Understanding the Impact of Child, Intervention, and Family Factors on Developmental Trajectories of Children with Hearing Loss at Preschool Age: Design of the AChild Study

Magdalena Dall,Sandra Breitwieser,Daiva Müllegger,Ruth Kapplmüller,Johannes Hofer,Sandra Kiblböck,Johannes Fellinger,Ruth Zöhrer,Daniel Holzinger,Christoph Weber,Katharina Schossleitner

doi:10.3390/jcm11061508

Abstract

Children with hearing loss and their families represent a large variety with regard to their auditory, medical, psychological, and family resource characteristics. Despite recent advances, developmental outcomes are still below average, with a significant proportion of variety remaining unexplained. Furthermore, there is a lack of studies including the whole diversity of children with hearing loss. The AChild study (Austrian Children with Hearing Impairment—Longitudinal Databank) uses an epidemiological longitudinal design including all children living in Upper and Lower Austria with a permanent uni- or bilateral hearing loss below the age of 6 years, irrespective of additional disabilities, family language, and family resources. The demographic characteristics of the first 126 children enrolled in the study showed that about half of the children are either children with additional disabilities (31%) and/or children not growing up with the majority language (31.7%) that are usually excluded from comprehensive longitudinal studies. AChild aims for a characterization of the total population of young children with hearing loss including developmental outcomes. Another goal is the identification of early predictors of developmental trajectories and family outcomes. In addition to child-related predictors the examination of family–child transactions malleable by family-centred early intervention is of particular interest. The study is designed as participatory including parent representation atall stages. Measures have been chosen, following other large population-based studies in order to gain comparability and to ensure international data pooling.

Highlights

The World Health Organization (WHO) defines ‘disabling’ hearing loss in children as permanent hearing loss (HL) greater than 30 dB in the better ear
The epidemiological study design ensures that all children are included and that insights are gained on children with additional disabilities, multilingual children, children with unilateral HL, unlike previous studies that often had a bias towards including higher SES families or that outright excluded children with additional disabilities or multilingual children
It is challenging to combine age-appropriate testing with testing that is appropriate to the individual child’s level of development. Not including these children would mean that any new insights gained into the development of deaf or hard-of-hearing (DHH) children and their family environments would be informed by only a small subset of them

Summary

Introduction

The World Health Organization (WHO) defines ‘disabling’ hearing loss in children as permanent hearing loss (HL) greater than 30 dB in the better ear. Around 32 million children are affected by disabling HL [1], with greatly varying prevalence rates. In high-income countries, the rate of permanent bilateral severe to profound HL in newborns is 1.1 per 1000 [2]. Mild to moderate bilateral and unilateral HL affects 1–2 per 1000 newborns. There is great diversity in children who are deaf or hard-of-hearing (DHH), for instance, in the severity of HL, the affected region of the auditory pathway (e.g., sensorineural, conductive, and central) and the laterality of HL (unilateral/bilateral). 20–40% of DHH children have an additional disability [5]. Studies report a prevalence of intellectual disabilities in addition to HL in 13–26% of children, visual impairment in 4.4% and Autism Spectrum Disorder in around 3% [6–8]. DHH children differ in the type of amplification used (hearing aids, cochlear implants, mixed, and no amplification)

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