|Year : 2021 | Volume
| Issue : 2 | Page : 60-64
Validation of the arabic version of parental expectation questionnaire among cochlear implant recipients
Roa Halawani1, Aisha Alradadi2, Yassin Abdelsamad3, Fida Almuhawas4, Abdulrahman Alsanosi4
1 Otolaryngology Head and Neck Department, Ohud Hospital, Almadinah; King Abdullah Ear Specialist Center (KAESC), College of Medicine, King Saud University, Riyadh, Saudi Arabia
2 College of Medicine, King Saud University, Riyadh, Saudi Arabia
3 Research Department, MED-EL GmbH, Riyadh, Saudi Arabia
4 King Abdullah Ear Specialist Center (KAESC), College of Medicine, King Saud University, Riyadh, Saudi Arabia
|Date of Submission||21-Sep-2020|
|Date of Decision||06-Nov-2020|
|Date of Acceptance||07-Nov-2020|
|Date of Web Publication||02-Jun-2021|
Dr. Roa Halawani
Otolaryngology Head and Neck Department, Ohud Hospital, Almadinah, P.O. Box 42354
Source of Support: None, Conflict of Interest: None
Objectives: The cochlear implant (CI) recipients and their families form an integral part of the CI team. The decision about CI is challenging for parents and their support is essential during rehabilitation. The families should have realistic expectations from the implantation, as unrealistic expectations cause frustration, negatively impacting the outcome. This study aimed to translate and validate the parental expectation questionnaire by evaluating the outcomes of their children after CI in the Saudi population. Materials and Methods: A questionnaire-based study was conducted at a tertiary hospital from June 2018 to July 2019. Altogether, 100 parents of children undergoing CI answered a questionnaire of 18 questions regarding the expectation of their child's performance and refilled it after a year of surgery. All healthy prelingual pediatric patients accepted by the CI committee for bilateral CI with at least 1 year follow-up postoperatively were included in this study. The main outcome measures were parents' awareness and expectation about CI. Results: The study showed parents having high expectations from their children with CI. The parents were more aware about the rehabilitation demands and stress after CI surgery with 16% of parents unaware of the importance of the rehabilitation process. Conclusions: Proper counseling on realistic expectations should be given at different implantation stages; pre- and post-implantation for an improved outcome and helping the child in reaching full potential.
Keywords: Cochlear implantation, expectation, parents, Saudi Arabia
|How to cite this article:|
Halawani R, Alradadi A, Abdelsamad Y, Almuhawas F, Alsanosi A. Validation of the arabic version of parental expectation questionnaire among cochlear implant recipients. Saudi J Otorhinolaryngol Head Neck Surg 2021;23:60-4
|How to cite this URL:|
Halawani R, Alradadi A, Abdelsamad Y, Almuhawas F, Alsanosi A. Validation of the arabic version of parental expectation questionnaire among cochlear implant recipients. Saudi J Otorhinolaryngol Head Neck Surg [serial online] 2021 [cited 2021 Jul 23];23:60-4. Available from: https://www.sjohns.org/text.asp?2021/23/2/60/317439
| Introduction|| |
Cochlear implantation (CI) is a surgical procedure carried out to treat the deaf patients who are not getting benefits from conventional hearing aids. The implantation process in children is considered as an important turning point with crucial timing for better outcomes. Parents usually make this life-changing decision on behalf of their children.
The effectiveness of the implantation not only depends on the surgical procedure but on the other CI team members as well. The CI recipients and the parents have an important role in that team. Parental knowledge and their support have a major role in the rehabilitation process. This role is assigned to the parents and all the family members sharing the child's daily life.
A majority of the parents whose children undergo CI surgery believe that the surgery will increase the child's ability to communicate and will help in their education with a better future. Consequently, a lesser outcome may result in the family getting frustrated, which could have a negative impact on the rehabilitation process., Furthermore, some parents with a normal progressing CI child are unhappy with their child's achievements due to over-expectations. However, other parents may be excited and thrilled despite the noticed and delayed achievement of their children with CI.
Collective inputs from the parents of CI children can give the decision-makers an idea on real-life practical situations rather than expectations. Thus, comparison of the preoperative parents' expectations regarding the CI impacts on the quality of life of their children with postoperative outcomes is critical. Some studies addressed the impact of parents and their expectations on the outcomes of CI., However, to the best of our knowledge, there are no studies addressing this issue with regards to the Saudi population.
The main objective of this study was to evaluate parental knowledge about the effect of CI on the evolution of the child's performance in different fields of life. This was achieved by translation, validation, and utilization of the Nemours Children's Clinic program questionnaire. The main studied fields included communication, social relationship, educational achievements, future life, rehabilitation demand, and stress-free life.
| Materials and Methods|| |
A cross-sectional, psychometric validation study was conducted as a questionnaire-based study from June 2018 to July 2019 at a tertiary clinic. This study was approved by the Institutional Ethical Board (approval No. 18/0434/IRB) and research and development agreement was obtained for this project.
The sample size of a minimum of 100 participants was targeted based on nonprobability sampling methods. The utilized questionnaire consists of 18 closed-set questions covering 6 domains of parental expectation about the CI. These 6 domains were communication abilities (6 questions), social skills (3 questions), academic achievement (2 questions), change in a future life (2 questions), rehabilitation demand (3 questions), and stress due to hearing impairment (2 questions). All questions were in the form of 5-point Likert scale. All questions were selected from a list prepared by Nemours Children's Clinic, Florida, USA.
The translation process was divided into three steps. The forward translation of the questionnaire from English into Arabic language was performed independently by 2 bilingual speakers. Then, 2 forward translations synthesized into a final forward version by consensus of the investigators. Another 2 competent bilingual translators did the back translation into English. After that, the back-translation compared with the original questionnaire for a reasonable match. Finally, the questionnaire was pretested in a group of experienced audiologists who were fluent in both Arabic and English to determine whether it was understandable and easy to complete. Minor dialect related adjustments were made to obtain the final Arabic version.
The selection of the sample was performed randomly from our CI admission clinic. All prelingual children; with bilateral profound sensorineural hearing loss who had been accepted and approved by the CI committee at our institute, using their bilateral CI continuously for a minimum of 1 year with a regular follow-up in the audiology and speech pathology clinic were included. The children with co-existing health problems, developmental delays, or special needs were excluded as they are challenging in the rehabilitation process taking longer to reach milestones and may need more time to attain skills compared to their normal peers.
Before collecting the responses, an informed consent was obtained and a short explanation about the study purpose written in the online version was given to the parents before the surgery. Then, the same steps were followed 1 year from the surgery. The data were analyzed using IBM SPSS Statistics, version 24 (IBM Corp., Armonk, NY, USA). The normality of data was checked first, and most data variables were found nonparametric. The comparison between the groups was done using the Wilcoxon Signed-Ranks Test.
| Results|| |
This study was conducted on a total of 100 participants with a closed-set questionnaire composed of 18 questions distributed to the parents preoperatively in the admission clinic then 1 year later postoperatively. The questionnaire to evaluate the parents' expectations from their children after offering CI consisted of the following categories; communication, social relationship, educational achievements, changing in future life, rehabilitation demand, and stress-free life.
The comparison between the groups is outlined and compared in [Figure 1]. The parent's expectations regarding the communication skills were 74.18% preoperative, and 79.32% postoperative. This difference found to be statistically significant with P < 0.05. The responses ranged between 33% agreed to the statements and 50% strongly agreed, in contrast, only 1% disagreed to the statements and 3% strongly disagreed, preoperatively. Postoperatively 55% agreed to the statements along with 24% strongly agreed as well as 2% disagreed with the statements and 1% strongly disagreed.
As shown in [Table 1], this domain consisted of 6 questions covering many aspects of communication: The expectation of hearing high-frequency sound (Question 1) was statistically significant in comparison to postoperative. Similar results were found in hearing low-frequency sound, discrimination, and hearing in noise (Question 2, 4, 5). While the expected improvement in the quality of sounds and overall communication improvement (Question 3, 6) were not statistically significant.
Furthermore, the demand for postoperative rehabilitation consisting of three questions was also statistically significant with P < 0.05. Whether there was an expectation of rehabilitation requirement postoperative (Question 14) or the parent roles and effort in this journey (Question 15, 16). The mean values of this category were 74.76%, and 98.06% pre- and post-operative, respectively. Approximately 40% of parents agreed to the statements and 34% strongly agreed, while 12% disagreed with the statements and 4% strongly disagreed preoperatively. Furthermore, postoperatively, 19% agreed to the statements along with 79% strongly agreed but no one disagreed with the statements and 1% strongly disagreed.
Moreover, regarding the stress on families due to hearing impairments including 2 questions (Question 17, 18). Around 21% of parents agreed with the statements and 42% strongly agreed, as well as 6% disagreed with the statements and 2% strongly disagreed preoperatively. Compared to 39% agreed to the statements along with 43% strongly agreed, 9% disagreed with the statements, and only 1% of parents strongly disagreed postoperatively that they will have a stress due to rehabilitation demand after CI.
Comparing the remaining categories about social relationship (Question 7, 8, 13), educational achievement (Question 10), and change in future life expectation (Question 11, 12) were not statistically significant except the expectation of the academic performance improvements (Question 9) which showed a mean value of 72% preoperative and 77.8% postoperative [Table 1].
| Discussion|| |
In this study, we looked at the parental expectations about the cochlear implantations using a closed-set questionnaire. CI in particular needs a constant collaboration between the CI team and the parents due to the irreversible nature of the surgery. This kind of study could help the physicians to address the parents' needs for information, support, and guidance.
In this study, when comparison was made between the groups to evaluate the parental expectations, a significant difference was found between the expectations before the procedure and the child's progress following it. Compared to a study conducted in India by Prawin Kumar of 23 parents of children who underwent CI related to the same above mentioned categories, high expectations regarding communication skills, social abilities, academic performance, and changes in their children's coming life expected by the parents were reported.
On the other hand, Stefanini et al. reported that 50 parents of children using CI, for one to 3 years postimplantation were pleased with high expectations in communication and independent social participation of their kids. Furthermore, Nikolopoulos et al. mentioned that CI achieved parental expectations in the communication abilities and the development of speech and language.
Parents are considered to be the cornerstone of the rehabilitation process following CI. The involvement of the family in the habilitation of their child with a hearing impairment significantly gives positive early outcomes. This study observed that some parents (16%) prior to CI usually underestimate the importance of the rehabilitation process. Therefore, we need to have more family awareness about the role of the family in this vital stage of the implantation through social media and family counseling sessions to ensure that the parents have relevant information with all their questions answered before the surgery.
In this study, responses to the questions related to stress in the family showed a significant stress in parents having children with hearing impairment. The factors contributing to the stress are not related to the age of diagnosis as an early diagnosis before the age of 18 months will affect parent-child bonding and subsequent parent behavior, with a later diagnosis, also leading to poorer language development. Other factors contributing to the family stress are delayed surgical intervention, device reliability, and child behavior toward the rehabilitation process. Seeking wrong resources due to lack of awareness or poor communication with a successful CI family is another major factor toward the unrealistic expectations.
In our region, no previous studies have been conducted to compare the parental expectations pre-and post-CI. Proper counseling on realistic expectations need to be given at pre- and post-implantation for better outcomes and will help the child reach the full potential.
This study has a good sample size which gave us a good opportunity to stratify our data as well as compare the two groups pre- and post-implantation. However, this study was done in a single institute and we recommend a multicenter study to have an idea about the accurate expectations in the Saudi population.
| Conclusions|| |
Despite the parents having high expectations from their children after using CI, the existing questionnaire-based study showed that parents were happy with the outcomes of the implantation. At the different stages of pre- and post-implantation, families should be well-motivated and properly counseled with realistic expectations. This could achieve better results, lead to a beneficial CI journey, and help the child to reach the full potential. Further studies should be done on relevant topics to assist children with CI and their families to get the most benefits.
This was one of the recommended research projects by the Saudi Otorhinolaryngology Society. The authors would like to thank Miss Jessy, Dr. Faisal Alshowear and Dr Suluman Alsuluman for collecting and analyzing the data in this research.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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