Journal Article

Congenitally Deaf Children's Care Trajectories in the Context of Universal Neonatal Hearing Screening: A Qualitative Study of the Parental Experiences

Stefan Hardonk, Greetje Desnerck, Gerrit Loots, Geert Van Hove, Erwin Van Kerschaver, Hanna Björg Sigurjónsdóttir, Christophe Vanroelen and Fred Louckx

in The Journal of Deaf Studies and Deaf Education

Volume 16, issue 3, pages 305-324
Published in print January 2011 | ISSN: 1081-4159
Published online March 2011 | e-ISSN: 1465-7325 | DOI: http://dx.doi.org/10.1093/deafed/enq055
Congenitally Deaf Children's Care Trajectories in the Context of Universal Neonatal Hearing Screening: A Qualitative Study of the Parental Experiences

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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.

Journal Article.  11405 words.  Illustrated.

Subjects: Education ; Linguistics ; Teaching of Specific Groups and Special Educational Needs

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