Congenitally Deaf Children's Care Trajectories in the Context of Universal Neonatal Hearing Screening: A Qualitative Study of the Parental Experiences
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 postscreenin...
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| Veröffentlicht in: | Journal of deaf studies and deaf education 2011-07, Vol.16 (3), p.305-324 |
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| container_title | Journal of deaf studies and deaf education |
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| creator | Hardonk, Stefan Desnerck, Greetje Loots, Gerrit Van Hove, Geert Van Kerschaver, Erwin Sigurjónsdóttir, Hanna Björg Vanroelen, Christophe Louckx, Fred |
| description | 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. |
| doi_str_mv | 10.1093/deafed/enq055 |
| format | Article |
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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.</description><identifier>ISSN: 1081-4159</identifier><identifier>EISSN: 1465-7325</identifier><identifier>DOI: 10.1093/deafed/enq055</identifier><identifier>PMID: 21367846</identifier><language>eng</language><publisher>Cary, NC: Oxford University Press</publisher><subject>Assistive Technology ; Attitude to Health ; Auditory Evaluation ; Belgium ; Biological and medical sciences ; Child, Preschool ; Children ; Cochlear Implantation ; Cochlear implants ; Content Analysis ; Correction of Hearing Impairment ; Data Collection ; Deaf education ; Deafness ; Deafness - congenital ; Deafness - diagnosis ; Deafness - rehabilitation ; Disabilities ; Ear, auditive nerve, cochleovestibular tract, facial nerve: diseases, semeiology ; Early Intervention ; Ears & hearing ; Empirical Articles ; Foreign Countries ; Fundamental and applied biological sciences. Psychology ; Handicap ; Health Services ; Hearing aids ; Hearing loss ; Humans ; Identification ; Infant, Newborn ; Medical sciences ; Medical screening ; Mothers ; Neonatal care ; Neonatal Screening ; Neonates ; Non tumoral diseases ; Otorhinolaryngology. Stomatology ; Parents ; Parents - psychology ; Patient Care Team ; Persons With Hearing Impairments ; Psychology and medicine ; Psychology. Psychoanalysis. Psychiatry ; Psychology. Psychophysiology ; Qualitative research ; Referral and Consultation ; Screening Tests ; Self-Help Devices ; Studies ; Trajectories</subject><ispartof>Journal of deaf studies and deaf education, 2011-07, Vol.16 (3), p.305-324</ispartof><rights>Copyright © 2011 Oxford University Press</rights><rights>2015 INIST-CNRS</rights><rights>The Author 2011. Published by Oxford University Press. All rights reserved.</rights><rights>Copyright Oxford Publishing Limited(England) Summer 2011</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c495t-8bf74deef025345d90437c4a65f10b30ba0d36773c3d9c68da1184f44407d8a33</citedby><cites>FETCH-LOGICAL-c495t-8bf74deef025345d90437c4a65f10b30ba0d36773c3d9c68da1184f44407d8a33</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.jstor.org/stable/pdf/42659076$$EPDF$$P50$$Gjstor$$H</linktopdf><linktohtml>$$Uhttps://www.jstor.org/stable/42659076$$EHTML$$P50$$Gjstor$$H</linktohtml><link.rule.ids>314,780,784,803,27924,27925,58017,58250</link.rule.ids><backlink>$$Uhttp://eric.ed.gov/ERICWebPortal/detail?accno=EJ926141$$DView record in ERIC$$Hfree_for_read</backlink><backlink>$$Uhttp://pascal-francis.inist.fr/vibad/index.php?action=getRecordDetail&idt=24230674$$DView record in Pascal Francis$$Hfree_for_read</backlink><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/21367846$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Hardonk, Stefan</creatorcontrib><creatorcontrib>Desnerck, Greetje</creatorcontrib><creatorcontrib>Loots, Gerrit</creatorcontrib><creatorcontrib>Van Hove, Geert</creatorcontrib><creatorcontrib>Van Kerschaver, Erwin</creatorcontrib><creatorcontrib>Sigurjónsdóttir, Hanna Björg</creatorcontrib><creatorcontrib>Vanroelen, Christophe</creatorcontrib><creatorcontrib>Louckx, Fred</creatorcontrib><title>Congenitally Deaf Children's Care Trajectories in the Context of Universal Neonatal Hearing Screening: A Qualitative Study of the Parental Experiences</title><title>Journal of deaf studies and deaf education</title><addtitle>J Deaf Stud Deaf Educ</addtitle><description>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.</description><subject>Assistive Technology</subject><subject>Attitude to Health</subject><subject>Auditory Evaluation</subject><subject>Belgium</subject><subject>Biological and medical sciences</subject><subject>Child, Preschool</subject><subject>Children</subject><subject>Cochlear Implantation</subject><subject>Cochlear implants</subject><subject>Content Analysis</subject><subject>Correction of Hearing Impairment</subject><subject>Data Collection</subject><subject>Deaf education</subject><subject>Deafness</subject><subject>Deafness - congenital</subject><subject>Deafness - diagnosis</subject><subject>Deafness - rehabilitation</subject><subject>Disabilities</subject><subject>Ear, auditive nerve, cochleovestibular tract, facial nerve: diseases, semeiology</subject><subject>Early Intervention</subject><subject>Ears & hearing</subject><subject>Empirical Articles</subject><subject>Foreign Countries</subject><subject>Fundamental and applied biological sciences. Psychology</subject><subject>Handicap</subject><subject>Health Services</subject><subject>Hearing aids</subject><subject>Hearing loss</subject><subject>Humans</subject><subject>Identification</subject><subject>Infant, Newborn</subject><subject>Medical sciences</subject><subject>Medical screening</subject><subject>Mothers</subject><subject>Neonatal care</subject><subject>Neonatal Screening</subject><subject>Neonates</subject><subject>Non tumoral diseases</subject><subject>Otorhinolaryngology. Stomatology</subject><subject>Parents</subject><subject>Parents - psychology</subject><subject>Patient Care Team</subject><subject>Persons With Hearing Impairments</subject><subject>Psychology and medicine</subject><subject>Psychology. Psychoanalysis. Psychiatry</subject><subject>Psychology. 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Psychology</topic><topic>Handicap</topic><topic>Health Services</topic><topic>Hearing aids</topic><topic>Hearing loss</topic><topic>Humans</topic><topic>Identification</topic><topic>Infant, Newborn</topic><topic>Medical sciences</topic><topic>Medical screening</topic><topic>Mothers</topic><topic>Neonatal care</topic><topic>Neonatal Screening</topic><topic>Neonates</topic><topic>Non tumoral diseases</topic><topic>Otorhinolaryngology. Stomatology</topic><topic>Parents</topic><topic>Parents - psychology</topic><topic>Patient Care Team</topic><topic>Persons With Hearing Impairments</topic><topic>Psychology and medicine</topic><topic>Psychology. Psychoanalysis. Psychiatry</topic><topic>Psychology. 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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.</abstract><cop>Cary, NC</cop><pub>Oxford University Press</pub><pmid>21367846</pmid><doi>10.1093/deafed/enq055</doi><tpages>20</tpages><oa>free_for_read</oa></addata></record> |
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| ispartof | Journal of deaf studies and deaf education, 2011-07, Vol.16 (3), p.305-324 |
| issn | 1081-4159 1465-7325 |
| language | eng |
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| source | MEDLINE; JSTOR Archive Collection A-Z Listing; Oxford University Press Journals All Titles (1996-Current); Education Source; EZB-FREE-00999 freely available EZB journals; Alma/SFX Local Collection |
| subjects | Assistive Technology Attitude to Health Auditory Evaluation Belgium Biological and medical sciences Child, Preschool Children Cochlear Implantation Cochlear implants Content Analysis Correction of Hearing Impairment Data Collection Deaf education Deafness Deafness - congenital Deafness - diagnosis Deafness - rehabilitation Disabilities Ear, auditive nerve, cochleovestibular tract, facial nerve: diseases, semeiology Early Intervention Ears & hearing Empirical Articles Foreign Countries Fundamental and applied biological sciences. Psychology Handicap Health Services Hearing aids Hearing loss Humans Identification Infant, Newborn Medical sciences Medical screening Mothers Neonatal care Neonatal Screening Neonates Non tumoral diseases Otorhinolaryngology. Stomatology Parents Parents - psychology Patient Care Team Persons With Hearing Impairments Psychology and medicine Psychology. Psychoanalysis. Psychiatry Psychology. Psychophysiology Qualitative research Referral and Consultation Screening Tests Self-Help Devices Studies Trajectories |
| title | 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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