Auditory neuropathy spectrum disorder in the wider health context: Experiences of parents whose infants have been identified through newborn hearing screening programme

Uus, Kai; Young, Alys; Day, Marianne

doi:10.3109/14992027.2011.625986

Cited by 10 publications

(9 citation statements)

References 18 publications

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“…Considering the heterogeneous nature of the disorder and range of functional outcomes, no definitive predictions regarding 'expected' auditory behaviours can be made until additional diagnostic information has been obtained and as a result there is an inherent amount of uncertainty that accompany ANSD and may not be typical to SNHL [16,17,12]. As a result professionals should be sensitive to inform families that additional test procedures and examinations may be required for definitive diagnosis and etiological evidence (such as an MRI to rule out cochlear nerve deficiency) [16,15].…”

Section: Discussionmentioning

confidence: 99%

“…Additional questions were referred from qualitative report on parents whose infants have been identified with ANSD [12].…”

Section: Methodsmentioning

confidence: 99%

“…In a qualitative narrative study by Uus, Young & Day (2012), experiences of ANSD parents were described. The diagnosis of ANSD in this study was made following newborn hearing screening.…”

Section: Introductionmentioning

confidence: 99%

“…It was found that these parents did not prioritize hearing very highly at the time of diagnosis because of other medical problems. ANSD was not seen as a standalone diagnosis but as part of a bigger picture as all of the ANSD babies were graduates from the NICU [12]. The fact that multiple risks and developmental delays are associated with ANSD mean there are additional factors that influence the parental experiences [13].…”

Section: Introductionmentioning

confidence: 99%

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Does parental experience of the diagnosis and intervention process differ for children with auditory neuropathy?

Stroebel

Swanepoel

2014

International Journal of Pediatric Otorhinolaryngology

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Objectives: This study compared parental experience of the audiological diagnosis and intervention process in children with auditory neuropathy spectrum disorder and sensory neural hearing loss. Method:A matched group survey was used with parents of children with auditory neuropathy spectrum disorder (ANSD) matched with a control group of parents and children with sensorineural hearing loss (SNHL). The two groups were matched in terms of the child's gender, age, amplifications used, social background and utilization of private or public health care sectors. An interview questionnaire, consisting of 45 questions in 6 categories (1. biographic information, 2. experiences of audiological diagnosis, 3. hearing aid benefit, 4. parental experience of the rehabilitation decision making process, 5. parental needs for emotional support and 6. parental needs for information) using a 5-point lickert scale for categories 2 to 7, was administered by the same audiologist.

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Section: Discussionmentioning

confidence: 99%

“…Additional questions were referred from qualitative report on parents whose infants have been identified with ANSD [12].…”

Section: Methodsmentioning

confidence: 99%

“…In a qualitative narrative study by Uus, Young & Day (2012), experiences of ANSD parents were described. The diagnosis of ANSD in this study was made following newborn hearing screening.…”

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Does parental experience of the diagnosis and intervention process differ for children with auditory neuropathy?

Stroebel

Swanepoel

2014

International Journal of Pediatric Otorhinolaryngology

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“…The causes of ANSD are multifactorial, with variable sites of lesion along the auditory pathway, anywhere from the inner hair cells to the cerebral cortex(7–9). Neonatal risk factors associated with ANSD include prematurity, hyperbilirubinemia, hypoxia, CNS immaturity, low-birth weight, NICU stay, and use of ototoxic drugs(6).…”

Section: Auditory Neuropathy Spectrum Disordermentioning

confidence: 99%

Cochlear implantation in unique pediatric populations

Hang

Kim

Zdanski

2012

Current Opinion in Otolaryngology & Head and Neck Surgery

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Purpose of review Over the last decade, the selection criteria for cochlear implantation have expanded to include children with special auditory, otologic, and medical problems. Included within this expanded group of candidates are those children with auditory neuropathy spectrum disorder, cochleovestibular malformations, cochlear nerve deficiency, associated syndromes, as well as multiple medical and developmental disorders. Definitive indications for cochlear implantation in these unique pediatric populations are in evolution. This review will provide an overview of managing and habilitating hearing loss within these populations with specific focus on cochlear implantation as a treatment option. Recent findings Cochlear implants have been successfully implanted in children within unique populations with variable results. Evaluation for cochlear implant candidacy includes the core components of a full medical, audiologic, and speech and language evaluations. When considering candidacy in these children, additional aspects to consider include disorder specific surgical considerations and child/care-giver counseling regarding reasonable post-implantation outcome expectations. Summary Cochlear implantations are accepted as the standard of care for improving hearing and speech development in children with severe to profound hearing loss. However, children with sensorineural hearing loss who meet established audiologic criteria for cochlear implantation may have unique audiologic, medical, and anatomic characteristics that necessitate special consideration regarding cochlear implantation candidacy and outcome. Individualized pre-operative candidacy and counseling, surgical evaluation, and reasonable post-operative outcome expectations should be taken into account in the management of these children.

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Parent-to-Parent Support for Parents With Children Who Are Deaf or Hard of Hearing: A Conceptual Framework

2014

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The goals of this project were to: (1) identify the constructs and components of a conceptual framework of parent-to-parent support for parents of children who are deaf or hard of hearing (D/HH); and (2) invite a panel of international experts to provide personal judgment on the conceptual framework.In a dual-stage scoping review methodology, the first project identified, extracted, and organized data into libraries of thematic and descriptive content. A conceptual framework of parent-to-parent support for parents of children who are D/HH was developed and presented in a comprehensive, bidirectional informational graphic.A modified eDelphi study satisfied the consultation and second stage of the scoping review. Hand-picked experts (from seven countries) with experience in provision, research or experience in the area of parent-to-parent support participated in the revision of the original conceptual framework. KeywordsScoping review, eDelphi, parent-to-parent support, children with hearing loss, deaf or hard of hearing, conceptual framework iii Co-authorship Statement

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Auditory neuropathy spectrum disorder in the wider health context: Experiences of parents whose infants have been identified through newborn hearing screening programme

Abstract: An understanding of parents' perspective is particularly relevant to everyone involved in early support and management of infants with ANSD.

Cited by 10 publications

References 18 publications

Does parental experience of the diagnosis and intervention process differ for children with auditory neuropathy?

Does parental experience of the diagnosis and intervention process differ for children with auditory neuropathy?

Cochlear implantation in unique pediatric populations

Parent-to-Parent Support for Parents With Children Who Are Deaf or Hard of Hearing: A Conceptual Framework

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