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18-01-2020 | Brief Report

Brief Report: Assessment Experiences of Children with Neurogenetic Syndromes: Caregivers’ Perceptions and Suggestions for Improvement

Auteurs: Bridgette Kelleher, Taylor Halligan, Tessa Garwood, Samantha Howell, Breanna Martin-O’Dell, Amber Swint, Liberty-Ann Shelton, Joey Shin

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 4/2020

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Abstract

It is well-recognized that measurement options for diagnosing and monitoring children with neurogenetic syndromes (NGS) associated with moderate to severe intellectual impairment are limited (Berry-Kravis, Dev Med Child Neurol https://​doi.​org/​10.​1111/​dmcn.​13018, 2016), and caregivers experience significant concerns regarding the assessment process. However to date, these concerns have not been summarized into actionable steps for clinicians and test-makers. As such, we used a mixed methods approach to assess caregiver-derived perceptions and suggestions for improving assessments in NGS. Results indicated many shared challenges and suggestions for improvement, particularly in the domains of testing procedures and examiner communication. Integrating these suggestions into future protocols is an important next step toward improving the quality of assessment procedures for children with NGS and their families across both clinical and research contexts.
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Literatuur
go back to reference Goodwin, J., Schoch, K., Shashi, V., Hooper, S. R., Morad, O., Zalevsky, M., … Campbell, L. E. (2015). A tale worth telling: the impact of the diagnosis experience on disclosure of genetic disorders. Journal of Intellectual Disability Research, 59(5), 474–486. https://doi.org/10.1111/jir.12151 Goodwin, J., Schoch, K., Shashi, V., Hooper, S. R., Morad, O., Zalevsky, M., … Campbell, L. E. (2015). A tale worth telling: the impact of the diagnosis experience on disclosure of genetic disorders. Journal of Intellectual Disability Research, 59(5), 474–486. https://​doi.​org/​10.​1111/​jir.​12151
go back to reference Tonnsen, B. L., Haney, A., Witthuhn, N., Thurm, A., DiStefano, C., Sadhwani, A., … Hamrick, L. (n.d.). The differential item functioning index (DIFI): An accessible, alternative approach to estimating measurement invariance in special populations. Under Review. Tonnsen, B. L., Haney, A., Witthuhn, N., Thurm, A., DiStefano, C., Sadhwani, A., … Hamrick, L. (n.d.). The differential item functioning index (DIFI): An accessible, alternative approach to estimating measurement invariance in special populations. Under Review.
Metagegevens
Titel
Brief Report: Assessment Experiences of Children with Neurogenetic Syndromes: Caregivers’ Perceptions and Suggestions for Improvement
Auteurs
Bridgette Kelleher
Taylor Halligan
Tessa Garwood
Samantha Howell
Breanna Martin-O’Dell
Amber Swint
Liberty-Ann Shelton
Joey Shin
Publicatiedatum
18-01-2020
Uitgeverij
Springer US
Gepubliceerd in
Journal of Autism and Developmental Disorders / Uitgave 4/2020
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI
https://doi.org/10.1007/s10803-020-04363-0

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