International Journal of Audiology
ISSN: 1499-2027 (Print) 1708-8186 (Online) Journal homepage: http://www.tandfonline.com/loi/iija20
Perceptions of the support that mothers and fathers of children with cochlear implants receive in South Australia: A qualitative study Rachel M. Roberts, Felicity Sands, Anne Gannoni & Tony Marciano To cite this article: Rachel M. Roberts, Felicity Sands, Anne Gannoni & Tony Marciano (2015): Perceptions of the support that mothers and fathers of children with cochlear implants receive in South Australia: A qualitative study, International Journal of Audiology To link to this article: http://dx.doi.org/10.3109/14992027.2015.1060641
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Date: 14 November 2015, At: 15:41
International Journal of Audiology 2015; Early Online: 1–9
Original Article
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Perceptions of the support that mothers and fathers of children with cochlear implants receive in South Australia: A qualitative study Rachel M. Roberts*, Felicity Sands*, Anne Gannoni† & Tony Marciano† *School
of Psychology, University of Adelaide, Australia, †Women’s and Children’s Hospital, North Adelaide, Australia
Abstract Objective: The study explored the perceptions of parents of children with cochlear implants regarding the support they have received. Design: Semi-structured interviews were conducted and the resultant data was subjected to thematic analysis. Study sample: Participants were 12 mothers and four fathers from South Australia with a child with cochlear implants. Results: Three major themes emerged: (1) a journey into a new world for parents, (2) services meet many but not all needs, and (3) parent connections and relationships. Most parents were satisfied with surgical, audiology, and early intervention services as well as specialist hearing-impairment schools, and perceived this support as helpful and adequate. However, some parents were critical of non-specialized teaching staff, and technical support for hearing devices. Parent recommendations for improved service provision included increased support, improved information, and additional professional services. Conclusions: Parent contributions suggest a need for service providers to develop support that is not only child-need oriented, but parent-need oriented, to better address service gaps. With a deeper understanding of parents’ experiences and needs, service providers will have a greater capacity to develop a broader model of service that enhances parental engagement and coping.
Key Words: Cochlear implant; hearing impairment; parent; support service; needs; intervention Given that approximately 1 per 1000 babies are born with a significant hearing impairment in Australia and another 2.3 per 1000 children acquire a hearing impairment through illness and other causes, child hearing loss is an important issue (Australian Hearing, 2010). Beginning in 2000 the universal neonatal hearing screening (UNHS) program was rolled out across Australia, with South Australia establishing its own program to screen for congenital hearing impairment by 2006 (Children, Youth and Women’s Health Service, 2006). Prior to the UNHS program, the typical procedure in Australia was to screen children identified as at risk, for example, children with low birth weight; however, only 50 to 60% of children were identified in this way (Commonwealth of Australia, 2008). Research also indicated that early identification of hearing loss, along with early intervention including fitting of acoustic devices and habilitation, results in speech perception outcomes, language outcomes, and socio-emotional development that is more consistent with normally-hearing peers (Calderon & Naidu, 2000; Moeller, 2000; Yoshinaga-Itano, 2003). Thus, the roll out of the UNHS program was considered key to better language and socio-emotional outcomes. Data from the UNHS program shows that in 2013, 0.25% of newborns in South Australia were diagnosed with a sensori-neural hearing loss (51 of 20, 515 children). Of the children identified through the screening program each year, on average, there are six children
with bilateral severe to profound hearing loss referred to the Audiology Unit and on average four to six of these referrals are implanted each year (data provided by T. Marciano, Audiology Unit Coordinator, Women’s & Children’s Network). Previous research has demonstrated that once a child has been identified as having a hearing impairment, parents may experience stressors including feelings of grief and loss over their child’s diagnosis, making choices about hearing devices, and obtaining the appropriate support services (e.g. communication therapy) (Anagnostou et al, 2007; Sach & Whynes, 2005; Zaidman-Zait, 2007). Approximately 90% of parents of children diagnosed with hearing impairment have normal hearing themselves, and as such, will have had little exposure to deafness (Christiansen & Leigh, 2004). As a consequence, they are likely to have limited knowledge in this area and are reliant on the information and support received from external sources (Christiansen & Leigh, 2004). For parents of children who have severe or profound hearing impairment, there is the added pressure after diagnosis to make a decision for their child to have surgery if cochlear implantation is deemed a suitable option and this can be a difficult decision for parents to make (Zaidman-Zait, 2008). Adjustment to a stress experience may be dependent upon cognitive appraisal (how a person interprets a situation) and what coping strategies are utilized (Lazarus & Folkman, 1984). The stress and
Correspondence: R.M. Roberts, School of Psychology, University of Adelaide, North Tce., Adelaide, 5005, South Australia, Australia. E-mail: [email protected] (Received 15 March 2015; accepted 5 June 2015) ISSN 1499-2027 print/ISSN 1708-8186 online © 2015 British Society of Audiology, International Society of Audiology, and Nordic Audiological Society DOI: 10.3109/14992027.2015.1060641
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Abbreviations
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SA UNHS WCH
South Australia Universal neonatal hearing screening Women’s and Children’s Hospital
coping model (Lazarus & Folkman, 1984) suggests that parents who interpret their child’s diagnosis of hearing impairment as a challenge are more likely to adjust well to their child’s disability. Personal coping strategies, either emotion-focused (e.g. utilizing social support) or problem-focused methods (e.g. seeking out information), potentially act as a buffer against adverse experiences (Lazarus & Folkman, 1987). Family adjustment has also been viewed in a broader context, with emphasis on the interactions between immediate family members, their social support network and external influences (e.g. community resources). These interactions have a combined impact on the family’s adaption to new roles in light of significant change, such as child deafness (Bronfenbrenner, 1979; Jackson et al, 2008). Hearing impairment impacts the entire family and rather than having a traditional childspecific focus, support needed to be ʽwidespreadʼ (e.g. informational support, financial resources, recreational opportunities) and family focused to reduce stress and enhance coping (Jackson et al, 2008). The perceptions of parents regarding support are important to understand to ensure services meet parent needs, and as such, assist family adjustment. Research has outlined a range of parent needs that parents of children with disabilities have in common, including a need for information, emotional support from professionals, and informal and formal social networks and support groups (Rahi et al, 2004). In research with parents of children with hearing impairments, similar support needs have been reported. A UK study found unmet needs for information and for linking parents to social networks and support groups (Minchom et al, 2003). Likewise, in a US study parents reported that information, social and emotional support, and educational advocacy were their most important needs (Jackson, 2011). Work in Turkey has also reported that among parents of children with hearing impairment who received auditory verbal therapy, there was a significant unmet need for information and support (Yucel et al, 2008). This finding suggests some common underlying needs for parents of children with hearing impairment, regardless of country. While parents’ experiences and their perceptions of services have been a focus in research for some time, this has often included parents of all children with diagnosed hearing loss. Research focusing on the support needs of parents of children with cochlear implants has suggested that many unmet needs overlap with the needs of parents of children with hearing impairments in general, such as: the need for information regarding hearing impairment and assistance available; the need for counselling for parents focusing on their children’s development and behaviour; and individual, couple, and family therapy (Spahn et al, 2001). However, needs specific to parents of children with cochlear implants were also reported, such as: wanting to attend groups to meet other parents of children with cochlear implants (Spahn et al, 2001); needs for information and counseling in relation to technology choices for their children; as well as concerns about the risks of cochlear implantation surgery and the discomfort and pain for their child (Fitzpatrick et al, 2011). Parent needs for emotional support and the opportunity to meet parents of other implanted children were also reported by Most and Zaidman-Zait (2003), while support for the siblings of the child
with cochlear implants was recommended by parents in a study by Peñaranda et al (2011). The purpose of this qualitative research is to explore the perceptions of South Australian mothers and fathers of children with cochlear implants regarding the support and services they have received from the time their child or children were first diagnosed with a hearing impairment. In particular, this research considered whether or not the informal (family, friends, community) and formal (government and private sector services) support and services parents received were perceived as helpful and adequate. We aimed to recruit a representative sample of parents from the population of parents of children with a cochlear implant in South Australia. As a result of this study, service providers’ knowledge of families’ needs may be expanded, thereby potentially improving support services and family adjustment.
Method Recruitment and sampling This study was approved by the Women’s and Children’s Health Network Research Ethics Committee and the School of Psychology, University of Adelaide Human Research Ethics Committee. This research was conducted through the Paediatric Cochlear Implant Program, at the Women’s and Children’s Hospital in Adelaide, South Australia, which has been implanting children since 1991. The program provides surgical and audiology services and is the only implantation surgical service in South Australia. Parents of children (17 years of age and under) with cochlear implants were invited to participate. All children in the study were fitted with high powered hearing aids by Australian Hearing (national hearing-aid provider for children in Australia) as per their fitting standard for severe to profound sensorineural hearing loss. All children were recipients Table 1. Child and family demographics for study participants and for all SA children with cochlear implants. Study participants N ⫽ 16 parents of 17 children with cochlear implants
Characteristic Parent age (years) Parent years of education Child age (years) Child gender
Mean (standard deviation)
Range
42.8 (8.7) 12.4 (1.9)
30–62 10–18
9.5 (5.2) 1–16 11F, 6M 65%F, 35%M N
Residence Urban Rural Child identified via UNHS program Age at diagnosis Before 12 months After 12 months Cochlear implant Unilateral Bilateral
%
10 6 6
62 38
7 10
41.1 58.8
12 5
70.5 29.5
Database of all SA children with cochlear implants N ⫽ 160 children
85F, 77M 52%F, 48%M N
%
120 39
75 25
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Parent perceptions of services for children
of the Nucleus Cochlear Implant manufactured by Cochlear. The CI24 models of implant were used, ranging from the CI24M to the CI24RE. All participants who indicated an early expression of interest in the study were interviewed. Initial expressions of interest were mostly from mothers of children under 12 years of age, thus maximum-variation sampling was used to balance out the gender-ratio to recruit fathers, as well as parents of adolescents who were also under-represented in the initial pool of participants. Twelve mothers and four fathers from a total of 14 families agreed to participate in the study. In two families both the mother and father were interviewed, in 10 families the mother was interviewed and in two families the father was interviewed. One participant had a hearing impairment. In total, 16 parents participated. Most families had just one child with cochlear implants (12 families) but one family had two children with cochlear implants and one family had three children with cochlear implants. The 14 families in the study had 17 children with cochlear implants. A summary of family and child demographics is presented in Table 1 with further details of participants including participant number, presented in Table 2.
Data collection Data were collected between March and July 2012 through semistructured interviews, each between 30 and 90 minutes in duration (mean ⫽ 66 minutes). They were conducted face-to-face or via telephone, depending on participants’ preferences. Demographic
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questions were followed by a set of open questions (see supplementary material Interview questions available in the online version of the journal. Please find this material with the direct link to the article at: http//www.informaworld.com/10.3109/14992027.2015.1060641). These questions were based on topics derived from a review of the hearing-impairment, cochlear implant and service support literature. With parents’ permission, all interviews were digitally recorded.
Data analysis Thematic analysis was used to examine parents’ descriptions of their experiences in a rich and cohesive manner. Thematic analysis is a method for identifying, analysing and reporting thematic patterns within data (Braun & Clarke, 2006). Themes are meanings that run through the data. In accordance with the procedure of thematic analysis outlined by Braun and Clarke (2006), the interview data was transcribed verbatim. Following this, transcripts were read and initial ideas about the data were noted for the purpose of familiarization. Content related to parent’s perceptions of support and services were highlighted and coded. Codes are labels or descriptions of the content of the material. Next, codes were sorted into categories. Categories are groups of similar data (codes). Interviews were conducted until category saturation was reached, that is, when no new categories of data emerged from the preceding two interviews. Finally, themes and subthemes were identified from the categories, that is, data analysis aimed to ‘elicit meaning or the essence of the experience for the participant’ (Morse, 2008, p.727). Initial data
Table 2. Participant characteristics.
Parent interviewed
Children with hearing impairment (gender, age)
Age at diagnosis
1&2
mother & father
girl, 6
1 month
3
mother
girl, 1
Participant number
4 5 6
mother mother mother
Age at implant
Position in family
1 month
Right, 10 months Left, 2 years 10 months
4th of 4
boy, 3
1 month
11 months
3rd of 4
boy, 8
12 months
18 months
1st of 4
boy, 15 girl, 8 girl, 2
13 months 2 years 1 month
Only child Only Child 2nd of 2
girl, 4
1 month
20 months 5 years, 1 month Right, 15 months Left, 2 years, 4 months Right, 3 years, 6 months Left, 4 years 5, months Left, 1 year, 11 months Right, 9 years, 6 months Right, 2 years, 6 months Left, 14 years, 9 months 3 years, 5 months 10 years, 3 months 7 years, 4 months 2 years, 4 months 2 years 1 year, 11 months 2 years, 9 months
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mother
girl, 11
15 months
8&9
mother & father
girl, 16
18 months
10 11 12 13 14 15 16
mother mother mother mother father mother father
girl, 5 girl, 14 boy, 12 girl, 5 boy, 14 girl, 16 boy, 14
12 months 21 months 2 years 20 months 1 month 21 months 18 months
5th of 5
Hearing status of siblings Older sibling 3rd of 5 has a bilateral moderate loss 2 older brothers 3rd of 4 and 1st of 4 have a bilateral profound loss 2 siblings with bilateral profound loss 4th of 4 and 1st of 4th 2 siblings with bilateral profound loss, 3rd of 4 and 4th of 4
2nd of 2
Sibling has a bilateral severe to profound loss Sibling has a bilateral severe to profound loss Normal hearer
2nd of 2
Normal hearer
1st of 2
Only child 2nd of 3 Only child 3rd of 5 1st of 3 2nd of 2 3rd of 3
Normal hearers Normal hearers Normal Hearers Normal hearer Normal hearers
Location of residence urban rural
rural urban urban
urban rural rural urban rural urban rural rural urban
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analysis was completed by FS and then the raw data and identified categories and themes were reviewed by co-authors RR and AG. Minor differences of opinion regarding the results were resolved through discussion in a face to face meeting with the three researchers. Findings are presented by themes, with interview excerpts from participants that illustrate the relevant theme. Where themes were primarily reported by a subgroup of participants (e.g. rural vs. urban, mothers vs. fathers, parents of older vs. younger children, diagnosis via UNHS or other route, bilateral vs. unilateral implantation) this is noted.
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Results In this study three main themes emerged from the experiences of 16 parents: (1) a journey into a new world for parents; (2) services meet many but not all needs; and (3) parent connections and relationships. All 16 parents discussed all three main themes. Within each theme, a number of subthemes emerged. Only subthemes discussed by most parents are discussed further in the paper. However, all subthemes that were present in the data are listed in Table 3. Subthemes which are not discussed further are defined in Table 3.
A journey into a new world for parents All parents discussed their experiences of making their way with their child through a pathway of hearing-impairment detection and diagnosis, as well as cochlear implantation, habilitation and schooling options, all the while trying to gain understanding of a disability most had limited knowledge of. Parents referred to their experiences as a ‘journey’ for example, a mother reflecting about her final appointment with her daughter before she moved to the city for her final school years said:
‘It had been a real journeyʼ (Participant 11, urban mother of girl aged 14). Parents also referred to feeling like they were heading into a ‘different world’, for example a mother said: ‘You’re thrown into a whole different, it’s a different world.ʼ (Participant 15, rural mother of 16 year old girl); and another said having a child with a hearing impairment: ‘Just opened my world up in a way that I didn’t think it was going toʼ (Participant 11, urban mother of 14 year old girl). Parents also discussed supporting their children through important life stages as they moved from primary school to high school or from high school to work or study. With the intensity of the early years behind them, parents acknowledged their learning and increased level of understanding.
Making life-changing decisions for their child After their child was identified as having a hearing loss, parents reported facing a range of significant decisions that continued beyond their child’s early years. Decisions included: cochlear implantation (unilateral or bilateral), communication methods (e.g. sign language), early intervention service options, and schooling options. Overall, parents generally found the decision making process to be a challenge, although a few found it straightforward. Parents reflected on the factors that influenced their decisions. For example, factors influencing the decision to implant included: limited time frames, benefits of cochlear implantation, wanting their child to speak, future opportunities for their child, future technology, and living in a hearing world. Some parents struggled with this decision, concerned their child might later disapprove:
Table 3. Themes and subthemes. Theme 1: A journey into a new world for parents Receiving the diagnosis Making life-changing decisions for their child Obtaining the right information Intensity of implantation and habilitation Building knowledge of the new world from almost nothing Uncertainty about the future
New barriers to overcome
Parental personal growth as a result of an unexpected journey Theme 2: Services meet many but not all needs Satisfaction with specialist child services Individual professionals who support families are valued Needing to become an advocate Recommendations for improving services Theme 3: Parent connections and relationships Parent-to-parent connections invaluable Family and friends sometimes lack understanding, but rural communities are very supportive
Parents discussed their experiences of detecting child deafness, of the diagnostic process, and the emotions stemming from these experiences. see text see text Parents discussed the intense experience of cochlear-implantation, with its worries and fears, as well as the hard work and commitment required for habilitation post-surgery. see text Parents in transition with their adolescents moving into adulthood looked to the future and expressed concerns about what their children’s future might hold in light of their disability For some parents, transitions in hearing impairment brought barriers not previously encountered. For example, parents reported that their adolescents were no longer able to access some services because of their age. see text
see text see text Parents needed to become advocates for children’s needs. Advocacy was typically related to diagnosis, cochlear-implantation, and the child’s school needs. Parents noted gaps in hearing impairment services and put forward ideas on ways health-care and early intervention providers could improve services. see text see text
Parent perceptions of services for children
‘Then of course you know things like what’s going to happen if we do it and it doesn’t work? Is our daughter when she’s older going to hate us for trying...?ʼ(Participant 2, urban father of 6-year-old)
‘We only thought what we’d seen, you know, as we grew up. Deaf kids went to deaf schools and we didn’t know that our kids could do anything else.ʼ (Participant 6, urban mother of 2-and 4-yearold).
Parents wanted to be sure their decision was the right one, at times, looking to professionals for certainty and being unable to obtain it. Other parents found the decision relatively easy as the potential benefits overrode any risks or concerns:
Parents also discussed gaining expertise of child hearing impairment as a result of their experiences over time and through information gained from both professionals and other parents. For example, a mother spoke about having built her knowledge of how to access services her child needed. She said:
‘We felt […] there was nothing to lose by him receiving a cochlear implant.ʼ (Participant 12, rural father of 12-year-old).
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‘…I know stuff now. At the start I didn’t know and I just accepted what I was given.ʼ (Participant 6, urban mother of 2- and 4-yearold).
Obtaining the right information Interviews revealed parents spent a significant amount of time receiving and seeking out information to help them access appropriate services for their child with a hearing impairment and make the best decisions possible for their children. Most parents were satisfied with the information they received from multiple sources. All parents discussed the types of information received from professionals. Topics typically covered were: cochlear implantation and its potential benefits; early intervention services available; general risks of surgery; and habilitation. Parents had a strong desire to receive information from other parents of deaf children and the internet. As one parent explained: ‘They had a playgroup there with other kids you could see that were deaf and also parents you could talk to. So I needed to see, speak to parents and see how they coped with their deaf child.ʼ (Participant 3, rural mother of 1-, 3-, and 8-year-old) Other sources discussed included: books and pamphlets recommended by professionals, information nights held by early intervention services, and speaking with older children with cochlear implants. Parents described a range of information needs, not all of which were met. Specific information needs included: the child’s communication, academic and social outcomes; tips on managing hearing devices; parenting advice; mapping information; the latest hearingdevice technology; tips on accessing services (e.g. contacting professionals directly, not through reception); and their child’s progress. Other parents spoke of wanting more information about cochlear implant surgery than they received, including what to expect after surgery: ‘On the back of the consent form on your operation day […] there was nothing about implants […]. Like we weren’t really told that the bandage would be so tight. Like when [our daughter] had it, it was so tight her face swelled up and she could hardly see.ʼ (Participant 6, urban mother of 2- and 4-year-old).
Building knowledge of the new world from almost nothing More than 50% of parents expressed an awareness of their lack of knowledge of the hearing-impairment services and deafness as a disability, as they had limited previous exposure to hearing impairment. This initially led to a minimal understanding of the work it would take for their child to progress, what questions to ask professionals, how to access appropriate information, what technical support their child was eligible for, what profound hearing loss meant for their child, and what cochlear implantation was. Some parents had been unaware of future possibilities for their children:
Parental personal growth as a result of an unexpected journey Those parents who had older children were able to look back and reflect on what had occurred. One such reflection was the overall impact of child hearing impairment and the intensity of the experience as heard through comments such as: ‘It’s been hard I must admit, but at the same time we have met so many different people we wouldn’t have met and I think also actually so overall you know it’s been hard, but like sometimes you have your days where you think ʽWhy me?ʼ and other days you think ʽWell, I’m proud that they are speaking so wellʼ and like you know we have done the work to get them there.ʼ (Participant 3, rural mother of 1-, 3- and 8-year-old). Another mother indicated that in the early days she didn’t feel the support was ‘too bad’ at the time, but upon reflection: ‘Because of the cloud you’re living in at times umm at the time I thought I had enough, but looking back later I don’t think I did.’ (Participant 11, urban mother of 14-year-old). Parents also reflected on the meaning and the learning they had derived from parenting a deaf child: ‘It was a real gift and it helped me in so many ways and it made me. I might not stand up for myself and say too much, but it taught me how to stand up for somebody else and be an advocate, so I yeah it, it’s been marvelous actually.’ (Participant 14, rural mother of 14-year-old). Parents not only felt they had broadened and developed their approach to parenting; they had learned more about their child and his or her deafness: ‘I think us as parents have learned what is good about [our son] and there’s some pretty cool things […]. We’ve learned to love that whole thing. I’m actually proud of him and his deafness. Now I don’t shy away from it.’ (Participant 12, rural father of 12-yearold).
Services meet many but not all needs Parents were asked to comment on their experiences, including the difficulties and their satisfaction, with the services provided and accessed in South Australia. Parents reflected on their service provision experiences at an organizational and individual level. Recommendations to improve hearing impairment services made by participants are provided in Table 4.
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Table 4. Summary of parent recommendations for hearing impairment service providers.
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Recommendations for service provision • Increased support For hearing siblings* Counseling (e.g. couple, loss and grief, children’s counseling)* Academic and emotional support for hearingimpaired adolescents* A youth group for hearing-impaired adolescents For professionals to support parents use of sign language with their child at specific times of the day (e.g. when the implant is turned off at bath-time)* • Improved information How to parent hearing and hearing-impaired children* Cochlear implantation surgery* • Professional services A support person/coordinator whose role it is to coordinate appointments after diagnosis; to be a central contact person Services from professionals with personal experience in hearing impairment* Sign language classes* Technical support providers to have a separate division devoted to children’s services Professionals to be aware that adolescents are unlikely to ask for help even if it is required*
Number of parents making recommendation
Parents also pointed out factors that made service access more difficult and led to dissatisfaction. Parents from country and metropolitan areas mentioned driving distance and time as a barrier to service. Other parents discussed the poor timing of services. One mother explained how her adolescent was offered educational support well after the required time. She had to inform the professionals the offer was:
1 4
‘Too little too lateʼ (Participant 15, rural mother of 16-year-old), as her adolescent had run away from home.
13 5 1
For a few parents, services were not available when they were needed (e.g. speech therapy) or the location of the service was inconvenient. These parents discussed needing to actively look for the services that met their specific needs, even if it meant funding the support themselves (e.g. private speech therapy).
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Individual professionals who support families are valued
11 3
3 1 4 1
*Services currently provided in South Australia, although accessibility for families may vary.
Satisfaction with specialist child services Most parents indicated a high level of satisfaction with surgical, audiology, and early intervention services (e.g. auditory-verbal and speech therapy) and perceived these support services as helpful and adequate. When discussing service provision, parents identified components of early intervention services they appreciated. These included: home visiting, family activities organized by the service, and the willingness of those services to extend their knowledge and expertise to other children’s services (e.g. schools). More than a third of parents spoke of their appreciation for the financial support they received through charities and government funding. A sentiment shared by a number of parents was that schools (e.g. with hearing units) and school staff with a specialized knowledge in child hearing impairment were consistently able to meet parents’ and children’s needs. Those that did not were commonly perceived as having a poor understanding of deaf children’s requirements. One parent discussed a teacher’s resistance to support her child’s use of an FM in the classroom: ‘[She] just wasn’t willing to wear the microphone and she didn’t understand how it all worked. They originally had […] a headset one. She didn’t want to wear a headset one.ʼ (Participant 1, urban mother of 6-year-old). In addition, over half of parents were critical of services providing technical support for hearing devices for a variety of reasons (e.g. difficulty accessing equipment necessary for the functioning of cochlear implants).
Parents shared their experiences of the services and support they received from individual professionals attached to a number of different services (e.g. early intervention, hospitals, schools). Parents, particularly those with older children, reflected on the strong personal relationships that had developed as a result of working closely with professionals over a number of years. During discussions, it was apparent that parents valued aspects of individual service, which added to their sense of being supported and understood. For instance, parents appreciated professionals who gave them all the time they needed during appointments, were willing to listen, were honest about possible cochlear implantation benefits, and made themselves available to parents: ‘You know, he made himself open to us. You know, ʽHere’s my home phone number. Here’s my mobile phone number.ʼ (Participant 2, urban father of 6-year-old). In contrast, some parents spoke of their dislike of feeling pushed by professionals who appeared to have their own biased agenda (e.g. bias against signing), or who came across as arrogant or rude. One mother shared what a professional said to her in reference to her daughter with a hearing impairment: ‘[The child was] so annoying I was going to throw her in the bin.’ (Participant 8, rural mother of 16-year-old). Neither did parents appreciate feeling their concerns had been dismissed. On a more positive note, a few parents discussed the ways in which some professionals took on additional roles (e.g. advocate, counsellor), which were not necessarily in their job description: ‘You know [it was] totally out of his field because he’s an audiologist, not a psychologist, you know? He’s probably a better psychologist than some, but without the label.’ (Participant 11, urban mother of 14-year-old). Parents valued the effort some professionals made to broaden their role in order to meet the needs of the parents.
Parent connections and relationships This theme reflected parents’ relationships with others and what made these relationships important during the hearing-impairment process. The subtheme discussed most in-depth by parents was parent-to-parent connections invaluable.
Parent perceptions of services for children
Parent-to-parent connections invaluable Eleven of the sixteen parents discussed connections with other parents with similar experiences. These connections commonly occurred as a result of parents’ contact with early intervention services via playgroups or impromptu get-togethers, which occasionally developed into parent groups. Through these parent-to-parent connections, practical information about bilateral implants, early intervention services and surgery was received:
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‘I knew from other parents that you know to take a buttoned up top or expect that their head’s going to be swollen and they may have a black eye or something. But I knew that from talking to parents and chat groups.’ (Participant 3, rural mother of 1-, 3-, and 8-year-old) Contact with other parents also offered opportunities to compare their child’s progress with other children of a similar age, see the progress of older children, receive tips on how to access appropriate services (e.g. getting appointments), and to observe how other parents coped with a child who was deaf. For some parents these connections with other parents also fulfilled an emotional need as it gave them the opportunity to vent, they felt less alone, and they had the opportunity to talk with other parents about the difficulties they were facing. ‘You only kind of get that [understanding] from other parents that I think have been diagnosed with a child that’s deaf. Because you know they’ve been there done that. Cos it’s a road you’ve never been on and you’re like ‘Well, can I cope with this? What’s the outcome?’ (Participant 3, rural mother of 1-, 3-, and 8-year-old). Most parent connections occurred face-to-face, but one parent sourced her connections with other parents via the internet: ‘I actually came across a chat group […]. So I found them a better support from other parents that had been there done that’ (Participant 3, rural mother of 1-, 3-, and 8-year-old).
Family and friends sometimes lack understanding but rural communities are very supportive Parents discussed how supportive they found their family, friends and local community to be in helping them cope with their child’s hearing impairment. For the majority of parents it was a mixed experience as family and friends were typically sympathetic, but lacked the understanding that other parents of children with hearing impairment possessed. ‘Yeah, I think you find [friends] understanding, but they still don’t quite get it. You only kind of get that from other parents that I think have been diagnosed with a child that’s deafʼ (Participant 3, rural mother of 1-, 3-, and 8-year-old). Other parents noticed a few of their social supports tried to find the ‘silver lining’, as one parent described it, in hearing impairment. This left parents feeling invalidated. According to parents, some social supports responded with such comments as, ‘Well, you’re lucky she’s not blindʼ (Participant 1, urban mother of 6-year-old) And, ‘At least you get [the] carerʼs allowanceʼ (Participant 3, rural mother of 1-, 3-, and 8-year-old).
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Three rural families also described how they were supported through their local community and/or church: ‘Everyone was interested because we were all working together and living together and playing sport together.ʼ (Participant 11, urban mother of 14-year-old; recently moved from rural to urban area). No families from metropolitan areas mentioned receiving this broader level of support.
Discussion For families in which a child has a cochlear implant, parental access to a range of professional, social and emotional supports may promote family adjustment. However, the usefulness of this support is reliant, to an extent, on how well it meets the needs of parents and their children (Yoshinaga-Itano, 2003). Since parental involvement in intervention services is an important contributor to positive language and socio-emotional outcomes, their perception that services are adequate and helpful may be important (Yoshinaga-Itano, 2003). The main purpose of this study was to derive the views of parents of children with cochlear implants regarding services received and from this identify parental needs. The analysis of 16 interviews revealed parents generally perceived decision making as challenging and stressful. This finding is consistent with previous research (Hyde et al, 2010; Jackson et al, 2008; Most & Zaidman-Zait, 2007). Similar to parents of all deaf children, parents reported that decision making was an ongoing process, noting that this did not cease at cochlear implantation, but continuing through their children’s school years. This study suggests that for parents of children with cochlear implants, access to a range of information from multiple sources was important and most were generally satisfied with the information they received. Furthermore, similar to other parents of children across the spectrum of hearing loss, parents in this study took the initiative to find information themselves to support their decision making regarding cochlear implantation, communication modalities, early intervention, and education when they perceived gaps (Hyde et al, 2010, Zaidman-Zait, 2007). Parents made a range of recommendations for improving services, some of which are already in place, suggesting both that support was not in place when families needed them, particularly for parents of older children, and that knowledge about and accessibility of some services is an issue. Despite developments in both technology and services, there were no clear differences in comments made by participants with younger versus older children, suggesting that these developments did not have a major impact on perceptions of the services they have received. The finding that parents of cochlear-implanted children perceived audiology and early interventions services as helpful was consistent with other qualitative research (Fitzpatrick et al, 2008; Jackson et al, 2008). A notable difference in this study was the emergence of parental dissatisfaction regarding educational and technical support services. Specialized knowledge in child hearing impairment and cochlear implant related issues, while highly valued by parents, appeared lacking in educational services. Another finding in this research, not previously discussed in the literature specific to parents of children with cochlear implants, was the meaning parents derived from their child’s deafness. Parent reflections indicated positive meaning of personal learning and growth was elicited from experience of having a child with a hearing impairment. This finding was consistent with previous disability research suggesting there are psychological benefits for
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families who positively appraise and make meaning from the experience of child disability (Larson, 2010; Trute & Hiebert-Murphy, 2002). Thus, services providers may want to consider ways they can support parents in developing a broader and more positive view of hearing impairment and the use of cochlear implants. This research raises other possible implications for services supporting the needs of parents and children with cochlear implants. Given the value parents place on their connections with other parents, it may be important for services, particularly early intervention programs, to consider presenting parent-to-parent contact as a prominent feature of service (Fitzpatrick et al, 2008). A statement from one parent highlights this need: ‘Probably our greatest gains for knowledge are from people who aren’t in proper positions because [professionals] didn’t have actual real life experience.ʼ (Participant 2, urban father of 6-year-old). It was also noted that parents’ emotional needs were commonly met through social networks, parent-to-parent connections, and through the informal support of some professionals rather than through formalized services. Given the emotional intensity of having a child with a hearing impairment, hearing-impairment services may want to consider offering or linking parents to more formalized emotional and psychological support (e.g. counselling). In other Australian clinics parent-to-parent connection is part of the standard cochlear implant candidature program. Lazarus and Folkman’s stress and coping model (1984) suggests that parent’s adjustment to the stressor of having a child with a cochlear implant is dependent upon their appraisal of the situation of the potential for harm or benefit. Themes covered parent concerns about making decisions that would not cause harm to their child and sourcing appropriate information and support to make these decisions. Parents also raised their role as advocates for their child, also in the context of avoiding harm. A positive appraisal of the situation by parents, as well as a sense of meaning derived from their personal experience of their child’s deafness, is likely to lead to more positive psychological adjustment. Consistent with the stress and coping model, parents describing positive appraisal reported more positive outcomes. The model is a dynamic or transactional model of coping, that is, managing a stressor is a process where parents are continuously appraising the situation and making decisions about the most effective coping strategy. This was discussed in relation to the themes related to transition stages, i.e. ‘Uncertainty about the future,ʼ and ‘New barriers to overcomeʼ. In the current study, one major theme encompassed the stressors, how parents appraised the stressors, and the way parents coped with these (‘A journey into a new world for parentsʼ). Parents discussed both deriving positive meaning from stressful experiences, and appraising their ability to manage the demands of the situation, often discussing growth in their ability to cope over time. The remaining two themes were about services and social support (‘Services meet many but not all needsʼ and ‘Parent connections and relationshipsʼ). These themes both addressed coping strategies parents used. Parents engaged in both problem-focussed (e.g. seeking information from service providers) and emotional coping strategies (e.g. seeking support from other parents) to support their child (Lazarus & Folkman, 1984). Study findings also pointed to a need for parents to actively engage with immediate family, social support, and external resources to support adjustment to their new role in the hearing-impairment process (Bronfenbrenner, 1979; Jackson at al, 2008). A strength of this study was the attainment of rich descriptions from parents residing in both rural and metropolitan areas.
Furthermore, discussions occurred with parents who had accessed a range of hearing-impairment services across the state, rather than from a single service or intervention program. The qualitative methodology allowed parent perspectives on support and needs to be fully heard, and as such some issues were discussed which have not been covered in previous questionnaire-based survey work. Some limitations were also noted and must be considered when interpreting the results. Overall, this study had a relatively small number of participants, i.e. 12 mothers and four fathers from 14 families. While efforts were made to include fathers in this research, only four volunteered to participate. In addition to this, all parents self selected to be a part of this study leaving it open to potential volunteer bias. Thus, participants may not be representative of all parents of children with cochlear implants in South Australia. While there were few differences in parent perspectives related to demographic or child factors, future work should aim to recruit more fathers. It is possible that mothers’ and fathers’ needs may differ in ways that it is important for services to understand, although a survey of mothers’ and fathers’ interest in various types of support did not differ in a German study of parents with children with cochlear implants (Spahn et al, 2001). Further, this study was conducted in South Australia, and experiences of parents in other locations may differ. Future work would benefit from recruiting participants across multiple sites to increase the generalizability of the findings. It is also important to note that parents were asked to reflect back on events, situations, and experiences with services that may have occurred a number of years prior to the current study, potentially leading to recall bias. However, because child hearing impairment is such a significant event in parents’ lives other researchers have found parents were able to recall considerable detail regarding their experiences, even years later (Hyde et al, 2010, Watson & Gregory, 2005). This was also found during the current study. Finally, we did not ask parents to consider their own role in supporting their child’s development, for example, by providing spoken language input. Future work should consider this, as parent’s understanding of their own role may influence their perceptions of support.
Conclusion In summary, this study provides preliminary evidence for parental perceptions of support and services within the context of cochlear implantation. This research increases our understanding of the views of parents who directly engage with the services that seek to maximize the language and socio-emotional outcomes of children with cochlear implants, and highlights the strengths and gaps of these services as perceived by study participants. Parent contributions point to a need for service providers to develop a type of support that is not only child-need oriented, but parent-need oriented, to better address gaps in service. However, these findings need replicating in larger samples from other geographical locations. Incorporating parents’ views and needs into service model delivery may also increase parental involvement in their child’s habilitation. This is crucial, given that early hearing loss detection, cochlear implantation, and early intervention may not be sufficient to produce positive language and socio-emotional outcomes for deaf children (Fitzpatrick et al, 2008; Geers et al, 2003; Kirkham et al, 2009). With a deeper understanding of parents’ experiences and needs, health practitioners and service providers will have a greater capacity to develop a broader model of service that enhances parental engagement and coping, as well as child language and socio-emotional outcomes.
Parent perceptions of services for children
Acknowledgements We would like to thank the participants who willingly volunteered their time to participate in this research. In particular, sincere thanks are extended to administration staff at the Audiology Unit at WCH. This research was presented at the Australian Psychological Society College of Health Psychologists National Conference, Cairns, Australia, April 2013. Declaration of interest: The authors report no conflicts of interest.
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References Anagnostou F., Graham J. & Crocker S. 2007. A preliminary study looking at parental emotions following cochlear implantation. Cochlear Implants Int, 8, 68–86. Australian Hearing. 2010. Australian Hearing Annual Report 2010. Retrieved from http://www.hearing.com.au/annual-reports. Braun V. & Clark V. 2006. Using thematic analysis in psychology. Qual Res Psychol, 3, 77–101. Bronfenbrenner U. 1979. The Ecology of Human Development. Boston, USA: Harvard University Press. Brown M., Bakar A., Rickards W. & Griffin P. 2006. Family functioning, early intervention support, and spoken language and placement outcomes for children with profound hearing loss. Deaf Educ Int, 8, 207–226. Calderon R. & Naidu S. 2000. Further support for the benefits of early identification and intervention for children with hearing loss. Volta Rev, 100, 53–84. Child, Youth, and Women’s Health Service. 2006. Annual Report: 05/06. Retrieved from http:// www.wchn.sa.gov.au/library/CYWHS_Annual_ Report_05–06.pdf Christiansen J. & Leigh I. 2004. Children with cochlear implants: Changing parent and deaf community perspectives. Arch of Otolaryngol Head and Neck Surg, 130, 673–677. Commonwealth of Australia. 2008. Universal Neonatal Hearing Screening: Assessment Report. Retrieved from http://www.msac.gov.au/internet/ msac/publishing.nsf Fitzpatrick E., Angus D., Durieux-Smith A., Graham I. & Coyle D. 2008. Parents’ needs following identification of childhood hearing loss. Am J Audiol, 17, 38–49. Fitzpatrick E.M., Jacques J. & Neuss D. 2011. Parental perspectives on decision-making and outcomes in pediatric bilateral cochlear implantation. Int J Audiol, 50, 679–687. Geers A., Brenner C. & Davidson L. 2003. Factors associated with development of speech perception skills in children implanted by age five. Ear Hear, 24, 24S–35S. Hyde M., Punch R. & Komesaroff L. 2010. Coming to a decision about cochlear implantation: Parents making choices for their deaf children. J Deaf Stud Deaf Educ, 15, 162–178. Jackson C.W. 2011. Family supports and resources for parents of children who are deaf or hard of hearing. Am Ann Deaf, 156, 343–362. Jackson C., Traub R. & Turnbull A. 2008. Parents experiences with childhood deafness: Implications for family-centred services. Commun Disord Q, 29, 82–98.
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Kirkham E., Sacks C., Baroody G., Siddique J. & Nevins M. et al. 2009. Health disparities in pediatric cochlear implantation: An audiological perspective. Ear Hear, 30, 515–525. Larson E. 2010. Psychological well-being and meaning-making when caregiving for children with disabilities: Growth through difficult times or sinking inward. OTJR, 30, 78–86. Lazarus R. & Folkman S. 1984. Stress, Appraisal, and Coping. New York: Springer Publishing Company Inc. Lazarus R. & Folkman S. 1987. Transactional theory and research on emotions and coping. Eur J Personality, 1, 141–169. Minchom S., Shepherd M., White N., Hill J. & Lund P. 2003. Service needs of hearing-impaired children and their families: Report of a survey of parental attitudes. Deaf Educ Int, 5, 93–107. Moeller M. 2000. Early intervention and language development in children who are deaf and hard of hearing. Pediatrics, 106, E43. Morse J.M. 2008. Confusing categories and themes. Qual Health Res, 18, 727–728. Most T. & Zaidman-Zait A. 2003. The needs of parents of children with cochlear implants. The Volta Rev, 103, 99–113. Okubo S., Takahashi M. & Kai I. 2008. How Japanese parents of deaf children arrive at decisions regarding pediatric cochlear implantation surgery: A qualitative study. J Soc Sci Med, 66, 2436–2447. Peñaranda A., Suárez R.M., Niño N.M., Aparicio M.L., García J.M. et al. 2011. Parent narratives on cochlear implantation: Reconstructing the experience of having a child with a cochlear implant. Cochlear Implants Int, 12, 147–156. Perold J. 2001. An investigation into the expectations of mothers of children with cochlear implants. Cochlear Implants Int, 2, 39–58. Porter A. & Edirippulige S. 2007. Parents of deaf children seeking hearing loss-related information on the internet: The Australian experience. J Deaf Stud Deaf Educ, 12, 518–529. Rahi J.S., Manaras I., Tuomainen H. & Lewando Hundt G. 2004. Meeting the needs of parents around the time of diagnosis of disability among their children: Evaluation of a novel program for information, support, and liaison by key workers. Pediatrics, 114, e478. Sach T. & Whynes D. 2005. Paediatric cochlear implantation: The views of parents. Int J Audiol, 44, 400–407. Spahn C., Richter B., Zschocke I., Lohle E. & Wirsching M. 2001. The need for psychosocial supports in parents with cochlear implanted children. Int J Pediatr Otorhinolaryngol, 57, 45–53. Trute B. & Hiebert-Murphy D. 2002. Family adjustment to childhood developmental disability: A measure of parent appraisal of family impacts. J Pediatr Psychol, 27, 271–280. Watson L.M. & Gregory S. 2005. Non-use of cochlear implants in children: Child and parent perspectives. Deaf Educ Int, 7, 43–58. Yoshinaga-Itano C. 2003. From screening to early identification and intervention: Discovering predictors to successful outcomes for children with significant hearing loss. J Deaf Stud Deaf Educ, 8, 11–30. Yucel E., Derim D. & Celik D. 2008. The needs of hearing-impaired children’s parents who attend to auditory verbal therapy-counseling program. Int J Pediatr Otorhinolaryngol, 72, 1097–1111. Zaidman-Zait A. 2007. Parenting a child with a cochlear implant: A critical incident study. J Deaf Stud Deaf Educ, 12, 221–241. Zaidman-Zait A. 2008. Everyday problems and stress faced by parents of children with cochlear implants. Rehabil Psychol, 53, 139–152.
ISSN: 1499-2027 (Print) 1708-8186 (Online) Journal homepage: http://www.tandfonline.com/loi/iija20
Perceptions of the support that mothers and fathers of children with cochlear implants receive in South Australia: A qualitative study Rachel M. Roberts, Felicity Sands, Anne Gannoni & Tony Marciano To cite this article: Rachel M. Roberts, Felicity Sands, Anne Gannoni & Tony Marciano (2015): Perceptions of the support that mothers and fathers of children with cochlear implants receive in South Australia: A qualitative study, International Journal of Audiology To link to this article: http://dx.doi.org/10.3109/14992027.2015.1060641
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Date: 14 November 2015, At: 15:41
International Journal of Audiology 2015; Early Online: 1–9
Original Article
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Perceptions of the support that mothers and fathers of children with cochlear implants receive in South Australia: A qualitative study Rachel M. Roberts*, Felicity Sands*, Anne Gannoni† & Tony Marciano† *School
of Psychology, University of Adelaide, Australia, †Women’s and Children’s Hospital, North Adelaide, Australia
Abstract Objective: The study explored the perceptions of parents of children with cochlear implants regarding the support they have received. Design: Semi-structured interviews were conducted and the resultant data was subjected to thematic analysis. Study sample: Participants were 12 mothers and four fathers from South Australia with a child with cochlear implants. Results: Three major themes emerged: (1) a journey into a new world for parents, (2) services meet many but not all needs, and (3) parent connections and relationships. Most parents were satisfied with surgical, audiology, and early intervention services as well as specialist hearing-impairment schools, and perceived this support as helpful and adequate. However, some parents were critical of non-specialized teaching staff, and technical support for hearing devices. Parent recommendations for improved service provision included increased support, improved information, and additional professional services. Conclusions: Parent contributions suggest a need for service providers to develop support that is not only child-need oriented, but parent-need oriented, to better address service gaps. With a deeper understanding of parents’ experiences and needs, service providers will have a greater capacity to develop a broader model of service that enhances parental engagement and coping.
Key Words: Cochlear implant; hearing impairment; parent; support service; needs; intervention Given that approximately 1 per 1000 babies are born with a significant hearing impairment in Australia and another 2.3 per 1000 children acquire a hearing impairment through illness and other causes, child hearing loss is an important issue (Australian Hearing, 2010). Beginning in 2000 the universal neonatal hearing screening (UNHS) program was rolled out across Australia, with South Australia establishing its own program to screen for congenital hearing impairment by 2006 (Children, Youth and Women’s Health Service, 2006). Prior to the UNHS program, the typical procedure in Australia was to screen children identified as at risk, for example, children with low birth weight; however, only 50 to 60% of children were identified in this way (Commonwealth of Australia, 2008). Research also indicated that early identification of hearing loss, along with early intervention including fitting of acoustic devices and habilitation, results in speech perception outcomes, language outcomes, and socio-emotional development that is more consistent with normally-hearing peers (Calderon & Naidu, 2000; Moeller, 2000; Yoshinaga-Itano, 2003). Thus, the roll out of the UNHS program was considered key to better language and socio-emotional outcomes. Data from the UNHS program shows that in 2013, 0.25% of newborns in South Australia were diagnosed with a sensori-neural hearing loss (51 of 20, 515 children). Of the children identified through the screening program each year, on average, there are six children
with bilateral severe to profound hearing loss referred to the Audiology Unit and on average four to six of these referrals are implanted each year (data provided by T. Marciano, Audiology Unit Coordinator, Women’s & Children’s Network). Previous research has demonstrated that once a child has been identified as having a hearing impairment, parents may experience stressors including feelings of grief and loss over their child’s diagnosis, making choices about hearing devices, and obtaining the appropriate support services (e.g. communication therapy) (Anagnostou et al, 2007; Sach & Whynes, 2005; Zaidman-Zait, 2007). Approximately 90% of parents of children diagnosed with hearing impairment have normal hearing themselves, and as such, will have had little exposure to deafness (Christiansen & Leigh, 2004). As a consequence, they are likely to have limited knowledge in this area and are reliant on the information and support received from external sources (Christiansen & Leigh, 2004). For parents of children who have severe or profound hearing impairment, there is the added pressure after diagnosis to make a decision for their child to have surgery if cochlear implantation is deemed a suitable option and this can be a difficult decision for parents to make (Zaidman-Zait, 2008). Adjustment to a stress experience may be dependent upon cognitive appraisal (how a person interprets a situation) and what coping strategies are utilized (Lazarus & Folkman, 1984). The stress and
Correspondence: R.M. Roberts, School of Psychology, University of Adelaide, North Tce., Adelaide, 5005, South Australia, Australia. E-mail: [email protected] (Received 15 March 2015; accepted 5 June 2015) ISSN 1499-2027 print/ISSN 1708-8186 online © 2015 British Society of Audiology, International Society of Audiology, and Nordic Audiological Society DOI: 10.3109/14992027.2015.1060641
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Abbreviations
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SA UNHS WCH
South Australia Universal neonatal hearing screening Women’s and Children’s Hospital
coping model (Lazarus & Folkman, 1984) suggests that parents who interpret their child’s diagnosis of hearing impairment as a challenge are more likely to adjust well to their child’s disability. Personal coping strategies, either emotion-focused (e.g. utilizing social support) or problem-focused methods (e.g. seeking out information), potentially act as a buffer against adverse experiences (Lazarus & Folkman, 1987). Family adjustment has also been viewed in a broader context, with emphasis on the interactions between immediate family members, their social support network and external influences (e.g. community resources). These interactions have a combined impact on the family’s adaption to new roles in light of significant change, such as child deafness (Bronfenbrenner, 1979; Jackson et al, 2008). Hearing impairment impacts the entire family and rather than having a traditional childspecific focus, support needed to be ʽwidespreadʼ (e.g. informational support, financial resources, recreational opportunities) and family focused to reduce stress and enhance coping (Jackson et al, 2008). The perceptions of parents regarding support are important to understand to ensure services meet parent needs, and as such, assist family adjustment. Research has outlined a range of parent needs that parents of children with disabilities have in common, including a need for information, emotional support from professionals, and informal and formal social networks and support groups (Rahi et al, 2004). In research with parents of children with hearing impairments, similar support needs have been reported. A UK study found unmet needs for information and for linking parents to social networks and support groups (Minchom et al, 2003). Likewise, in a US study parents reported that information, social and emotional support, and educational advocacy were their most important needs (Jackson, 2011). Work in Turkey has also reported that among parents of children with hearing impairment who received auditory verbal therapy, there was a significant unmet need for information and support (Yucel et al, 2008). This finding suggests some common underlying needs for parents of children with hearing impairment, regardless of country. While parents’ experiences and their perceptions of services have been a focus in research for some time, this has often included parents of all children with diagnosed hearing loss. Research focusing on the support needs of parents of children with cochlear implants has suggested that many unmet needs overlap with the needs of parents of children with hearing impairments in general, such as: the need for information regarding hearing impairment and assistance available; the need for counselling for parents focusing on their children’s development and behaviour; and individual, couple, and family therapy (Spahn et al, 2001). However, needs specific to parents of children with cochlear implants were also reported, such as: wanting to attend groups to meet other parents of children with cochlear implants (Spahn et al, 2001); needs for information and counseling in relation to technology choices for their children; as well as concerns about the risks of cochlear implantation surgery and the discomfort and pain for their child (Fitzpatrick et al, 2011). Parent needs for emotional support and the opportunity to meet parents of other implanted children were also reported by Most and Zaidman-Zait (2003), while support for the siblings of the child
with cochlear implants was recommended by parents in a study by Peñaranda et al (2011). The purpose of this qualitative research is to explore the perceptions of South Australian mothers and fathers of children with cochlear implants regarding the support and services they have received from the time their child or children were first diagnosed with a hearing impairment. In particular, this research considered whether or not the informal (family, friends, community) and formal (government and private sector services) support and services parents received were perceived as helpful and adequate. We aimed to recruit a representative sample of parents from the population of parents of children with a cochlear implant in South Australia. As a result of this study, service providers’ knowledge of families’ needs may be expanded, thereby potentially improving support services and family adjustment.
Method Recruitment and sampling This study was approved by the Women’s and Children’s Health Network Research Ethics Committee and the School of Psychology, University of Adelaide Human Research Ethics Committee. This research was conducted through the Paediatric Cochlear Implant Program, at the Women’s and Children’s Hospital in Adelaide, South Australia, which has been implanting children since 1991. The program provides surgical and audiology services and is the only implantation surgical service in South Australia. Parents of children (17 years of age and under) with cochlear implants were invited to participate. All children in the study were fitted with high powered hearing aids by Australian Hearing (national hearing-aid provider for children in Australia) as per their fitting standard for severe to profound sensorineural hearing loss. All children were recipients Table 1. Child and family demographics for study participants and for all SA children with cochlear implants. Study participants N ⫽ 16 parents of 17 children with cochlear implants
Characteristic Parent age (years) Parent years of education Child age (years) Child gender
Mean (standard deviation)
Range
42.8 (8.7) 12.4 (1.9)
30–62 10–18
9.5 (5.2) 1–16 11F, 6M 65%F, 35%M N
Residence Urban Rural Child identified via UNHS program Age at diagnosis Before 12 months After 12 months Cochlear implant Unilateral Bilateral
%
10 6 6
62 38
7 10
41.1 58.8
12 5
70.5 29.5
Database of all SA children with cochlear implants N ⫽ 160 children
85F, 77M 52%F, 48%M N
%
120 39
75 25
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Parent perceptions of services for children
of the Nucleus Cochlear Implant manufactured by Cochlear. The CI24 models of implant were used, ranging from the CI24M to the CI24RE. All participants who indicated an early expression of interest in the study were interviewed. Initial expressions of interest were mostly from mothers of children under 12 years of age, thus maximum-variation sampling was used to balance out the gender-ratio to recruit fathers, as well as parents of adolescents who were also under-represented in the initial pool of participants. Twelve mothers and four fathers from a total of 14 families agreed to participate in the study. In two families both the mother and father were interviewed, in 10 families the mother was interviewed and in two families the father was interviewed. One participant had a hearing impairment. In total, 16 parents participated. Most families had just one child with cochlear implants (12 families) but one family had two children with cochlear implants and one family had three children with cochlear implants. The 14 families in the study had 17 children with cochlear implants. A summary of family and child demographics is presented in Table 1 with further details of participants including participant number, presented in Table 2.
Data collection Data were collected between March and July 2012 through semistructured interviews, each between 30 and 90 minutes in duration (mean ⫽ 66 minutes). They were conducted face-to-face or via telephone, depending on participants’ preferences. Demographic
3
questions were followed by a set of open questions (see supplementary material Interview questions available in the online version of the journal. Please find this material with the direct link to the article at: http//www.informaworld.com/10.3109/14992027.2015.1060641). These questions were based on topics derived from a review of the hearing-impairment, cochlear implant and service support literature. With parents’ permission, all interviews were digitally recorded.
Data analysis Thematic analysis was used to examine parents’ descriptions of their experiences in a rich and cohesive manner. Thematic analysis is a method for identifying, analysing and reporting thematic patterns within data (Braun & Clarke, 2006). Themes are meanings that run through the data. In accordance with the procedure of thematic analysis outlined by Braun and Clarke (2006), the interview data was transcribed verbatim. Following this, transcripts were read and initial ideas about the data were noted for the purpose of familiarization. Content related to parent’s perceptions of support and services were highlighted and coded. Codes are labels or descriptions of the content of the material. Next, codes were sorted into categories. Categories are groups of similar data (codes). Interviews were conducted until category saturation was reached, that is, when no new categories of data emerged from the preceding two interviews. Finally, themes and subthemes were identified from the categories, that is, data analysis aimed to ‘elicit meaning or the essence of the experience for the participant’ (Morse, 2008, p.727). Initial data
Table 2. Participant characteristics.
Parent interviewed
Children with hearing impairment (gender, age)
Age at diagnosis
1&2
mother & father
girl, 6
1 month
3
mother
girl, 1
Participant number
4 5 6
mother mother mother
Age at implant
Position in family
1 month
Right, 10 months Left, 2 years 10 months
4th of 4
boy, 3
1 month
11 months
3rd of 4
boy, 8
12 months
18 months
1st of 4
boy, 15 girl, 8 girl, 2
13 months 2 years 1 month
Only child Only Child 2nd of 2
girl, 4
1 month
20 months 5 years, 1 month Right, 15 months Left, 2 years, 4 months Right, 3 years, 6 months Left, 4 years 5, months Left, 1 year, 11 months Right, 9 years, 6 months Right, 2 years, 6 months Left, 14 years, 9 months 3 years, 5 months 10 years, 3 months 7 years, 4 months 2 years, 4 months 2 years 1 year, 11 months 2 years, 9 months
7
mother
girl, 11
15 months
8&9
mother & father
girl, 16
18 months
10 11 12 13 14 15 16
mother mother mother mother father mother father
girl, 5 girl, 14 boy, 12 girl, 5 boy, 14 girl, 16 boy, 14
12 months 21 months 2 years 20 months 1 month 21 months 18 months
5th of 5
Hearing status of siblings Older sibling 3rd of 5 has a bilateral moderate loss 2 older brothers 3rd of 4 and 1st of 4 have a bilateral profound loss 2 siblings with bilateral profound loss 4th of 4 and 1st of 4th 2 siblings with bilateral profound loss, 3rd of 4 and 4th of 4
2nd of 2
Sibling has a bilateral severe to profound loss Sibling has a bilateral severe to profound loss Normal hearer
2nd of 2
Normal hearer
1st of 2
Only child 2nd of 3 Only child 3rd of 5 1st of 3 2nd of 2 3rd of 3
Normal hearers Normal hearers Normal Hearers Normal hearer Normal hearers
Location of residence urban rural
rural urban urban
urban rural rural urban rural urban rural rural urban
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analysis was completed by FS and then the raw data and identified categories and themes were reviewed by co-authors RR and AG. Minor differences of opinion regarding the results were resolved through discussion in a face to face meeting with the three researchers. Findings are presented by themes, with interview excerpts from participants that illustrate the relevant theme. Where themes were primarily reported by a subgroup of participants (e.g. rural vs. urban, mothers vs. fathers, parents of older vs. younger children, diagnosis via UNHS or other route, bilateral vs. unilateral implantation) this is noted.
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Results In this study three main themes emerged from the experiences of 16 parents: (1) a journey into a new world for parents; (2) services meet many but not all needs; and (3) parent connections and relationships. All 16 parents discussed all three main themes. Within each theme, a number of subthemes emerged. Only subthemes discussed by most parents are discussed further in the paper. However, all subthemes that were present in the data are listed in Table 3. Subthemes which are not discussed further are defined in Table 3.
A journey into a new world for parents All parents discussed their experiences of making their way with their child through a pathway of hearing-impairment detection and diagnosis, as well as cochlear implantation, habilitation and schooling options, all the while trying to gain understanding of a disability most had limited knowledge of. Parents referred to their experiences as a ‘journey’ for example, a mother reflecting about her final appointment with her daughter before she moved to the city for her final school years said:
‘It had been a real journeyʼ (Participant 11, urban mother of girl aged 14). Parents also referred to feeling like they were heading into a ‘different world’, for example a mother said: ‘You’re thrown into a whole different, it’s a different world.ʼ (Participant 15, rural mother of 16 year old girl); and another said having a child with a hearing impairment: ‘Just opened my world up in a way that I didn’t think it was going toʼ (Participant 11, urban mother of 14 year old girl). Parents also discussed supporting their children through important life stages as they moved from primary school to high school or from high school to work or study. With the intensity of the early years behind them, parents acknowledged their learning and increased level of understanding.
Making life-changing decisions for their child After their child was identified as having a hearing loss, parents reported facing a range of significant decisions that continued beyond their child’s early years. Decisions included: cochlear implantation (unilateral or bilateral), communication methods (e.g. sign language), early intervention service options, and schooling options. Overall, parents generally found the decision making process to be a challenge, although a few found it straightforward. Parents reflected on the factors that influenced their decisions. For example, factors influencing the decision to implant included: limited time frames, benefits of cochlear implantation, wanting their child to speak, future opportunities for their child, future technology, and living in a hearing world. Some parents struggled with this decision, concerned their child might later disapprove:
Table 3. Themes and subthemes. Theme 1: A journey into a new world for parents Receiving the diagnosis Making life-changing decisions for their child Obtaining the right information Intensity of implantation and habilitation Building knowledge of the new world from almost nothing Uncertainty about the future
New barriers to overcome
Parental personal growth as a result of an unexpected journey Theme 2: Services meet many but not all needs Satisfaction with specialist child services Individual professionals who support families are valued Needing to become an advocate Recommendations for improving services Theme 3: Parent connections and relationships Parent-to-parent connections invaluable Family and friends sometimes lack understanding, but rural communities are very supportive
Parents discussed their experiences of detecting child deafness, of the diagnostic process, and the emotions stemming from these experiences. see text see text Parents discussed the intense experience of cochlear-implantation, with its worries and fears, as well as the hard work and commitment required for habilitation post-surgery. see text Parents in transition with their adolescents moving into adulthood looked to the future and expressed concerns about what their children’s future might hold in light of their disability For some parents, transitions in hearing impairment brought barriers not previously encountered. For example, parents reported that their adolescents were no longer able to access some services because of their age. see text
see text see text Parents needed to become advocates for children’s needs. Advocacy was typically related to diagnosis, cochlear-implantation, and the child’s school needs. Parents noted gaps in hearing impairment services and put forward ideas on ways health-care and early intervention providers could improve services. see text see text
Parent perceptions of services for children
‘Then of course you know things like what’s going to happen if we do it and it doesn’t work? Is our daughter when she’s older going to hate us for trying...?ʼ(Participant 2, urban father of 6-year-old)
‘We only thought what we’d seen, you know, as we grew up. Deaf kids went to deaf schools and we didn’t know that our kids could do anything else.ʼ (Participant 6, urban mother of 2-and 4-yearold).
Parents wanted to be sure their decision was the right one, at times, looking to professionals for certainty and being unable to obtain it. Other parents found the decision relatively easy as the potential benefits overrode any risks or concerns:
Parents also discussed gaining expertise of child hearing impairment as a result of their experiences over time and through information gained from both professionals and other parents. For example, a mother spoke about having built her knowledge of how to access services her child needed. She said:
‘We felt […] there was nothing to lose by him receiving a cochlear implant.ʼ (Participant 12, rural father of 12-year-old).
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‘…I know stuff now. At the start I didn’t know and I just accepted what I was given.ʼ (Participant 6, urban mother of 2- and 4-yearold).
Obtaining the right information Interviews revealed parents spent a significant amount of time receiving and seeking out information to help them access appropriate services for their child with a hearing impairment and make the best decisions possible for their children. Most parents were satisfied with the information they received from multiple sources. All parents discussed the types of information received from professionals. Topics typically covered were: cochlear implantation and its potential benefits; early intervention services available; general risks of surgery; and habilitation. Parents had a strong desire to receive information from other parents of deaf children and the internet. As one parent explained: ‘They had a playgroup there with other kids you could see that were deaf and also parents you could talk to. So I needed to see, speak to parents and see how they coped with their deaf child.ʼ (Participant 3, rural mother of 1-, 3-, and 8-year-old) Other sources discussed included: books and pamphlets recommended by professionals, information nights held by early intervention services, and speaking with older children with cochlear implants. Parents described a range of information needs, not all of which were met. Specific information needs included: the child’s communication, academic and social outcomes; tips on managing hearing devices; parenting advice; mapping information; the latest hearingdevice technology; tips on accessing services (e.g. contacting professionals directly, not through reception); and their child’s progress. Other parents spoke of wanting more information about cochlear implant surgery than they received, including what to expect after surgery: ‘On the back of the consent form on your operation day […] there was nothing about implants […]. Like we weren’t really told that the bandage would be so tight. Like when [our daughter] had it, it was so tight her face swelled up and she could hardly see.ʼ (Participant 6, urban mother of 2- and 4-year-old).
Building knowledge of the new world from almost nothing More than 50% of parents expressed an awareness of their lack of knowledge of the hearing-impairment services and deafness as a disability, as they had limited previous exposure to hearing impairment. This initially led to a minimal understanding of the work it would take for their child to progress, what questions to ask professionals, how to access appropriate information, what technical support their child was eligible for, what profound hearing loss meant for their child, and what cochlear implantation was. Some parents had been unaware of future possibilities for their children:
Parental personal growth as a result of an unexpected journey Those parents who had older children were able to look back and reflect on what had occurred. One such reflection was the overall impact of child hearing impairment and the intensity of the experience as heard through comments such as: ‘It’s been hard I must admit, but at the same time we have met so many different people we wouldn’t have met and I think also actually so overall you know it’s been hard, but like sometimes you have your days where you think ʽWhy me?ʼ and other days you think ʽWell, I’m proud that they are speaking so wellʼ and like you know we have done the work to get them there.ʼ (Participant 3, rural mother of 1-, 3- and 8-year-old). Another mother indicated that in the early days she didn’t feel the support was ‘too bad’ at the time, but upon reflection: ‘Because of the cloud you’re living in at times umm at the time I thought I had enough, but looking back later I don’t think I did.’ (Participant 11, urban mother of 14-year-old). Parents also reflected on the meaning and the learning they had derived from parenting a deaf child: ‘It was a real gift and it helped me in so many ways and it made me. I might not stand up for myself and say too much, but it taught me how to stand up for somebody else and be an advocate, so I yeah it, it’s been marvelous actually.’ (Participant 14, rural mother of 14-year-old). Parents not only felt they had broadened and developed their approach to parenting; they had learned more about their child and his or her deafness: ‘I think us as parents have learned what is good about [our son] and there’s some pretty cool things […]. We’ve learned to love that whole thing. I’m actually proud of him and his deafness. Now I don’t shy away from it.’ (Participant 12, rural father of 12-yearold).
Services meet many but not all needs Parents were asked to comment on their experiences, including the difficulties and their satisfaction, with the services provided and accessed in South Australia. Parents reflected on their service provision experiences at an organizational and individual level. Recommendations to improve hearing impairment services made by participants are provided in Table 4.
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Table 4. Summary of parent recommendations for hearing impairment service providers.
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Recommendations for service provision • Increased support For hearing siblings* Counseling (e.g. couple, loss and grief, children’s counseling)* Academic and emotional support for hearingimpaired adolescents* A youth group for hearing-impaired adolescents For professionals to support parents use of sign language with their child at specific times of the day (e.g. when the implant is turned off at bath-time)* • Improved information How to parent hearing and hearing-impaired children* Cochlear implantation surgery* • Professional services A support person/coordinator whose role it is to coordinate appointments after diagnosis; to be a central contact person Services from professionals with personal experience in hearing impairment* Sign language classes* Technical support providers to have a separate division devoted to children’s services Professionals to be aware that adolescents are unlikely to ask for help even if it is required*
Number of parents making recommendation
Parents also pointed out factors that made service access more difficult and led to dissatisfaction. Parents from country and metropolitan areas mentioned driving distance and time as a barrier to service. Other parents discussed the poor timing of services. One mother explained how her adolescent was offered educational support well after the required time. She had to inform the professionals the offer was:
1 4
‘Too little too lateʼ (Participant 15, rural mother of 16-year-old), as her adolescent had run away from home.
13 5 1
For a few parents, services were not available when they were needed (e.g. speech therapy) or the location of the service was inconvenient. These parents discussed needing to actively look for the services that met their specific needs, even if it meant funding the support themselves (e.g. private speech therapy).
3
Individual professionals who support families are valued
11 3
3 1 4 1
*Services currently provided in South Australia, although accessibility for families may vary.
Satisfaction with specialist child services Most parents indicated a high level of satisfaction with surgical, audiology, and early intervention services (e.g. auditory-verbal and speech therapy) and perceived these support services as helpful and adequate. When discussing service provision, parents identified components of early intervention services they appreciated. These included: home visiting, family activities organized by the service, and the willingness of those services to extend their knowledge and expertise to other children’s services (e.g. schools). More than a third of parents spoke of their appreciation for the financial support they received through charities and government funding. A sentiment shared by a number of parents was that schools (e.g. with hearing units) and school staff with a specialized knowledge in child hearing impairment were consistently able to meet parents’ and children’s needs. Those that did not were commonly perceived as having a poor understanding of deaf children’s requirements. One parent discussed a teacher’s resistance to support her child’s use of an FM in the classroom: ‘[She] just wasn’t willing to wear the microphone and she didn’t understand how it all worked. They originally had […] a headset one. She didn’t want to wear a headset one.ʼ (Participant 1, urban mother of 6-year-old). In addition, over half of parents were critical of services providing technical support for hearing devices for a variety of reasons (e.g. difficulty accessing equipment necessary for the functioning of cochlear implants).
Parents shared their experiences of the services and support they received from individual professionals attached to a number of different services (e.g. early intervention, hospitals, schools). Parents, particularly those with older children, reflected on the strong personal relationships that had developed as a result of working closely with professionals over a number of years. During discussions, it was apparent that parents valued aspects of individual service, which added to their sense of being supported and understood. For instance, parents appreciated professionals who gave them all the time they needed during appointments, were willing to listen, were honest about possible cochlear implantation benefits, and made themselves available to parents: ‘You know, he made himself open to us. You know, ʽHere’s my home phone number. Here’s my mobile phone number.ʼ (Participant 2, urban father of 6-year-old). In contrast, some parents spoke of their dislike of feeling pushed by professionals who appeared to have their own biased agenda (e.g. bias against signing), or who came across as arrogant or rude. One mother shared what a professional said to her in reference to her daughter with a hearing impairment: ‘[The child was] so annoying I was going to throw her in the bin.’ (Participant 8, rural mother of 16-year-old). Neither did parents appreciate feeling their concerns had been dismissed. On a more positive note, a few parents discussed the ways in which some professionals took on additional roles (e.g. advocate, counsellor), which were not necessarily in their job description: ‘You know [it was] totally out of his field because he’s an audiologist, not a psychologist, you know? He’s probably a better psychologist than some, but without the label.’ (Participant 11, urban mother of 14-year-old). Parents valued the effort some professionals made to broaden their role in order to meet the needs of the parents.
Parent connections and relationships This theme reflected parents’ relationships with others and what made these relationships important during the hearing-impairment process. The subtheme discussed most in-depth by parents was parent-to-parent connections invaluable.
Parent perceptions of services for children
Parent-to-parent connections invaluable Eleven of the sixteen parents discussed connections with other parents with similar experiences. These connections commonly occurred as a result of parents’ contact with early intervention services via playgroups or impromptu get-togethers, which occasionally developed into parent groups. Through these parent-to-parent connections, practical information about bilateral implants, early intervention services and surgery was received:
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‘I knew from other parents that you know to take a buttoned up top or expect that their head’s going to be swollen and they may have a black eye or something. But I knew that from talking to parents and chat groups.’ (Participant 3, rural mother of 1-, 3-, and 8-year-old) Contact with other parents also offered opportunities to compare their child’s progress with other children of a similar age, see the progress of older children, receive tips on how to access appropriate services (e.g. getting appointments), and to observe how other parents coped with a child who was deaf. For some parents these connections with other parents also fulfilled an emotional need as it gave them the opportunity to vent, they felt less alone, and they had the opportunity to talk with other parents about the difficulties they were facing. ‘You only kind of get that [understanding] from other parents that I think have been diagnosed with a child that’s deaf. Because you know they’ve been there done that. Cos it’s a road you’ve never been on and you’re like ‘Well, can I cope with this? What’s the outcome?’ (Participant 3, rural mother of 1-, 3-, and 8-year-old). Most parent connections occurred face-to-face, but one parent sourced her connections with other parents via the internet: ‘I actually came across a chat group […]. So I found them a better support from other parents that had been there done that’ (Participant 3, rural mother of 1-, 3-, and 8-year-old).
Family and friends sometimes lack understanding but rural communities are very supportive Parents discussed how supportive they found their family, friends and local community to be in helping them cope with their child’s hearing impairment. For the majority of parents it was a mixed experience as family and friends were typically sympathetic, but lacked the understanding that other parents of children with hearing impairment possessed. ‘Yeah, I think you find [friends] understanding, but they still don’t quite get it. You only kind of get that from other parents that I think have been diagnosed with a child that’s deafʼ (Participant 3, rural mother of 1-, 3-, and 8-year-old). Other parents noticed a few of their social supports tried to find the ‘silver lining’, as one parent described it, in hearing impairment. This left parents feeling invalidated. According to parents, some social supports responded with such comments as, ‘Well, you’re lucky she’s not blindʼ (Participant 1, urban mother of 6-year-old) And, ‘At least you get [the] carerʼs allowanceʼ (Participant 3, rural mother of 1-, 3-, and 8-year-old).
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Three rural families also described how they were supported through their local community and/or church: ‘Everyone was interested because we were all working together and living together and playing sport together.ʼ (Participant 11, urban mother of 14-year-old; recently moved from rural to urban area). No families from metropolitan areas mentioned receiving this broader level of support.
Discussion For families in which a child has a cochlear implant, parental access to a range of professional, social and emotional supports may promote family adjustment. However, the usefulness of this support is reliant, to an extent, on how well it meets the needs of parents and their children (Yoshinaga-Itano, 2003). Since parental involvement in intervention services is an important contributor to positive language and socio-emotional outcomes, their perception that services are adequate and helpful may be important (Yoshinaga-Itano, 2003). The main purpose of this study was to derive the views of parents of children with cochlear implants regarding services received and from this identify parental needs. The analysis of 16 interviews revealed parents generally perceived decision making as challenging and stressful. This finding is consistent with previous research (Hyde et al, 2010; Jackson et al, 2008; Most & Zaidman-Zait, 2007). Similar to parents of all deaf children, parents reported that decision making was an ongoing process, noting that this did not cease at cochlear implantation, but continuing through their children’s school years. This study suggests that for parents of children with cochlear implants, access to a range of information from multiple sources was important and most were generally satisfied with the information they received. Furthermore, similar to other parents of children across the spectrum of hearing loss, parents in this study took the initiative to find information themselves to support their decision making regarding cochlear implantation, communication modalities, early intervention, and education when they perceived gaps (Hyde et al, 2010, Zaidman-Zait, 2007). Parents made a range of recommendations for improving services, some of which are already in place, suggesting both that support was not in place when families needed them, particularly for parents of older children, and that knowledge about and accessibility of some services is an issue. Despite developments in both technology and services, there were no clear differences in comments made by participants with younger versus older children, suggesting that these developments did not have a major impact on perceptions of the services they have received. The finding that parents of cochlear-implanted children perceived audiology and early interventions services as helpful was consistent with other qualitative research (Fitzpatrick et al, 2008; Jackson et al, 2008). A notable difference in this study was the emergence of parental dissatisfaction regarding educational and technical support services. Specialized knowledge in child hearing impairment and cochlear implant related issues, while highly valued by parents, appeared lacking in educational services. Another finding in this research, not previously discussed in the literature specific to parents of children with cochlear implants, was the meaning parents derived from their child’s deafness. Parent reflections indicated positive meaning of personal learning and growth was elicited from experience of having a child with a hearing impairment. This finding was consistent with previous disability research suggesting there are psychological benefits for
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families who positively appraise and make meaning from the experience of child disability (Larson, 2010; Trute & Hiebert-Murphy, 2002). Thus, services providers may want to consider ways they can support parents in developing a broader and more positive view of hearing impairment and the use of cochlear implants. This research raises other possible implications for services supporting the needs of parents and children with cochlear implants. Given the value parents place on their connections with other parents, it may be important for services, particularly early intervention programs, to consider presenting parent-to-parent contact as a prominent feature of service (Fitzpatrick et al, 2008). A statement from one parent highlights this need: ‘Probably our greatest gains for knowledge are from people who aren’t in proper positions because [professionals] didn’t have actual real life experience.ʼ (Participant 2, urban father of 6-year-old). It was also noted that parents’ emotional needs were commonly met through social networks, parent-to-parent connections, and through the informal support of some professionals rather than through formalized services. Given the emotional intensity of having a child with a hearing impairment, hearing-impairment services may want to consider offering or linking parents to more formalized emotional and psychological support (e.g. counselling). In other Australian clinics parent-to-parent connection is part of the standard cochlear implant candidature program. Lazarus and Folkman’s stress and coping model (1984) suggests that parent’s adjustment to the stressor of having a child with a cochlear implant is dependent upon their appraisal of the situation of the potential for harm or benefit. Themes covered parent concerns about making decisions that would not cause harm to their child and sourcing appropriate information and support to make these decisions. Parents also raised their role as advocates for their child, also in the context of avoiding harm. A positive appraisal of the situation by parents, as well as a sense of meaning derived from their personal experience of their child’s deafness, is likely to lead to more positive psychological adjustment. Consistent with the stress and coping model, parents describing positive appraisal reported more positive outcomes. The model is a dynamic or transactional model of coping, that is, managing a stressor is a process where parents are continuously appraising the situation and making decisions about the most effective coping strategy. This was discussed in relation to the themes related to transition stages, i.e. ‘Uncertainty about the future,ʼ and ‘New barriers to overcomeʼ. In the current study, one major theme encompassed the stressors, how parents appraised the stressors, and the way parents coped with these (‘A journey into a new world for parentsʼ). Parents discussed both deriving positive meaning from stressful experiences, and appraising their ability to manage the demands of the situation, often discussing growth in their ability to cope over time. The remaining two themes were about services and social support (‘Services meet many but not all needsʼ and ‘Parent connections and relationshipsʼ). These themes both addressed coping strategies parents used. Parents engaged in both problem-focussed (e.g. seeking information from service providers) and emotional coping strategies (e.g. seeking support from other parents) to support their child (Lazarus & Folkman, 1984). Study findings also pointed to a need for parents to actively engage with immediate family, social support, and external resources to support adjustment to their new role in the hearing-impairment process (Bronfenbrenner, 1979; Jackson at al, 2008). A strength of this study was the attainment of rich descriptions from parents residing in both rural and metropolitan areas.
Furthermore, discussions occurred with parents who had accessed a range of hearing-impairment services across the state, rather than from a single service or intervention program. The qualitative methodology allowed parent perspectives on support and needs to be fully heard, and as such some issues were discussed which have not been covered in previous questionnaire-based survey work. Some limitations were also noted and must be considered when interpreting the results. Overall, this study had a relatively small number of participants, i.e. 12 mothers and four fathers from 14 families. While efforts were made to include fathers in this research, only four volunteered to participate. In addition to this, all parents self selected to be a part of this study leaving it open to potential volunteer bias. Thus, participants may not be representative of all parents of children with cochlear implants in South Australia. While there were few differences in parent perspectives related to demographic or child factors, future work should aim to recruit more fathers. It is possible that mothers’ and fathers’ needs may differ in ways that it is important for services to understand, although a survey of mothers’ and fathers’ interest in various types of support did not differ in a German study of parents with children with cochlear implants (Spahn et al, 2001). Further, this study was conducted in South Australia, and experiences of parents in other locations may differ. Future work would benefit from recruiting participants across multiple sites to increase the generalizability of the findings. It is also important to note that parents were asked to reflect back on events, situations, and experiences with services that may have occurred a number of years prior to the current study, potentially leading to recall bias. However, because child hearing impairment is such a significant event in parents’ lives other researchers have found parents were able to recall considerable detail regarding their experiences, even years later (Hyde et al, 2010, Watson & Gregory, 2005). This was also found during the current study. Finally, we did not ask parents to consider their own role in supporting their child’s development, for example, by providing spoken language input. Future work should consider this, as parent’s understanding of their own role may influence their perceptions of support.
Conclusion In summary, this study provides preliminary evidence for parental perceptions of support and services within the context of cochlear implantation. This research increases our understanding of the views of parents who directly engage with the services that seek to maximize the language and socio-emotional outcomes of children with cochlear implants, and highlights the strengths and gaps of these services as perceived by study participants. Parent contributions point to a need for service providers to develop a type of support that is not only child-need oriented, but parent-need oriented, to better address gaps in service. However, these findings need replicating in larger samples from other geographical locations. Incorporating parents’ views and needs into service model delivery may also increase parental involvement in their child’s habilitation. This is crucial, given that early hearing loss detection, cochlear implantation, and early intervention may not be sufficient to produce positive language and socio-emotional outcomes for deaf children (Fitzpatrick et al, 2008; Geers et al, 2003; Kirkham et al, 2009). With a deeper understanding of parents’ experiences and needs, health practitioners and service providers will have a greater capacity to develop a broader model of service that enhances parental engagement and coping, as well as child language and socio-emotional outcomes.
Parent perceptions of services for children
Acknowledgements We would like to thank the participants who willingly volunteered their time to participate in this research. In particular, sincere thanks are extended to administration staff at the Audiology Unit at WCH. This research was presented at the Australian Psychological Society College of Health Psychologists National Conference, Cairns, Australia, April 2013. Declaration of interest: The authors report no conflicts of interest.
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Supplementary material available online Supplementary Interview questions available online at http//www. informaworld.com/10.3109/14992027.2015.1060641
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![[Mental health problems of mothers and fathers of the deaf children with cochlear implants].](/assets/img/hold.png)
