Parents’ Needs Following Identification of Childhood Hearing Loss

TLDR

Appropriate support for families of children diagnosed with hearing impairment may directly improve early hearing detection and intervention outcomes by reducing the negative effects of permanent hearing loss. The study aimed to explore parents’ needs after learning of their child’s hearing loss to better understand key components of service delivery from families’ perspectives. Semistructured interviews were conducted with 17 families (21 parents) of preschool children in four Ontario centers, including those identified by neonatal screening and traditional referral routes, to gather parents’ perceptions of strengths and gaps in the care system. Most parents were satisfied with audiology and therapy services, but identified gaps in service coordination, information availability, and integration of social services and parent support, and access to audiology was better for systematically screened children, highlighting the importance of parents’ perspectives in designing optimal care models.

Abstract

Purpose Appropriate support for families of children diagnosed with hearing impairment may have a direct impact on the success of early hearing detection and intervention programs in reducing the negative effects of permanent hearing loss. We conducted a qualitative study to explore parents’ needs after learning of their child’s hearing loss to better understand the important components of service delivery from families’ perspectives. Method Semistructured interviews were conducted with 17 families (21 parents) of preschool children in 4 centers in Ontario, Canada. Parents of children identified by neonatal screening as well as those identified through traditional referral routes participated. We asked parents to share their perceptions of the strengths and gaps in the care system. Results Although the majority of parents were satisfied with the range and quality of audiology and therapy services available, they identified gaps in the areas of service coordination, availability of information, and the integration of social service and parent support into the system. Access to audiology services appears to have been facilitated for children who were systematically screened. Conclusions The findings provide insights into the services most valued by families. These findings highlight the importance of eliciting parents’ perspectives in designing optimal care models for children and families.