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Updated: Nov 15, 2025
Neuro-rehabilitation Approach for Sudden Sensorineural Hearing Loss
Published on: January 25, 2016
Challenges faced by parents when seeking diagnosis for children with sensorineural hearing loss
Nur Fatihah Ainun Hamzah1, Cila Umat1, Deepashini Harithasan1
1Center for Rehabilitation & Special Needs Studies, Faculty of Health Sciences, Universiti Kebangsaan Malaysia, Kuala Lumpur, Malaysia.
Insights
Parental emotions, knowledge gaps, and professional service issues present significant challenges in diagnosing childhood hearing loss in Malaysia. Addressing parental emotional well-being is crucial for timely intervention and acceptance of diagnosis.
Area of Science:
- Pediatric Audiology
- Child Health Outcomes
- Parental Support Systems
Background:
- The Joint Committee of Infant Hearing (JCIH) recommends critical timelines for infant hearing screening, diagnosis, and intervention.
- Delayed diagnosis of hearing loss in Malaysian children contrasts with established international guidelines.
- This study investigates parental challenges in the diagnostic journey for childhood hearing loss in Malaysia.
Purpose of the Study:
- To identify and analyze the specific challenges parents encounter when seeking a diagnosis for their children's hearing loss.
- To understand the factors contributing to delayed diagnosis and intervention in Malaysian infants and children.
- To inform healthcare providers and policymakers on improving the diagnostic process for pediatric hearing loss.
Main Methods:
- A qualitative approach using semi-structured interviews with 16 parents of children diagnosed with moderate to profound sensorineural hearing loss.
- Exploration of parents' experiences and challenges during the hearing loss diagnosis period.
- Inclusion of participants whose children utilized hearing aids or cochlear implants.
Main Results:
- Thematic analysis revealed four primary themes: parental emotions, parental knowledge, external support systems, and professional services.
- Key challenges included parental guilt, devastation, lack of information from healthcare providers, and insufficient parental knowledge about childhood hearing loss.
- Parents also faced issues with diagnostic timelines, referral processes, and appointment prioritization.
Conclusions:
- Parental emotional responses, particularly guilt and devastation, represent the most significant barrier in the hearing loss diagnosis process.
- Healthcare professionals must prioritize managing parental emotions to facilitate acceptance and improve outcomes for children with hearing loss.
- Enhanced parental support and improved professional services are essential for timely diagnosis and intervention.
Introduction:
The Joint Committee of Infant Hearing (JCIH) recommended hearing screening by one month of age, diagnosis of hearing loss by three months of age, and intervention initiated by six months of age. In Malaysia however, the age of diagnosis of hearing loss in children is relatively late. This study aimed to identify the challenges faced by parents in seeking a diagnosis of hearing loss for their children.
Method:
The study utilized a semi-structured interview with open-ended questions to obtain information about parents' experiences during the diagnosis period and their challenges when going through that process. In this study, a total of 16 parents of children who were diagnosed with moderate to profound sensorineural hearing loss and received intervention within three years at the time of the study participated. Ten of the children were cochlear implant users, and six were hearing aid users.
Results:
Thematic analysis was used to analyse themes generated from the data according to the study objective. Four main themes and 17 subthemes were identified from this study. The four main themes were 1) Parents' emotion; 2) Parental knowledge; 3) Others; 4) Profesional services. Challenges that parents faced often include emotional behaviours such as feeling guilty and devastated during the diagnosis, lack of information-sharing from healthcare givers, lack of knowledge on childhood hearing loss among parents, support from families, seek for a second opinion, worry about others' acceptance, longer time for diagnosis to confirm, late referral to other related profesionals and no priority for the appointment.
Conclusion:
Emotion is identified as the biggest challenge faced by parents in the process of diagnosis for their children with hearing loss. Hence, management of parental emotion needs to be emphasized by health profesionals as it influences the acceptance of parents towards their child's diagnosis.
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