Supports for Hearing Families with Deaf Children

Supports for Hearing Families with Deaf Children

13 Nov, 2024 | News

More than 90% of deaf children are born to hearing parents who have limited knowledge about deafness and require comprehensive support and information to support and communicate with their deaf child. However, little is known about the systems that support hearing families with deaf children.

By Julia Terry, Jaynie Rance

https://doi.org/10.1371/journal.pone.0288771

From Systems that support hearing families with deaf children: A scoping review | PLOS ONE

When parents find out their child has been diagnosed as deaf or having hearing loss, or when they suspect this to be the case, families begin a journey that involves differing amounts of support, information, and guidance. For many families, initial discussions begin at new-born hearing screening, if these services are available. Newborn hearing screening has become an essential part of neonatal care in high-income countries with positive outcomes following early intervention during the critical period to enable optimal language development. The early detection of hearing status can prevent significant detrimental effects on cognitive development happening later. For example, if children’s development needs are not fully addressed [10] a deaf child may not develop language skills to ensure fluent communication as a vital platform for further learning. Language deprivation in the first five years of life appears to have permanent consequences for long-term neurological development [11].

Whilst families welcome prompt hearing screening, it is worth bearing in mind the range of perspectives that exist about deafness. Parents say they encounter predominantly medical model approaches, which suggest their child has a deficit [12], proposing that deafness is treated and seen as an impairment [13]. Hearing families may find later that there are cultural-linguistic models and alternative approaches that help them understand the social identity of their deaf children. The socio-cultural view that considers the rich environment of Deaf communities, including the naturalness of sign languages with deafness seen as a way of being, and not an impairment [14]. Diagnostic rituals can set in motion a deficit-orientated way of addressing a child’s needs, sometimes resulting in diminishing parental competence and confidence [15]. Often parents report that initial information received upon early detection of their child’s hearing loss can be incomplete and coloured by workers’ personal beliefs and values, usually originating from a medical model [16], when healthcare policies could acknowledge the broad scope of conflicting views that hearing parents may encounter.

Hearing screening, identification and individualised early intervention is critical in helping deaf or hard of hearing children achieve their full potential [17] and has led many nations to develop Early Hearing Detection and Intervention programs. It may be audiology, speech and language services or education professionals who begin to provide parents with advice about communication choices and pathways. Frequently the not-for-profit or charity sector agencies provide additional support and information perhaps because they have wider scope in terms of delivery arrangements.

Systems that support hearing parents with deaf children may include education, health, care, and social services, depending on the child’s age and location. Support may be provided by statutory services and the voluntary sector and may include short-term initiatives and long-term input. Essentially the support families have and the advice they are given in the early years of their child’s life is of key importance. Hearing parents will want to know about how the ear works, about deafness, communication and language choices, their child’s emotional and social development, education, alerting and assistive devices as well as early years support. At an early point there will be discussions with the family about the child’s language development and communication options. Professionals who support families with deaf children may hold a range of views towards sign language, but essentially families will decide about communication choices and whether their child will learn a mixture of spoken and signed language or just a spoken language [18]. Decisions made about communication choice will likely affect the child and family for a lifetime [19].

Fully accessible language experiences during the early years are vital in empowering deaf children’s development potential [20]. There is a critical window for language development and if a child is not fluent in a language by around the age of five years old [21], he or she may not achieve full fluency in any language. It is a foundational language that is key to the development of future language. Sign language often comes naturally to deaf children, and deaf children exposed to sign language during the first 6 months of life have age-expected vocabulary growth when compared to hearing children [22–24], meaning that learning a signed language can avoid language delays. If parents are keen for their deaf child to learn speech, then sign language does not impede this. Parents can be given misinformation and not be made aware that there are risks in excluding sign language during the critical time of language acquisition, with no evidence that sign language causes harm [25]. There are recommendations for changes in existing systems to support bimodal bilingualism as default practice, in order to provide the best educational outcomes, which means a signed language and a spoken language [23]. It is suggested that all deaf children should be bilingual [26]. However, little is known about the support parents are given at the outset of these decision-making processes.

Critics suggest there is a need to stop dichotomising spoken or signed language, and to focus instead on educating families about the range of opportunities available [19, 27]. Frequently hearing parents of deaf children do not know where to turn for support and can be overwhelmed with advice as they try to understand different methods employed in the language development and education of their child [20]. Support for hearing parents of deaf children varies globally. A variety of initiatives and projects appear regularly in local and regional news stories, such as support for sign language classes [28], family camps for deaf children [29] and artificial intelligence avatars that help deaf children to read [30]. Support systems are people or structures in society that provide information, resources, encouragement, practical assistance, and emotional strength.

We argue that there is limited published evidence about the support systems for hearing parents with deaf children. Therefore, we conducted a scoping review to provide a baseline overview of the published evidence until 2021 of the extent, variety, and nature of literature in this area.

Findings

  1. Communication choices and strategies

Hearing parents will need to decide whether their deaf child will communicate using a spoken language or a signed and spoken language [37]. The timing of this communication choice is challenging as hearing parents make decisions during the small window when their child starts to develop language during the first few years of life. Hearing parents have little understanding about deafness, nor is infrastructure present to guide parents towards appropriate engagement with Deaf communities to begin discussing the differences between communication strategies. Parents can be inundated with information regarding communication and educational methods [20]. Yet the decision is up to parents and the key factor being that any form of early language development is critical [19]. Around the decision-making time, parents commonly want to know what will give their deaf child the best chance of learning to communicate, and whether using sign language might adversely affect their academic achievements and if it is worth waiting to see the impact of a cochlear implant before learning sign language [5]. There is frequent reporting that medical professionals claim that promoting a signed language with a deaf child may delay or hinder the development of spoken language learning, with suggestions that children may be confused [5], although much evidence supports the positives of learning to sign [19].

Factors contributing to parents’ selection of a communication mode to use with their children with hearing loss, are reported as information, perception of assistive technology, professionals’ attitudes and the quality and availability of support [38]. Parents’ decisions about communication choices with their deaf child are strongly influenced by the information they receive, which in the main focuses on amplification of sound, with information givers rarely mentioning sign language approaches [39]. Parents who chose speech only as a communication choice appear to have received advice from education and speech/audiology professionals more often [37]. Similar findings are reported in other studies that parents relied heavily on advice from professionals [40, 41]. There is suggestion that advice from speech and language professionals, audiologists and specialist teachers was valued by parents over medical or non-professional views [42]. Conversely, parents of deaf children they surveyed did not find any professional group’s advice more influential than another, and reported they ultimately relied on their own judgements to make decisions about their child’s communication choices [43].

Several studies compared hearing and Deaf parents’ views about communication choices as well as child outcomes. Deaf parents are likely to choose a more visual mode of communication for their deaf child, and frequently outperform hearing parents in interaction studies that compare hearing and Deaf parents’ engagements with their deaf children [44]. For example, Deaf parents tend to use a higher level of tactile strategies when communicating with their deaf child compared to hearing parents [42].

When parents make hearing technology and communication modality choices for their children amongst competing discourses of deafness and language, hearing program principles of fully informed choice of communication narrowly reflected medical knowledge of deafness only [43]. Frequently there is reported to be minimal information about sign language and Deaf culture, and over time parents resist medical knowledge and asked for alternate services as their knowledge of their own children grew beyond diagnostic assumptions [43]. Initial adoption of a medicalised model script is recognised as occurring, which often maintains a strict divide between competing views of deafness [44], such views may include parents thinking their children are successful if they do not need a signed language.

In a comparative study, two groups of hearing mothers with deaf children were studied, with one group more experienced as their children had been diagnosed for more than 24 months (compared to the mothers with children diagnosed in the last 18 months) [45]. The aim was to investigate the type of communication strategies that parents use with their children and how the type of early intervention (EI) involvement affected parents’ values about communication strategies. Mothers completed questionnaires about their views on communication strategies and were also videoed for 3-minute mother-child play interactions, and only minor differences were found between the groups of less and more experienced mothers of deaf children suggesting limited impact of early intervention programs on parental choice of communication method [45].

The main factors that influenced caregivers to change the communication method with their child with hearing loss included family characteristics, access to information [46], family strengths, family beliefs, and family practices, with the family at the core of decision-making regardless of severity of hearing loss, family demographic or type of device used or communication approach [47]. Similarly, the importance of communication changes regarding language modality being child-led, as parents adapted their language choices in line with their child’s needs to improve communication confidence, noting that early sign language exposure benefits the development of spoken language [48].

A comparative study of hearing versus Deaf parents with their respective deaf children acknowledged the active role that parents, and children take when communicating as they sought to explore successful joint attention (where one party seeks to gain the attention of the other, and the other responds) [49]. Studies that inform understanding of factors supporting language success are crucial. Communication in families will always be a joint venture and knowing if gaining joint attention at an early development point would assist families and professionals with communication choices in the future [49]. Very often parents want to know exactly what it is that will help communication to be most effective.

Complexities of communication choice are apparent in studies that focus on the intricacies of self-identify in children of parents who chose sign language as a primary mode of communication [50]. Follow up appointments focusing on communication modality, particularly following cochlear implantation, suggest a background of opposing views on communication choice mean increased awareness for parents is vital [51]. Families can unknowingly overprotect their child, limit knowledge and skill development due to hearing parents’ lack of knowledge and understanding about Deaf culture and Deaf communities [52]. All three studies highlighted the importance of continuing professional development for workers in order that they gain familiarity with these topics, and in turn discuss them with families of deaf children [50–52].

Perceptions of factors that foster success in deaf students from parents, teachers, interpreters, notetakers and deaf students themselves do not mention communication choice at a young age; instead, success was attributed to strategic components including self-determination, family involvement, friendships, reading and high expectations [53].

In one study deaf children of Spanish-speaking families studied did not learn American Sign Language (ASL) early on, often coming to this much later, with many of the children having limited access to language early on, and parents expressing frustration at not being able to communicate with their children, with the family being left behind through delaying communication through ASL [54].

The importance of professional advice provided to hearing parents of deaf children about communication mode and language use choices is noted, as this may heavily influence caregiver choices about communication. Understandings about factors that led to specific communication choices by hearing parents could be gained through further research [55]. The next theme focuses on papers concerning interventions and resources that support hearing parents with deaf children.

  1. Interventions and resources that support hearing parents with deaf children

Theme two incorporates identified studies that focused on interventions and resources that support hearing parents with deaf children. In this section we report on intervention programmes for hearing parents with deaf children broadly, then how programs were delivered and finally specific types of interventions that support hearing parents with deaf children.

Specific interventions of Deaf mentors and role models.

A scoping review of early interventions for parents of deaf infants [56] found that interventions commonly focus on language, communication and parent knowledge, well-being and parent/child relationships and did not find any studies focusing on parent support to nurture socio-emotional development, which is often a poor outcome for deaf children. Socio-emotional development is not well-analysed by hearing professionals, who may not realise that it is not deafness that needs fixing but everything around it. It was concluded that research in this area is much needed, with most studies conducted some time ago and not in line with healthcare advances, recommending further research to develop evidence based early intervention [56]. A literature review of early intervention programme models and processes [57] identified five themes which were caregiver involvement, caregiver coaching, caregiver satisfaction, intervention program challenges and telehealth. Understandably caregiver involvement needs to be culturally and linguistically appropriate, as this improves caregiver satisfaction with services and improves outcomes for deaf children [57]. Another example is the HI-HOPES intervention program, developed in 2006 and still current, with an appreciation of South Africa’s characteristic linguistic, racial, and cultural diversity, noting embedding of cultural values and practices and includes provision of Deaf mentors [58].

A series of studies of the Colorado Home Intervention Program over nine years [59], saw a change in the average age of intervention decrease from 20 months to 2 months, meaning infants had much earlier intervention and therefore increased their language and social-emotional range. The early engagement with parents from a CO-Hear co-ordinator about choice of intervention service is a key success factor [59]. Another language intervention program with a sole parent focus, this time oral only, is the Muenstar Parental Program [60], a family-centred intervention following newborn hearing screening. Parents received training on the positive impact their behaviour had on their infant including showing more eye contact, more imitations and more listening, where parent and trainer discuss and agree principles to intensify in the next videotaped interaction. Although only single training sessions [60], authors noted the model to be a comprehensive early intervention focusing on encouragement, however, when published it was at the concept stage with minimal data available.

Summer pre-school language environments compared to their home environments suggest there are benefits to children, whilst recognising that pre-schoolers’ parents continue to require education around language strategies [61]. Parents would likely benefit from guided practice regarding extending conversations and asking questions at their child’s language level, and how to expand their children’s language, and that practising these skills with a professional is essential [61].

Mentors for families with deaf and hard of hearing children have been found to be highly effective, with study examples of family mentors [62] and mentors for children [63]. There is an awareness that parent- to- parent support models are rooted in disability ideologies and are highly valued [64], and often need to be unique [62]. Parent mentors made notes following each phone support conversation, and notes analysed over a two-year period showing hearing related conversations, early intervention and multiple disabilities were the primary topics of conversations between parent mentors and families. A literature review and eDelphi study to define the vital contribution of parents in early hearing detection and intervention programs suggested supporting, or a mentoring parent was well received [65].

Similarly Deaf adults are a key element in early intervention programs [66], primarily as role models and language providers, noting that families do not have a range of Deaf professionals to connect with in early intervention programs. One of the first reported studies of Deaf family mentors [63] provided a Deaf adult mentor who made home visits to deaf children and their families to share language, as well as a hearing advisor to support to parents. This type of provision is referred to as bilingual-bicultural and was intended as introductory in the first instance in two US states. The Deaf mentors taught each family American Sign Language (ASL) signs, interacted with the child using ASL, shared Deaf knowledge and culture and introduced the family to the local Deaf community, promoting a bi-bi home environment. It is reported children with Deaf mentors used more than twice the number of signs and parents used more than six times the number of signs than the control group [63]. 85% of survey respondents in the Lifetrack Deaf mentor family program operating in Minnesota USA reported their child’s quality of life to have improved, and 76% of families finding the information about Deaf culture ‘very helpful’ [67]. There are limited examples of early intervention providers that include Deaf mentor provision for children and families in the US, and whilst 27% of their survey respondents said there were a diverse range of Deaf professionals for families to connect with; but only 2% of respondents reported the first point of contact with early intervention professionals had been with a Deaf person [66].

Delivering intervention programs using telehealth.

Although the provision of healthcare with remote support has become commonplace during Covid-19, prior to the pandemic many services used telehealth because it offered the potential to meet the needs of underserved populations in remote regions [68, 69].

Tele-practice or tele-intervention (or virtual home visit) has been used increasingly as a method of delivering early intervention services to families of deaf children. Tele-practice intervention outcomes were compared for children, family and provider compared to in-person home visits using fifteen providers across five US states (Maine, Missouri, Utah, Washington and Oregon) and found children in the telepractice intervention group scored significantly higher on their receptive and total language scores that the children who received in-person visits [70]. Higher scores were also reported with telepractice intervention for parent engagement and provider responsiveness compared to in-person visits [70]. Parents reported having better support systems, feeling better supported by programs and knowing how to advocate more for their deaf child. Notably in-person visits were reported to focus more on intervention with the child with parent observation, whilst tele-practice engaged parents more in supporting parents as the child’s natural teacher. Equally when comparing tele-intervention with in-person visits, increased engagement from the tele-intervention group has been reported, with families reporting themselves to being ‘more in the driving seat’, and specialised early intervention services for families with deaf children via telehealth to be cost effective [71].

Preschool and school services were examined for children who are hard of hearing and described service setting, amount, and configuration, analysing relationships between services and hearing levels and language scores [72]. Noting that as children reach the age of three years that services often shift from being family centred to being more child focused and a need for more interprofessional practice to best meet the needs of children who are deaf. Findings that 19% of families did not receive any intervention, which rose to 30% by the time children were of school-age [72].

Intervention support—Teaching sign language to parents.

Another specific type of intervention to support hearing parents with deaf children is supporting the teaching of sign language. When deaf children are introduced to sign language there is an obvious need for parents and significant others in the child’s situation to learn to communicate in that language. However, if there are no other Deaf members of the family, a signed language may not be used in the home. Therefore, the deaf child may not have the exposure to language role models in the home in order to acquire a signed language as a first language. Giving parents a way to communicate with their deaf child will mean parents are provided with greater opportunities to engage effectively with their child’s world. It may be that a signed language does indeed later become a deaf child’s primary language, and early development of this in the home can be key. Six key components in any language development and support programme for parents include communication strategies, language tuition, immersion/language use, language modelling, information giving and practical/emotional support [73]. During curriculum development of Australian Sign Language (Auslan) and creation of family-specific resources, after finding the need for a language development program that incorporated classroom teaching, incidental learning opportunities and natural sign language immersion with additional learning resources. There is limited available evidence on the teaching of a signed language but researchers stress the need for involvement with Deaf adults or what it is like to live as a Deaf person being of primary importance [73].

A five-year sign language intervention project is reported [74] with 81 hearing family members in Finland learning sign language once a week with a teacher who was Deaf, Parents, siblings, and other relatives met once monthly to study sign language, and all families in the project signed together about twice yearly. Noting that if one is to succeed in modern society, communication competence should be good [74], and found that families most actively involved learned a greater amount.

One challenge noted by research teams regarding interventions given the geographic dispersion of children who are DHH is the shortage of adequately trained professionals [70, 71]. The next theme presents material from the literature about family perspectives and environments.

  1. Family perspectives and environments

Family perspectives and environments are an over-arching theme that include evidence about family experiences, needs, coping and environmental relevance, and are reported in this section.

A study of family experiences and journeys exploring reactions, behaviours and strategies with 50 hearing parents with deaf children in Karachi City, Pakistan [75], found all parents reported shock on learning their child was deaf, and 99% were stressed by this news. 98% of these parents wanted counselling and support about three main areas: diagnosis of hearing impairment, speech and communication, and hearing aid maintenance, with specific structured counselling and information sessions in hospitals or schools recommended [75]. Family journeys with childhood deafness in Mexico are explored through the lens of a pilgrimage through Pfister’s [76] study as families realised their quest was not about fixing hearing but about finding more reliable communication methods. Parents reported the most common support was in the form of biomedical options which had restricted scope. Families also reported countless troubling questions without a forum to present them [76]. Similar to the concept of impairment as a predicament that can be overcome [77], families wanted to continue their quest for worlds people inhabit and aspired to challenge medicalised ideologies, which suggest family perseverance [76]. Eighteen hearing parents of deaf children in Western Australia reported struggling with a deafness diagnosis and recommendations for professionals who should not “just give a pamphlet to parents…never assume technology will cure all…and find out how a family ticks” [78]. It is stressed that more research is needed about deaf children with hearing parents across various life stages to fully understand potential challenges; and concluded that Deaf parents of deaf children have much insight to offer hearing parents with deaf children.

Studies that examined hearing families’ stresses and needs highlighted socioeconomic and cultural factors impacting on carers of deaf children in Ecuador around education and employment [79]. Carers are critical of new measures around schooling that may lead to reduced resources and discrimination and propose future healthcare practitioners screen deaf children for potential abuse regularly due to their vulnerabilities. Using the Parenting Stress Index and information gathered on personal and social resources, researchers found parent variables are largely responsible for successful child development [80]. A correlational study of stress levels and coping responses found the relationship between family and parental stress and a crisis with a child with a disability to be complex [81]. Notably families who were able to communicate with their deaf child through a signed language found this was positively related to their stress experience.

Parenting stress reported by Korean mothers of deaf children [82] suggests a need for comprehensive support services that include schools, parents, siblings and social workers, as they reported on-going alienation in mainstream education [83] and feeling left out within family relationships. Having a child with hearing loss does change family dynamics as hearing loss becomes the dominant family topic. Healthy families of children who were deaf were interviewed to identify what contributed to a health family dynamic [84]. Finding that families engage with a variety of professionals, there was a reported desire for professionals to more actively listen and to demonstrate confidence in families to capitalise on existing strengths and resources [84]. Proactive families welcomed workers who were willing to tolerate a variety of perspectives and options for them and their deaf children, and for workers to create social events for families and workers to interact together. Often hearing families report not having a true voice because they do not understand educational processes and systems, which does not help them to advocate for their deaf children [85].

Researchers who explored coping strategies of parents with deaf children note that parent stress is not an outcome of child deafness but of different characteristics of the context, perceptions and resources [86]. Exploring critical incidents with parents whose children have Cochlear implants to understand what influences parents’ coping suggest opportunities to share experiences with others and consistent family support are essential, as is the importance of understanding what hinders coping processes [87]. Adolescents themselves with Cochlear implants in Copenhagen reported diverse experiences from others of similar age, with participants reporting higher levels of feeling different from others also reported higher levels of loneliness, although this was less for those implanted at a much earlier age; and implies the need for flexible tailored support for all [88]. The actual reasons for deaf adolescents reporting loneliness is not fully known. Family environments can be enhanced by education and therapy to create robust language environments to maximise cochlear implanted children’s potential [89]. Families who reported they had a higher emphasis on being organised self-reported they had children with fewer inhibition problems, and that emphasis on structure and planning in family activities can help grow a supportive social family climate. Family environments are one area that can be modified when families become aware of problems impacting on their child’s progress [89].

A historical study conducted in Cyprus reported on Deaf adults’ childhood memories and how when they were children they reported feeling isolated in family environments due to lack of communication as families often refused to learn sign language [90]. This worsened when extended family visited and speech pace increased. The ‘dinner table syndrome’ is much reported and describes indirect family communication that occurs at family meals, during recreation and car rides that provides important opportunities to learn about health-related topics and are common to most families [91]. Deaf people with hearing parents often report limited access to contextual learning opportunities during childhood [92] which highlights the importance of environmental factors.

However for deaf children introduced to Deaf adults in Deaf clubs there are clear benefits for engagement with Deaf role models, where they can discuss serious issues and communicate effectively [76, 90]. Although it must be noted that Deaf clubs in many parts of the UK and US are reducing in number [93, 94]. Social success can be viewed differently, with hearing children and parents seeing their friendships more positively than deaf children [95]. Evidence is consistent about deaf children with Deaf parents having higher social success and better communication outcomes than deaf children of hearing parents [95].

  1. Deaf identity development

Deaf identity development describes the contrasting nature of opposing aspects of deaf and hearing perspectives on topics that relate to support for hearing parents, for example models of deafness and language and communication modalities, as well as ways deaf people encounter Deaf identity.

A review of mainstream resilience literature, in relation to what it means to be deaf and the contexts of deafness around disability, suggest resilience is often about challenging social and structural barriers [96]. The barriers in themselves often create risk and adversity, and for deaf young people the successful navigation of “countless daily hassles, which may commonly deny, disable or exclude them” is a key definition of resilience [96, p 52]. Protective factors and skill development are the enablers.

The cultural constructs of deafness and hearingness can best be viewed through a lens of multimodality, with communication being more than about language [97, 98]. The focus on why the body matters in how we, hearing and Deaf, come to shape a sense of self and the interplay between resources we use in the process. Such intersections are important in the development of identity and social skills. Aspects of adolescent-reported social capital (for example, the networks and relationships that enable a society to function) are reported as being linked to their language and reading skills, with deaf young people found to have less strong social skills than their hearing peers [99]. Aspects of adolescent-reported social capital are positively related to their language and literacy outcomes, suggesting the importance of increased promotion of social capital in adolescents who are DHH and their families [100].

The importance of understanding different ways that deaf children are contextualised, usually through the medical model, the social model and the Deaf culture model of Deafness are reported [101], with the medical model remaining dominant and framing being deaf as having hearing that does not work and needs to be treated to restore Deaf people to the normality of the majority of the population. The social model of deafness focuses on disability and strives for inclusion to ensure differences are supported. A Deaf cultural model values and celebrates Deafness collectively, often with a focus on Deafhood [102] and Deaf pride, where the label of impairment is seen negatively. A social relational model that is more about how deaf children shape their own identities and relocating the balance of power to create policy directives regarding increased use of signed language would enable greater inclusion and would directly challenge structures that exist [101]. Re-framing deaf children as plurilingual learners of signed language, English and additional languages, instead of as deficient bilinguals by dominant culture standards has potential [101].

Hearing parents’ experiences of adjusting to parenting a deaf child is impacted by the cultural-linguistic model of deafness have been examined, and how challenging the notion of a loss or deficit and instead using a model which promotes a linguistically able and culturally diverse lens [103]. An early intervention programme in the UK involving hearing parents and hearing teachers where families received weekly visits involving Deaf consultants in the role of ‘Deaf friend’ engaged family members in games, discussion and sign language tuition. Two key findings were reported with parent anxiety about the meaning of deafness reported as lessened by a Deaf adult ‘simply being themselves’ [103, p163]. Equally, the relationship between childness and deafness, concerned with the overlap of a child being both a child, and a deaf child, and the importance of accepting the child and their child’s deafness. The cultural-linguistic model of deafness on the adjustment process hearing parents of deaf children experience is a potential tool to support parents through their reactions to their child’s deafness [103].

The discursive context of cultural-linguistic model views and medical models of deafness perspectives is present in hearing mothers’ talk and how they positioned their meanings of the two phenomena [104]. The language of advice from professionals has substantial influence, and positioning theory helps to explain the discrepancies parents experience between reported and actual plans for language practices [104].

An in-depth analysis of a shared-signing Bedouin community [105] highlights how deafness does not easily fall under the medical model because a wider lens is used in communities where many individuals who are hearing sign too, similar to Martha’s Vineyard situations [106]. Evidence is generally about Deaf communities rather than signing communities [106], and how linguistic communities do not just share a language but knowledge of its patterns of use and its cultural distinctions (such as attention getting and name giving) can be key in terms of identity development.

Descriptions of the Deaf Bi-lingual Bi-cultural community (Bi-Bi) helps us to understand this unique identify in an increasingly diverse world, and the relationship between language and identity formation and people’s social participation [107]. Misconceptions about bi- and multilingualism frequently recommend families limit their deaf child to learning oral English only, although multiple languages result in fluid conversational exchanges, trusting parent relationships and a strong cultural identity. Increasing clinicians’ understanding of language and culture, particularly Deaf culture would mean they could more effectively support child development and respond to human diversity issues in healthcare environments [107].

The importance of signed stories and how Deaf teachers’ storytelling in schools is an important part of deaf children’s identity development [108, 109]. Due to the decades of strict oralist policies (from 1880 to 1980) [110], many deaf children do not experience the possibilities of a Deaf identity unless they go to a deaf school due to the lack of employment of Deaf teachers in mainstream education. Signed stories are a way of teaching deaf children about their linguistic and cultural heritage [108]. Rather than conceptualising deaf people as individuals who cannot hear, Deaf people see themselves as viewing the world visually and often use sign language, so deafness is not a loss but a social, cultural, and linguistic identity.

Discussion

The aim of this scoping review was to identify published evidence on the supports and structures surrounding hearing parents with deaf children. The characteristics and results of the included articles were assessed. To the authors’ knowledge this is the first scoping review that focuses on what supports hearing parents as they in turn nurture their growing deaf children. Following a thorough database search and eligibility criteria, 65 papers were included in this scoping review. While it is a large amount of evidence about what supports hearing parents with deaf children, the evidence is mainly based on small, non-repeated studies with few randomised controlled trials published on the efficacy of support for families with deaf children. Current knowledge has therefore been framed as a narrative synthesis of reports of what supports families.

When families with deaf children are introduced to communication choices and strategies, their decisions are strongly influenced by the information they receive [46], but ultimately, they rely on their own judgements, with family characteristics, family strengths and beliefs also considered [47]. Hearing parents are less likely to choose a visual mode of communication, which may be due to hearing programme principles reflecting a predominantly medical model of deafness resulting in more ableist and audist approaches [43], although some parents do go on to ask for alternate services over time as their own knowledge of their child grows. It is reported that there are three phases of decision-making—information exchange, deliberation, and implementation, with two key decisions dominating on implantable devices and communication modality [111].

When discussing communication choices with families, there is a need for professionals to be familiar with and understand the cultural ecology [12, 46] and that parents may make choices without access to information, and that not all choices are available. Culturally incompetent care often spreads health inequalities for Deaf people [28]. Increased awareness of communication choices is vital for parents because families may unknowingly limit knowledge or skill development due to limited awareness of Deaf culture and Deaf communities [52].

Studies that were categorised as providing evidence about interventions and resources that support hearing parents made mention of the value of interventions that focused on language, communication and parent knowledge as well as supporting parent-child relationships. There was a paucity of evidence about nurturing socio-emotional development which is often a poorer outcome for deaf children when compared to hearing children [56]. There was an emphasis that intervention programmes need to be culturally and linguistically appropriate, as this improves caregiver satisfaction [57], and that all interventions with families need to address linguistic, racial and cultural diversity elements.

The provision of Deaf mentors was noted to be a popular feature with families [58–60]. Although there are often few Deaf professionals in services for families to connect with and limited evidence of sustained Deaf mentor programmes available [66]. A supporting parent was also a welcome intervention, which carried less sense of a hierarchical relationship and families reported valuing such input [65].

There is evidence to suggest that intervention and support occurring early result in better language for deaf children at later point [59]. Giving parents guided practice with examples for their individual child’s language level and practice of this skill with a professional was highlighted as useful [61]. Increasing evidence suggests that deaf children having access to a signed language at the earliest possible age is beneficial [22] but it must be noted that Deaf people’s under-achievement in education is not a result of deficits within children themselves but relates to the ‘disabling pedagogy’ to which they are routinely subjected [112].

Whilst many services have moved online during the pandemic, the reported results for parent intervention with deaf children are before Covid-19 occurred, with telepractice groups scoring significantly higher on their total language score and more in the ‘driving seat’ [73] which may be due to parents saying they felt better supported and engaged through this route. As deaf children grow older, and services move to being more child-focused than family-focused there is evidence that families voice feeling less supported with over 30% reporting no intervention by the time children attend school [76].

The reported key components of language and support programmes for parents are that communication strategies, language tuition immersion and language modelling, as well as information and emotional support are all essential [73]. It is not uncommon for support programmes to include family get togethers sporadically, say two to three times per year [74].

The family perspectives and environment theme included reports that 98% of hearing parents wanted counselling on discovering their child was deaf [75]. A priority for parents was finding reliable communication methods, and whilst parents had commonly been offered biomedical options and information, many suggested they wanted a forum to raise concerns and questions [76] and did not want to overly rely on medicalised ideologies [77]. More information was wanted from hearing parents about challenges they might encounter at different life stages for their child [78].

Environments for deaf children need vital consideration due to the potential for abuse of vulnerable groups [79]. However, parent variables are largely responsible for successful child development [84]. One example being parents who were able to communicate through sign language found this significantly lowered their stress as communication with their child was available to them [81].

Families were keen for professionals to value their strengths and resources, and particularly for social events to be arranged with other families with deaf children [84]. Parent stress seems to be more related to context and resources than actual child deafness [86] and knowing what hinders coping would be useful knowledge [87]. Enhancing family environments with education and therapy or therapeutic support is key [89]. Environmental factors for hearing parents with deaf children are vital, which is particularly evident with discussion of the dinner table syndrome with children missing out on many learning opportunities and family relational communication [91]. It is notable that deaf children with Deaf parents frequently outperform deaf children with hearing parents because of their early language encounters and immersion in an inclusive world [95]. The reverse is true for deaf children.

The theme Deaf identity development highlighted the importance of the intersectionality of Deaf identity in relation to other cultural identities [99]. Successful identify development is strongly linked to social capital [100], so rather than being contextualised by the social model, the Deaf culture model of deafness offers a more positive view which may empower both hearing parents as well as their deaf children [102], as this challenges a deficit model and promotes a more linguistically able and culturally diverse lens [12]. Tools that promote acceptance of deafness, adjustment and managing reactions have much scope [103].

The language of diagnosing and medical professionals can have substantial influence, as well as the position that they take [16]. Communities that include hearing signers have much to offer, as the notion of signing communities suggests the benefits and richness of signed languages [106]. It is worth noting that most deaf children are not exposed to the idea of a Deaf identity unless they go to a Deaf school and have exposure to deaf children and Deaf adults on a regular basis. Since the evidence search for this scoping review was undertaken, further publications also support our conclusions. Namely that health care professionals and early intervention providers must inform parents about signed language as a language choice as the majority of parents only learn about such options through their own research [Lieberman]. Also that supporting parents’ development of communicative competence in signed languages has significant implications for meeting their deaf children’s communicative needs [112, 113].

Limitations

A systematic and rigorous approach was adopted when carrying out this scoping review. Evaluating the findings of this scoping review the limitations are discussed in this section. The inclusion criteria were purposively broad at the outset, and due to the high number of retrievals it became clear that focusing on empirical research studies would provide the most valuable evidence. However, whilst some support programmes had been sustained over time, many were short term projects with small samples.

One limitation could be that only articles published in the English language were included in the review, therefore articles in other languages may have been missed in the search. Support systems for hearing parents with deaf children vary greatly. A formal quality appraisal of the included articles was beyond the scope of this review. To decrease the risk of bias the selection of retrieved papers was monitored and viewed independently by two researchers with differences of opinion resolved through discussion. A total of four electronic databases were selected and searched, and despite those covering a range of academic fields their databases may potentially have been excluded. However, at the outset the suggestions of 50 keywords/terms from the steering group helped ensure that a diverse and broad range of material was included. One limitation of this scoping review is that results are presented in a narrative style with limited quantitative analysis of retrieved studies. Whilst sample size and results are available in Table 3, there was a low number of randomised controlled trials on this subject and suggests that the evidence is available about what supports hearing parents with deaf children are not adequately addressed. Despite these limitations this scoping review provides what we believe to be a first overview of existing research on supportive interventions and help for hearing parents with deaf children and serves to highlight the lack of evidence on this important topic.

Conclusion

Overall, the results of this scoping review about supports for hearing parents with deaf children suggest it is important to identify the journey parents and their children navigate from the results of hearing screening or deafness diagnosis, through to the available provision and supports from various services and providers. The results suggest that more research is needed to know what supports hearing parents with deaf children. We propose that further longitudinal studies should test and compare specific interventions and programmes in low-middle income countries and high-income countries. This scoping review highlights a need for improvement in the experience of hearing parents with deaf children as they, along with their deaf children, navigate challenges, information provision and supports required.

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