Identification and Intervention of Hearing Loss in Maharashtra: A Survey of Parental Experience

Introduction

The most commonly used sense for communication is hearing. In humans, the ability to listen helps us to connect to the world. Verbal communication with other people depends on our ability to hear and understand speech sounds. Audition leads to the development of speech, verbal language, cognition, pragmatics, and educational development. Hearing loss at birth has an adverse effect on a child's overall development.¹ Childhood hearing loss affects speech production, language development, and cognition of a child, consequently affecting academics leading to under achievements in school.^2,3 All these will have an impact on a child's self-esteem and social skills. Communication difficulties lead to social isolation, poor self-concept, and lesser employment and vocational choices, leading to frustration and might cause hyperactivity or stubborn behavior, introversion, restlessness, and aggression in children with hearing loss.⁴ Four-hundred sixty-six million persons in the world have disabling hearing loss (6.1% of the world's population) with around 432 million (93%) of these being adults and 34 million (7%) of these being children.⁵ In India, hearing impairment is seen in 19% of the total disabled population, in which 20% are between the age group of 0 to 19 years.^6,7 In Maharashtra, it has been found that around 91 children per lakh population have hearing loss in the age group of 0 to 4 years. In the age group of 5 to 9 years, 238 children per lakh population are found to have hearing loss.⁸

It has been proved that the first 3 years of a child's life are crucial for the rapid development of speech and language and this is the period when the human brain is developing and maturing. If the hearing loss is identified at an early age and followed by immediate intervention before 12 months of age, it helps in acquiring better speech-language skills as compared with those who are identified and intervened after the critical period of the child's life.⁹ Universal newborn hearing screening is not yet fully implemented in India at a national level due to many challenges like cost, limited specialist staff, and loss to follow-up.¹⁰ In clinical practice, most of the times, it is observed that parents and other family members of children with hearing loss keep on waiting and hope that the child will speak as he/she grows and then approach the medical professionals for advice. The audiologist is approached at a later stage, generally after medical consultation. Sirur and Rangasayee¹¹ in their study reported that the age at identification of hearing loss dropped down by 9.59 months from 1989 to 2008; however, it had not even reached 12 months by 2008. In a study by Kumar et al,¹² the mean age at suspicion crossed 19 months, age at identification crossed 24 months, and mean age at intervention initiation of hearing loss crossed 29 months. Most often the parents identify and initiate intervention of the child's hearing loss after the critical period of development is over.^11,13 Thus, the aim and objectives of this study were to explore the age at which children were suspected, identified with hearing loss, and fitted with appropriate intervention along with the reasons that lead to the delay in detection, identification, and intervention of hearing loss in Maharashtra state.

Methodology

Results

Among 60 parents, 48 mothers and 12 fathers participated and responded to the interview.

The demographic information of the respondents is listed in ►Table 1.

Information regarding the hearing screening at birth was collected from the participants. It was found that only one child out of 60 had undergone hearing screening at birth. With regard to birth history, 76% of the children had no significant history during, pre-, peri-, or postnatal period, while 6% of the children had associated issues.

The median age at the suspicion of hearing loss is found to be 12 months. Forty percent respondents were mothers (n = 24) who suspected that the child had hearing loss, followed by the father (n = 13) and grandparents (n = 13). Others included neighbors and family physicians. The reason behind suspicion of hearing loss as reported by majority of the respondents was a lack of response to loud sounds such as utensil noise, vehicle honking, television sound, calling out the child's name, and other speech sounds. About 8.33% of the respondents noticed that child was not speaking despite the increase in chronological age. Five percent reported that they came to know about hearing loss when the child underwent a medical evaluation. The median age at which parents consulted a physician for the child's hearing loss was 13 months. Majority of the parents (n = 52) responded that physicians referred them to audiologists, whereas 12% of parents mentioned referrals to otolaryngologists. The most commonly performed test at several setups was the auditory brainstem response (ABR) audiometry. About 43.33% of parents (n = 26) reported that their child underwent only the ABR test in the first place, followed by ABR and audiometry (n = 16). Only 18% of the parents (n = 11) reported that their child underwent a battery of tests and hearing aid trial. Ninety-five percent of the parents (n = 57) were informed regarding the tests to be conducted for hearing evaluation by the audiologists. Recommendations given by audiologists to the parents were also studied. It was found that 60% of the parents (n = 36) reported that audiologists recommended hearing aid fitting. Only 5% of the parents got recommendation directly for cochlear implant surgery. Recommendation for auditory training along with hearing aid fitting was less. Eighty percent of the parents responded that they denied the child's hearing loss after identification, whereas 20% (n = 12) accepted the hearing loss. About 51.66% of the parents (n = 31) received economic and/or emotional support from their family, whereas 48.33% did not receive any support. The results indicated that 50% of the participants (n = 30) sought a second opinion from another audiologist and 23.33% of the participants (n = 14) sought a second opinion from professionals or people other than hearing professionals. About 76.66% of participants (n = 46) did not seek any opinion.

The median age at identification of hearing loss in children was found to be 18 months. The median gap between the age at identification and suspicion of hearing loss was calculated to be 4 months as depicted in ►Table 2. The gaps were calculated by subtracting the age at the suspicion of hearing loss in months from the age at identification of hearing loss in months.

Qualitative analysis was performed to study the parental barriers in the process of suspicion and identification of hearing loss. As seen in ►Table 3, economic aspect was the most common barrier faced by 78.66% of the participants (n = 47). Out of these 17 participants faced other barriers along with economic problems. Barriers related to services offered by different professionals were faced by 18.33% of the participants (n = 11). As reported by the respondents of the study, this barrier led to the possible delay in the process significantly. About 11.66% of the participants (n = 7) faced familial issues. Other than these, only five participants faced travelling or distance-related barriers, the other five faced issues due to the lockdown, and the remaining five had to receive other treatment for the child's additional problems that led to the gap in the process of identification of hearing loss.

As it can be seen from ►Table 4, the median age at which hearing aid fitting was done (intervention initiated) was 24 months. The gap between the age at intervention initiated and the age at identification of hearing loss was calculated by subtracting the age at identification of hearing loss in months from age at intervention initiation of hearing loss in months and it was found to be 3 months.

►Table 5 depicts the barriers faced during the process of intervention of hearing loss in children. Results revealed that 83.33% of the participants (n = 50) faced economic issues and 10% of the participants (n = 6) faced familial barriers. Barriers related to service delivery by professionals and waiting for surgery were faced by only 1.33% of participants. About 13.33% of the participants (n = 8) did not report of any barriers during the intervention process.

Discussion

This study revealed that mothers primarily suspected hearing loss in their children, followed by fathers and grandparents. It was noticed that as mothers spend most of the time with their child during daily activities like feeding, playing, and bathing, it is quite natural for them to realize the child's hearing loss first as compared with the other family members. This finding was in concurrence with the previous literature studies.^13,14 The reasons behind suspicion of hearing loss as reported by the respondents in the study were the child not responding to loud sounds, vehicle sounds, calling out a name, and no speech development. Similar findings were reported in the literature.^12-14

The median age at suspicion of hearing loss in children in this study was found to be 12 months. Majority of the children were suspected of having a possible hearing loss after 3 months of age. These findings concur with the previous studies done in India that indicate the mean age at the suspicion of hearing loss to be around 13 to 15 months.^12,13,15 However, the median age at the suspicion of hearing loss was 8 months in a western study done by Harrison and Roush.¹⁶ Specific attention is not paid toward the child's listening development and this could have been one of the reasons for the delay in suspicion of hearing loss. Another possible reason could be attributed to the differences in the overall structure of the culture in developed versus developing countries. Results also indicated that most parents visited medical professionals after suspecting the child's hearing loss that was similar to a study done by Jafari et al,¹⁷ where they reported 57% of the parents visited physicians first, followed by audiologists and speech therapists. The median age at the first visit to a health care professional after suspicion was observed as 13 months in this study. However, this finding was not in agreement with another study done in India where the age at the first visit to a medical professional was by 2.4 years.¹³

Most of the children had undergone their hearing evaluation at the hospital setup. The test battery approach for diagnosis of hearing loss was not followed at the center where the parents first visited, and it was observed that only ABR testing was performed. One positive finding of this study was that majority of the parents were counselled by the audiologists regarding the tests to be done and their results.

The median age at identification of hearing loss was observed to be 18 months in this study. The median age of identification in this study does seem to have lowered as compared with previous literature findings. Previous studies done in India with regard to the mean age at identification of hearing loss were quite scattered, varying anywhere from 23 to 39 months.^12,15,18,19 However, it was observed that identification of hearing loss was still not as per JCIH guidelines.²⁰

It was observed that 80% of the parents denied that their child had hearing loss and majority of them were stressed, upset, shocked, and unaware of the cause of hearing loss and available treatment. Few of them were emotionally drained. Similar reactions have been reported in other studies, where they have mentioned similar feelings of denial, guilt, and anxiety.^18,21 An explanation for these reactions possibly could be that majority of these parents who had children diagnosed with hearing loss were hearing parents; thus, they might have been unaware of hearing loss and its impact on communication development. Results also indicated that 50% of the parents sought a second opinion for their child's hearing loss after identification of hearing loss that could be attributed to the parent's denial of the diagnosis. Also, most of the parents or family members did seek other treatment options for their child's hearing loss. Similar findings were reported in a previous study by Merugumala et al.¹⁴ This study finding with regard to the gap between age at suspicion and age at identification of hearing loss revealed that the median gap between age at suspicion and age at identification was 4 months. Majority of the research studies done previously also reported similar results where the average gap between age at suspicion and identification of hearing loss was around 5 months.^16,22,23

A possible explanation for this gap was studied by understanding the barriers faced during the process of suspicion and identification of hearing loss. Our study finding revealed that economic, familial, and travel barriers were the primary reasons followed by barriers related to service delivery by professionals where there was misguidance from the professionals. Also, there were many appointments given for additional testing or cancelations in appointments due to child's health-related issues that could have contributed to this gap. A novel finding in this study reported that the gap was observed due to unavailability of clinical services due to the global pandemic. Similar findings have been documented in the literature. Few studies done across countries revealed that most of the parents faced issues related to service delivery by professionals and these included problems with appointment scheduling, repeated testing, multiple appointments, inadequate referrals by professionals, and lack of testing facilities along with travel time needed to visit the center.^{11,14,18,24,25} Studies done in India also revealed familial barriers such as gender bias in the family, underestimation of child's hearing loss by family members who take decisions, and domestic priorities led to cause a gap between the suspicion and identification process.¹⁴

This study revealed that the median age at intervention services initiated in children with hearing loss was 24 months. Previous studies from the literature reported variability in the age at which intervention of hearing loss was initiated. Some studies have reported the median age at intervention initiation as more than 15 months.^16,24,25 Although the age at intervention initiated for children with hearing loss in this study was lower as compared with that of previously conducted Indian studies, still intervention initiation does not seem to follow JCIH²⁰ guidelines.

Results of this study with respect to the gap between the age at identification and age at intervention initiated were reported to be 3 months. This finding is in agreement with previous studies reported in the literature across countries and in India that have documented that the mean gap between age at identification and intervention of hearing loss to be 2.14 months,²² 7.1 months,²³ 5.2 months,¹⁷ and 3 months, respectively.¹⁶

The results of this study described the possible barriers that could have led to the gap between identification and intervention process in children with hearing loss. They were related to economic barriers such as cost of the amplification device and familial barriers such as decision whether amplification device is really necessary. These findings concur with previous studies done in India that have reported possible reasons as affordability of hearing aid purchase, shortage of professionals and rehabilitative services, lack of awareness, parental attitude,¹² inadequate referrals from the professionals, low socioeconomic status, lack of testing facilities, lack of awareness in parents, gender bias,¹¹ long travelling distance, cost of hearing aids, and decision making.¹⁴ Prolonged repeated testing, resource limitations, child's noncooperation, and different results by different professionals were also few other reasons reported.¹⁸ Studies done across other countries also reported barriers related to service delivery by the professionals such as multiple appointments for assessment, waiting for follow-up appointments, misguidance from the professionals, payment-related issues, and difficulties with ear molds as possible reasons for the delay in intervention process.^16,24,25

Conclusion

This study has provided information regarding the current age at suspicion, identification, and intervention initiated in children with hearing loss. The age at identification and intervention of hearing loss has lowered; however, it still fails to meet the JCIH guidelines. The gaps between age at suspicion, identification, and intervention of hearing loss were pertaining to economic, familial, or service delivery barriers faced by the parents. The findings of this study can be helpful to create awareness regarding the need of early intervention in children with hearing loss.