Editor’s note: This is the third in a series of articles about the work of the Global Foundation For Children With Hearing Loss and lessons learned from its international programs. The first and second articles in the series appeared in the April 2022 and May 2022 issues, respectively.
Isn’t it amazing how technological advancements of all kinds have accelerated human progress? Our ability to connect, communicate, and learn from each other from anywhere on the planet has been enhanced at a faster rate in the past few decades than at any other time in history.
I remember when the Global Foundation For Children With Hearing Loss (GFCHL) started its work nearly 15 years ago that video conferencing was just beginning to be utilized. One of our GFCHL professionals arranged a Webex session between a few parents of children with hearing loss in Vietnam and those in the United States for them to meet and share experiences with the support of a local interpreter. We gathered around a table under a humming ceiling fan in the director’s office where the only Wi-Fi access (and unstable at that) was available at a school in rural Vietnam. The Vietnamese parents were filled with wonder at the video conferencing technology and shy at first. However, they soon broke into smiles and began nodding in understanding as they heard their American counterparts share familiar challenges and concerns with their own children with hearing loss. By the end of the meeting, all parents on both sides of the world were freely exchanging ideas and lending support to each other. The experience was yet another reminder that humanity shares many more similarities than differences. It was also quite a moment in demonstrating how technology can enhance people’s lives.
Similarly, in ear and hearing care, advancements in the way of screening devices, digital hearing aids, cochlear implants, and audiological equipment have greatly increased the potential for more young children with hearing loss to listen and talk. However, unlike the Webex example, these technological advancements (and related services) are not equitably available to many children around the world, especially those living in low-resource countries. Human potential is not being fully realized, and it is time to close the gap.
WHAT IT TAKES
A Continuum of Care is required for babies and young children with hearing loss to successfully learn to listen and speak. It starts with proactive and early identification of hearing loss through pediatric hearing screening programs. The next step is for families of these infants and young children identified with hearing loss to be informed about the diagnosis, the communication options available for their child, and provided with guidance on the way forward. Then, the child needs to be fit with appropriate hearing technology, such as hearing aids or cochlear implants. Finally, they need access to locally based audiology and habilitation professionals to make use of the hearing technology to develop listening and speaking skills. All these steps are equally important and required in the first years of a child’s life for successful outcomes.
The evolution of the internet and its related applications have improved global accessibility to information about hearing loss and the tools to address it in children. Increased awareness is the first step toward inspiring local improvements in care. The next step is to get the technologies in place. Unfortunately, awareness of these technologies does not often include an explanation about the Continuum of Care and how the technologies must be integrated into this care continuum for their benefits to be fully realized. Technology is an enabler, not a stand-alone solution.
For example, hearing screening is only effective if there are services already established to address the needs of children identified with hearing loss and referral protocols are in place to guide families to those services. We have seen health care systems invest heavily in the surgical aspects of cochlear implants without adequately addressing the essential rehabilitation needs that follow. There are not enough locally based trained professionals to provide pediatric audiology, therapy, or educational support. Governments and health insurance plans in many countries do not cover the cost of technology or associated rehabilitation services and families take on huge lifelong financial burdens to enable their children to hear.
A HOLISTIC APPROACH IN NEPAL
With these universal challenges in mind, the GFCHL approaches its programs in low-resource countries with a holistic view and an eye on the Continuum of Care. For instance, we recently began a new initiative in Nepal to address the lack of early identification and early intervention services for children with hearing loss outside the capital of Kathmandu. Only about 60% of babies in Nepal are born in medical facilities, and families rely greatly on health camps and community-based support for maternal and child health care. Thus, we are working with partners in one Nepal province to develop a hearing screening program for newborns and young children under 6 years of age by leveraging the existing network of community health workers who already serve these families’ health needs in other ways.
Before we start the hearing screening program, however, we first need to establish the elements in the Continuum of Care required after identification of hearing loss. Awareness for pediatric hearing loss and the importance of timely intervention is low. Hearing care and early education services for children with hearing loss from birth to 6 years of age are nonexistent. There are no procedures to ensure a path of referral and follow up support for the young children anticipated to be identified with hearing loss via the screening effort and their families.
The GFCHL is currently collaborating with our local partners and provincial government officials to address such gaps in care. A series of GFCHL training programs are scheduled to increase awareness among community resource facilitators, nurses, other front-line health providers, teachers, community leaders, and families about pediatric hearing loss and how it can be addressed. We are helping to identify and address human resource needs, source audiology equipment, hearing aids, accessories, and other essentials. The GFCHL is also planning multiple professional development workshops for local hospital-based audiologists, technicians, and speech therapists. The aim is to expand their expertise and technical skills in pediatric audiology and auditory-verbal therapy so they are prepared to serve children with hearing loss from birth to 6 years of age and then to share their knowledge with other Nepal professionals to benefit even more children in the future. It is important to implement these foundational elements first before we start screening babies and young children so the children have equitable access to the hearing technology, services, and support to listen, talk, and thrive.
A BRIGHT FUTURE
The GFCHL aims to help young children with hearing loss from birth to 6 years of age living in low-resource countries learn to listen and speak. By increasing awareness about pediatric hearing loss, collaborating with local partners, customizing our programs to meet unique local needs, and investing in the people we support over the long term, we can help more young children with hearing loss fully benefit from modern advancements in technology in ear and hearing care to achieve their full potential.