for the well-being of families and the academic success of students with cochlear implants.

5. Alternative Perspectives as a Conclusion

While the studies cited and the evidence presented offer valuable insights into the challenges and experiences of families of children with cochlear implants (CIs), it is crucial to adopt a critical perspective and reflect on the implications of these findings within the realm of inclusion.

First, the predominance of financial and educational barriers as limiting factors underscores a systemic issue in the provision of equitable services. It is imperative to question why public policies and healthcare systems are not adequately designed to ensure universal access to high-quality inclusive education for all children (Bhamjee et al., 2019; Wiseman et al., 2021), thereby safeguarding the right to education and dignified development.

Second, it is necessary to evaluate the effectiveness and long-term impact of the emotional and educational support provided to families. Emotional adaptation and parental stress, while critical, must be addressed holistically, incorporating empowerment and active participation in educational communities, alongside mental health professionals specializing in auditory disabilities and parental support (Majorano et al., 2019; Kelly & Drasgow, 2020).

Third, the insufficient training of teachers highlights an urgent need for professional development programs focused on inclusive education. This is also corroborated by Triviño-Amigo et al. (2022), who point out in their study the existence of a large percentage of teachers who report a lack of initial training to be able to deal adequately with all the diversity of students. This directly impacts the absence of a clear model of inclusive education within classrooms and perpetuates doubts among parents about how their children’s educational needs should be addressed. It is necessary to develop joint projects that combine the specific needs of each student and materialize in support systems that ensure the educational success of children with CIs (Marschark & Spencer, 2011).

Finally, while efforts were made to include a representative number of families of individuals with CIs, we recognize that advancing current research would benefit from a greater inclusion of diverse voices and an intersectional approach. This issue is also reflected in the study developed by Kecman (2022), after a literature review of three decades, which mentions the lack of diversity in the sampling of families of children with CI. It is essential to continue progressing in this line of research to enrich the narratives of those involved and adopt a more inclusive and participatory framework in both research and policymaking, reflecting the diversity and complexity of these experiences.