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Case Study of a 5-Year-Old Boy with Unilateral Hearing Loss

Jan 15, 2015 | Pediatric Care | 0 |

Case Study | Pediatrics | January 2015  Hearing Review 

A reminder of what our tests really say about the auditory system..

By Michael Zagarella, AuD

How many times have I heard— and said myself—that the OAE is not a hearing test? How many times have I thought to myself that, just because a child passes their newborn hearing screening test, it does not mean they have normal hearing? This case brought those two statements front and center.

A 5-year-old boy was referred to me for a hearing test because he did not pass a kindergarten screening test in his right ear. His parents reported that he said “Huh?” frequently, and more recently they noticed him turning his head when spoken to. He had passed his newborn hearing screening, and he had experienced a few ear infections that responded well to antibiotics. The parents mentioned a maternal aunt who is “nearly totally deaf” and wears binaural hearing aids.

Initial Test Results

Otoscopic examination showed a clear ear canal and a normal-appearing tympanic membrane on the right side. The left ear canal contained non-occluding wax.

Tympanograms were within normal limits bilaterally. Unfortunately, otoacoustic emissions (OAE) testing could not be completed because of an equipment malfunction.

Behavioral testing with SRTs was taken, and I typically start with the right ear. The child seemed bright and cooperative enough for routine testing. I obtained no response until 80 dB.

I switched to the left ear and he responded appropriately. This prompted me to walk into the test booth and check the equipment and wires; everything was plugged in and looked normal. I tried SRTs again with the same results, even reversing the earphones. Same results. When the behavioral tests were completed, the results indicated normal hearing in his left ear and a profound hearing loss in his right ear.

The child’s parents were informed of these results, and we scheduled him to return for a retest in order to confirm these findings.

Follow-up Test

One week later, the boy returned for a follow-up test. The otoscopic exam was the same: RE = normal; LE = non-occluding wax.

Tympanograms were within normal limits. I added acoustic reflexes, which were normal in his left ear (80-90 dB), and questionable in his right ear (105-115 dB).

DPOAEs were present in both ears. The right ear was reduced in amplitude compared with the left, but not what I would expect to see with a profound hearing loss (Figure 1).

I repeated the behavioral tests with the same results that I obtained the first time (Figure 2). Bone conduction scores were not obtained at this time because I felt I was reaching the limits of a 5-year-old, and the tympanograms were normal on two occasions.

Recommendation to Parents

After completing the tests, I explained auditory dyssynchrony to the parents, and told them that this is what their son appeared to have. Since they were people with resources, I advised them to make an appointment at Johns Hopkins to have this diagnosis confirmed by ABR.

Johns Hopkins Results

The initial appointment at Johns Hopkins was at the ENT clinic. According to the report from the parents, the physician reviewed my test results and said it was unlikely that they were valid. She suggested they repeat the entire test battery before proceeding with an ABR. All peripheral tests were repeated with exactly the same results that I had obtained. The ABR was scheduled and performed, yielding:

“Findings are consistent with normal hearing sensitivity in the left ear and a neural hearing loss in the right ear consistent with auditory dyssynchrony (auditory neuropathy). The normal hearing in the left ear is adequate for speech and language development at this time.”

Additional Follow-up

The boy’s mother was not completely satisfied with the diagnosis or explanation. After she arrived home and mulled things over, she called Johns Hopkins and asked if they could do an MRI. The ENT assured her that it probably would not show anything, but if it would allay her concerns (and since they had good insurance coverage), they would schedule the MRI.

Further reading: Vestibular Assessment in Infant Cochlear Implant Candidates

Figure 1. DPOAEs of 5-year-old boy.

Findings of MRI. Evaluation of the right inner ear structures demonstrated absence of the right cochlear nerve. The vestibular nerve is present but is small in caliber. The internal auditory canal is somewhat small in diameter. There is atresia versus severe stenosis of the cochlear nerve canal. The right modiolus is thickened. The cochlea has the normal amount of turns, and the vestibule semicircular canals appear normal.

The left inner ear structures, cranial nerves VII and VIII complex, and internal auditory canal are normal. Additional normal findings were also presented regarding sinuses, etc.

Key finding: The results were consistent with atresia versus severe stenosis of the right cochlear nerve canal and cochlear nerve and deficiency described above.

The Value of Relearning in Everyday Clinical Practice

Figure 2. Follow-up behavioral test of 5-year-old boy.

According to the MRI, the cochlea on the right side is normal—which would explain the present DPOAE results. The cochlear branch of the VIIIth Cranial Nerve is completely absent, which would explain the absent ABR result and the profound hearing loss by behavioral testing.

This case has certainly caused me to re-evaluate what I think and say about my test findings. How many times have I heard—and said myself!—that the OAE is not a hearing test? How many times have I thought to myself that, just because a child passes their newborn hear- ing screening test, it does not mean that they have normal hearing?

This case has surely brought those two statements front and center. In addition, what about auditory neuropathy? In about 40 years of testing, I had never seen a case that I was convinced was AN. Naturally, I was somewhat skeptical about this disorder: Is it real, or does it reside in the realm of the Yeti. (Personal note to Dr Chuck Berlin: I truly don’t doubt you, but I do like to see things for myself!)

Finally, this case only reinforces my trust in “mother’s intuition” and the value of deferring to the sensible requests of parents. If she had not felt uneasy about what she had been told at one of the most prestigious clinics in the country, the actual source of this problem would not have been discovered.

So what? Does any of this really make a difference? The bottom line is we have a 5-year-old boy with a unilateral profound hearing loss. How important is it that we know why he has that loss? From a purely clinical standpoint, I think that it is poignant because it brings home the importance of understanding what our tests really say about the hearing mechanism and auditory system (ie, is working or not working?).

And although it may not make a large difference in the boy’s current treatment plan, I do know that the boy’s mother is grateful for understanding the reason for her son’s hearing loss and that it’s at least possible the boy may benefit from this knowledge in the future.

Michael Zagarella, AuD, is an audiologist at RESA 8 Audiology Clinic in Martinsburg, WVa.

Correspondence can be addressed to HR or or Dr Zagarella at:  [email protected]

Citation for this article: Zagarella M. Case study of a 5-year-old boy with unilateral hearing loss. Hearing Review . 2015;22(1):30-33.

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Case Study: Team Helps Child with Hearing Loss Develop Language Skills

Work Setting: Schools Work Setting: Health Care

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An interprofessional practice (IPP) team worked together to assess hearing loss and language skills in a 2-year-old child. The team recommended a cochlear implant and a plan of therapy for language development and listening skills. As a result, the child’s expressive vocabulary began showing steady growth.

Two-year-old Danny was recently identified with bilateral, severe-to-profound sensorineural hearing loss as a result of cytomegalovirus (CMV). Records indicate that Danny passed his newborn hearing screening in the left ear but not in the right ear. Danny’s family reported that they were unaware of his hearing loss, so they did not follow up after the newborn hearing screening.

At the time that the IPP team was assembled, Danny communicated his needs and wants by pointing and vocalizing. Family members reported that he was using some single Spanish words to communicate. Danny’s family spoke Spanish at home and used a Spanish language interpreter in educational and health care settings. His parents were concerned about Danny’s ability to eat independently and his aversion to particular textures.

Danny had recently been fit for hearing aids and showed increased awareness to sound. He had an appointment with an otologist to assess candidacy for a cochlear implant (CI).

Meet the Team

Danny’s case involved two speech-language pathologists (SLPs). One is part of a local early intervention program, and the other serves on a CI team. Team members included:

How They Collaborated

Each member of the IPP team met with Danny to assess his hearing and language skills. Afterwards, the team met to share their findings.

The audiologist evaluated Danny’s hearing and reported that his hearing aid check and fit were unremarkable. The ENT/otologist deemed that Danny was a good candidate for a CI and referred the family to a CI center for further evaluation. Danny’s family expressed concern about missing work for frequent appointments as well as travel to and from the appointments.

The SLP conducted a speech, language, and auditory skill assessment, which showed that Danny had severe language delays. Danny’s vocabulary was moderately delayed, but his social communication was normal. During the assessment, via an interpreter, Danny’s parents reported that they were unable to understand most of what Danny said. Most of their communication was through pointing and gestures. They also reported that Danny loved playing with cars and trucks and imitated two- and three-step sequences from home routines.

The OT evaluated Danny’s sensory skills and found that Danny’s aversions to foods and textures were typical for his age. His family was counseled to continue Danny’s exposure to new foods and reevaluate at transition to preschool.

During the CI candidacy timeframe, Danny’s family traveled to the CI center to meet with the hospital-based SLP once a month. Also, the local SLP saw Danny and his family once a week to work on the language and listening goals outlined by the IPP team. In addition, the local SLP connected Danny’s family with other Spanish-speaking families who also have children who are deaf and/or hard of hearing (DHH). The IPP team stressed that Danny needed to use his hearing aids full time and monitor how the hearing technology works in different environments (i.e., home, noisy situations, clinic, car).

After reviewing the evaluation results, the IPP team recommended that Danny receive a CI. After the implant’s activation, Danny continued to receive therapy for language development and listening skills. The team emphasized that Danny’s family needed to expose him to verbal language as he learned to use his CI.

The local SLP shared data with the team about Danny’s development after receiving the implant. This data showed Danny’s expressive vocabulary had grown steadily, and he had begun to communicate using two- and three-word utterances.

Ongoing Collaboration

The IPP team planned monthly calls with team members and Danny’s family to coordinate ongoing care. During these calls, the team and the family will continue to share what is working and what needs adjustment with Danny’s CI.

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The Impact of Childhood Hearing Loss on the Family: Mothers’ and Fathers’ Stress and Coping Resources

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Anat Zaidman-Zait, Tova Most, Ricardo Tarrasch, Eliana Haddad-eid, Devora Brand, The Impact of Childhood Hearing Loss on the Family: Mothers’ and Fathers’ Stress and Coping Resources, The Journal of Deaf Studies and Deaf Education , Volume 21, Issue 1, January 2016, Pages 23–33, https://doi.org/10.1093/deafed/env038

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Parenting children who are deaf or hard of hearing (D/HH) presents unique long-term challenges that can place the parents at a greater risk for elevated levels of parenting stress. Adaptation of families to the various challenges presented by childhood hearing loss is influenced by their personal and social coping resources available for managing these stressors and challenges. The current study examined differences in parenting stress and personal (i.e., acceptance of the child who is D/HH and parents’ sense of parenting self-efficacy) and social (i.e., formal and informal social support) coping resources between mothers and fathers of children who are D/HH in the Arab sector in Israel. Further, the study examined the relations between coping resources and parenting stress among these parents. Participants included 30 Israeli Arab mother–father couples ( n = 60) having a child who is D/HH aged 3–8 years. Findings revealed no significant differences between mothers and fathers regarding parenting stress, child acceptance, or parental support systems. However, mothers reported significantly higher self-efficacy. In addition, correlation analysis indicated that higher coping resources decreased parenting stress levels. Theoretical and practical implications of parental gender in the context of cultural background are discussed regarding parent intervention programs.

A child’s hearing loss (HL) affects the child, as well as his or her family ( Jackson & Turnbull, 2004 ). Parenting children who are deaf or hard of hearing (D/HH) presents unique long-term challenges that can place them at a greater risk for elevated levels of parenting stress (e.g., Lederberg & Golbach, 2002 ; Quittner et al., 2010 ; Zaidman-Zait, 2008 ). Parenting stress can be defined as an aversive psychological reaction to the demands of being a parent ( Deater-Deckard, 1998 ) and has been identified as one of the most common daily concerns faced by parents ( Chang & Fine, 2007 ). This specific type of stress arises when parents’ perceptions of the demands of parenting outstrip their resources ( Abidin, 1992 ; Deater-Deckard, 1998 ). Hence, when examining parenting stress among parents of children who are D/HH, it is important to consider the context-specific stressors and challenges embedded in the actual tasks and demands of parenting a D/HH child ( Quittner & DiGirolamo, 1998 ; Quittner et al., 2010 ). Condition-related stressors often constitute a significant portion of the total stress experienced by parents ( Streisand & Tercyak, 2004 ). Coincidently, previous studies consistently indicate that hearing parents of children who are D/HH report increased context-specific stress in comparison to parents of children with normal hearing ( Quittner et al., 2010 ).

The consideration of parenting stress is important, as it affects both parents and children in several ways. These include increased risk for poor parent mental health outcomes ( Hastings, 2003 ), negative caregiving behaviors ( Osborne & Reed, 2010 ), and potential difficulties in implementing behavioral interventions to help their children ( Kazdin, 1995 ). In terms of the child, parenting stress might increase the risk for reduced language development and behavior outcomes ( Quittner et al., 2010 ; Sarant & Garrard, 2014 ).

Most research on parenting stress has been focused on mothers as the primary caretaker. Research investigating stress among mothers of D/HH children may not be generalizable to fathers, considering the larger role mothers play in daily care for their children and common differences between mothers’ and fathers’ household and parenting roles. Among parents of children with disabilities, comparisons between mothers and fathers in their ratings of parenting stress have yielded mixed results. Some studies report comparable levels of stress among both mothers and fathers ( Davis & Carter, 2008 ; Hastings et al. 2005 ). However, in other samples higher stress levels have been reported among mothers ( Beckman, 1991 ; Sharpley, Bitsika, & Efremidis, 1997 ). Turning specifically to parents of children who are D/HH, one study that compared fathers’ and mothers’ general parenting stress did not find differences ( Meadow-Orlans, 1994 ). To our knowledge, no other studies compared parenting stress among mothers and fathers of children who are D/HH.

Interest in the different impact of childhood disability on both fathers and mothers stems from family system theory. According to this theory, families are viewed as social systems ( Parke & Buriel, 1998 ) where each individual or subsystem in the family is influenced by the others ( Steinglass, 1987 ). However, studies that examined mothers and fathers considered them as a single parental unit (e.g., Sach & Whynes, 2005 ) ignoring the interdependence of data within families. Consequently, when viewing the impact of having a child who is D/HH from a system perspective, maternal reactions should be examined in tandem with reactions by another caregiver, such as the father. For instance, one parent’s acceptance of the child also depends on whether the other parent shows a similar or dissimilar reaction. Given that the definition of the role of the father within a family has shifted ( McBride et al., 2005 ), the exciting evidence that many fathers are substantially involved in caring for their children ( Bouchard, Lee, Asgary & Pelletier, 2007 ; Pleck & Masciadrelli, 2004 ), and in line with the increasing attention being paid to the significant fathers’ role in children’s development ( Parke, 2004 ), contemporary research should address each of the parents’ roles and needs in order to facilitate the provision of appropriate supports.

Stress experienced by mothers and fathers depends on multiple factors and can be influenced by different personal and social coping resources available for managing these stressors and challenges ( McCubbin & Patterson, 1983 ). Apart from examining similarities or differences in mothers’ and fathers’ stress, it is also important to examine differences in their coping resources and to explore whether similar resources determine their adjustment. According to Lazarus and Folkman’s (1984) transactional model of stress and coping, stress is defined as individuals’ cognitive evaluation of stressors associated with an event or an ongoing situation and individuals’ appraisals of specific personal and social resources affecting their coping ability. In their coping efforts, individuals draw upon social and personal resources ( Pearline & Schooler, 1978 ). Personal, resources include parents’ psychological characteristics and strengths (e.g., self-efficacy) that promote effective coping. Social, external resources include the formal and informal sources of support that parents receive from their social network (e.g., friends, professionals, and other parents). Resources presumably contribute to individual differences in stress-related experiences, coping efforts, and outcomes ( Holahan, Moos, Holahan, & Brennen, 1997 ; Ptacek, Pierce, & Ptacek, 2002 ). The adaptation of families to challenging events, such as childhood HL, is influenced by the resources available to manage the stressor and by how family members define or appraise the stressor event ( McCubbin & Patterson, 1983 ). Confidingly, early intervention programs should use a resource-based approach to map out the assets available to families in order to support their needs and their adjustment ( Dunst, 2000 ). A family that is able to accept their child’s disability, adjust to it and support the child’s needs, may contribute substantially to that child’s well-being and social, emotional, and language development ( Calderon, 2000 ; Cole & Flexer, 2007 ; Desjardin, 2009 ; DesJardin & Eisenberg, 2007 ). Previous studies that examined mothers and fathers indicated that they cope differently with having a child who has a disability ( Gray, 2003 ). In addition, there is some evidence, from studies of children with disabilities, that the influence of coping resources on the experience of stress is different among mothers and fathers ( Davis & Carter, 2008 ).

Among the personal and social resources that were previously reported as affecting parents stress and coping are child’s acceptance, self-efficacy, and social support. Parents’ acceptance of their child is a psychological variable reflecting parents’ positive appraisals that serve as an internal personal resource. Acceptance is the ability to take what is offered without trying to avoid experiences ( Blackledge & Hayes, 2001 ). Parenting a child who is D/HH can be a positive experience that leads to positive familial outcomes, such as new insights into family priorities, adopting positive meaning of the child’s HL, becoming closer as a family, and gaining a renewed sense of purpose. At the same time, it is unlikely that a child’s HL can be completely ameliorated. Thus, in the process of adjusting to having a child who is D/HH, parents might benefit from reaching a state where they can accept their children as they are, as well as the associated difficulties when parenting a child who is D/HH. It has been suggested that acceptance of the child and his or her disability is a positive ‘stage’ of family adjustment ( Blacher, 1984 ). To our knowledge, no previous research examined the differences in acceptance among mothers and fathers of children who are D/HH or who have other disabilities.

Acceptance might also explain some of the variance in parenting stress. In a recent study, positive correlations were found between acceptance and parenting stress among both mothers and fathers of children with Autism ( Jones, Hastings, Totsika, Keane, & Rhule, 2014 ). Furthermore, interventions that have focused in some way on increasing parents’ acceptance supported its positive contribution in reducing psychological distress among parents of individuals with disabilities (e.g., Blackledge & Hayes, 2006 ; Noone & Hastings, 2009 , 2010 ).

Parenting self-efficacy refers to parents’ beliefs about their ability to function competently while raising their children ( Coleman & Karraker, 2003 ; Jones & Prinz, 2005 ). Self-efficacy has been considered an additional important internal resource ( Jerusalem, 1993 ). However, it has not received much attention as a possible coping resource for parents of children who are D/HH. There is limited research that has examined self-efficacy in parents of children who are D/HH and has found it to be a helpful resource ( DesJardin & Eisenberg, 2007 ).

Previous studies of normative populations reported that fathers and mothers differ regarding parenting self-efficacy. Generally, mothers report higher parenting self-efficacy than fathers ( Bouchard et al., 2007 ; Hudson, Elek, & Fleck, 2001 ). Self-efficacy research among parents of children who are D/HH has focused solely on mothers ( DesJardin & Eisenberg, 2007 ).

In the general parenting literature, parenting self-efficacy has been identified as a key construct in terms of its relationship to various outcomes, including parenting behaviors and parenting stress (for a review see Coleman & Karraker, 1998 ; Kwok & Wong, 2000 ). Specifically, increase in parental self-efficacy has been associated with decreased stress (e.g., Grus et al., 2001 ; Kwok & Wong, 2000 ; Hastings & Brown, 2002 ).

Most researchers addressing self-efficacy have operationalized it in terms of feelings of general competence in their parenting role. A crucial point is that self-efficacy is something that is domain specific ( Bandura, 2006 ); hence, it is likely to vary for different behaviors in different contexts. In the case of parents of D/HH children, general self-efficacy refers to the belief about one’s ability to function competently as a parent in the context of participation in early intervention. Specific self-efficacy refers to a parent’s ability to manage the challenges associated with childhood HL, such as taking care of sensory aids or supporting the development of the child’s language. Mothers’ higher self-efficacy with regards to supporting their child’s speech and language development was found to enhance the child’s language learning ( Desjardin, 2003 ; DesJardin & Eisenberg, 2007 ). Thus, it is important to incorporate both general parenting self-efficacy and self-efficacy related to the context of parenting a child who is D/HH.

One of the most-cited social coping resources is parents’ social support systems. Social support serves as a protective function by buffering the effects of stressful situations and also by facilitating coping ( Cobb, 1976 ; Stewart, 1993 ). It also has been identified as a beneficial coping resource that people may draw upon regardless of the presence of a stressor ( Cohen, Gottlieb, & Underwood, 2001 ; Williams, Barclay, & Schmied, 2004 ). Ecological models of parenting also accentuated that the mothers’ care of their children is affected by the supports they received from their environment ( Belsky, 1984 ).

Social support systems can include both formal and informal sources of support. Formal support refers to the network of support that stem primarily from service delivery and professional sources in institutions, such as intervention centers, schools, or social services, whereas informal social support reflects relationships with relatives, friends, and neighbors in one’s home or community ( Rodrigo, Martín, Máiquez, & Rodríguez, 2007 ). A recent meta-synthesis on social support among parents of children who are D/HH ( Poon & Zaidman-Zait, 2014 ) indicates that the few studies that have examined sources of social support did not differentiate between formal and informal sources of support, thus limiting knowledge about their possible influences.

Previous findings highlighted differences between fathers and mothers. Specifically, fathers’ support systems were found to be less effective than mothers’ in terms of improving parents’ feelings of competence and minimizing their feelings of pressure ( Levy-Shiff, 1999 ). In view of these earlier findings on mothers’ and fathers’ differences regarding support systems, the current study aimed to evaluate which and how support systems, both formal and informal, are perceived by both the fathers and the mothers of children who are D/HH.

Wide research supports the notion that social support contributes to families’ abilities to cope with challenges and stressors ( Dunst & Trivette, 1996 ). Studies indicated that strong social support systems contributed to parents’ adjustment and their well-being ( Asberg, Vogel, & Bowers, 2008 ; Hintermair, 2006 ; Zaidman-Zait, 2007 ). Higher levels of social support were associated with lower levels of parental stress and higher levels of life satisfaction ( Asberg et al., 2008 ; Hintermair, 2004 , 2006 ; Lederberg & Golbach, 2002 ; Pipp-Siegel, Sedey, & Yoshinaga-Itano, 2002 ). Consistent involvement from family and friends in providing informational, tangible, and emotional support has been found to facilitate parents’ coping with parenting their child who is D/HH ( Zaidman-Zait, 2007 ).

Cultural variables have also been pinpointed as impacting the experience of parents in raising their child who has a disability ( Abu-Habib, 1997 ; Leyser, 1994 ). However, most of the research examined families of children who are D/HH in the Western world. Yet, the current study variables—perceived stress and coping resources—may be susceptible to sociocultural influences that could affect parental adjustment and children’s rehabilitation. Within Israel’s multicultural society, the Arab sector comprises 20% of the general population ( Israel Central Bureau of Statistics, 2008 ) and comprises 30% of individuals who are D/HH between the ages of 3 and 21 years, who attend various educational settings ( Most, 2006 ). These high rates among Israeli Arabs call for careful empirical scrutiny in order to design optimal assessments and interventions for these children and their families, with a focus on their possibly unique sociocultural needs.

Against the backdrop of Israel’s multicultural society, the Arab sector is unique with respect to their family traditions, values, attitudes, and norms ( Cohen & Kirchmeyer, 2005 ). With regard to parents’ gender roles, Israeli Arab men’s participation in the workforce is similar to that of the Jewish population, but Arab women’s participation is significantly lower (15% vs. 53% of Jewish women). In line with the continued expectation for Arab women to fulfill traditional housekeeping and childcare roles, research has shown that the care of a child with disabilities is considered to be solely the mother’s responsibility ( Crabtree, 2007 ; Duvdevany & Abboud, 2003 ). Crabtree (2007) reported that Arab mothers seem to cope better than fathers with a child with a disability, whereas fathers reported feelings of shame to the point where they did not want to be seen in public with their child. In addition, fathers are not expected to be involved in the care of a child with a disability, although fathers do make the decisions about important matters like medical treatment and education ( Abu-Habib, 1997 ). To the best of our knowledge, there is no existing research examining the perceptions and experiences of parents from the Arab’s sector in Israel. In light of the paucity of this research, empirical scrutiny is imperative to enhance policy makers’ and other professionals’ understanding of possibly unique experiences that Israeli Arab mothers and fathers may undergo.

In summary, knowledge regarding mothers and fathers stress and coping resources would help in promoting family–professional relationship and advancing the effectiveness of the child’s intervention. According to the family needs framework for early intervention ( Darling & Gallagher, 2004 ), services should be attentive to the diversity of families and the specific needs of all family members.

The purposes of the current study were twofold: (a) to determine whether mothers and fathers from the Arab sector in Israel report similar or different levels of parenting stress and internal and social coping resources; (b) to examine the relations between maternal and parental internal and social coping resources and their parenting stress levels. We believe that the current study will provide valuable information for planning and implementing interventions that are sensitive to both the father’s and the mother’s needs and the culture to which the family belongs.

Participants

Participants were 30 Arab married couples (father–mother pairs), each with at least one child who is D/HH, from all around Israel. All the parents communicated in spoken Arabic at home with their children. All but two couples were Muslim: one was Christian and one was Druze. All 30 mothers and 27 (90%) of the fathers had normal hearing; three fathers had HL. Parents and their children’s characteristics are described in Table 1 .

Parents’ and children’s characteristics

Note . D/HH = deaf or hard of hearing; M = mean; SD = standard deviation.

Questionnaires

Mothers completed a demographic survey, which collected information about each parent (e.g., age, gender, education) and about the D/HH child (e.g., gender, degree of HL, main communication mode). To assess parenting perceived stress, parental acceptance, parenting self-efficacy (general self-efficacy and self-efficacy specific to child’s HL), and parents’ perceived social support (both formal and informal), mothers and fathers separately completed self-report questionnaires. Table 2 presents a description of these questionnaires.

Description of parents’ self-report questionnaires

Note . D/HH = deaf or hard of hearing.

To create an accurate Arabic translation of the Hebrew-language questionnaire set, all questionnaires underwent a back-and-forth translation process from Hebrew to Arabic and back to Hebrew for the purpose of this study. Two bilingual speakers of Hebrew and Arabic each separately translated the questionnaires from Hebrew to Arabic. Next, they met to compare versions and discuss differences until reaching consensus. This version was translated back from Arabic to Hebrew by another bilingual Hebrew and Arabic speaker.

After receiving approval for the study by the Israeli Ministry of Education Head Scientist Ethics Boards and after obtaining participants’ consent, parents were recruited through rehabilitation centers and schools throughout the country that children who are D/HH attended. The questionnaires were distributed to the parents by professionals working with them (teachers, speech and language therapists). Parents were instructed that the study aimed to improve the services they receive and that their participation was voluntary and anonymous. The parents who had more than one child who is D/HH were instructed that only the child within the ages of 3–8 years was the targeted focus of their questionnaire responses. The parents completed the questionnaires in their own free time and returned them in a sealed envelope to their professional contact in the center/school, who then submitted them to the researchers. Out of the 111 questionnaires that were distributed, 47 were returned (42.34% response rate). Out of these 47 questionnaires, 30 (27.02%) were completed by both parents, and these 30 comprised the database for the current study in order to investigate differences between mothers and fathers in line with the study objectives. The remaining 17 questionnaires were excluded from the current analyses because 11 were completed only by the mother and 6 were missing significant data.

Data Analysis

To account for the interdependence of data within families while examining differences between fathers and mothers regarding their perceived stress and coping resources, a series of mixed-model repeated-measures analyses of variance (ANOVAs) were conducted. Mixed-model repeated-measures ANOVAs were conducted separately for each of the dependent variables. In each of the models, the parent’s gender (father, mother) was used as the repeated-measures variable. To protect the error rate for these multiple analyses, a Bonferroni correction was applied, adjusting the value of alpha to 0.01, based on our five ANOVAs. In order to assess the possible effect of parents’ education on dependent variables, we calculated Pearson correlations between all dependent variables and both mothers’ and fathers’ education levels. None of the correlations was significant. Hence, parents’ education levels were not included in our models.

Table 3 presents mothers’ and fathers’ mean scores and standard deviations for the study variables including parental perceived stress, parental child’s acceptance, parental self-efficacy (general and specific to HL), and support systems (informal and formal). As can be seen in Table 3 , in general, a moderately negative impact of the child who is D/HH on parenting stress was reported (mothers 1.78, fathers 2.15, out of a range of 1–4); the mean score for self-reported acceptance of the child who is D/HH was high (mothers 4.2, fathers 4.3 out of a range of 1–5). In addition, overall, the mean score for self-reported general and specific parenting self-efficacy scales were in the higher range (between 4 and 5 out of a range of 1–7). Finally, the mean score for perceived formal parental support was high (3.09), whereas the mean score for informal parental support was low (1.92 out of a range of 0–5).

Mothers’ and fathers’ mean scores and standard deviations for parental stress, self-efficacy general, self-efficacy HL, and support systems

Note. M = mean; SD = standard deviation.

The mixed-model repeated-measures ANOVAs revealed no significant main effect of parent’s gender on parent’s perceived stress, F (1, 29) = 0.6, p > .05, partial η 2 = .02, or on the first parental coping resource examined, parental acceptance F (1, 29) = .01, p > .05, partial η 2 = .00.

The second parental coping resource examined was parenting self-efficacy including general self-efficacy and specific self-efficacy with regards to the HL of the child. In terms of general self-efficacy, the analysis revealed a significant main effect of parent’s gender, F (1, 29) = 4.90, p < .001, partial η 2 =.15; fathers’ 95% confidence interval (CI) [4.55, 4.99], mothers 95% CI [4.75, 5.21], indicating that mothers’ general self-efficacy was higher than that of fathers. Similarly, mothers reported higher specific self-efficacy to HL than fathers (i.e., in both efficacy regarding sensory aids and efficacy regarding language development), F (1,29) = 12.80, p = .001, partial η 2 = .31; fathers 95%CI [3.93, 5.20], mothers 95% CI [5.17, 5.93]. No significant main effects emerged for type of self-efficacy or for two-way interactions (all p s > .05).

The third coping resource examined was perceived social support (including formal and informal). The analysis revealed a significant main effect for type of support, F (1,29) = 105.92, p < .001, partial η 2 =.78, informal social support 95% CI [1.54,2.13], formal social support 95% CI [2.77,3.46], indicating that parents perceived higher levels of formal than informal support. No significant main effect was obtained for parent’s gender or no significant two-way interactions were found, p >.05.

Next, we examined the associations between coping resources and perceived stress separately for mothers and fathers. Correlations among these measures are reported in Table 4 . As can be seen, acceptance and general self-efficacy were significantly negatively correlated with stress among both mothers and fathers, with higher acceptance and higher sense of general self-efficacy associated with lower stress levels. Interestingly, specific self-efficacy with regards to HL was not associated with parents’ stress levels. Among mothers, formal social support was also significantly correlated with stress, with higher formal support associated with lower stress.

Correlations between parenting stress and coping resources among mothers and fathers

*p < .05; **p < .001.

Last, we explored the effect of child’s characteristics, including child’s age, gender, degree of HL, type of sensory aid, and educational inclusion setting on mothers’ and fathers’ study variables. Only child’s age significantly negatively correlated with mothers’ and fathers’ specific self-efficacy regarding child’s sensory aids ( r = −.44* and r = −.40*, respectively, p < .05) and general self-efficacy ( r = −.37*, p < .05, and r = −.35*, respectively, p = .05). In addition, both mothers and fathers of girls reported higher perceived informal social support [ t (19.16) = −2.31 and t (28) = −2.99, respectively, p < .05] and only fathers of girls reported higher perceived formal support [ t (22.93) = −2.92, p < .05].

The present research aimed to examine whether mothers and fathers report similar or different levels of parenting stress and internal and social coping resources. The results of the study add to the paucity of research examining differences between mothers and fathers of children with disabilities in general and of children who are D/HH in particular. The results showed that both parents reported similar, moderate levels of parenting stress. The comparable level of parenting stress among mothers and fathers is consistent with number of studies examining parenting stress in the context of parenting children with disabilities ( Davis & Carter, 2008 ; Hastings et al. 2005 ), as well as one study of parents of children who are D/HH ( Meadow-Orlans, 1994 ). The current findings might support the ‘spillover’ process ( Erel & Burman, 1995 ), where the experience of stress of one partner in the relationship (i.e., mother) transfers directly to the other person (i.e., father). It is suggested that these interpersonal processes within the family should be further examined in future studies.

The lack of differences between mothers and fathers regarding level of stress might stem from the quantitative nature of the current findings, which could not account for differing sources of stress. In the present study, as typical in Arab society, the majority of the mothers (73.3%) did not work and were considered primary caregivers, whereas most of the fathers (90%) did work and were considered breadwinners for the family. The extra burden of taking care of a child who is D/HH for the mother and the extra work for the father needed to cover the child’s heavy expenses may well be a salient contributor toward parental stress. Future research is needed to explore the contribution of various sources of stress, such as distribution of responsibilities among both mothers and fathers. Additional research is needed to understand the extent to which discrepancy across studies regarding differences in stress between mothers and fathers related to differences in sample characteristics, measures used, or analytic strategy.

In terms of parents’ personal coping resources, findings indicated both similarities and differences between mothers and fathers. The findings indicated no significant differences with regard to their internal coping resource of acceptance of their child who is D/HH. The similar and high acceptance levels by both parents might be explained by the parents’ Muslim background. Islamic principles forbid discrimination of individuals with disabilities and require compulsory support and encouragement for people who need help ( Gaad, 2001 ). Future researchers may wish to examine the level of Islamic religious observance as linked to parental acceptance of the child who is D/HH.

At the same time, differences were found between mothers and fathers sense of self-efficacy. Specifically, mothers’ reported higher levels of parenting self-efficacy than fathers. One plausible explanation is mothers’ prominent involvement in the daily care of their children. Mothers’ frequent interactions with their children and participation in their intervention program might increase their sense of self-efficacy in general and self-efficacy as related to specific tasks in treating their children who are D/HH. This finding substantiated previous research on parents of typically developing children (e.g., Bouchard et al., 2007 ; Hudson et al., 2001 ).

Regarding social coping resources, although mothers and fathers reported similar social support levels, both mothers and fathers reported the availability of greater formal than informal support. This finding did not substantiate prior research on the general Arab population that highlighted informal social supports as the main source of well-being at times of stress ( Abudabbeh, 1996 ) and among mothers of children with mental disability in the Arab sector in Israel ( Duvdevany & Abboud, 2003 ). These conflicting findings may be related to the pronounced need of parents of children who are D/HH to obtain considerable amount of specialized professional information and guidance about the child’s HL, its effect on development, the rehabilitation process, and sensory aids. In particular, parents of D/HH children often need to make early medical and rehabilitative decisions, which require close consultation and support from specialized professionals. Not surprising, in line with this particular need for professional assistance to manage the child’s HL, Lederberg and Golbach (2002) found as well that mothers of D/HH children receive more formal support from professionals, whereas mothers of children with normal hearing receive more informal support from relatives and friends. In future studies, it is also important to consider separately the various functions of social support (e.g., financial, tangible, emotional) parents received from both informal and formal sources ( Poon & Zaidman-Zait, 2014 ). It might be that differences between formal and informal support systems are determined by the specific support function that is provided. For example, parents perceived higher emotional support from informal sources while getting more informational support from formal sources.

An additional purpose of the current study was to examine the relations between maternal and parental internal and social coping resources and their parenting stress levels. Similar to previous findings, the patterns of associations between coping resources and perceived stress among fathers and mothers indicated both similarities and differences ( Davis & Carter, 2008 ; Hastings et al., 2005 ; Jones, Totsika, Hastings, & Petalas, 2013 ). Specifically, among both mothers and fathers higher levels of personal coping resources, including child acceptance and general parenting self- efficacy, were associated with lower levels of parenting stress. Our findings regarding the contribution of self-efficacy to lower levels of parenting stress are consistent with previous studies (e.g., Grus et al., 2001 ; Hastings & Brown, 2002 ; Kwok & Wong, 2000 ). This in turn emphasizes the importance of targeting self-efficacy of both mothers and fathers in intervention programs for children who are D/HH and their families. This coincided with the principles of family-centered care, which make explicit reference to the importance of including the child’s family in the intervention program aiming to enhance both child and parent outcomes ( Dunst, 2000 ). An encouraging finding for professionals working with families is that through a one-day workshop, parents of children with autism reported increased self-efficacy compared with control groups ( Sofronoff & Farbotko 2002 ). Thus, it is possible to intervene and increase parenting self-efficacy and even decrease parenting stress. A second personal coping resource that was associated with parenting stress among both mothers and fathers is child’s acceptance. This relation was also found among mothers and fathers of children with autism ( Jones et al., 2014 ). It might be that participating in an intervention program specialized in children who are D/HH helped parents in the process of adjustment and acceptance of their children. In addition, the fact that relatively long duration passed since the children’s HL diagnosis meant that parents achieved resolution with the child’s HL. According to Pianta, Marvin, Britner and Borowitz (1996) , parents who have reached resolution with respect to the diagnosis of their child usually express positive changes in their feelings in response to the diagnosis over time.

At the same time, social coping resources were associated with lower parenting stress levels only among mothers. This finding is similar to previous studies on mothers of children who are D/HH (e.g., Asberg et al., 2008 ; Lederberg & Golbach, 2002 ), where social support was related to parents’ appraisal of stress. The lack of similar association among fathers might be explained by the notion that only specific functions, sources, and dimensions of social support are associated with lower levels of parenting stress ( Asberg et al., 2008 ; Guralnick, Hammond, Neville & Connor, 2008 ; Lederberg & Golbach, 2002 ). For example, the only social support dimension that predicted parenting related stress among mothers of children with developmental delay was parenting support (i.e., amount of and satisfaction with support specific to advice about problems with their child with a developmental delay) and not general support ( Guralnick et al., 2008 ). Hence, fathers might find different dimensions of support to be meaningful.

In the current study, two child characteristics were associated with parents coping resources. The first one was the child’s age. Findings indicated that as children grew older, parenting self-efficacy regarding child’s sensory aids and general self-efficacy decrease. Perhaps, as a result of the possible increased gap in skills between the child and his/her hearing peers, parents feel less competent and influential. For example, a gap in the area of spoken language can become a great burden on parents and may have an increasing impact on parenting self-efficacy. One may speculate that the case of the Arabic language may present particular challenges for children who are D/HH. As typical for diglossic communities, Israeli Arabs are using spoken Arabic for everyday informal oral speech, whereas standard Arabic is reserved for reading, writing, and formal language use, even among young children ( Ibrahim & Aharon-Peretz, 2005 ). In diglossic Arabic, children naturally acquire the spoken vernacular through informal exposure in their immediate environment, whereas standard Arabic is primarily acquired formally in the school context ( Ayari, 1996 ). Thus, in Arab society, entry to school may exacerbate language issues for both the D/HH child and the parents. In all, parenting self-efficacy in the Arab sector in Israel should receive more empirical attention to identify its antecedents and outcomes among mothers and fathers. An additional explanation might be related to the transition from early intervention, which is a largely child-centered education system, into the school system, where the focus on the family is largely absent ( Jamieson, Zaidman-Zait, & Poon, 2011 ). Moving to the child-centered education system might reduce the amount of guidance and support provided to families, which in turn can hinder parents’ sense of self-efficacy.

The second child characteristic that influenced parents coping resource was the child’s gender. Specifically, differences were found in social support for parents of girls versus parents of boys. Parents of girls who are D/HH reported more support than parents of boys. These findings may be a result of the tendency in Arab culture to perceive females with disabilities as more inferior than males with disabilities ( Abu-Habib, 1997 ), thereby requiring more support.

In summary, the present research revealed significant differences between Arab mothers and fathers of children who are D/HH, in the areas of parenting self-efficacy and in the social coping resources that are associated with their parenting stress levels. Both parenting stress and self-efficacy are essential factors for families and children’s well-being and healthy development. Future research should further explore this topic with a larger sample while taking into account other variables such as a different religion background. In addition, future research should explore the impact of mothers’ and fathers’ stress and coping resources on their children’s language development and well-being. It should be noted that the present research was conducted with Israeli Arabs who might have different characteristics as a culture group than Arabs in other countries. Findings highlighted the importance of measuring the perspectives of both fathers and mothers, emphasizing the dynamic and interdependent nature of the family unit. Furthermore, current results indicated the need to distinguish various sources and functions of social support in examining family’s needs. In order to improve services for the child and the family and enhance the child’s rehabilitation outcomes, when designing intervention programs for children who are D/HH, it is important to consider differences between mothers and fathers and to relate them to the special needs of each parent and each parent’s cultural background.

No conflicts of interest were reported.

We thank the families who generously participated in the current study.

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Home > Graduate Theses > 375

MSU Graduate Theses

A hearing-impaired child in the mainstream: a case study.

Norma J. Chapman

Date of Graduation

Master of Science in Education in Literacy

Reading, Foundations, and Technology

Committee Chair

James Layton

The intent of this case study was to demonstrate that the mainstreaming of a hearing impaired child could be successfully achieved by determination of the current academic and social status of the child through a case study approach followed by research into current practices in teaching hearing impaired children and concluding with intensive teaching and training to modify the current academic skills of reading and letter-sound association along with social performance. A pre-test, post-test approach was used in the teaching sessions and a record was kept of each session as to the tests, results, and teaching approaches implemented. The student gave evidence of gain in both the affective and academic domains. It was concluded by the researcher that this type of approach--case study, research into teaching methods used effectively with a specific handicap, and use of varied approaches to teaching reading skills to find the one most effective for a particular student, can be of major benefit to a handicapped student in the mainstream.

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© Norma J Chapman

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Chapman, Norma J., "A Hearing-Impaired Child in the Mainstream: a Case Study" (1979). MSU Graduate Theses . 375. https://bearworks.missouristate.edu/theses/375

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Systems that support hearing families with deaf children: A scoping review

Julia terry.

1 School of Health and Social Care, Faculty of Medicine Health and Life Science, Swansea University, Wales, United Kingdom

Jaynie Rance

2 School of Psychology, Faculty of Medicine Health and Life Science, Swansea University, Wales, United Kingdom

Associated Data

All relevant data are within the paper and its Supporting information files.

Over 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. We performed a scoping review to provide an overview of current literature on the topic.

The protocol of the scoping review was prepared using the PRISMA statement guidelines for scoping reviews. Relevant search terms were used to identify eligible studies following discussion with the study’s steering group. Databases searched were CINAHL, Medline, ProQuest Central and ASSIA, as well as grey literature from relevant journals and online sources. Included were studies published from 2000 to 2021 and available in English.

A search of databases identified 1274 articles. After excluding duplicates, screening titles and abstracts and full texts, 65 papers matched the identified inclusion criteria. Results included 1 RCT, 7 comparative studies, 6 literature reviews, 4 PhD theses, and 47 further empirical studies.

There is limited quality evidence on what supports hearing parents with deaf children. It is evident that further studies are needed to ensure comprehensive support is accessible and effective for hearing parents of deaf children.

Introduction

Authors’ note.

In this paper the terms Deaf and deaf are used. A capital D for Deaf is used to refer to people who identify as Deaf and view themselves as part of Deaf communities, are a Deaf adult, Deaf professional or Deaf mentor, or who may be profoundly Deaf and may use a signed language. When a lower-case d for deaf is used this tends to refer to deaf children or those who are hard of hearing. Currently there is limited consensus about an emic term, as people can feel colonised when a specific label is provided and may be in different places in their individual journey [ 1 ].

Over 5% of the world’s population experience deafness or hearing loss [ 2 ] and by 2050 hearing loss will affect one in ten people. Currently there are an estimated 34 million deaf children globally [ 3 ], and nearly 55,000 deaf children in the UK [ 4 ]. As 96% of deaf babies are born to hearing parents [ 5 , 6 ] who are usually not expecting to raise a deaf child, it is important that families benefit from a range of support processes and interventions. Support in this context can best be described as encouragement, help and enablement, to promote sustainable success and confidence for hearing parents and their deaf children.

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. Currently at least 45 US states require new-born hearing screening by law [ 7 ] and others have achieved this without legislation or have it pending. In the UK the NHS newborn hearing screening programme recommends screening for all babies in the first five weeks of life, although there is a notable absence of hearing screening in the Global South [ 8 , 9 ]. 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 (EHDI) 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 dichotomizing 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.

Aims of the study

The aim of this scoping review was to map available evidence regarding the systems and structures surrounding deaf children and their families with hearing parents/guardians.

The specific objectives were to:

• identify published studies describing support systems and structures that support hearing parents with deaf children, and
• review the evidence of these studies.

The primary objective of this review was to assess the number of studies and their characteristics such as their origin, study designs, study population, type of support and key findings regarding systems or supports for hearing parents with deaf children.

Study design

We followed PRISMA-ScR guidelines for scoping reviews in the conduct of the literature review, data extraction/charting, and synthesis. The main aim of a scoping review is to identify and map the available evidence for a specific topic area [ 31 ]. The approach to the review was based on Arksey and O’Malley’s framework [ 32 ] which consists of the following stages: i) identifying the research question; ii) identifying relevant studies; iii) selecting studies; iv) charting the data; and v) collating, summarising and reporting the results. Ethical approval was not required because the study retrieved and synthesised data from already published studies.

Identifying the research question

The core aim of this scoping review was: What is the existing research that examines support systems for hearing parents with deaf children. The focus on hearing parents was due to over 90% of deaf children being born to hearing parents, who have little knowledge of deafness and deaf people, which is different from the experience of Deaf parents parenting deaf children [ 33 , 34 ]. An initial a priori protocol was developed and published on Open Science Framework in February 2021, and then revised using feedback from the project steering group over the course of the project, as scoping reviews are an iterative process [ 35 ]. The steering group comprised Deaf and hearing professionals and lay members, people working with Deaf charities, in health, education, policy and academia. Decisions were documented in a search log and steering group meeting notes to record the scoping review process. The final protocol was registered on 24 th August 2022 with the Open Science Framework— https://osf.io/w48gc/ .

Identifying relevant studies

The scoping review research question was left intentionally broad and was discussed in-depth at the first project steering group where members generated 50 words and terms to be included in the outline database searches. The evidence was searched using four electronic databases, hand searches of reference lists of key journals and repositories (such as PROSPERO), and contact made with key authors; as well as internet site searches for policies and reports. The wider project involves interviewing family members and workers situated in Wales, UK, so the scoping review included material specific to Wales as well as other geographical areas nationally and internationally that has contextual similarities (for example, grey literature including newspaper articles about family situations and support projects, blogs and regional reports), and these were included in the early stages of the review. An experienced information specialist’s help was sought in reviewing the PICO framework (see Table 1 ) and specific search strategies. The databases included were CINAHL, Medline, ASSIA and Proquest Central, with searches conducted between May and June 2021, and updated in January 2022. (An example of the search strategy for one database is provided as an additional file).

Different techniques and terms were used to expand and narrow searches, including tools such as medical subject headings (MESH), Boolean operators and Truncation. Single and combined search terms included key subject area on deafness, children, BSL/sign language and parent/family words. Limitations were set to include papers in the English Language and peer-reviewed research from the time period January 2000 onwards. In addition, key journals, professional organisation websites and reference lists of key studies were searched to identify further relevant documents. The final search strategy and terms were agreed and verified by a health subject librarian.

Inclusion criteria were: published research articles and dissertations, literature reviews and PhD theses specific to a) parents and families/caregivers b) deafness/hard of hearing/hearing loss c) sign language or British Sign Language (BSL) d) child or young person e) information specific to support, systems, challenges, barriers f) were published in English between 2000–2021. The inclusion criteria were purposely broad, as there is a dearth of scientific evidence on the area of support and systems for hearing parents with deaf children.

Exclusion criteria were: papers pre-2000 (unless they met a-e of inclusion criteria above); papers without a focus on deafness, papers that focused solely on literacy, or were short news items or opinion papers, and/or did not focus on support issues for hearing parents of deaf children.

Study selection

The initial search produced a total of 1274 results from database searches (see PRISMA, Fig 1 ), which were screened, and a further 192 records were added from internet and hand-searching. An example of a database search is provided in Table 2 . Once duplicates were removed (n = 2653+18) and a further 8 discounted as pre-2000 that did not meet the inclusion criteria, 1202 publications remained, and titles and abstracts were screened. 821 records were then removed in line with the eligibility criteria, and the remaining 381 full texts were obtained, and details transferred to an Excel database for sifting. Knowledge synthesis was achieved by peer review using Rayyan software [ 36 ] and annotated spreadsheets of retrieved papers, which were reviewed by two researchers independently with inter-rater discrepancies resolved by discussion.

We began by excluding sources that did not describe support for hearing parents of deaf children, such as opinion articles, newspaper reports, and papers without a deaf focus. Screening full texts resulted in a further 316 papers being excluded, leaving a total of 65 publications included in this review (see Fig 1 PRISMA diagram).

Charting the data

A data-charting form was developed by one reviewer, and then updated iteratively in discussion with the second reviewer, which was piloted and found to be effective. The data extracted were the author, year of publication and country of origin, study design, sample population, study aim and findings and study strengths and weaknesses, (see Table 3 ). Articles meeting inclusion criteria were examined, and data was entered into Excel spreadsheets, which included sample characteristics (age range, clinical characteristics, sample size); and experimental and control measures, as applicable.

Through this process sources were identified as follows: 55 primary research studies, four PhD theses and six literature reviews.

Collating, summarizing and reporting results

From the final scoping review, 21 individual countries were represented ( Fig 2 , which present the distribution by country). Most publications came out of the USA, Australia, the UK and Canada, which may be due to greater funding in this area of research compared to other nations.

Due to the heterogeneity of the range of study contexts, a narrative synthesis was a reasonable way to approach the reporting of retrieved studies. After summarising the information from sources, a thematic framework was applied to categorise the areas of support for hearing parents. This involved sorting studies into categories as follows: i) Communication choices and strategies; ii) Interventions and resources; iii) Family perspectives and environment; and iv) Deaf identity development . In addition, strengths and limitations of the sources are presented in Table 3 . Context from the grey literature is included in this paper’s introduction section, as this clinical wisdom provides additional information and context.

Theme one: 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 ].

Retrieved papers under the communication choices and strategies theme included 20 primary research studies and two literature reviews. The 20 primary research studies included three co-comparative studies, four quantitative studies and twelve qualitative studies and one PhD thesis.

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 in this scoping literature review 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.

Theme two—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.

Theme three: 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 ].

Theme four: 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.

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 at 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.

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.

Supporting information

S1 checklist, funding statement.

This scoping review and the linked descriptive qualitative study are part of the SUPERSTAR project funded by Research Capacity Building Collaboration (RCBC) Wales, a Welsh Government funded scheme through Health and Care Research Wales, which exists to increase research capacity in nursing, midwifery, the allied health professions and pharmacists across Wales. The SUPERSTAR project is a Postdoctoral Fellowship, where the funder provides access to a supervisor, and a Community of Scholars to support and promote high research quality and outputs. The funder had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Data Availability

• PLoS One. 2023; 18(11): e0288771.

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Reviewer #1: Thank you for the opportunity to review Systems that support hearing families with deaf children: A scoping review. To help pinpoint the specific sentences that require my commentary in the absence of line numbers, I will use page numbers and the closest citation like this P:[X]

2:[4] - Support is not really defined here. I know it's not quite possible to define support as this is an individual issue, but the paper claims that support is lacking. What support would be needed?

3:[7,8] - Many people will find the term "developing countries" offensive. Perhaps Global South? Formerly colonized countries?

3:[9] - List out these effects - perhaps cite Wyatte Hall's work on language deprivation syndrome.

3:[13] - This sentence a bit both-sides the debate. As you are not the New York Times, I don't think it's necessary to try to both-sides a clearly destructive argument from the Oralists. All deaf children should have some exposure to signed languages. Anything else is an enforcement of white supremacy values where only spoken languages are valued and everything else can be discarded.

4:[17] - Let's be realistic. There is almost never signed alone. It is usually a mixture, or spoken languages only.

5:[20] - Note that the width of the language development window is still under debate. 5 years isn't a hard stop. Language acquisition continues up until teenage years. But yeah. Early is good.

5:[21] - This next paragraph is very good. I think you can add more citations to bolster your argument. Hall Hall and Caselli is good. I believe Lillo-Martin may have a recent paper.

[22] - I don't think Geers et al is the right citation for this.

6:[28] - I've seen several quasi definitions of support but nothing that makes me scream, yes, this is what support is. I would like to do this.

7:[30] - Very nice and clear. I like the use of OSF

8 - It's not immediately clear to me why educational databases were not searched as this would cover Journal of Deaf Studies and Deaf Education, Deaf Education & International, and the Annals of the Deaf

9 - I don't like the term hearing impaired but I wonder if using that term would net more articles.

10 - Does Rayyan software require a citation?

11 - I think there's more funding to be honest. These are also Global North countries with robust economies. I am not sure this is as much an interest issue as it is an ability to receive funding.

11:[319 - I am not sure what reference 319 is, but I assume that will be fixed. However, I don't think that signed/spoken/both is the correct distribution of choices. It's usually both/spoken.

11: [19] - I am not sure that I agree that parents don't have time to engage with deaf communities (love the use of plural here). I think the answer is that there's usually not infrastructure to pipe parents to the appropriate deaf communities.

12:[18] - I want your point to be stronger here. Language does not interfere with language. Language does not hurt any kind of learning. Even asking the question is ableist.

12:[35] - I'm surprised no one mentioned ableist attitudes towards signed languages.

13:[40] - Laura Mauldin's Made to Hear discusses some of this. Also mentions that parents tend to think that their kids will be the successful ones that don't need signed languages.

15:[45] - I think this kind of hints that communication will always be a joint venture. I want you to say this stronger.

16:[50] - These families really should have an option to learn the signed languages of their cultures (e.g. LSM)

17:[52] - I think the issue of socio-emotional development being poor isn't well analyzed by hearing professionals. People react badly to not being able to communicate and things like Dinner Table Syndrome. Like, it's not the deafness. It's everything around it.

21:[69] - I do not understand this sentence "Aware that by giving parents ‘the means to communicate with their deaf child by using the child’s primary language’ parents are provided with greater opportunity for understanding their child’s world. "

21:[69] - This paragraph is rough. I don't understand what the point is. It doesn't matter if the child overtakes the parent in proficiency. It only matters if the parents are the only model, like, forever.

24:[77] - Without any context, reporting the data by race/ethnicity does not add positive information. Why do Black families struggle with coping strategies? How does the inherent racism of the US system restrict use of coping strategies? This information isn't here. I would remove everything after "Additionally,"

25:[84] - Marschark is famous for never considering the context that the data is gathered in. Why are these kids feeling lonely? What does it mean that kids implanted earlier feel less lonely? Does anyone notice that the number of pirates decreased as the weather got warmer ( https://pastafarians.org.au/pastafarianism/pirates-and-global-warming/ )?

25:[85] - The weirdness of conflated variables appears in Holt et al's work. I see Kronenberger and Pisoni also contributed to this. This data result is silly. How would self reported control lead to small vocabularies? How would organization mean fewer inhibition problems? If a butterfly farts in the Atlantic, is there guaranteed to be a hurricane in the Pacific?

26:[86] - Sad that most of the deaf clubs in the states have closed.

27:[91] - I would not cite Johnston here. I think Kuster's work is more applicable. As is de Muelder.

30:[101] - Make sure you're citing Leala Holcomb's work here.

31:[40] - Honestly it's fair to say the hearing parents are ableist and audist yeah.

31:[61] - In my US State, all the parent supporters are oralist advocates. We have no signing parent mentor.

Reviewer #2: Suggestion:

p. 5, sentence beginning ‘Sign Language often comes naturally to deaf children…’ — Rather than beginning the sentence with ‘Sign Language’ with both words capitalised, I recommend using lower case in ‘language’ because there is no language named ‘Sign Language’ but with both letters capitalized, it can create the impression that it is the name of a language. This reinforces the common misconception that there is only one sign language worldwide. By saying “sign language” with lowercase letters (or ‘signed languages’), it reads more parallel to ‘spoken language’ where no one would mistake that for a single language but rather a category of languages in a particular modality. This is done later in the MS (and even later in this paragraph) and it reads much more clearly without this possibility of misunderstanding.

p. 11, first sentence under subheading — perhaps a typo in the citation. It is listed as ‘[319’ with no closing bracket

Throughout: It seems you mostly chose to capitalise ‘deaf’, which is fine, however this is a bit inconsistent, e.g., with some lowercase tokens on page 16. I’d suggest explaining whatever decision you make, citing the relevant literature and then being consistent throughout. If you’re not aware of this paper, I recommend it for a newer take on ‘Deaf’ versus ‘deaf’

https://www.scirp.org/journal/paperinformation.aspx?paperid=97416

Positionality statement:

It would be helpful, if permitted by the journal, to include a positionality statement for the two authors so readers know what lived experiences/expertise they bring to this work. That would, to my mind, tie in with some of the narrative about the findings reported in this paper.

Just in case it is helpful/applicable, please see Lieberman et al (2022)

https://sites.bu.edu/lavalab/files/2022/06/Lieberman-Mitchiner-Pontecorvo-2022.pdf

See also Oyserman and de Geus (2021)

https://www.degruyter.com/document/doi/10.21832/9781800410756-011/html

Reviewer #3: This paper is well-balanced and captures the nuance quite well of what parents experience when they learn of having a deaf child and how the medical model influences choices. I was impressed with the acknowledgement of how marginalized signed languages have been in deaf child development. I applaud the authors for bringing this balanced view and highlighting the plurality of options in an international scope. I have no major feedback on this paper, there are minor grammar and writing aspects that can be improved with editor review.

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Author response to Decision Letter 0

Response to reviewers – PONE – 22 – 29952

Systems that support hearing families

We are grateful to all reviewers for their helpful comments. Please see our responses below. On the tracked changes version of the manuscript, all new references in the References list are highlighted in yellow. The numbering both in the manuscript and in the reference list is now accurate for this revised manuscript.

Reviewer #1: Thank you for the opportunity to review Systems that support hearing families with deaf children: A scoping review. To help pinpoint the specific sentences that require my commentary in the absence of line numbers, I will use page numbers and the closest citation like this P:[X]

Response: Thank you, your comments across the paper are extremely helpful.

Response: Thank you. A definition of support is now included in the first paragraph of the introduction.

Response Thank you, now amended to ‘the Global South’.

Response: Thank you, effects and Wyatte Hall’s work now included.

Response: Helpful point, sentence with [13] now removed.

Response: Thank you, now rephrased.

Response: Thank you and a fair point, now softened with ‘around the age of five years..’

Response: Very helpful, thank you, both suggested citations now added.

Response: Fair point, now removed.

Response: Thank you, good point. We have provided a definition of support systems at this point.

Response: Thanks.

Response: Thanks. Whilst specific educational databases were not included as one of the four named databases, many of the included 65 papers are indeed from educational journals including Journal of Deaf Studies and Deaf Education, Deaf Education & International, and the Annals of the Deaf. The Proquest Central database does include educational databases. Also, due to the steering groups’ suggested search terms, the information specialist’s help and intense internet and hand searching for evidence the authors are confident that relevant evidence from educational journals is certainly included in this scoping review.

Response: Agree, the term ‘hearing impaired’ was indeed used as a search term, please see Table 1, PICO framework.

Response: Thanks, good point. Rayyan reference (Ouzzani et al now included).

Response: Thanks, sentence now revised.

Response: Thanks, typo now corrected. The reference had been Yu (2021), but now changed to Hall, Hall and Caselli. Sentence now revised.

Response: Thanks, sentence now amended to reflect lack of infrastructure.

Response: Thank you, sentence revised.

Response: Thank you. Agree, ableist attitudes are not specifically stated as such in the literature, although that does appear to be what parent experience is describing.

Response: Thank you, reference to Maudlin’s work now included.

Response: Thank you, good point, sentence now revised.

Response: Thank you, a helpful addition and now included.

Response: Thank you, additional sentence now included.

Response: Thank you, sentence now revised.

Response: Thank you, paragraph now revised.

Response: Thank you, now revised and sentence removed.

Response: Thanks, additional sentence added.

Response: Thank you for drawing attention to this. We have returned to the paper and revised the phrasing.

Response: Thank you, sentence added and citations added.

Response: Thank you. We have retained reference to the Johnston paper, as we are referring to the retrieved paper from the included 65. We have supported this with a citation from Kusters, DeMeulder and O’Brien to increase clarity.

Response: Thank you, we have now added a citation on Holcomb’s work.

Response: Thank you, point revised and made more clearly.

Response: Thank you, agree this may vary by region hence no changes made, as point is more about Deaf mentors, few Deaf professionals and supporting parents being a welcome intervention.

Reviewer #2:

Suggestion:

Response: Thank you, very helpful, and now checked across the manuscript and only appears as ‘sign language or ‘signed language’, unless at the start of a sentence or in reference to a specific such as ASL or BSL.

Response: Thank you, it was a typo, now amended.

Response: Thank you, we were not previously aware of this paper, which is extremely helpful and is now cited in our explanation. We have now included an Authors’ note at the start of the paper to provide reader clarity. Throughout the paper all reference to Deaf adults, communities, professionals, clubs, identity, culture, mentors and family members, then a capital D is used. Whilst when referring to deaf children, and deafness a lower-case d for deaf is used.

Response: Thank you, a useful point to consider. Positionality statements can be useful for readers. We thought it helpful to add more description about the project’s steering group in the Methods’ section.

Response: Very helpful to have these references. We have included them towards the end of the paper, thank you for bringing them to our attention.

Reviewer #3:

This paper is well-balanced and captures the nuance quite well of what parents experience when they learn of having a deaf child and how the medical model influences choices. I was impressed with the acknowledgement of how marginalized signed languages have been in deaf child development. I applaud the authors for bringing this balanced view and highlighting the plurality of options in an international scope. I have no major feedback on this paper, there are minor grammar and writing aspects that can be improved with editor review.

Response -Thank you for your comments.

Submitted filename: Response to reviewers PONE-22-29952.docx

Decision Letter 1

26 Apr 2023

PONE-D-22-29952R1Systems that support hearing families with deaf children: a scoping reviewPLOS ONE

Please submit your revised manuscript by Jun 10 2023 11:59PM. If you will need more time than this to complete your revisions, please reply to this message or contact the journal office at  gro.solp@enosolp . When you're ready to submit your revision, log on to https://www.editorialmanager.com/pone/ and select the 'Submissions Needing Revision' folder to locate your manuscript file.

1. Please review your reference list to ensure that it is complete and correct. If you have cited papers that have been retracted, please include the rationale for doing so in the manuscript text, or remove these references and replace them with relevant current references. Any changes to the reference list should be mentioned in the rebuttal letter that accompanies your revised manuscript. If you need to cite a retracted article, indicate the article’s retracted status in the References list and also include a citation and full reference for the retraction notice.

Additional Editor Comments:

1. Please re-word to use low-middle income countries and high-income countries as appropriate throughout the manuscript. 

1. If the authors have adequately addressed your comments raised in a previous round of review and you feel that this manuscript is now acceptable for publication, you may indicate that here to bypass the “Comments to the Author” section, enter your conflict of interest statement in the “Confidential to Editor” section, and submit your "Accept" recommendation.

Reviewer #2: All comments have been addressed

2. Is the manuscript technically sound, and do the data support the conclusions?

3. Has the statistical analysis been performed appropriately and rigorously?

4. Have the authors made all data underlying the findings in their manuscript fully available?

5. Is the manuscript presented in an intelligible fashion and written in standard English?

6. Review Comments to the Author

Reviewer #2: Overall, I’m very happy with the revisions to the manuscript. Thank you for your hard work in addressing reviewer comments. I have just one more remark:

1. P. 53-54 (paragraph straddling these pages). Here you state that an alternative may have been for these families to learn LSM, however, I’m looking at the original article, and I’m only seeing that the families in this study were from “Spanish-speaking” backgrounds. It does not specify their country (or territory, e.g., Puerto Rico) of origin. I do not feel the suggestion to specifically name LSM here is appropriate for two reasons. First, if the family is from, say, El Salvador, why would they be compelled to learn LSM? Second, if the family lives in the US and there is no one in their community who knows LSM, how is it functional for them to learn a language they can’t use with anyone? I feel strongly the manuscript would be better off with the sentence in question omitted.

I’m not sure if this would be helpful, but if you feel compelled to comment on some of the unique struggles of families from a Spanish-speaking background, you may consider this article:

Steinberg, A., Bain, L., Li, Y., Delgado, G., & Ruperto, V. (2003). Decisions Hispanic Families Make After the Identification of Deafness. Journal of Deaf Studies and Deaf Education, 8(3), 291–314. https://doi.org/10.1093/deafed/eng016

7. PLOS authors have the option to publish the peer review history of their article ( what does this mean? ). If published, this will include your full peer review and any attached files.

Author response to Decision Letter 1

PONE-D-22-29952R1

We are grateful to all reviewers for their helpful comments. Please see our responses below, and on the tracked changes version of the manuscript:

Editor comments:

1. Please re-word to use low-middle income countries and high-income countries as appropriate throughout the manuscript.

Response: Thank you for this helpful comment. Now changed throughout.

Reviewer #2: Overall, I’m very happy with the revisions to the manuscript. Thank you for your hard work in addressing reviewer comments. I have just one more remark:

Response: Thank you for this helpful comment. On consideration we have removed this sentence.

Submitted filename: Response to reviewers PONE-D-22-29952R1.docx

Decision Letter 2

19 Jun 2023

PONE-D-22-29952R2Systems that support hearing families with deaf children: a scoping reviewPLOS ONE

Please check your prisma flow diagram in figure 1and explain exclusion criteria inside the box. There is a need of improvement in PRISMA FLOW fig 1. Please see page 13. Justify exclusion screening (n=821). The diagram have made poorly. The line are irregular. Kindly redraw and elaborate in detail all criteria. Please do include it in text if any new addition in text.

Table 2, Strength and weakness must possess under a separate column. Rewrite in and elaborate the content.

i could not find the search strategy as additional file. Kindly check your manuscript. It is suggested to provide inside the manuscript.

Please write your manuscript according to plosone criteria and provide following clear methodology in method section such as Data screening, data entry and collection method.

read following content in Cochrane database

https://www.cochranelibrary.com/about/about-cochrane-reviews

Please submit your revised manuscript by Aug 03 2023 11:59PM. If you will need more time than this to complete your revisions, please reply to this message or contact the journal office at  gro.solp@enosolp . When you're ready to submit your revision, log on to https://www.editorialmanager.com/pone/ and select the 'Submissions Needing Revision' folder to locate your manuscript file.

Muhammad Shahzad Aslam, Ph.D.,M.Phil., Pharm-D

Please review your reference list to ensure that it is complete and correct. If you have cited papers that have been retracted, please include the rationale for doing so in the manuscript text, or remove these references and replace them with relevant current references. Any changes to the reference list should be mentioned in the rebuttal letter that accompanies your revised manuscript. If you need to cite a retracted article, indicate the article’s retracted status in the References list and also include a citation and full reference for the retraction notice.

read following content

Reviewer #2: I have no further comments at this time. I am satisfied with the way the manuscript has been revised.

Author response to Decision Letter 2

28 Jun 2023

Response to Reviewers- - PONE-D-22-29952R2

Thank you for your helpful comments and guidance. As we have revised the manuscript, we have looked extensively at other scoping reviews published in Plos One, which has been helpful.

Reviewer comment: Please check your prisma flow diagram in figure 1and explain exclusion criteria inside the box. There is a need of improvement in PRISMA FLOW fig 1. Please see page 13. Justify exclusion screening (n=821). The diagram have made poorly. The line are irregular. Kindly redraw and elaborate in detail all criteria. Please do include it in text if any new addition in text.

Response: Thank you for your suggestions. The PRISMA diagram has been re-done. No further text added to manuscript.

Reviewer comment: Table 2, Strength and weakness must possess under a separate column. Rewrite in and elaborate the content.

Response: Separate columns have now been added for strengths and another for weaknesses, with additional content now added. A few entries do just state ‘small sample’, and we have been back to these articles again, but there is little else to say with regards to these publications due to limited detail.

Reviewer comment: I could not find the search strategy as additional file. Kindly check your manuscript. It is suggested to provide inside the manuscript.

Response: Apologies. An example of a search strategy from one database (CINAHL) is now included within the manuscript and has also been uploaded as an additional file.

Reviewer comment: Please write your manuscript according to Plosone criteria and provide following clear methodology in method section such as Data screening, data entry and collection method.

Response: Thank you. Further detail about data screening, data entry and collection method is now included on page 12. The sub-headings used in the Methods sections are based on Arksey and O’Malley’s framework, as explained on page 8.

Submitted filename: Response to Reviewers_PONE-D-22-29952R2 .docx

Decision Letter 3

Systems that support hearing families with deaf children: a scoping review

PONE-D-22-29952R3

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Diagnosing a learning disability in a hearing-impaired child. A case study

Affiliation.

• 1 Oregon Health Sciences University.
• PMID: 2270819
• DOI: 10.1353/aad.2012.0525

In the past, the learning problems of hearing-impaired children have been attributed solely to the child's hearing loss. A hearing impairment and its associated language deficit make it difficult to determine whether an underlying learning disability contributes to the hearing-impaired child's learning problems. This report describes a case study that used an interdisciplinary diagnostic approach to determine whether a hearing-impaired child had a learning disability and to determine the type of disability. The approach included teacher observation, standardized assessment procedures, interpretation, and subsequent recommendations. Applying this approach to various educational settings is also discussed.

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• Using standardized psychometric tests to identify learning disabilities in students with sensorineural hearing impairments. Sikora DM, Plapinger DS. Sikora DM, et al. J Learn Disabil. 1994 Jun-Jul;27(6):352-9. doi: 10.1177/002221949402700602. J Learn Disabil. 1994. PMID: 8051508
• Classification of dyspraxia in hearing-impaired children using the Q-technique of factor analysis. Aplin DY. Aplin DY. J Child Psychol Psychiatry. 1987 Jul;28(4):581-96. doi: 10.1111/j.1469-7610.1987.tb00225.x. J Child Psychol Psychiatry. 1987. PMID: 3654808
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Inclusion of a Child With a Hearing Impairment in a Mainstream School, Single Case Study

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Inclusion of a Child With a Hearing Impairment in a Mainstream School, Single Case Study

Inclusive education means that all pupils, regardless of their ability, gender and race, can study with their peers in the school closest to their place of residence. When enrolling students with special needs in a school, the quality of the student’s academic and social inclusion is equally important. The study aims to analyze the single case of inclusion of a boy with a hearing impairment in a mainstream school X to answer the research questions: how do teachers deal with a pupil with hearing impairment and his needs in the classroom, what are the peculiarities of a hearing-impaired child’s learning, what support (academic and social) is provided to the boy to promote his inclusion in school and the classroom? In the qualitative study, semi structured interviews were conducted with the boy with a hearing impairment and 5 teachers of school X and the boy’s father, they were analyzed using content analysis. Three main categories emerged from the data: (1) support provided by teacher...

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Conference: 22nd International Congress on the education of the Deaf At: Athens

Paraskevas Thymakis

The present literature spots some of the elements, in which pupils who are deaf or hard of hearing seem to face important obstacles in their endeavor for inclusion. In light of the aforementioned situation we searched and focalized a group with effective and functional inclusion practices according to the contemporary bibliography. These practices were grouped in four axes of inclusive though and action. (a) practices which concern the people involved in inclusion (b) practices for the development of school environment (c) teaching practices (d) practices for the development of communication and socialization. Cooperation amongst the involved people puzzles a considerable part of relative bibliography while it seems that further research is necessary for featuring inclusive practices through educational act.

Ghulam Fatima

Guita Movallali

Education Sciences

Eva Ariño Mateo

The aim of this study is to demonstrate the attitudes and perceptions of teachers regarding the educational inclusion of students with hearing disabilities. The study sample consisted of 128 teachers from the Canary Islands, of which 72 worked in ordinary centers and 56 in Ordinary Centers for Preferential Educational Attention for Hearing Disability (COAEPHD). A quantitative cut methodology was used, based on the use of the Questionnaire of Opinions, Attitudes and Competencies of Teachers towards Disability (CACPD). The results of this study do not allow us to affirm that the teachers showed positive attitudes towards inclusion, expressing concern about offering a correct and adequate response to the students with hearing disabilities. They considered that educational inclusion requires important improvements focused on the training and specialization of teachers in the field of inclusion.

The South African journal of communication disorders. Die Suid-Afrikaanse tydskrif vir Kommunikasieafwykings

Brenda Louw

Edu Makhonco

American Annals of the Deaf

Panayiotis Angelides

Olga María Alegre de la Rosa

Background: This study raised the following problem: How reliable is the Inclusion for Children and Adolescents Questionnaire (ICAQ) when measuring the attitudes of students with hearing loss towards inclusive education (IE) in public schools in the Canary Islands? Methods: The sample consisted of 297 students from the province of Gran Canaria, and 137 students from the province of Tenerife, with an average age of 11 years old. An exploratory factor analysis determined the reliability and relevance of ICAQ. Results: The authors found four factors of students’ attitudes towards IE: Family involvement and use of technology, inclusion in the centre, communication with medical specialists, and assessment of the support technology. Conclusion: There were significant differences between the students with hearing loss in terms of the following factors: Inclusion in the centre and assessment of the support technology. The total score of students’ attitudes towards IE was high. This piece of...

International Journal of Academic Research in Progressive Education and Development

saeid hassanzadeh

Simbarashe Muputisi

The main purpose of this study was to investigate the perceptions of educators on the inclusion of learners with hearing impairment into regular Advanced Level classes in selected Gweru urban high schools. It also tried to identify gaps in information regarding inclusive education in general. The research aimed at identifying particular perceptions and possibly attitudes of teachers and administrators in schools and those of other stakeholders. The results were used to make a number of conclusions based on generalizations and recommendations about the study. The descriptive survey design method was used with the questionnaire as the main data collection instrument, reinforced by interviews to explore feelings and beliefs and to clarify misconceptions where necessary. The data presentation, analysis and interpretation were done in form of percentages, tables and graphs for quick, easy reading and analysis of research findings and display of results. The research findings indicated that educators generally agree with the inclusion of learners with hearing impairment and that there is need to show some interest and support towards inclusive programmes. Most of the educators also indicated that the majority of current classrooms require modifications to suit the needs of learners with hearing impairment. Both Heads and teachers indicated that learners with hearing impairment require special educational facilities, especially the severely affected. It emerged from the review of related literature that inclusive education has become a reality in Zimbabwe. It was therefore recommended that all tertiary colleges should incorporate an element of special education in all of their course modules; particularly sign language which is relevant in communicating and managing learners with hearing impairment in regular settings.

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• DOI: 10.1353/AAD.2012.0525
• Corpus ID: 370756

Diagnosing a Learning Disability in a Hearing-Impaired Child: A Case Study

• Donald S. Plapinger , D. Sikora
• Published in American Annals of the Deaf 1 October 1990
• Education, Medicine

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