Cochlear implanted deaf children with additional disabilities : The mothers ’ perspective

The objective of this qualitative study was to evaluate the perspective of mothers, whose children, in addition to being deaf and having cochlear implants, also have additional disabilities. Five mothers participated in this study and semi-structured interviews, together with the children’s clinical files were used to gather data and inductive analysis was used to establish themes. The results indicated that mothers were positive about the assessment and diagnostic procedures, as well as the outcomes of having cochlear implants. They reported differing expectations relating to their child’s development; however, they also voiced concerns about their children’s education and highlighted the need for more intensive rehabilitative support.


INTRODUCTION
For children, who are identified at an early age as having a profound hearing loss, cochlear implants (CI) are considered as the best technology for the acquisition of spoken language.Many studies have indicated normal or near normal language development for children who are identified as having profound hearing loss within the first few months of life, having CI before or around 12 months of age and who are able to attended high quality educational programs (for example, Ertmer and Mellon, 2001;Geers et al., 2003;White, 2006).However, when there are disabilities in addition to deafness, progress with CI varies significantly.There are many factors that affect the outcomes in this group and these present challenges for the professionals who work with them.
Children with additional disabilities are those who require a statement of educational need, even if they are not hearing impaired (Edwards, 2007;Mulla et al., 2013).In the literature, the incidence of additional disabilities in children who are deaf is estimated to be relatively high, ranging from 25 to 40% (Dettman et al., 2004).It is important to note that the level of the additional disability (or disabilities) may be mild or severe in nature and learning implications vary according to severity (Bruce et al., 2008;Edwards, 2007;Edwards et al., 2006;Pyman, et al., 2000).
Most studies conducted with this group have examined both speech and language ability.It has been emphasized that the severity and presentation of the disabilities can vary widely within these subsets, assessment is challenging and clear outcomes are difficult to analyze (Nikolopoulos et al., 2008).Nevertheless, the results of these studies indicated that when additional disability was mild to moderate some development in speech perception, production and development were observed; however, if disabilities were severe, the acquisition of spoken language was prevented (Dettman et al., 2004;Edwards, 2007;Lina-Granade et al., 2010;Pyman et al., 2000;Robinsons and Boyd, 2013).
Although, in order to provide parents and guardians with realistic expectations, it is important to measure the speech-language outcomes of these children, to improve the selection process and to ensure that cochlear implanting is appropriate and provides benefits.McCraken and Turner (2012) questioned the rationale of these studies.They argued that the outcome measure should be of a different nature for deaf children with additional disabilities.They claimed that the severity of intellectual disability would certainly obstruct acquisition of spoken language for some children; thus, the measures that focus on speech perception or intelligibility might be inappropriate outcome measures for this population.Evaluations that focus on psychological wellbeing and quality of life are therefore more likely to be relevant for this group of children.
There are only a few studies that address the experiences of parents of these children and the impact cochlear implantation has had on their children, as well as the wider family.Wiley et al. (2005) analyzed interviews made with parents of children with implants and multiple disabilities but the focus of this study was on communication outcomes.McCracken and Turner (2012) considered the experiences of the parents of deaf children with additional disabilities in accessing CI services and achieving ongoing support.Twelve children with additional disabilities had been fitted with a CI in their group.The results indicated that for some families accessing audiology assessment for CI was problematic, while for other expectations, access to a qualified teacher of the deaf or to FM amplification were challenging.Those children, for whose implantation was delayed, had a very low level of communication skills prior to implantation and parental expectations were uncertain and unclear.They maintained that deaf children with additional disabilities required at least the same access to services as those deaf children showing typical development.It was also shown that although this group required a higher level of input from qualified specialists, some children received substantially less input, and in some cases no specialist input at all (McCracken and Turner, 2012).Mulla et al. (2013) focused on the parents' perspective and looked in detail at their experiences of access to, and outcomes from, cochlear implantation for their children.They reported the appreciation of the parents regarding changes in their child's communication and social changes, allowing the child to be more included in family Turan 67 life.Challenges relating to delays in the assessment process were also reported in this research, as in the McCracken and Turner (2012) study.They also explained the difficulties associated in accessing the technology and perception of some parents as discriminatory.The use of cochlear implants is also a feasible option for deaf children in Turkey.Studies relating to the Turkish population with cochlear implants, regarding the speech and language development of these children, have indicated good results (Belgin, 2006;Özdemir, 2006;Turan et al., 2012); furthermore, there is also a growing body of research on the academic skills and educational placement of implanted children (Karasu et al., 2011).On the other hand, there is no consensus on the implantation of deaf children with additional disabilities and no studies have been found in the literature relating to deaf children with additional disabilities in the Turkish population.The educational support and placement of children with additional disabilities are unclear and the benefits of implantation have not been assessed.Parental counseling during the implantation process has not been defined and for this special group parental needs have not been established.
Considering the limited amount of research regarding implanted children with additional disabilities, it is important to gain insight into the positive and negative aspects of the implantation decision and evaluation process, education and observed changes in life, in order to provide more accurate information to parents and offer better services to these children and their families.Therefore the objective of the present study was to ascertain the mothers' views of their implanted children with additional disabilities.

METHODOLOGY
In the present study, the methodological approach used for encapsulating the participants' perspectives was a qualitative research design, conducted using semi-structured interviews.The advantage of using a qualitative approach in this study was that it provided a deeper understanding of the experiences and attitudes of the mothers towards the use of CI for their children when they have additional disabilities.The mothers' accounts can be used to generate concepts, meanings and theories, by which their experiences of CI may be further evaluated.Semi-structured interviews enabled the researchers to cover the same topic in all interviews, while providing opportunities to the participants to speak about the significant issues according to their experiences (Creswell, 2005;McCracken and Turner, 2012;Mulla et al., 2013;Thomas, 2003).

Participants
Purposive sampling was used to select participants for whom the research topic was relevant (Creswell, 2005;Thomas, 2003).Among the 23 children with additional disabilities who attended our center, a total of ten children had received cochlear implants.The families of three of these children were found to have changed their contact details and could not be located and a further two were unable to attend to their appointments.The remaining five mothers  volunteered to take part in the study during their annual controls.All children had profound hearing loss, severe cognitive disabilities, as well as developmental delays.Their ages varied from three to nine years.Tables 1 and 2 present demographic data related to the mothers and children in the study.
As can be seen in Table 1, none of the mothers worked outside home and of the five, only one mother used to work as an accountant before the birth of her child; however, following her son's diagnosis with CMV, she had to leave her job to manage his health issues.During the data collection, two of the fathers were unemployed; they received support from their extended families.All the families had state support, which in Turkey is provided for children with special needs.The data indicated that all families in the study were from the low-income group.
As can be seen in Table 2, hearing loss was diagnosed within the first six months of life in two children and one child was born before newborn hearing screening became a regular procedure in Turkey.In this case, his family had suspected hearing loss when he was around eight months of age and diagnosis was established at 14 months.Although one child had actually passed the screening test for otoacoustic emissions (OAE), hearing loss was eventually diagnosed at 12 months and subsequent evaluations involving auditory brainstem responses (ABR) indicated auditory neuropathy spectrum disorder.The other two children were diagnosed and fitted with hearing aids prior to their first birthdays.

Data collection
The study was conducted in Anadolu University, Research and Education Center for Hearing Impaired Children, Eskişehir, Turkey.Various sources were used to collect data.The mothers were interviewed using a semi-structured format.The questions were about the assessment process, educational support, observed outcomes of CI and significant issues, according to their experiences.The interview questions are presented in Appendix A. Participants met with the author at the clinic before the parent guidance session or their child's regular audiology control.All interviews were video recorded and each lasted between 30 and 45 min.The children's clinical and educational files were used to collect demographic data.

Analysis of the data
The recordings of the interviews were transcribed, coded and an inductive data analysis was carried out, allowing the major categories and themes to arise from the data.The reason for using an inductive approach was to establish clear links between the research objectives and the summary findings derived from the raw data.Some of the assumptions, which can be seen as underlying the use of a general inductive approach, are described below (Thomson, 2003): 1. Data analysis is determined by both the research objectives (deductive) and multiple readings and interpretations of the raw data (inductive).Accordingly, the findings are derived from both the research objectives outlined by the researcher(s) and findings arising directly from the analysis of the raw data.2. The primary mode of analysis is the development of categories from the raw data into a model or framework that captures key themes and processes judged by the researcher to be important.The research findings result from multiple interpretations made from the raw data, by researchers who code the data.Inevitably, the findings are shaped by the assumptions and experiences of the researchers who conduct the research and carry out the data analyses.In order for the findings to be usable, the researcher (data analyst) must make decisions about what in the data is more or less important.3. Different researchers are likely to produce findings that are not identical and have non-overlapping components.4. The trustworthiness of the findings can be assessed using a range of techniques, such as (a) independent replication of the research, (b) comparison with findings from previous research, (c) triangulation within a project, (d) feedback from participants in the research, and (e) feedback from users of the research findings.

Trustworthiness
Involving an independent researcher in the analysis of the data ensured that these categories and themes were not subject to the perspective of an individual researcher.Two of the parents, who were willing to participate in the analysis, also read the transcriptions and approved the transcriptions and themes.

FINDINGS
Analysis of the data revealed six major themes relating to the interview and the mothers' narratives: Experiences concerning assessment and diagnostic procedure, positive outcomes with CI, educational issues, support from relatives, expectations as perceived by the mothers, relating to the children's development and needs.

Assessment and diagnosis procedure
All the parents reported that they had to attend the hospital several times for a diagnosis of both hearing loss and additional disability.They all mentioned the first year of their child as being 'exhausting' both emotionally and physically.
"I used to go to the hospital, sometimes three times in a week.I had to change public buses a couple of times to get to the faculty's hospital from where I lived.When we reached there he would not fall asleep for testing to be done because of his condition.There were irregularities in his sleeping pattern during his first year.I remember sleeping only 2 to 3 h most nights and he used to cry a lot (m2).""Right after his birth we were on the buses.Going from one hospital to another, looking for a cure of CMV and later for hearing loss (m5)."They all appreciated that the audiological process had gone smoothly apart from a few repeated tests.They were all guided towards CI at an early stage by the audiology clinic they attended.But some complained about the negative attitudes of some medical doctors concerning the implantation of children with additional disabilities.
"The neurologist in fact delayed us both for the hearing aid fitting and implantation.She did not approve the papers for the operation.Teachers from the research institute on disabled children kept writing reports.She made us wait until he was four years old.If he had his implant earlier he would be better off (m1)." "On the final phase of the assessment the psychiatrist confused me.I heard him talking to his colleagues and saying that B's disabilities were so severe and he would Three mothers reported some understanding with the help of visual cues and one mother said that the child has ten words and sound imitations to express her basic needs in the home.All the mothers reported increased vocalization.

Education
All the children had support from teachers of the deaf.At the time, four of the children had two hour long sessions of special education per week.One of them had also started kindergarten for two hours per day within a regular school.The oldest one attended a school for children with mental disabilities with support from a teacher of the deaf.Four of the children had weekly physiotherapy sessions for their physical development and support.The mothers mostly expressed their satisfaction from the weekly support; nevertheless, some voiced problems relating to the school their child attended.
"He attends a school for mentally disabled children.It is his 4 th year.The first two years were a bit messy.Regular classroom teachers taught in preschool.a teacher for the mentally disabled was assigned for his classroom.I asked the principal if we could get a teacher of the deaf.He advised me to write to the ministry of education.Now we have our teacher of the deaf.Both teachers work together in the class.The teacher of the deaf has made a big difference for him…now he follows writing lines… does painting… he has learned colors….(m1).""K is very happy in the nursery… but his teacher has created a few problems… to be frank, she does not want him in her class… she spoke with the principal to minimize his hours in the class… and she makes me wait in the school in case anything happens… and I go there every day to wait for two hours.If she says wait for four hours I wait for four hours, if it is five hours I wait for five hours...She won't be able to discourage me.I said, "you are showing me the door, you want my child to leave the school,"… they said "no, no, we don't want you to leave, but in case of any trouble you should be in the school."My child does not do any harm to anyone … (m5)."

Emotional support
Four of the mothers reported having support from their spouses and family members.One mother had no support at all."… Without my husband I would not be here in the first place.If we did not support each other S would not be what he is now.In K (the city where they lived) I know children who could be much better off than S. Their capacities are larger then S … but they are delayed more than him since their parents did not accept their condition.Either mother or father… one of them leaves their family… (m1)." M1 also described her communication with the mothers of other disabled children as being more meaningful and satisfying than her other friends and family members.

"…because…we all share same concerns…I can't feel the same with other friends in my village... they usually talk about their children's abilities, which my child doesn't have… when we come together with other mothers in his school, we usually talk about the activities we might do for their progress (m1)."
"I was on my own by that time.My husband had had a traffic accident at that time and had also undergone surgery.We also had no relatives living nearby.I still do everything on my own (m2).""My mother in law helps me a lot.When I do housework she looks after B. Since I injured my knee she also takes him to the rehabilitation center.He is too heavy now.I can't carry him around in my physical condition… (m3).""My parents and my sister were by my side all the time.My husband needed sometime to accept E's condition.He stood away for a while (m4).""When we first came here (to the university clinic) I was expecting different things..… like you would say that the diagnosis was wrong, and would confirm normal hearing….when we got the same results I had a great disappointment.I cried for days….I could not stop myself... Then I wanted to move here to get educational support.My husband didn't agree with that because of his job.We really had a difficult time, lots of quarrels.I kept crying… could not cook for days… I don't know… it was a constant sorrow…then my husband understood that I was not good we started to look for solutions… during those times our families were always with us… and friends … our families and friends visited us frequently… They never left me alone… those days were very hard….Acceptance is a big step.When you accepted the things they become easier.After that we started to looked for things we can do for K. How could he be better off?We wanted him to live on his own, without needing us….So we started to work on that (m5)."

Expectations
All the mothers were seen as hoping for a more physically independent child.At the time of the data collection only the oldest child (c1) was able to walk without support.The others were all in need of varying degrees of physical help in order to move around.One child was not able to support his neck or sit unaided.

"I want him to walk. I hope he says "mother" and speaks…at least some words to express himself. I hope he will not be in need of anyone. I hope he will get his needs on his own (m2)." "The neurologist says he will be able to walk because he has started to sit. He walks by holding around now if he wants to…. I hope he can walk (m3)."
One mother reported her expectations, as her child attaining normal development and attending regular schools.
"If we can control her behavior problems, I believe she will become normal gradually over time...As our neurologist says... she will catch up with her peers in future... it is my hope that she will start special education school first.Then in time she can go to any school as she wants (m4)." In contrast one mother expressed low expectations when considering her child's future.
"What do I expect?Nothing much really… I hope he will learn to take care of himself… he had toilet training if I don't take him he wets himself… he still needs to discriminate strangers from the family.A job? Very difficult... may be something like carrying the things around in an office… (m1)."

Perceived needs
The mothers reported different needs.

"I wish I could have get some more spiritual support. I sometimes feel very lonely. Even the closest people in our lives cannot understand our condition … Normal children wander around and talk… though S sits quietly and plays with a mobile phone or a computer… or watches a washing machine and everyone says he is okay now. But he is not. We have worked a lot with him, been to hospitals, rehabilitation centers and yet we still have troubles… it is very difficult… (m1)." "If I had support for housework, that would have helped me a lot. I have to look after his sister and my husband as well… and do the all work at home. If I had someone for help I would have spent more time with B (m2)."
"I think we need more sessions in rehabilitation.We only have 45 minutes in a week.It would be better if he had more sessions or daily support (m3)." "…for instance we were going for physiotherapy…no transportation was provided.It was very difficult... since she doesn't walk I had to carry her… it made my arms weak and vulnerable.We could not establish a warm relationship with the physiotherapist either… however in the rehabilitation center all of the staff are lovely… they have been very positive to us… They never made us feel bad by criticizing… instead they corrected our mistakes by showing the right way… smiling faces and warmth are the best treatment for us... (m4)." "We need quality special schools in our district as well.We came here because in our town there is no special school for our child.When he started kindergarten with normal children I thought that he found his place and I might have some time for my own.But they didn't want him in the classroom and we faced lots of problems with the teacher.They still make me sit there all the time.We want our children to get a good education but no one is interested in us… Implant maintenance is also very expensive.We don't get enough state support for the replacement parts (m5)."

DISCUSSION
The narratives provided by this group of mothers enabled us to share their perspectives and experiences.The results of these interviews indicated that the early months were difficult with differentiations in terms of the needs and development of their child.Parents faced a new world of terminology, many visits for medical appointments, and frequent testing, to establish the hearing status of their child.The child's care routines extended well above what was typically expected.The early years were therefore unlike that of typically developing children who are deaf, where parents are usually focusing on the identification of deafness and the implications this may have for their child and family (Mulla et al., 2013).
Although these were difficult times, none of the parents reported having professional support.It seems that their social network provided the necessary assistance both physically, like sharing the housework, or psychologically, like providing empathy during these hard times.It appeared that they did not get any official aid, either, during their child's first year and they had to deal with every obstacle on their own.A lack of trained professionals may explain the inadequate service.It could be suggested that parent support groups are formed to provide more organized support for families immediately after the diagnosis, to help deal with the unsatisfactory professional support and, as explained by one of the mothers in the study, it could also be encouraging for the parents to connect with someone who shares the same problem.This area still needs to be explored but it might be a solution for developing countries such as Turkey, where there are limited human and material resources.
On the other hand it is reassuring that the children in the present study were aided around their first year of life, apart for the oldest one, who was born before the hearing screening program was established in Turkey.The young ones also had their cochlear implants before or around their second birthday, which provided earlier access to sound and this could enhance their chances of improving their communication skills and quality of life.These results draw a more optimistic picture than earlier studies, which described more complications in the audiological evaluation and significant delays in access to hearing technologies (Nikolopoulos et al., 2008;McCracken and Turner, 2012;Mulla, et al., 2013;Robinson and Boyd, 2013).However it should be noted that the results of the current study were only established from one center and are limited when representing the wider population.
When taking additional hearing technology into consideration, none of the children in this study used FM systems in daily life.One of the most common problems within the Turkish system is that social security does not cover the payment of FM systems for deaf children.They are vital in noisy and crowded situations for children with hearing loss to get better understanding of speech and is even more vital for children who have limited cognitive skills to have FM systems (McCracken and Turner, 2012;Robinson and Boyd, 2013); otherwise, identifying signals in an interruptive environment can be impossible for these children.
Attitudes of professionals are found to be affecting parental susceptibilities.Some parents complained about the disapproving attitudes of professionals during the evaluation for implantation.It is possible that, when a child's disabilities are severe and that spoken communication is an unlikely outcome, any amplification may be viewed with some skepticism (McCracken and Turner, 2012).Professionals may feel that providing CI is unnecessary when considering the complexities in the child's development.This point of view perceives amplification as being only for language acquisition; nevertheless amplification is also a way of connecting an individual to their environment.As a result of hearing being provided by amplification, the children can attach meaning to events and gain information about his/her surroundings.Such access may help to provide a sense of integrity, and predictability.It may potentially help to soothe a child, provide comfort, and a sense of well-being (McCracken and Turner, 2012;Mulla et al., 2013) and the findings of this current study support that view.All mothers in our study reported positive changes in the children's behavior, more awareness of the environment, an increased sense of communication and more connectedness for the child.
The parents also reported satisfaction with the level of rehabilitative support they currently had; however, it seems that when the children started school problems occurred.Only two children in the present study attended a school: one was at a special school for children with mental disabilities and the other was at a regular nursery.Both mothers described the schools' various difficulties.On this issue the Turkish educational system is quite blurred, leaving parents alone in terms of getting the necessary support for their children, inevitably resulting in further disadvantages for them.This group of children requires an individualized and structured approach to supporting the development of communication and listening skills, as well as to improve their cognitive skills.It is therefore not surprising that regular classroom teachers who had no experience or information on the educational needs of children with multiple disabilities had problems with the management of the child in the classroom, as well as problems with the parents.Teachers require clear information regarding the use of the CI, and on-going support for these children's education.When a child is deaf and has additional disabilities, the involvement of multi-professional teams is necessary.It is important that, to ensure that services are child centered and complementary, a holistic view is taken of both the child and the family's needs (Mulla et al., 2013).With this group, audiologists need access to the growing body of research regarding the use of CI.Similarly, teachers of the deaf should be aware of the research and apply their specialist skills to all deaf children, regardless of the additional needs (Edwards, 2007;McCracken and Turner, 2012;Mulla et al., 2013).
With regard to their children, the expectations of parents appeared to concentrate on physical independence with only one mother expressing concern for the adult life of her son.She is the mother of the oldest child and it is possible that she had observed and experienced more in relation to the atypical development of her son.The other children are still very young and the mothers may still hope that their child could achieve typical developmental patterns.Indeed, one mother in the group even expressed her expectation that her child would close the gap with typically developing children and attend any school she wanted.Bearing in mind that all the children in this study had severe cognitive and developmental delays, her hope is unlikely to become a reality.It is likely that some of these children will need lifelong care and support; however, the mothers either seemed unaware of this reality or possibly could still be in the denial stage and unable to face up to it.It might be helpful to remind the parents and explain their child's situation in special sessions, which are sensitively designed and take the parents vulnerability into consideration, in order to provide better understanding and insight regarding their child's condition.
The finding of this study implies differing needs in parents; some required more emotional support while others were more concentrated on educational aspects.It was interesting to note that none of the mothers were seemed worried about their children's hearing capabilities.They seemed quite satisfied with the sound provided by the cochlear implants and their enhanced communication following the implantation and more focused on the other disabilities.This finding is further encouragement for the benefits of implants in cases children with additional disabilities to deafness.They all required more frequent rehabilitation sessions in terms of disabilities other than deafness.One parent who had a negative experience with the regular school voiced the need for special schools for her child.
As already mentioned, the educational aspects of these children are still unresolved.The current policy is either to place these children in regular classrooms with their typical developing peers or in deaf schools.However, if good support for the classroom teacher is not provided, this educational placement may not be suitable for children with severe cognitive and motor delay.Therefore, some other educational placements should be designed.It is obvious that education for these children requires teamwork and schools for children, who have severe cognitive delays, are an option together with support from a teacher of the deaf in order to improve this group of children's quality of education.It is also possible to provide specialized teachers, to teach children with other disabilities attending deaf schools.It is also important to train the audiologists with whom the majority of families have initial contact cases of hearing loss.They should recognize that this group is not a small minority but a significant group that requires an informed professional approach (Edwards, 2007;Mulla et al., 2013).
Overall, the results of this current study imply that even though the children in the study have severe disabilities, they have made use of CI.Clinical evaluations have indicated that they respond to the environmental and speech sounds even though they lacked expressive language.The mothers' statements support the clinical findings and describe the benefits they observe during their daily lives.These results are encouraging while deciding on CI for this group, particularly in countries like Turkey, which has no clear consensus on the decision making process and have only limited resources.It is recommended that educational services should be evaluated in detail with further studies and strengthened to maximize the benefits of implantation, instead of simply not offering implants to this special group.It also should be noted that the families in the study were in a low SES group.They were pushing the limits to get educational support and the expenses for CI and were highly cooperative with the professionals.The determination of these parents to provide a better life for their children should also be considered, while deciding on implantation and the provision of support.

Conclusion
It can be argued that the needs of cochlear implanted children with additional disabilities, as well as their families, are different from those of children who only have hearing loss.The schooling of these children seems problematic, lacking the provision of support in different areas of development, as well as the necessary support for listening and language development.On the other hand, during their preschool years, increasing the amount of rehabilitation sessions and providing support at home may help to develop the relationship between the families and their children.It can also be suggested that offering training to parents, psychologists, social workers and educators, in order to provide emotional support, in groups as well as in individual sessions, will help parents to cope with their feelings of loneliness.

Table 1 .
The demographic data of the mothers.

Table 2 .
The demographic data of the children.

Age of diagnosis *Age of HA fitting *Age of CI Additional disability Aetiology
Turan 69 be better if he had not the surgery at all.I talked to our ENT about it.She said if he does not have an implant he would have no possibility to access sound.With the implant at least he would be able to hear sounds even if he would have no speech (m2)." "We did not see much difference at first.But in time he started looking around.He is more interested in the environment now.He smiles more.He wants to go out.Before CI he never wanted to go outside or see other children (m3).""Before the implant it was like she had a life of her own.I was trying to get in to her world.But I guess she only let me in from a narrow path.Now she has become more involved in life.She wants to play with her peers, wants to share, she watches my face until I finish my sentence (m4)."Two of the mothers suggested a sense of increased security."Hestarted to recognize people after the CI.He used to go with anyone who shows him a mobile phone.Now he looks at the person and if he does not know him he turns his back and comes to me (m1).""He loves motorbikes.If someone invites him for a ride he would have gone with him.He recognizes strangers now (m3)."