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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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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.
Keywords
EXPECTATIONS, SERVICES, NEWBORN, LANGUAGE, FLANDERS, OUTCOMES, SURGERY, FAMILIES, DISTRESS, PEDIATRIC COCHLEAR IMPLANTATION

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Chicago
Hardonck, Stefan, Greetje Desnerck, Gerrit Loots, Geert Van Hove, Erwin Vankerschaver, Hanna Bjorg Sigurjonsdottir, Christophe Vanroelen, and Fred Louckx. 2011. “Congenitally Deaf Children’s Care Trajectories in the Context of Universal Neonatal Hearing Screening: a Qualitative Study of the Parental Experiences.” Journal of Deaf Studies and Deaf Education 16 (3): 305–324.
APA
Hardonck, S., Desnerck, G., Loots, G., Van Hove, G., Vankerschaver, E., Sigurjonsdottir, H. B., Vanroelen, C., et al. (2011). Congenitally deaf children’s care trajectories in the context of universal neonatal hearing screening: a qualitative study of the parental experiences. JOURNAL OF DEAF STUDIES AND DEAF EDUCATION, 16(3), 305–324.
Vancouver
1.
Hardonck S, Desnerck G, Loots G, Van Hove G, Vankerschaver E, Sigurjonsdottir HB, et al. Congenitally deaf children’s care trajectories in the context of universal neonatal hearing screening: a qualitative study of the parental experiences. JOURNAL OF DEAF STUDIES AND DEAF EDUCATION. 2011;16(3):305–24.
MLA
Hardonck, Stefan, Greetje Desnerck, Gerrit Loots, et al. “Congenitally Deaf Children’s Care Trajectories in the Context of Universal Neonatal Hearing Screening: a Qualitative Study of the Parental Experiences.” JOURNAL OF DEAF STUDIES AND DEAF EDUCATION 16.3 (2011): 305–324. Print.
@article{2130820,
  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.},
  author       = {Hardonck, Stefan and Desnerck, Greetje and Loots, Gerrit and Van Hove, Geert and Vankerschaver, Erwin and Sigurjonsdottir, Hanna Bjorg and Vanroelen, Christophe and  Louckx, Fred},
  issn         = {1081-4159},
  journal      = {JOURNAL OF DEAF STUDIES AND DEAF EDUCATION},
  keyword      = {EXPECTATIONS,SERVICES,NEWBORN,LANGUAGE,FLANDERS,OUTCOMES,SURGERY,FAMILIES,DISTRESS,PEDIATRIC COCHLEAR IMPLANTATION},
  language     = {eng},
  number       = {3},
  pages        = {305--324},
  title        = {Congenitally deaf children's care trajectories in the context of universal neonatal hearing screening: a qualitative study of the parental experiences},
  url          = {http://dx.doi.org/10.1093/deafed/enq055},
  volume       = {16},
  year         = {2011},
}

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