Abstract
Parents of implanted children develop a set of expectations prior to implantation about future performance and outcomes of their child. This set of expectations has an important impact on post-implant satisfaction levels. The position of the parent in the household makes them uniquely placed to assess the impact of implantation in the context within which the child grows up. There is strong need to find out expectations of parents from CI outcomes in implanted children. The functional benefits of CI may be measured by administering the parental perception of CI benefits in their implanted wards. The primary aim of the study was to find out different expectations of CI outcomes in parents of CI users and the perception of CI outcomes in the parents of CI users. Secondary aim was to find out the most important concerns of parents towards their implanted children. Twenty families with a child implanted for duration of more than 2 years were selected for the study. Two questionnaires (1) Parent Expectations Questionnaire for Cochlear Implants (Nemours children clinic) and (2) Parents and their cochlear implanted child Questionnaire (O’Neill Int J Pediatr Otorhinolaryngol 68: 149–160 2004) were administered on these parents. Results were analyzed qualitatively. Parents expected their implanted children to use the telephone, to be able to detect soft sounds, to listen in crowds, to be able to easily understand others, and to show improvement in communication skills. The quality of speech, process of implantation, to take time off for the appointments at the implant centre and making decision to proceed with implantation were main concerns of the parents. Parents have a high expectation from their implanted children in all domains of life i.e. communication abilities, social and academic skills. Parents have high positive views about the outcomes of the CI. However there are areas which need attention for a positive outcome from the point of view of parents of implanted children.
Keywords: Cochlear implant, Expectation, Perception, Concerns, Parents
Introduction
There are different methods to measure the benefits of CI including behavioral and electrophysiological measures as well as quality of life questionnaires.
In cochlear implantation, the support of parents and family members is very important in the rehabilitation of children. A questionnaire on parental expectations from children with cochlear implant can provide information on real life situations.
Parents of implanted children develop a set of expectations prior to implantation about future performance and outcomes of their child. This set of expectations has an important impact on post-implant satisfaction levels.
Dissatisfaction with implant performance may be related to inappropriate expectations. Parents need to be well-prepared in terms of what to expect both before and after implantation.
Inappropriately high expectations increase the likelihood that implant use would be discontinued due to lack of parental support. Expectations that are too low may limit the child’s performance outcomes as parents may never challenge their child to listen or develop good auditory and speech-reading skills.
Increased stress frequently arises when there is a discrepancy between parental hopes and expectations and the actual achievements of their child [1].
Professionals working with implanted children need to have an in-depth understanding of the goals, aspirations and expectations parents have for their child, not only prior to implantation, but also over the long term.
The position of the parent in the household makes them uniquely placed to assess the impact of implantation in the context within which the child grows up.
The goals and wishes of parents must be taken into account during the planning of the therapeutical process.
This broader view of outcomes can complement the assessments measured by the professionals at the implant Centre, school or home.
The records of parental comments along with other evaluations, which provide valuable information on the functionality of the child, the implementation process, the necessary additional intervention, and the benefits and limitations experienced, may help the CI service team and the ones responsible for the formulation of public policies in this area.
Applying a questionnaire to parents reflects the view of people deeply interested in the process and results after CI activation in children of different age groups [2].
Need for the Study
There is strong need to find out expectations of parents from CI outcomes in implanted children and incorporate them in devising the therapy goals and plans. It may also guide in proper counseling of parents for real expectations from CI outcome. The functional benefits of CI may be measured by administering the parental perception of CI benefits in their implanted wards.
Aim of the Study
The primary aim of the study was to find out different expectations of CI outcomes in parents of CI users and the perception of CI outcomes in the parents of CI users. Secondary aim was to find out the most important concerns of parents towards their implanted children.
Methodology
Subjects
Twenty families with a child implanted for duration of more than 2 years were selected for the study.
Questionnaire 1
Parent Expectations Questionnaire for Cochlear Implants (Nemours children clinic) [3]. (Translated into Hindi)
Total number of questions was 47 in the 9 different domains of communication abilities, social skills, academic achievements, change in future life, rehabilitation demands, parental satisfaction, stress, relationships and communication.
Questionnaire 2
Parents and their cochlear implanted child Questionnaire [4, 5]. (Translated and adapted into Hindi)
Total number of questions was 106 in which 10 different domains were assessed namely communication, General functioning, self reliance, well being and happiness, social relationship, education, process of implantation, effects of implantation, decision to implant, and supporting the child.
Results were analyzed qualitatively. Scores of agree and strongly agree were combined.
Results
On Parent Expectations Questionnaire for Cochlear Implants
As shown in Table 1, parents expected their implanted children to use the telephone (80%), to be able to detect soft sounds (95%), to listen in crowds (85%), to be able to easily understand others (85%), and to show improvement in communication skills (75%).
Table 1.
Domains in which most parents expected improvement in their CI children
| S. no. | Skills | Parents expecting improvement (%) | |
|---|---|---|---|
| 1. | Communication abilities | To use the telephone | 80 |
| To be able to detect soft sounds | 95 | ||
| To listen in crowds | 85 | ||
| To be able to easily understand others | 85 | ||
| To show improvement in communication skills | 75 | ||
| 2 | Social skills | Should be able to easily make friends with normal hearing peers | 80 |
| 3 | Education | To achieve high standards in their reading and writing skills | 75 |
| 4 | Change in future life | To act like normal hearing children | 80 |
For questions related to social skills showed 80% of the parents expecting that their children with CIs should be able to easily make friends with normal hearing peers, and 75% of the parents were expecting the children to achieve high standards in their reading and writing skills.
Responses to questions related to change in future life showed 80% of the parents expecting their children with CIs to act like normal hearing children. Further, 95% parents showed positive response regarding importance of intensive training.
However, 60% of the parents reported stress in the family due to the existence of the hearing impaired child.
On Parents and Their Cochlear Implanted Child Questionnaire
In Table 2, parents reported to have significant improvement in all ability to communicate (80%), general functioning (85%), self reliance (75%), well being and happiness (85%), social relationship (75%), and education (80%). They agreed that there is lot of work for parents to do after implantation (95%).
Table 2.
Domains in which most parents perceived improvement in their CI children
| S. no. | Skills | Parents reporting improvement (%) |
|---|---|---|
| 1 | communication abilities | 80 |
| 2 | general functioning | 85 |
| 3 | Self reliance | 75 |
| 4 | Well being and happiness | 85 |
| 5 | Social relationship | 75 |
| 6 | Education | 80 |
Following questions showed most important concerns of the parents, as shown in Table 3. The quality of his speech gives me cause for concern (65%), whole process of implantation was intrusive (70%), It has been hard to take time off for the appointments at the implant centre (75%), It is essential that he is encouraged to wear the processor all the time (65%), I worry that the implant will break down (60%), Making decision to proceed with implantation was most difficult part for me (75%).
Table 3.
Responses which showed most important concern of parents towards their implanted children
| S. no. | Skills | Parents reporting concern (%) |
|---|---|---|
| 1 | The quality of his speech gives me cause of concern | 65 |
| 2 | Whole process of implantation was intrusive | 70 |
| 3 | It has been hard to take time off for the appointments at the implant centre | 75 |
| 4 | It is essential that he is encouraged to wear the processor all the time | 65 |
| 5 | I worry that the implant will breakdown | 60 |
| 6 | Making decision to proceed with implantation was most difficult part for me | 75 |
| 7 | There is a lot of work for parents to do after implantation | 95 |
Discussion
Present study showed that parents have high expectation from the CI in all domains of life in their implanted children.
Stefanini et al. [6] administered a questionnaire on 50 parents or guardians of children using CI, and also demonstrated that parents have high expectations regarding communication, independence, and social participation of children after CI surgery.
Most of the parents expect their children to achieve a relatively high level of spoken communication proficiency and thereby be able ultimately to be integrated into mainstream society.
There is high stress among parents of implanted children related to existence of hearing impaired child.
Quittner et al. [7] reported that parents of children with cochlear implants have a high degree of stress and poorer psychological adjustment when compared with parents of normal hearing children.
Weisel et al. [8] investigated stress, attitudes, and expectations among mothers of deaf children who underwent cochlear implantation. They reported no differences emerged in stress levels with different groups of subjects, that is, mothers of CI candidates, 0–3 years post-implantation, and more than 3 years later parents perceived an overall improvement in all domains of life including communication, social relationships, education etc.
Cunningham [9] used a closed-format questionnaire to obtain information from 132 parents of implanted children and showed reported improvements in awareness of sound, speech production and perception.
Most parents considered their children more independent after the surgery. The positive evaluation as for these aspects is related to their hearing ability; therefore, the CI allows children to socially participate in educational environments, developing their self-confidence [10, 11].
High scores in social relations, autonomy, and communication reveals that the better the child’s oral language, the better is their interaction to friends and family, their independency, and autonomy, after CI. The positive evaluation as for these aspects is related to their hearing ability; therefore, the CI allows children to socially participate in educational environments, developing their self-confidence.
Our study suggested that parental concerns are in the areas of quality of speech of the implanted child, process of implantation, lack of time, and decision to implant.
In this study, although the children have been developing their oral language after the CI surgery, many parents reported concerns regarding the quality of their children’s speech, similar to other studies [12]. It is known that the intelligibility of speech is developed in a longer temporal scale than the perception of speech, improving throughout the years after the CI surgery [13], being possible that the quality of speech of these children may improve over time. Thus, it is necessary to orient parents about this fact, besides guiding rehabilitation toward working this aspect.
Conclusion
Parents have a high expectation from their implanted children in all domains of life i.e. communication abilities, social and academic skills.
Parents have high positive views about the outcomes of the CI.
However there are areas which need attention for a positive outcome from the point of view of parents of implanted children.
There is high stress among parents of implanted children related to existence of hearing impaired child.
Therapists should be aware of parental expectations toward their children that use the cochlear implant. Proper counseling on realistic expectations should be given at the different implantation stages.
The parental concerns should be addressed in pre and post implant counseling. Also, therapy goals should be modified accordingly.
Footnotes
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Contributor Information
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