A study of caregiver experiences in raising a deaf child

Abstract

The caregiver family plays an integral role in promoting the overall functioning of the family unit. The six caregiver families in this study were nuclear families in Manitoba who are of hearing status and are raising a child who has special needs in communication. Caregivers shared their parenting experiences as they learned about deafness, took on new roles to meet the needs of their children, and carried out work to bridge the gaps between the deaf child and social systems, such as the school, recreational, and medical systems. The findings from this qualitative study share how caregiver families moved from knowing nothing about deafness to acquiring knowledge and specialized skills on deafness, and deaf-blindness, from their child’s birth to school entry. Several families described their struggles in obtaining resources for their deaf children. Two families relocated to a city so their child could attend a school for the deaf, who teaches academic material using the American Sign Language (ASL). Relocation experiences were described as a grieving process and required multiple adjustments in their life. The families undertook extensive work to establish a shared language in their home so the child could access family life. Once language was established in the home, caregivers further created social linkages between their child and social institutions outside the home. Families also provided recommendations on how hearing people could support the child and his or her family, and offered advice to caregivers and anyone else new to deafness with their perspectives on how others may address typical barriers that they may encounter along the way. This study refers to the Ecological perspective and Empowerment theory and is discussed in the literature review describing the caregiver roles, work and approach to facilitate the integrative linkages between their home, extended family, friends, school, medical professionals, and hearing public.