Early Experiences of Parents of Children who are Deaf or Hard of Hearing: Navigating through Identification, Intervention, and Beyond.

Abstract

Guidelines created by the American Academy of Pediatrics ([AAP], 2010) and the Joint Committee on Infant Hearing ([JCIH], 2019) were designed to aid in the early identification of infant hearing loss. Despite these guidelines, a quarter of children who do not pass their initial screening are lost to the follow-up process and many more do not receive care in line with the 1-3-6 guidelines (Centers for Disease Control and Prevention [CDC], 2018; JCIH, 2019). To acquire more information about the experiences of families and identify specific barriers to timely diagnosis and intervention, interviews were conducted with 13 parents of children who are deaf or hard of hearing whose children were enrolled in a larger longitudinal study. These interviews revealed common themes regarding delayed identification, frustrations about timely intervention, and confusion when choosing communication modalities. Common themes amongst families who felt well-supported were also identified.