|Year : 2022 | Volume
| Issue : 2 | Page : 61-68
Parental perspectives and attitudes toward the many aspects of cochlear implantation
Priyanka Mohan1, Krishna Yerraguntla2, Bellur Rajashekhar1
1 Department of Speech and Hearing, Manipal College of Health Professions, Manipal, Karnataka, India
2 Department of Medical Rehabilitation Sciences, College of Applied Medical Sciences, King Khalid University, Abha, KSA
|Date of Submission||21-Jun-2022|
|Date of Decision||20-Oct-2022|
|Date of Acceptance||29-Oct-2022|
|Date of Web Publication||10-Jan-2023|
Dr. Krishna Yerraguntla
Department of Medical Rehabilitation Sciences, College of Applied Medical Sciences, King Khalid University, Abha
Source of Support: None, Conflict of Interest: None
Introduction: Although studies have been carried out to know the influence of family support, family size, the modality of communication, socioeconomic status, and maternal involvement on intervention outcomes, fewer studies have addressed parents' views and their attitudes toward the process. The current study aims to assess relatively unexplored domains in the Indian context through the Parents' Perspective questionnaire. Materials and Methods: The participant groups consisted of parents who were visiting implant centers for rehabilitation during the study period. Parents of children who have had at least 1 year of rehabilitation postimplantation were considered as participants. The parents' perspective questionnaire was adapted and modified to be socioculturally sensitive to the Indian population. The translated version(s) of the questionnaire comprising 40 items under 10 domains was administered in person and through telephonic interviews. Expectations and satisfaction ratings from 102 parents were analyzed across different domains. Results: The questionnaire recorded positive responses and satisfaction in all psychosocial domains assessed. A vast majority of parents reported difficulty in decision-making in addition to stress during the pre- and post-operative periods. Conclusions: The parental perspectives emerging from this study can help professionals address parental concerns, provide assistance in decision-making, and contribute to a better and more approachable service delivery system.
Keywords: Auditory habilitation, cochlear implant outcomes, parental expectations, parental satisfaction
|How to cite this article:|
Mohan P, Yerraguntla K, Rajashekhar B. Parental perspectives and attitudes toward the many aspects of cochlear implantation. J Indian Speech Language Hearing Assoc 2022;36:61-8
|How to cite this URL:|
Mohan P, Yerraguntla K, Rajashekhar B. Parental perspectives and attitudes toward the many aspects of cochlear implantation. J Indian Speech Language Hearing Assoc [serial online] 2022 [cited 2023 Feb 5];36:61-8. Available from: https://www.jisha.org/text.asp?2022/36/2/61/367503
| Introduction|| |
The cochlear implant is known to be one of the most successful and advanced neural prostheses, outnumbering the number of recipients of all other types of neural prostheses. Currently, there are over 40,000 individuals worldwide who have received cochlear implantation, of which half are children.
The differences in socioeconomic status, lifestyles, living standards, and education across India make it difficult to understand problems related to hearing impairment and find a common solution. Some of the factors that cause a delay in the decision-making process for a cochlear implant are: the fear of surgery, lack of funds for Cochlear implantation and the subsequent re/habilitation process, and limited knowledge. However, one of the recent studies that assessed Cochlear implantation in different socioeconomic groups in India concluded sufficient awareness among different strata of society regarding cochlear implantation. Sreekumar and Joy evaluated preimplant perceptions and expectations from parents of children who were prospective candidates for cochlear implantation and concluded that most parents had high expectations for the development of communication, social and academic skills and agreed on parental involvement, intense, and prolonged therapy for maximal benefit.
The major factors affecting cochlear implantation outcomes include age at implantation, use of hearing aid before surgery, and cochlear morphology. Parental attitudes toward communication abilities and education have been found to have a positive correlation with the duration of cochlear implantation.
Auditory perception outcomes assessed by Categories of Auditory Performance and Meaningful Auditory Integration Scale tests revealed significantly improved scores for children who underwent cochlear implantation at 5 years or less in comparison to the group that was implanted later. However, children in the group that underwent CI after 5 years of age also had a substantial improvement in auditory perception, as reported.
While there has been a great deal of research in terms of post-implantation outcomes (speech and language, communication, ability to adapt socially, academic performance), there is a dearth of research in other aspects of cochlear implantation such as the assistance provided in the decision-making process, services provided by the cochlear implant center, issues related to cost and funding and the emotional and psychological support given to parents. The Functioning After Pediatric Cochlear Implantation-Hindi is the first culturally sensitive instrument to check for functional language development and communication in the Indian context. It must be noted that parents' views and attitudes are of prime importance for optimized service delivery and improvement on health outcomes. The objective of the current study is to assess parental attitudes and expectations in the various aspects of cochlear implantation through a questionnaire that has been adapted and modified to suit the Indian context. The authors have also aimed to examine domains related to parental stress, emotional and psychological support, Service of the Implant Centre and cost of rehabilitation in addition to general outcome measures.
| Materials and Methods|| |
The study was approved by the Institutional Ethics Committee (Kasturba Medical College and Kasturba Hospital) and the Clinical Trials Registry-India. The questionnaire was administered after having obtained written informed consent from the participants. Anonymity and confidentiality were maintained.
The study design was cross-sectional and had two phases. The first phase involved adaptation, content validation, and translation of the Parents' Perspective questionnaire into three Indian languages while phase two involved administration of the questionnaire.
Parents of children who have had at least 1 year of rehabilitation postimplantation were considered participants. Children who had been rehabilitated at these centers had undergone cochlear implantation either with Government assistance (as a part of schemes or initiatives by the State and Central Governments) or had self-financed the surgery and subsequent rehabilitation. Administration of the questionnaire was carried out by the researcher as well as with assistance from Co-investigators, who were trained, whenever necessary. The participant groups consisted of parents who were visiting implant centers for rehabilitation during the study period. Parents came to the implant center(s) from various regions of India such as: Tamil Nadu, Andhra Pradesh, Madhya Pradesh, West Bengal, Maharashtra, and Delhi. Participants who met the inclusion criteria but were unavailable for review at the implant center were interviewed telephonically. Rahman reported that in-person interviews and telephone interviews are both accurate within acceptable error, and both methods are valid for research studies. Telephonic interviews were carried out with oral informed consent and in the presence of a witness. Telephonic interview and in-person administration of the questionnaire was carried out in the language most comfortable to the parent by a native speaker.
The authors found the Parents' Perspective questionnaire, used by Yorgun et al. to be most suitable to the Indian context. The questionnaire was adapted, modified through a focus group discussion, and content validated to be given its final form [Table 1]. The expert committee consisting of four members was briefed and updated on the domains that have been investigated as a part of previous studies (general outcome measures, communication abilities, academic abilities, and social skills post cochlear implantation) and what the current study aims to cover (services provided by the CI center, guidance in decision-making, cost and rehabilitation and emotional support provided to parents). Content validation of the modified version was done by two Audiologists and two Psychologists, who graded the questions from the original questionnaire using a four-point rating scale and provided suggestions and comments for modifications. Yorgun et al. evaluated 11 subscales and 58 questions in total using the five-point Likert scale. It also had an additional subscale named “Positive effect of the implant.” However, post content validation, 34 questions were retained from the original questionnaire, and six questions are added by the expert committee. The final questionnaire, consisting of 40 questions under 10 domains, was translated into the languages: Hindi, Tamil, and Kannada. The ten domains are: decision for Implantation, Process of Implantation, Support, Communication, Self Confidence, Well-being and happiness, Social relationships, Education, Service of the Implant Centre, and General. The source and reference for the steps of adaptation, translation, and final review of the questionnaire, was a study by Tsang et al. Forward translation of the Parents' perspective questionnaire was carried out by at least two translators both of whom were aware of the concepts the questionnaire intended to assess. Discrepancies between the two were discussed and resolved before making the final version in each language. The final translated document was backward translated. In this step, the initial translation was independently back-translated (from the target language to the original language) to check for the accuracy of the translation. This was done through the assistance of translators (native language speakers); some of whom were naïve, while others were aware of the concept of the questionnaire. Ambiguities and misinterpretations were resolved before proceeding. This was followed by a discussion with the expert review committee. Individuals (four audiologists) who were well aware of the construct of interest, methodology, and objective of the study had a discussion and reviewed all versions of the translated scripts and checked for semantic, experiential, idiomatic, and conceptual equivalence. All discrepancies were resolved before the final translated questionnaire could be administered.
|Table 1: The Parents, perspective questionnaire (adapted and modified for the Indian context)|
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A total of 108 participants were contacted, of which 102 were considered. Six responses were excluded due to reasons such as incomplete responses or withdrawal from the study. The age of recruitment for the study ranged from 26 to 312 months. Out of the 102 children that had been implanted at least 1 year before the study, 56.9% (58) were boys and 43.1% (44) were girls. The mean age of surgical intervention was 43.23 months (standard deviation [SD] = 22) and the mean age at which therapy was initiated was 44.88 months (SD = 22). The questionnaires were evaluated across the ten domains. The demographic details included age at the time of implantation, age at which therapy started, and scheme type in addition to identifiers, age, and gender. Parents answered questions that had an applicable and credible context for the child's age. The questions were rated from Strongly agree (5), Agree (4), Neither agree nor disagree (3), Disagree (2), to Strongly disagree (1) as per the Likert scale and unanswered questions were scored as 0.
All statistical analyses were carried out using SPSS statistical software, version 20. Descriptive analysis was used to interpret responses across various domains. The items were first analyzed individually through frequency measures. The frequencies were then converted into percentages for analysis. Since the individual items of the questionnaire were subject to modifications through adaptation, and subsequent content validation, all the items underwent analysis.
| Results|| |
The figures show the percentages of parents who agree (ratings that were marked as either strongly agree or agree).
Decision for implantation
The Decision for Implantation domain [Figure 1] consisted of five items. 79.4% of the participants felt that it was very difficult to decide about cochlear implantation, while 15.7% did not agree with the statement. About 81.4% of participants voted for the statement, which said that the first few weeks before and after implantation were stressful, and 16.7% did not agree with the statement. 72.5% of participants agreed that they faced difficulty in waiting for the evaluation results and surgery after application to the implant center, while 22.5% did not agree to the statement. About 98% of parents decided for implantation because they wanted their child to be a part of the hearing world, and 1% did not agree to it. All participants stated that they were relieved when their child reacted to sound for the first time.
|Figure 1: Percentages of parents' rating for the domain “Decision for Implantation.” The values indicate the percentage of parents who agree to the statement(s) (sum of the ratings: Strongly agree and agree)|
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Process of implantation
The Process of Implantation domain [Figure 2] consisted of four items. It was observed that 88.3% of the participants felt that it is helpful to meet other families with implanted children, while 3.9% did not agree with the statement. 95.1% of participants felt that parents should get as much information as they could before implantation, whereas 3% did not agree to it. The cost of traveling to the implant center was perceived as a burden for 69.6% of parents, while 23.5% did not perceive it to be so. About 67.7% of parents felt that it was difficult to take time off from work for their appointment in the implant center; while 25.5% did not report any difficulty.
|Figure 2: Percentages of parents' rating for the domain “Process of Implantation.” The values indicate the percentage of parents who agree to the statement(s) (sum of the ratings: Strongly agree and agree)|
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The Support domain [Figure 3] consisted of five items. It was observed that 87.3% of parents felt that their child needed more professional help since s/he received her/his implant, while 7.8% did not feel so. 95.1% of parents felt that their help became more productive after implantation, whereas 3% did not agree with the statement. 98% of parents felt that they should be patient during rehabilitation. 93.1% of parents agreed that it was easier to communicate with their child by speaking than by signing, whereas 3.9% disagreed with it. 92.2% felt that a lot of help at first meant that the child would need less help later, while 4.9% disagreed with the statement.
|Figure 3: Percentages of parents' rating for the domain “Support.” The values indicate the percentage of parents who agree to the statement(s) (sum of the ratings: Strongly agree and agree)|
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The Communication domain [Figure 4] consisted of six items. It was observed that 92.1% of parents agreed that their child was able to engage others in conversation and talked more than s/he used to while 3.9% of the parents disagreed with the statement. 68.6% of the parents stated that they were worried about their child's pronunciation, while 26.4% did not agree with the statement. 86.3% of the parents expected that their child would have better pronunciation after implantation, while 7.9% of the parents did not feel so. 78.4% of the parents had a positive response to the statement “After using the implant, s/he has better pronunciation than I expected,” whereas 9.8% of the parents did not agree with the statement. 75.5% of the parents agreed that they could talk to their child even when s/he cannot see them, while 14.7% did not agree with the statement. 94.2% of the parents agreed that there was an improvement in their child's usage of spoken language, while 2% did not agree with the statement.
|Figure 4: Percentages of parents' rating for the domain “Communication.” The values indicate the percentage of parents who agree to the statement(s) (sum of the ratings: Strongly agree and agree)|
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The Self Confidence domain [Figure 5] consisted of four items. It was seen that 92.22% of the parents noticed a significant improvement in their child's confidence, while 4.9% of them disagreed with the statement. 91.2% of the parents felt that their child was very dependent on them before implantation, while 3% did not feel so. 66.7% of parents felt that their child acted as independent (in communication) as her/his peers, while 22.5% of parents did not agree with the statement. 94.1% of parents now let their child do something on her/his own, whereas 3.9% of the parents stated they do not.
|Figure 5: Percentages of parents' rating for the domain “Self Confidence.” The values indicate the percentage of parents who agree to the statement(s) (sum of the ratings: Strongly agree and agree)|
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Well-being and happiness
The Well-being and happiness domain [Figure 6] consisted of two items. It was observed that 45.1% of parents felt that their child still showed signs of frustration in her/his behaviors and an equal percentage of them; that is 45.1% did not feel so. 96.1% of the parents felt that their child enjoyed listening to music, watching TV, or playing games and 1% of them did not agree with it.
|Figure 6: Percentages of parents' rating for the domain “Well-being and Happiness.” The values indicate the percentage of parents who agree to the statement (s) (sum of the ratings: Strongly agree and agree)|
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The Social relationships domain [Figure 7] consisted of three items. It was seen that 94.2% of parents felt that their child had become more social in the family and took part as an equal, while 2% of the parents did not agree with the statement. 92.1% of parents felt that their child had a better relationship with her/his elderly relatives, whereas 2.9% of the parents did not feel so. 89.2% of parents felt that their child could easily make friends, while 2.9% of the parents did not believe so.
|Figure 7: Percentages of parents' rating for the domain “Social relationships.” The values indicate the percentage of parents who agree to the statement(s) (sum of the ratings: Strongly agree and agree)|
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The Education domain [Figure 8] consisted of two items. It was observed that 75.5% of parents felt that their child could keep up well with the other children at school, while 10.8% did not agree with the statement. 67.6% of parents were concerned about their child's future education, whereas 26.5% did not feel so.
|Figure 8: Percentages of parents' rating for the domain “Education.” The values indicate percentage of parents who agree to the statement(s) (sum of the ratings: Strongly agree and agree)|
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Service of the Implant Centre
The Service of the Implant Centre domain [Figure 9] consisted of seven items. It was observed that 97% of the parents felt that the implant center had provided them with sufficient information about the surgery, while 2% of the parents did not feel so. 99% of the parents felt that the implant center had provided sufficient information about implant use and its precautions, while 1% did not agree with the statement. 92.2% of the parents agreed that the implant center was able to handle any problem regarding the implant, while 2% of the parents did not agree to it. 92.1% of the parents felt that the implant center and the rehabilitation center should cooperate, whereas 1% did not believe so. 91.2% of the parents expected that the implant center should give suggestions about their child's future, whereas 4.9% of the parents did not feel so. 84.4% of the parents gave a positive response to the statement “The Implant centre team members have been acknowledging and listening to my concerns.”. In comparison, 2% of the parents did not. 88.2% of the parents were happy with the emotional support provided by the staff whereas 2% of the parents did not feel so.
|Figure 9: Percentages of parents' rating for the domain “Service of the Implant Centre.” The values indicate the percentage of parents who agree to the statement(s) (sum of the ratings: Strongly agree and agree)|
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The General domain [Figure 10] consisted of two items. It was observed that 29.4% of parents felt that their child had difficulty getting used to the implant, whereas 66.7% of the parents did not agree with the statement. 87.3% of the parents agreed that they could let their child play outside since s/he can hear the traffic and other sounds, while 6.8% did not feel so.
|Figure 10: Percentages of parents' rating for the domain “General.” The values indicate percentage of parents who agree to the statement(s) (sum of the ratings: Strongly agree and agree)|
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| Discussion|| |
In the current study, parents reported difficulty in the decision-making process and stress during the pre- and post-implantation periods. This is in agreement with Dev et al. who reported parental fears about whether; the child could withstand surgery, the success of the CI surgery, and its financial implications. Kumar et al, also reports stress in the family after the child has been diagnosed with hearing loss. This was found to be common across most Indian studies and could be attributed to the socioeconomic and cultural background as well as the country's health-care structure. Kumar et al. studied American parent perspectives and reported stress and concern over the child blaming the parents for their decision of implantation and rejection by the Deaf community because of the implant. Pre- and post-operative stress have been reported by Yorgun et al. who studied the quality of life in pediatric cochlear implantation in Turkey. The present study has found highly positive responses to parents' need for sufficient information before implantation. This is in agreement with Yorgun et al. who reported that 90.1% of parents agreed that they needed more information and recommendation. Education yielded relatively fewer positive ratings in comparison to other domains. This is similar to the finding by Kumar et al., which suggests that parents had felt that their children were not progressing in academics as steadily as expected. A possible explanation for this may be high parental expectations from children to perform similarly to their normal-hearing peers.
The present study has gathered highly positive responses to the statements on the importance of patience and effort in the initial stage postimplantation. The awareness regarding parents' efforts postimplantation is found to be high in the present study, in comparison to the findings of Kumar et al., where fewer participants agreed with the statement on parental effort in the rehabilitation process. This reflects higher awareness in the current day in terms of early intervention and parental participation.
Speaking has been considered easier than sign language, which is in close agreement with the findings of Yorgun et al. Parents have endorsed positive responses to questions on Communication which is in agreement with Kumar et al. and Yorgun et al. Parental expectations in the Indian context studied by Kumar et al. showed that most parents had a positive response to the statement “Will easily make friends with hearing peers.” The current study has also noted high positive ratings from parents on their child's ability to make friends.
The present study gathered more positive responses in comparison to the findings of Yorgun et al. in terms of preoperative information and the implant center's ability to handle any problem related to the implant. Positive responses were also seen for the psychological and emotional support provided by the implant team members. Although the domain Service of the Implant Centre has gathered high positive responses reflecting on the administration and patient care, fewer positive ratings were obtained for emotional and psychological support when compared to the implant center's ability to provide preoperative information and handle problems related to the implant. This is because relatively fewer parents felt that their concerns were being acknowledged and listened to. Positive ratings obtained for allowing the child to play outside and statements on self-confidence were in agreement with the findings of Yorgun et al. However, a higher percentage of children enjoy listening to music or watching TV in the current study. Majority of the parents disagreed that their child has difficulty in getting used to the implant.
| Conclusions|| |
A vast majority of parents have reported difficulty in decision-making and stress during the pre-and post-operative periods. Most psychosocial domains have received positive ratings reflecting parental awareness and satisfaction toward the multiple aspects of cochlear implantation.
Some of the major limitations of the current study are the lack of face validity, as no feedback was gathered from the parents regarding the construct and content of the questionnaire, nor was it pilot tested on a small sample.
The study has a wide age range (26–312 months) which may have affected certain parental perspectives. This may have an effect because of both age and changing times; with the evolution of technology and accessibility. Furthermore, the effects of certain other factors, such as parents' level of education, could have been considered and compared. Future studies may aim at finding out more about which domain(s) best reflects parental expectations and attitudes.
We would like to express our deepest gratitude to Mr. Nirnay Kumar Keshree (Sri Aurobindo Institute of Medical Sciences, Indore), and Mr. Ranjith Rajeswaran, (Madras ENT Research Foundation, Chennai) for their time and valuable input. We are thankful for the support and assistance received from SAIMS and MERF during the study.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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