Challenges faced by parents when seeking diagnosis for children with sensorineural hearing loss

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.