Congenitally deaf children's care trajectories in the context of universal neonatal hearing screening: a qualitative study of the parental experiences

Abstract

The objective of this study is to examine the early care trajectories of congenitally deaf children from a parental perspective, starting with universal neonatal hearing screenings. The analysis using a three-dimensional care trajectory concept is aimed at developing a basic typology of postscreening care trajectories. Children with severe/profound hearing loss, registered in the Flanders' (Belgium) universal neonatal hearing screening program, born between 1999 and 2001. Thematic content analysis of qualitative data collected retrospectively from participant's parents. Two basic types of care trajectories emerged; based on differences in care-use in the phase of further diagnosis and related parental experiences. Subtypes resulted from events related to cochlear implantation. Five trajectory phases were identified: screening, further diagnosis, care and technology, cochlear implantation, and reduction of care and were characterized by specific parental experiences such as confusion, disbelief, disappointment, and uncertainty. Those experiences relate to care professionals' acts and communication and the child's functional evolution. Early care interventions could benefit from coordinated transition between phases, parent support throughout the care trajectory, and a broad approach to deafness in professionals' communication.