From Screening to Care: A Qualitative Analysis of the Parental Experiences Related to Screening and (Re)habilitation Care for Children with Congenital Deafness in Flanders, Belgium.

Abstract

The objective of this study is to analyze parental perspectives concerning the use of (re)habilitation services after Universal Newborn Hearing Screening (UNHS). A qualitative study design was used involving children with moderate-to-profound hearing loss who were born between 1999 and 2001 and who are registered in the UNHS program in Flanders, Belgium. Parents of these children were interviewed using a topic list and a chronological scheme to register meaningful events while using (re)habilitative services. Subsequently, thematic content analysis was applied to the transcripts of the interviews. Analysis found that differences exist in parental experiences and some parents who were referred directly from UNHS to an ear, nose, and throat department were left with feelings of uncertainty and anxiety, creating an obstacle in the care trajectory for their child. The parental perception of diagnosis/care was also a cause for delay. Parents considered educational support at home, after UNHS, important. Results indicate that implementation of a UNHS program is in itself insufficient to ensure early intervention, and that adequate support is needed during the early care trajectory to avoid delay and parental distress.