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.

Analysing care-related decisions in parents of congenitally deaf children: introduction of an explanatory model

“…Parents' perceptions of quality and available opportunities in different types of educational placement and curricula provide the background for preferences concerning the child's communication mode, from which care-related decisions follow. In our empirical studies (Hardonk et al 2011b(Hardonk et al , 2011c) many parents associated special education with low levels of academic achievement and limited opportunities for higher education. Most parents believed that mainstream education offered higher educational levels and a wider range of opportunities.…”

“…Some parents in our studies (Hardonk et al 2010(Hardonk et al , 2011b felt that Á given these circumstances Á it was ethically wrong to make decisions that involve medical operations on the child's body Á such as CI.…”

“…doctors, nurses, audiologists, speech therapists, and social workers (Dunst and Trivette 1990;also McKellin 1995). Our studies indicate that starting from screening and throughout attendance of rehabilitation centres and ear-nose-throat (ENT) hospital departments, most hearing parents placed deafness within a medical framework, because they became confronted with professionals trained to operate in issues of deafness from a predominantly medical perspective (Hardonk et al 2011c). This was also found by Matthijs et al (2012) in their discourse analysis of professionals' support after screening.…”

“…However, they did not choose special education based on sign language Á which offers that opportunity Á because they had the impression that mainstream education offered better educational opportunities. The parents explained this by the higher value they placed on academic achievement and employment opportunities (Hardonk et al 2011b(Hardonk et al , 2011c.…”

“…In the following paragraphs we describe the main characteristics of these studies, which were approved by the Brussels University Hospital Ethical Committee (references 2006/139-2010/002). Full methodological accounts and results have been published elsewhere (Hardonk et al 2010a, Hardonk et al 2010b, Hardonk et al 2011b.…”