The most accurate synthesis of preexisting and new data on population demographics shows that 90% of deaf children are born to hearing parents (Mitchell & Karchmer, Reference Mitchell and Karchmer2004). Most hearing parents of deaf children have no experience of deafness prior to the birth of the deaf child, and these parents usually experience the diagnosis as a traumatic event (Brand & Coetzer, Reference Brand and Coetzer1994; Calderon & Greenberg, Reference Calderon, Greenberg, Marschark and Clark1993; Henggeler, Watson, Whelan, & Malone, Reference Henggeler, Watson, Whelan and Malone1990). Despite advances in the last 10 years, including early detection of congenital deafness (Nelson, Bougatsos, & Nygren, Reference Nelson, Bougatsos and Nygren2008) and early cochlear implantation (CI; Anderson et al., Reference Anderson, Weichbold, D’Haese, Szuchnik, Quevedo, Martin and Phillips2004), new hearing parents of deaf children face multiple challenges (Burger et al., Reference Burger, Spahn, Richter, Eissele, Löhle and Bengel2005; Hardonk et al., Reference Hardonk, Desnerck, Loots, Van Hove, Van Kerschaver, Sigurjónsdóttir and Louckx2011; Spahn, Richter, Burger, Löhle, & Wirsching, Reference Spahn, Richter, Burger, Löhle and Wirsching2003).
As the child is born into a majority hearing world, parents must confront matters such as investing time, building trust, readjusting expectations and engendering tolerance and acceptance of those differences (Young, Reference Young, Marschark and Spencer2010). Feelings of grief and loss among hearing parents of a deaf child as well as stress and painful emotions have been widely reported (Fitzpatrick, Graham, Durieux-Smith, Angus, & Coyle, Reference Fitzpatrick, Graham, Durieux-Smith, Angus and Coyle2007; Hardonk et al., Reference Hardonk, Desnerck, Loots, Van Hove, Van Kerschaver, Sigurjónsdóttir and Louckx2011; Young & Tattersall, Reference Young and Tattersall2007). Mixed method (Punch & Kidd, Reference Punch and Kidd2001) and case study research (Simser, Reference Simser1999) reveal the considerable strains on families, including the grief, guilt, denial and anger experienced by some mothers.
The parent faces choices with language, technologies, education and identity. Parental decisions have to be made, and often within a certain timeframe, such as the so-called ‘window of opportunity’ for language development (Pallier, Reference Pallier, Köpke, Schmit, Keijzer and Dostert2007), although this ‘critical period’ hypothesis is debated in the neuroplasticity literature (Bates, Reference Bates, Broman and Fletcher1999; Mundkur, Reference Mundkur2005). Although one might anticipate that communication difficulties in hearing parent–deaf infant dyads would increase the risk of insecure attachment, the impact of hearing impairment on attachment remains unclear in the literature (Lederberg, Reference Lederberg, Marschark and Clark1993; Lederberg & Prezbindowski, Reference Lederberg, Prezbindowski, Spencer, Erting and Marschark2000; Marschark, Reference Marschark1993; Weisel & Kamara, Reference Weisel and Kamara2005).
Early CI is generally linked with superior oral language development and education (O’Donoghue, Reference O’Donoghue1999; Stacey, Fortnum, Barton, & Summerfield, Reference Stacey, Fortnum, Barton and Summerfield2006). The long-term outcomes (Marschark, Rhoten, & Fabich, Reference Marschark, Rhoten and Fabich2007), however, including the implications of the limited range of language choices offered, the absence of associated aspects of deaf culture (Hardonk et al., Reference Hardonk, Desnerck, Loots, Van Hove, Van Kerschaver, Sigurjónsdóttir and Louckx2011; Young, Jones, Starmer, & Sutherland, Reference Young, Jones, Starmer and Sutherland2005) and the ethical issues involved, such as the right to be deaf and not viewing deafness as a disability (Balkany, Hodges, & Goodman, Reference Balkany, Hodges and Goodman1996), remain uncertain and require further investigation.
Choices that the hearing parents make, from their cognitive and language development to socialisation and cultural identity, will influence the entire course of their deaf child's life (Calderon, Reference Calderon2000; Marschark & Spencer, Reference Marschark and Spencer2010; Simser, Reference Simser1999; Vaccari & Marschark, Reference Vaccari and Marschark1997). The family is critical for the social and cognitive development of a deaf child (Danek, Reference Danek, Power, Dell Orto and Gibbons1988; Greenberg & Kusche, Reference Greenberg, Kusche, Wang, Walberg and Reynolds1989; Marschark, Reference Marschark1993; Warren & Hasenstab, Reference Warren and Hasenstab1986), and a highly stressed family can foster poor social competence in the deaf adolescent (Watson, Henggeler, & Whelan, Reference Watson, Henggeler and Whelan1990). Indeed, being accepted by the family is a crucial influence on the healthy development of a child's identity (Hadjikakou & Nikolaraizi, Reference Hadjikakou and Nikolaraizi2007). Despite the lack of literature on the experiences of deaf parents of deaf children, research suggests that they compare with those of hearing parents of hearing children (Marschark & Spencer, Reference Marschark and Spencer2010).
Detection of congenital deafness in neonates generally enhances the benefits of early care interventions (Nelson et al., Reference Nelson, Bougatsos and Nygren2008; Yoshinaga-Itano, Reference Yoshinaga-Itano2003). However, despite access to a universal newborn hearing screening (UNHS) program since 1998 and to cochlear implantation and support services for early care, parents of deaf children in Flanders reported experiencing confusion, disbelief, disappointment and uncertainty (Hardonk et al., Reference Hardonk, Desnerck, Loots, Van Hove, Van Kerschaver, Sigurjónsdóttir and Louckx2011). This study focused on one time period of ‘early care trajectory’, from diagnosis to reduction in rehabilitation care (i.e., ‘when satisfactory oral language development is reached and/or the beginning of school’, Hardonk et al., Reference Hardonk, Desnerck, Loots, Van Hove, Van Kerschaver, Sigurjónsdóttir and Louckx2011, p. 319).
The current study attempts to expand this knowledge base to a sample of hearing parents of deaf children of a wide age range, from childhood to adulthood, in Western Australia (WA) using an in-depth qualitative research design (Gill & Liamputtong, Reference Gill and Liamputtong2009; Grbich, Reference Grbich2007). It was hoped that deeper insights might be obtained by referring to the knowledge and experience of parents gained over an extended period of their children's lives, from infancy to adulthood.
In July 2010, a UNHS-based automated auditory brainstem response (AABR) program was introduced in WA. Childcare professionals inform the parents if the second AABR test requires referral to an audiologist. Different follow-up services (Australian Hearing, ear, nose and throat departments in hospitals, West Australian Institute of Deaf Education [WAIDE] and Telethon Speech and Hearing) offer multidisciplinary care, fitting of traditional hearing aids and referral for CI (Ear, Nose and Throat Advisory Group, 2011). WA is an ideal setting to analyse the perspectives of parents of deaf children of varying ages born before 2010. Conducting the study in WA may help inform professionals in the fine-tuning of interventions beyond early diagnosis in order to minimise parental distress, and also enhance the emotional and informative support. Furthermore, the current study acts as a complementary study to Hardonk et al.'s (Reference Hardonk, Desnerck, Loots, Van Hove, Van Kerschaver, Sigurjónsdóttir and Louckx2011) findings, in which all parents interviewed had children born after UNHS was implemented.
Insights can be gained from a comprehensive investigation of parenting of a deaf child over an extended period, beyond diagnosis and early care (Burger et al., Reference Burger, Spahn, Richter, Eissele, Löhle and Bengel2005; Spahn et al., Reference Spahn, Richter, Burger, Löhle and Wirsching2003). First, a better understanding of what it is like to be a parent of an older deaf child could help parents of a younger deaf child shape care-related decisions as well as influence their parenting and parental self-care by seeking professional support. Second, listening to parental experiences related to different developmental periods of the child may inform professional healthcare practice. Third, in contrast to existing studies, which focus on the voices of the mother (Hardonk et al., Reference Hardonk, Desnerck, Loots, Van Hove, Van Kerschaver, Sigurjónsdóttir and Louckx2011; Punch & Kidd, Reference Punch and Kidd2001), this study addresses both the mothers’ and fathers’ experiences separately. Finally, extending our understanding of the parental role to a lifelong care framework helps to assess priorities and inform future research.
Method
Study Design and Data Collection
Within the qualitative paradigm, a phenomenological framework was utilised (Creswell, Reference Creswell2007), as it enabled the researcher to elucidate the meanings and common features associated with the lived experiences of a hearing parent of a deaf child (Starks & Brown Trinidad, Reference Starks and Brown Trinidad2007).
Interviews were conducted with English-speaking hearing mothers and fathers or other responsible primary carers of children with congenital hearing loss. All of the children had normal cognitive development, some with appropriate therapy and educational intervention. The participants were required to be either the parents or the primary carers of a deaf child from birth and to be residing in WA. As UNHS in WA was introduced in 2010, only children born before that date were included. No upper age limit at time of interview was set on the children, as the researcher hoped to elucidate a long-term picture of parenting over the life span.
A combination of sampling methods was used for recruitment. Attendance at meetings and lectures of the WA Deaf Society and WAIDE provided the researcher with opportunities to discuss the study and to recruit participants for a snowball sampling technique (Liamputtong & Ezzy, Reference Liamputtong and Ezzy2005). In total, 18 participants were interviewed: 10 women (nine mothers and one grandmother, who was the primary carer) and eight fathers. All families described themselves as middle class and identified as Caucasian (16), Black (one) or Asian (one). Participants had between one and five children, and all were partnered or married. One couple had two deaf children. All others had one deaf child. The relevant details of the children are summarised in Table 1.
TABLE 1 Demographic Information Regarding the Deaf Children of the Hearing Parent Participants
Note. CI = cochlear implant; HA = hearing aid; CP = cerebral palsy.
aCerebral palsy associated deafness. bThis child had a second cochlear implantation when she was 4 and a half years old, but her grandmother reported that it was put in without MRI testing. It was later found that she had nerve damage in that ear.
Two methods were combined in the data collection phase. Firstly, 18 semistructured, in-depth, individual interviews were undertaken; these are often utilised within the phenomenological paradigm (Moustakas, Reference Moustakas1994) and were designed to reveal the parents’ experiences according to particularly salient themes. As a starting point, to stimulate the interviews and to help the parent to navigate their memory of their experiences, participants were asked to reconstruct events, decisions and outcomes of those decisions chronologically in the life of the child. The researcher asked additional questions from a checklist, on the topics of diagnosis and reaction, decisions on language, technologies, education and identity, and recommendations to other parents and professionals in the field (Silverman, Reference Silverman2013).
Second, because the events that the parents were being asked to recall had taken place over a time span ranging from 3.5 to 30 years before the interview and therefore liable to be tainted by recall bias, a life-grid method was employed (Blane, Reference Blane1996). The life grid is a chronological plot in which the span of the child's life is represented visually. Four grids plotted different aspects of the child's life: ‘finding out he/she was deaf’, ‘early interventions and support’, ‘language, education and identity’, and ‘challenges at various stages of development’. Every grid had columns representing the life span of the child from birth to the time of the interview (adjusted for the particular child's age). Different types of events were noted in rows. Figure 1 represents an example of the language, education and identity grid. Events were registered in each cell according to the aspect of life, the circumstances, and when it occurred. This scheme was used to facilitate and validate the chronology, dates, order of events, and general consistency of retrospectively collected information (Berney & Blane, Reference Berney and Blane1997).
FIGURE 1 Example of “Language, Education and Identity” Grid.
Each interview was audio-recorded digitally and lasted approximately an hour. The experimental design followed protocols for obtaining informed consent. The researcher led the conversation at each interview and reflexivity was maintained throughout, so as to minimise the potential for researcher bias. The researcher kept a journal to record thoughts, feelings, and impressions encountered during the data collection and reduction process. This assisted in identifying biases held by the researcher and achieving clarity. The Edith Cowan University's Human Research Ethics Committee approved the research.
Data Analysis
Interviews were transcribed verbatim and analysed using the preliminary data analysis technique outlined by Grbich (Reference Grbich2007). Immediately after each interview, notes were made relating to the main topics raised by the participant. These notes then evolved during the transcription process as sections of text relating to the parents’ experiences and were assigned a short notation. This ‘preliminary analysis’ was a valuable precursor to the thematic analysis process as it highlighted potential categories (Grbich, Reference Grbich2007).
After transcription, all interviews were analysed using thematic analysis (Braun & Clarke, Reference Braun and Clarke2006; Green et al., Reference Green, Willis, Hughes, Small, Welch, Gibbs and Daly2007). These were read repeatedly to facilitate immersion in both the content and shared context of each individual interview. Transcriptions were considered both individually and concurrently. Saturation of data was evident after several interview transcript reviews were conducted (Josselson & Lieblich, Reference Josselson, Lieblich, Josselson, Lieblich and McAdams2003).
Two additional methods were used to enhance methodological and interpretative rigour. First, participants were invited to a parents’ gathering at the WA Deaf Society approximately one month after interviewing was completed. Along with other relevant issues, the themes that emerged were discussed and identified as reflecting the participants’ own experiences (Creswell, Reference Creswell2007; Murray, Reference Murray and Smith2003). This focus meeting confirmed that the parents’ experiences had been captured (Mertens, Reference Mertens2009). Seven of the parents attended the meeting and agreed that the themes identified accurately reflected their lived experiences. Those who did not attend were contacted by email and also confirmed their agreement. Second, researcher triangulation was performed where transcript themes were examined, discussed and agreed upon by unanimous consensus with three independent experts from WAIDE, WA Deaf Society, and the Deaf Interest Group of the Australian Psychology Society (Creswell, Reference Creswell2007; Smith, Reference Smith and Smith2003). Direct quotations were used to ensure thematic conclusions were supported in rich detail (Liamputtong & Ezzy, Reference Liamputtong and Ezzy2005).
Results
From the 18 verbatim transcripts, 112 significant statements were extracted and their formulated meanings were clustered into five themes. Table 2 outlines the themes and their component points, which are further elaborated in the text. Table 3 contains parent recommendations to other new hearing parents and professionals, and examples of significant quotes are included to expand the findings. Differences in perspectives of the parents can be accounted for by reference to their child's background (see Table 1). Pseudonyms are used.
TABLE 2 Themes and Component Points of the Experiences of Hearing Parents of Deaf Children
TABLE 3 Parent Recommendations to Other New Hearing Parents and Professionals
Theme 1: Trauma of Diagnosis of Deafness
All discussed the trauma of being informed that their child was deaf. ‘It was the worst day of my life’, the mother of H reported. Many were informed in what they considered an unprofessional manner. The mother of E overheard nurses discussing the ‘profound deafness’ of her child in the corridor.
Different Reactions of Fathers and Mothers
Fathers tended to see the deafness in a pragmatic way. Father of E noted, ‘It was very much “we can fix it”. We will give him hearing aids and that will fix the problem’. The father of B simply stopped speaking to his daughter once he found out she was deaf. The mothers of C, D, E, and G reported sadness at their lack of bonding with the child. The reaction to the diagnosis of all mothers was emotional and they sought emotional support.
Need to Grieve
The need to grieve was expressed by all parents. The parents of the younger children acknowledged that they did not as yet have enough time to grieve. With the pressure of having to make choices about such concerns as communication and school, the mother of E expressed that ‘there was no permission to grieve’. Those whose children were in their late teens or early twenties at the time of interviewing found that the grieving process took time. The mother of C said, ‘There is a long process of mourning; sometimes you think that the process is finished and again there are difficulties. As the years go on things get a bit easier’. The mother of two deaf children, A and B, now in their late teens and early twenties, said that ‘thinking back it impacted more than I realised. Because at the time I thought, “what do I do now?” That grieving process I didn't go through. It surfaced 10 and 15 years later’.
Theme 2: Model of Deafness — Medical or Sociocultural Model
Although individuals within the deafness continuum have their unique personal identity, the diversity of deafness and its meaning is often managed by situating deafness within distinct models (Padden & Humphries, Reference Padden and Humphries2005; Scheetz, Reference Scheetz2003; Woodward, Reference Woodward1972). The medical view of deafness focuses on the hearing loss itself and deafness is seen as a disability. The sociocultural model focuses on the social and cultural experience of being deaf in a society in which the majority of individuals are hearing. Deafness is seen as a linguistic and ethnic minority culture.
The parents agreed that deafness should not be viewed as something ‘to be fixed’ (father of E), or as ‘a medical problem’. The medical approach reduces the child to a ‘pair of ears’ (mother of E) needing repair. The mother of H summarised her feelings on the medical approach:
I would like the whole process to have been different. It was like we’ll fix it with hearing aids. And they will fix it with the cochlear implants later. I would like more information as to what the kid's life would be like. They told us that ‘when you stick hearing aids in, then everything will be all right’.
Theme 3: Australian Sign Language
Sign language (or sign) is a language that uses manual communication and body language to convey meaning, possesses its own morphology and syntax, and supports the full range of expression of thought as spoken language can (Schembri & Johnston, Reference Schembri, Johnston, Bayley, Cameron and Lucas2013; Stokoe, Reference Stokoe1960). Just as there is no one universal spoken language, there is no one universal sign language. Statements in this paper that mention sign or sign language refer to Australian Sign Language (Auslan), the sign language of the Australian Deaf community. The Australian Federal Government recognised Auslan as a community language in 1991 in the Australian Language and Literacy Policy (Australian Government Department of Employment, Education and Training, 1991), and the first Auslan dictionary was published in 1989 (Johnston, Reference Johnston1989). Australian deaf children use a range of communication modalities dependent on the age of onset of hearing loss, family communication and school placement. These modalities include Auslan, Signed English (a form of sign language using English syntax rather than the syntax of Auslan), and oral/written English.
All the parents, when asked what they would do differently if they had their time back, said they would learn Auslan and teach it to their child as soon as possible. The mother of E noted that Auslan gave the concept of language to the child: ‘Sign gave him immediate access to language’. Many parents said that introducing Auslan to the child opened up a line of communication and that frustrations were reduced.
It was basically all medical, a waste of time until we learnt sign language. Once we learnt to communicate with Paula [pseudonym used for child B], communicate all the time, fully with Paula, all the problems went away; the anger, the aggression, the distance. Once we had a full communication with her, all the problems dispersed. (Mother of child B)
Deaf Identity, Deaf Culture and Auslan
In the signing environment the child was accepted for what he was, and ‘not something that needed to be improved and changed’ (mother of E). Learning sign gave many of the children a sense of identity and confidence.
Auslan was reported to be an important passport to the Deaf community, which comprises deaf individuals who share common beliefs, values, and a common way of interacting with each other and with hearing people (usually through sign language). Parents of children who signed saw them as being bicultural, but more comfortable in the Deaf community. In general, those parents who knew sign language were more integrated into the Deaf community and felt more accepted than those who had poor or no signing skills. Meanwhile, parents of those children who used both oral and sign communication (Auslan and/or Signed English) tended to gravitate to the hearing world. The mother of child C, who communicated comfortably with both sign and speech, noted that ‘he is not a capital D deaf. He sees himself as a small d deaf’.
When the whole family adapted to deafness by learning Auslan and integrating themselves in the Deaf community, as in the case of the family of A and B, communication, self-esteem and education were enhanced. Both A and B were studying at university at the time of the interview.
Concerns with Auslan
When some of the children got an opportunity to learn more signs at school they very quickly became more fluent than their parents. This caused frustration for both child and parents.
I’m getting more tantrums now, because her sign is so much better than mine. There is a lag. I did classes at TAFE. But she has gone way ahead of me. When Nuala [pseudonym used for child I] comes from school, when she has learnt new signs and she is signing to me, I don't understand. And then she pulls my ears down because she reckons I can hear so maybe I will understand the signs then. (Carer of child I)
When the child reached the age of 17 or 18 and was no longer in school, it was difficult to find people with whom to communicate through Auslan, especially if their signing was poor, as most Australians are unable to converse in Auslan (Johnston, Reference Johnston2004).
It was often difficult to find someone to teach the child to sign Auslan fluently, especially for those living in a remote area. The mother of H, who lived in a rural setting, learnt Auslan from a book and therefore often made the signs incorrectly.
I had a booklet to work from Auslan, which I proceeded to do wrong, not all of them, but some of them and that's what I worked from. I had no exposure to deaf people. We were living in the countryside.
Parents found it hard financially to have a teacher come to the family and teach them Auslan.
Some hearing siblings took Auslan on and became bilingual, whereas others rejected it. Some parents ‘still felt a bit guilty’ (father of J) about not having learnt Auslan better, especially when their children became fluent and they couldn't communicate with them as fluently as they would have liked.
Theme 4: Cochlear Implant
Parents’ satisfaction with outcomes for CI varied. On the positive front, Parents of C and D mentioned that the child was more coordinated after the CI operation. Indeed, the mother of C noted:
The pivotal part of Michael’s [pseudonym used for child C] development, I believe, was getting the cochlear implant. Because he was so frustrated he couldn't make us understand him. It may have been six months, but everything clicked on. He realised that there were words for what he wanted. If he wanted to drink there was a word for drink.
Many parents, however, reported pressure to have an implant from both the medical world and marketing consultants. The parents of E resented booking MRI appointments without their endorsement, and felt ‘almost harassed’ into having a CI. They ‘felt battered and bruised by the system’. The father of E noted that the doctors ‘were incredulous that I would do anything besides the CI’. E's parents abandoned the CI route. The need to digest the fact that their child was deaf and the need to grieve meant that many parents did not want to be rushed into making choices too soon. The mother of G, aged 9 at time of interview, regretted getting the implant, noting
I think the stress of the operation plus hearing were very stressful for her . . . I am still not convinced that it was the right thing to do for her. She would still prefer not to wear it and she loves her peace. She does hear the sounds when she has the CI on. But as soon as she comes home from school, she wants it off. I don't know if we are being a bit slack that we just let her not wear it. But she gets stressed out with all the background noise.
The father of D reported dissatisfaction with the technical support in the school setting and manufacturer backup. Parents of A, F and J reported that their deaf children were asked if they wanted the implant when the children reached their teens and twenties, and the children were very adamant that they did not. The children felt they were already functioning quite well without it.
CI and Oral Language Training
The mother of C felt that the reason for her son's success with the implant was her intensive language training with him.
I worked with him every day at home. I would talk to him all the time. We would go shopping he would pick something up, and he would learn the words . . . apple, orange . . . etc. I would never stop. People thought I was mad. He became a lot less frustrated . . . It also helped his confidence.
C's parents were told by the school not to sign or gesture with him. They did not do so for a while. His mother felt, however, that having some signs to confirm meanings when things were unclear would help communication, so she learnt Auslan and so did her son. Having both sign and speech not only helped his communication, but also opened him up to having deaf friends. He is bilingual.
The father of K noted, ‘There is no point putting the CI into a child if they are not going to do the practice for the oral. It's not going to work’. D's parents were not aware of the intense oral practice necessary to support CI. Because child D had not had the same intensive language training as C had, he was often unable to follow the gist of conversations. At 15, his mother now believes he needs to learn sign so as to enhance his communication skills. He has poor syntax and only his parents and one friend can really speak to him as they speak his language, what she called ‘Martin speech’ (pseudonym used for child D).
Theme 5: Needs of the Child at Various Life Stages
Children have different needs at different stages of life. At 18 months, the mother of H said that pointing to things and gesturing no longer satisfied communication needs and both she and the child became frustrated and needed a language. Many parents noted that disciplining the deaf child had to be done in a different fashion to hearing children.
Another time of change is in early adolescence when ‘children change the way they play, they all sit around. They don't play, they sit around and talk about boys’ (mother of B). A further challenge in high school was English comprehension, syntax, punctuation, and subjects that involved a lot of conceptual reading. Parents of boys in particular tended to focus on sports and avoid the difficulties of subjects that required a more complex form of communication.
Parents, notably those of older deaf children, stressed the importance of remembering that the child's needs are long term. The father of A and B noted that
In the end they have to live their lives. We will be with them until they are 17, 18, 19 . . . and then they are out. But they have another 70 years as their own people. The school environment is good but then they have 60 years in the community.
Discussion
In this study, hearing parents shared their emotional and practical experiences of parenting a deaf child. The impact of being informed that one's child is deaf and the grief and sometimes unintended rejection towards the child that parents reported, are consistent with previous findings (Hardonk et al., Reference Hardonk, Desnerck, Loots, Van Hove, Van Kerschaver, Sigurjónsdóttir and Louckx2011; Punch & Kidd, Reference Punch and Kidd2001). Two mothers of deaf children (A and B, and J), now in their late teens and early twenties, noted that they were only now coming to terms with the grieving process and that this sometimes takes many years.
An important contribution to the field was the inclusion of the fathers’ voices, in contrast to previous studies such as those conducted in England (Young & Tattersall, Reference Young and Tattersall2007), Belgium (Hardonk et al., Reference Hardonk, Desnerck, Loots, Van Hove, Van Kerschaver, Sigurjónsdóttir and Louckx2011) and Canada (Fitzpatrick, Angus, Durieux-Smith, Graham, & Coyle, Reference Fitzpatrick, Angus, Durieux-Smith, Graham and Coyle2008) where UNHS had already been implemented, which focused only on the mothers or on the parents as a dyad. There was a consistent disparity in the way the mothers and fathers adjusted to the identification of deafness in their child. The mothers employed an emotional strategy, whereas the fathers consistently had a pragmatic reaction. This difference sometimes led to marital tension. The mother of child D noted, ‘marriages can fail; it is a tough road. Males look at it very differently’. Mothers displayed heightened sensitivity and were aware of the struggle with their motherhood identity (Kobosko & Zalewska, Reference Kobosko and Zalewska2011).
Added to the distress of their new role, parents reported being poorly informed of their child's deafness and were often confused by the medical terminology used by the health professionals. Counselling would have been useful, in the form of meeting with other parents who had been through the same experience or talking with someone who has an understanding of deafness from many perspectives and, ideally, some personal experience with it. This is in line with findings by Hardonk et al. (Reference Hardonk, Desnerck, Loots, Van Hove, Van Kerschaver, Sigurjónsdóttir and Louckx2011), where one of their participants referred to ‘some sort of in-between step, somewhere that you could turn for some support’ (p. 313). Access to personal and social resources is associated with significantly lower stress experiences (Hintermair, Reference Hintermair2006; Young & Tattersall, Reference Young and Tattersall2007). Parents reported that they could benefit from behaviour management strategies at various stages of the child's development. These findings indicate the necessity for parents of children diagnosed with deafness to have access to tailored counselling services.
According to Talay-Ongan (Reference Talay-Ongan2000), the authoritarian professional model is no longer the preferred option in special education. Empowerment of families and trust and respect are achieved by involving the parents in a relationship of partnership with the professionals. Theme 2 is consistent with this viewpoint. Gaining informed advice tailored to the particular family and child, and listening to the parents, as well as the adoption of a sociocultural perspective of deafness by the professionals, where deafness is celebrated rather than merely tolerated, were viewed as important. This attitude will no doubt empower the parents and facilitate support structures for the families (Bortoli & Bynes, Reference Bortoli and Bynes2002; Young & Tattersall, Reference Young and Tattersall2007). Musselman and Kircaali-Iftar (Reference Musselman and Kircaali-Iftar1996) hypothesised that children with advanced spoken skills have parents who view deafness in their child as a challenge and accept it, whereas children with low spoken skills have parents who view deafness as a difference to be accommodated. DesGeorges (Reference DesGeorges2003) noted that the end point of the so-called ‘adjustment’ to having a deaf child is not acceptance, but positive action in the form of advocacy for both the child and family. Indeed, families who accept and embrace their child's deafness have deaf children with higher self-esteem than those that do not (Bat-Chava, Reference Bat-Chava2000; Maxwell-McCaw, Leigh, & Marcus, Reference Maxwell-McCaw, Leigh and Marcus2000). Communication between deaf children and their families is influenced by familial adaptation to deafness. Difficulties in communication between hearing parents and their deaf children may result in less than optimal psychological health in the children (Cornes & Brown, Reference Cornes and Brown2012).
With regard to communication mode, the ‘either/or’ approach to spoken or sign was described as dissatisfying, unreasonable and unhelpful to parents. Other studies have reported similar findings (Archbold, Sach, O’Neill, Lutman, & Gregory, Reference Archbold, Sach, O’Neill, Lutman and Gregory2008; Watson, Henggleer, & Whelan, Reference Watson, Henggeler and Whelan1990). Theme 3 echoes the report by all participants who, when asked what they would do differently, said they would learn Auslan and teach it to their child as soon as possible (see also Spencer, Reference Spencer1998). Dissatisfaction with not being offered sign language as a viable option by the professionals and the cultural implications of this repeat previous findings (Hardonk et al., Reference Hardonk, Desnerck, Loots, Van Hove, Van Kerschaver, Sigurjónsdóttir and Louckx2011; Young et al., Reference Young, Jones, Starmer and Sutherland2005). UNHS increases the emphasis on development of exclusively spoken language (Archbold & Mayer, Reference Archbold and Mayer2012) and indeed the expectation of more normalised spoken language development among parents of deaf children (Leigh, Reference Leigh, Marschark and Hauser2008). Sign is often only introduced in these contexts when the child's verbal linguistic skills fail to develop as hoped (Mayer & Leigh, Reference Mayer and Leigh2010). Thus access to sign language is compromised in terms of optimal timing and input. Indeed, it has been recommended that all deaf children with CI have access to both sign and spoken languages so as to exploit both modes of language simultaneously (Lucas & Valli, Reference Lucas and Valli1992).
Five of the children had CI, but parents of only one of them felt that outcomes from implantation had met their expectations and that child, C, had intensive continuing oral training by his mother to the point where the child's prosody was excellent. C had also learned Auslan. High levels of language competence among deaf adolescents has been found to be related to mothers’ investment in oral language training (Kobosko & Zalewska, Reference Kobosko and Zalewska2011). Zalewska (Reference Zalewska1998, as cited in Kobosko & Zalewska, Reference Kobosko and Zalewska2011) noted that mothers of deaf children develop an identity as a teacher and speech-clinician. The comments of the four sets of parents who were less satisfied with the implant reflect the fact that many parents do not always recognise how much ‘work’ is involved in teaching their child sound recognition, language and speech development when there is early CI (Svirsky, Robbins, Kirk, Pisoni, & Miyamoto, Reference Svirsky, Robbins, Kirk, Pisoni and Miyamoto2000). Parents reported that they were given unrealistic expectations of the implant's potential, reiterating previous findings (Archbold et al., Reference Archbold, Sach, O’Neill, Lutman and Gregory2008; Hardonk et al., Reference Hardonk, Desnerck, Loots, Van Hove, Van Kerschaver, Sigurjónsdóttir and Louckx2011). The dissatisfaction with the management of the technology of the CI in the classroom, as noted by the father of child D, is an issue that has been raised by others (Archbold & Mayer, Reference Archbold and Mayer2012; Archbold & O’Donogue, Reference Archbold and O’Donoghue2007; Ben-Itzhak, Most, & Weisel, Reference Ben-Itzhak, Most and Weisel2005). It is not known how much exposure to auditory spoken language is necessary for children to experience optimal benefit from CI (Spencer & Marschark, Reference Spencer, Marschark, Marschark and Spencer2003). Parents believed that as soon as their child received the implant he or she would hear, much like one might put on glasses to improve vision, and therefore there would be no issue about grief or loss. However, they were blindsided and experienced emotional upheaval. This would imply the need for counselling, particularly as implantation may now be carried out soon after birth, before the parents have come to terms with the diagnosis.
With UNHS recently put in place in WA (Ear, Nose and Throat Advisory Group, 2011), the circumstances in which the accounts in this study were formed have changed. However, even in contexts where UNHS was already implemented (Hardonk et al., Reference Hardonk, Desnerck, Loots, Van Hove, Van Kerschaver, Sigurjónsdóttir and Louckx2011), comments made by parents are similar to those of the current study: necessity of adequate support at diagnosis to minimise parental distress, dissatisfaction at the limited range of alternatives with regard to communication mode offered, the absence of information on aspects of deaf culture and communication through sign language, and the negative effect of the medically focused decision-making context on the parents’ wellbeing. The current findings are timely and informative in WA in terms of employing appropriate and suitable care interventions and training programs in the necessary knowledge and competencies for professionals in the field.
The experiences of the participants highlight the need to be consistently reminded of the basics that so many professionals take for granted (Ben-Itzhak et al., Reference Ben-Itzhak, Most and Weisel2005). A central message for professionals working in this area is realising the importance of honouring each parent's way of absorbing the information that their child is deaf, and taking the cue from them as to how to proceed in order to provide the appropriate, informed and unbiased support that will ultimately lead to a partnership and empowerment of families. Although the findings highlight earlier work on parental needs (Yucel, Derim, & Celik, Reference Yucel, Derim and Celik2008), a strength of this study is that it moves beyond one care event (Archbold et al., Reference Archbold, Sach, O’Neill, Lutman and Gregory2008; Fitzpatrick et al., Reference Fitzpatrick, Graham, Durieux-Smith, Angus and Coyle2007) and the early care of the child (Hardonk et al., Reference Hardonk, Desnerck, Loots, Van Hove, Van Kerschaver, Sigurjónsdóttir and Louckx2011) to include insights from the life span of the child, from early schooling through the teens and into adulthood.
The study design has a number of limitations. Firstly, it is recognised in the literature that parents’ stress responses and coping strategies to the impact of having a deaf child vary (Palfrey, Walker, Butler, & Singer, Reference Palfrey, Walker, Butler and Singer1989; Punch & Kidd, Reference Punch and Kidd2001). Level of education and income levels may influence this (Pipp-Siegal, Sedey, & Yoshinaga-Itano, Reference Pipp-Siegal, Sedey and Yoshinaga-Itano2002). In this regard, a potential limitation of this study is that participants self-selected to participate. Therefore no effort was made to control level of education or socioeconomic status of parents. Only families who were proactive and had strong relations with the WA Deaf Society or WAIDE were included. In addition, self-selection may echo their identification with being parents of a deaf child, reflecting a preoccupation with this role. It is recognised that the findings of qualitative research cannot be generalised beyond the specific sample and setting; however, it is acknowledged that results may identify trends that may apply in similar situations (Creswell, Reference Creswell2007).
Second, it cannot be presumed that all parents’ experiences of having a deaf child are equivalent. A number of extraneous variables that may impact include the age of the parents when the child was born, the cause of deafness, the birth order of the deaf child, number of children in the family, number of deaf children and presence of grandparents in the family, to name a few. These variables were not included as selection criteria for this study as the focus was on the general experience of hearing parents with deaf children. However, it cannot be assumed that these variables did not influence the ways in which the participants experienced their role. The mother of child A and B noted that once the second child was diagnosed as deaf, she and her husband decided to become a ‘deaf family’, as she put it, enrolling themselves, their two hearing children and two deaf children in Auslan classes, and making a conscious decision to communicate in both sign and spoken language simultaneously in the home.
Third, the study design was based on parental perspectives on past events and thus involved reconstructing events, decisions and experiences as a consistent reality. Recall bias creeps into retrospective memory (Aldrovandi, Reference Aldrovandi2009). Although a life-grid method was loosely applied to help minimise recall bias, this is certainly not foolproof (Berney & Blane, Reference Berney and Blane1997; Blane, Reference Blane1996).
Finally, an important component of qualitative research is the involvement of the researcher as part of the research process. Although reflexive rigour was ensured through an audit trail documenting the research process, a reflective diary and triangulation, and while direct quotations are included to enable the reader to assess the trustworthiness of the interpretations, the themes highlight the co-constructive nature of qualitative research and thus the findings of this study reflect one version of reality and may be interpreted differently by others (Smith, Reference Smith and Smith2003).
The needs of a group of hearing parents of deaf children have been identified. From this research, it can be posited that how a hearing parent is informed of his or her child's deafness, how they are helped to understand deafness, the choices of communication and the emotional and informed support they receive may influence not only the life of their child, but their own health and that of their family.
This is an emerging era for deaf children in WA and with that arise new issues for their parents and for professionals in the area. The voices of the parents in this study can help inform these challenges and may help those involved to respond flexibly to the language, education, cognitive and social development of the child at all stages of life. Beyond language and education, issues of socialisation, emotional development and identity over the life span give ample opportunity for further investigation. As deaf children of deaf parents are found to be in line with the hearing child in terms of cognitive, social and communication development (Marschark & Spencer, Reference Marschark and Spencer2010), these parents could potentially offer much to the hearing parents of deaf children. Further research combining the experiences of the deaf children who have hearing parents at various stages of life is needed to determine the full potential of the challenges of parenting a deaf child in a hearing world.
