NEW RESOURCE DEVELOPMENT: PARENTS’ VOICES IN LMIC
Raising awareness of CI for children and infants in Low and Middle Income Countries
A new project: Thank you to all those who have helped by sending in their stories!
It all begins with Awareness – without Awareness there is no Information, no Demand and no Access! Carolina Der, WHO
Huge thanks for all the wonderful stories from across the globe, from people who have taken the time to share their journey so that we can all learn from each other. Our LMIC project team grew from CIICA Conversations and please visit www.ciicanet.org/events to read the meeting summaries which led to this research project. Now, 75 stories from 19 countries are now available for you to read – and the final report later this year. The stories highlight challenges and successes in accessing and using CIs and corresponding services for their children in LMIC as part of Ear and Hearing Care.
Read our project overview, written by Hillary Ganek, (Brock University, Canada).
See the map and quotes below:
“Do not compare your child to another; each one is unique and perfect as they came into our lives.” (Colombia)
“The never-ending task of educating—family, neighbors, teachers, professionals, and even strangers” (Panama)
“Love does not ask whether you can hear—it simply acts.” (Armenia)
“Being able to communicate with my son, where I could not before, that is indescribable!” (S Africa)
“To anyone facing similar challenges is simple but powerful: "DO NOT GIVE UP!"” S Africa
“It is an honor to share his journey — one that has reshaped our understanding of resilience, hope, and the remarkable abilities of children.” (Georgia)
“My focus is on helping the world understand the lives of people with hearing loss. It may sound ambitious, but from my perspective, if we help everyone understand hearing loss, we can build a more inclusive society and, consequently, ensure proper access to hearing support.” (Colombia)
“Becoming parents to a child who survived cancer changes you profoundly” (Panama)
“Always motivate and encourage them to go ahead and pursue their dreams.” (India)
“The best advice I can give to other parents is to be persistent and very patient.” (Guatemala)
“We make hearing part of his everyday life—during play, conversation, and in kindergarten.” (Georgia)
“Never give up. The earlier you seek help, explore options, and knock on doors, the better.” (Paraguay)
“She loves to listen, loves to communicate, can understand and be understood by different people, without us having to interpret.” (Angola)
“Remember that a child's hearing loss does not define their worth” (India)
“She has taught us that hearing is not just about listening, but about connecting, loving, and being resilient.” (Colombia)
“Receiving the diagnosis meant facing, as a mother, a world full of technical words that I did not understand and that created fear and uncertainty.” (Paraguay)
“When we first learned that our child was having hearing loss in both the ears our world paused.” (India)
“Today, she is an adult pursuing a degree in Medicine. The child who once lived in silence is now training to heal others.” (India)
“My advice to other parents is this: Never ignore your inner voice.” (Armenia)
“I believe that each child arrives and is exactly where they're meant to be. They chose us as their parents” (Colombia)
“Our greatest achievement is seeing our daughter live confidently and independently.” India
“All our family is deaf: she is now the bridge between our silent home and the hearing world.” (India)
“With immense pride and joy, we can say that she has become the first hearing-impaired graduate in Speech Therapy in Paraguay”
“Those dreams soon collided with a harsh reality when we discovered our son was born with profound hearing loss.” (Vietnam)
“We faced significant financial pressures” (India)
“Be patient after surgery and do not expect quick changes” (Nepal)
“Be diligent- never stop believing - miracles will happen” (Vietnam)
“She is 29 a confident, independent woman and a committed civil acitivist” (Georgia)
“In this country Social security doesn't cover any of that; it's all paid for by the parents.” (Dominican Republic)
“Make listening and speaking a part of everyday routines.” (India)
Read all the stories received, from 19 countries!
The essays presented in this collection have been lightly edited for clarity in English and the anonymity of the storytellers and their support systems. Throughout the stories, families use technical terms to describe hearing loss, hearing technology, and the professionals who support them. These words vary between countries, cultures, and narrators. We have not standardised the language used across stories as it reveals how each parent positions themselves as caregivers and in relation to their clinicians and educators. A glossary is included to clarify some technical vocabulary.
Note: Signed consent was obtained from the families, prior to publishing these stories on our website.
Acknowledgements: CIICA would like to thank all of the families who were willing to share their stories on this platform. We would like to acknowledge the work of the LMIC Project Team, Vahishtai Daboo, Carolina Der, Katalin Gal, Steve Kittur, Eddie Mukaaya, Tanya Saunders, Lusine Stepanyan, Paige Stringer, Ekaterine Tortladze, Giovanna Troncoso, Marcela Varela Vargas, and Liubov Wolowik, for assistance in developing this project, inviting caregivers to share their stories, and reviewing the final product. Also thanks to Neelam Vaid and Jenny Perold.
CIICA also thanks Hillary Ganek and her students, Myia Bennett, Mya Booker, Haleigh Grant, Ashleen Hale, Eryn Hussey, Jesna Magno, Ashley McNaughton, and Merit Omedo for editing and organizing the stories.
Project supporters:
See videos from two young adults, advocating for services in LMIC:
Elaine Mukkaya, Uganda
Melis Durmaz Yıldırım, Turkey
PLEASE NOTE: CIICA reserves the right to review and edit all stories and select those that appear on the website and other CIICA communication tools.