PP1304 - A Qualitative Analysis in Mongolia: Early Identification and Early Intervention Services for Families

Abstract: Though there have been significant advancements in technology, audiological care, and habilitation to help young children with hearing loss around the world to listen and speak, the success of these approaches relies on families being aware of the impact of hearing loss on their child's development and being able to access pertinent services. Few studies exist about these topics in Mongolia.  We implemented qualitative research to understand the family experience in Mongolia and the enablers and barriers they face as they progress along the continuum of care from identification to habilitation in support of their young children with hearing loss.

Summary
Hearing loss can permanently impair audition, speech, language, and cognitive development if left untreated in babies and young children (Joint Committee on Infant Hearing, 2000). A Continuum of Care comprised of four essential elements is required for young children with hearing loss to listen and speak: a) early identification, b) family awareness and engagement, c) timely fitting of hearing technology, and d) access to locally-based habilitation expertise and services. The majority of the 32 million children with hearing loss worldwide reside in low resource countries, such as Mongolia, where these elements are fragmented, or not available at all, thus limiting their potential (WHO, 2016).

Study Rationale: The recent implementation of newborn hearing screening in Mongolia will likely contribute to earlier identification of hearing loss and heighten the potential for timely treatment. However, these developments are only useful if families are aware of the impact of hearing loss on their child’s development and are able to access pertinent expertise and services in timely fashion. The intent of this qualitative study is to understand the experience in Mongolia for families with children with hearing loss in both rural and urban settings. This study aims to achieve two inter-related objectives: to elicit strengths and weaknesses in the current delivery model of early identification, audiology, and habilitation services, and also to identify cultural, economic, and social enablers and barriers that motivate or demotivate families along the continuum of care.

Methods:  Author and 3 Mongolian study assistants conducted semi-structured, in-depth interviews with 26 Mongolian family members of children with hearing loss who either use hearing aids or cochlear implants or are in the process of obtaining such hearing technology. Focus group discussions and interviews were administered with 41 Mongolian medical professionals and therapists who provide pediatric hearing care services and with four government representatives. IDIs/FGDs audio-recorded and transcribed verbatim. Stratified purposive sampling ensured broad range of perspectives. Thematic content analysis was applied using inductive coding and a grounded theory approach.  Multi-level, iterative process maintained quality of data interpretation. Analysis revealed strengths and opportunity areas at each stage of care which contributed to varying family experiences in obtaining pediatric hearing health care services for their children.

Results:  Primary themes that affect the Mongolia family experience in helping their children with hearing loss: 1)accessibility of services, 2) financial wherewithal, and 3) acceptance of pediatric hearing loss in their support networks. This study yielded results that could encourage policy to expand services for babies and young children with hearing loss in Mongolia while also contributing to existing literature and raising broader awareness about the challenges in addressing pediatric hearing loss in low resource countries.