“It’s like a guessing game all the time”: parent insights on barriers, supports, and priorities for children with cortical visual impairment and complex communication needs

References

• Beukelman, D. R., & Light, J. C. (2020). Augmentative & alternative communication: Supporting children and adults with complex communication needs. Brookes Publishing. http://ebookcentral.proquest.com/lib/pensu/detail.action?docID=6229697
   Google Scholar
• Beukelman, D. R. (2016). Precision intervention research for adults with complex communication needs resulting from acquired conditions. Augmentative and Alternative Communication, 32, 233–240. https://doi.org/10.1080/07434618.2016.1252947
   PubMed Web of Science ®Google Scholar
• Blackstone, S. W., Luo, F., Canchola, J., Wilkinson, K. M., & Roman-Lantzy, C. (2021). Children with cortical visual impairment and complex communication needs: Identifying gaps between needs and current practices. Language, Speech, and Hearing Services in Schools, 52(2), 612–629. https://doi.org/10.1044/2020_LSHSS-20-00088
   PubMed Web of Science ®Google Scholar
• Blackstone, S., Luo, F., Barker, R. M., Sevcik, R., Romski, A., Casella, M., Roman, V., & -Lantzy, C. (2022). Profiles of children with cortical visual impairment who use augmentative and alternative communication: A retrospective examination. American Journal of Speech-Language Pathology, 31(6), 2707–2721. https://doi.org/10.1044/2022_AJSLP-22-00130
   PubMedGoogle Scholar
• Boster, J. B., McCarthy, J. W., Brown, K., Spitzley, A. M., & Blackstone, S. W. (2021). Creating a path for systematic investigation of children with cortical visual impairment who use augmentative and alternative communication. American Journal of Speech-Language Pathology, 30(4), 1880–1893. https://doi.org/10.1044/2021_AJSLP-20-00203
   PubMed Web of Science ®Google Scholar
• Chang, M. Y., & Borchert, M. S. (2020). Advances in the evaluation and management of cortical/cerebral visual impairment in children. Survey of Ophthalmology, 65(6), 708–724. https://doi.org/10.1016/j.survophthal.2020.03.001
   PubMed Web of Science ®Google Scholar
• Chang, M. Y., & Borchert, M. S. (2021). Validity and reliability of eye tracking for visual acuity assessment in children with cortical visual impairment. Journal of American Association for Pediatric Ophthalmology and Strabismus, 25(6), 334.e1–334.e5. https://doi.org/10.1016/j.jaapos.2021.07.008
   Google Scholar
• Coburn, K. L., Jung, S., Ousley, C. L., Sowers, D. J., Wendelken, M., & Wilkinson, K. M. (2021). Centering the family in their system: A framework to promote family-centered AAC services. Augmentative and Alternative Communication (Baltimore, Md. : 1985), 37(4), 229–240. https://doi.org/10.1080/07434618.2021.1991471
   PubMed Web of Science ®Google Scholar
• Creswell, J. W. (2013). Qualitative inquiry and research design: Choosing among 5 approaches (Vol. 3rd). Sage Publishing.
   Google Scholar
• CVI Scotland. (2023). CVI Scotland: Sharing and developing our understanding of CVI. CVI Scotland. https://cviscotland.org/
   Google Scholar
• DeThorne, L. S., Hengst, J., Fisher, K., & King, A. (2014). Keep your eye on the prize: Implementing AAC within the broader context of communicative competence. Young Exceptional Children, 17(1), 39–50. https://doi.org/10.1177/1096250613485453
   Google Scholar
• Dutton, G., Calvert, J., & Ibrahim, H. (2010). Structured clinical history-taking for cognitive and perceptual visual dysfunction and for profound visual disabilities due to damage to the brain in children. In G. Dutton & M. Bax (Eds.), Clinics in developmental medicine no. 186: Visual impairment in children due damage to the brain (pp.177–128). Mac Keith Press.
   Google Scholar
• Fazzi, E., Bova, S., Giovenzana, A., Signorini, S., Uggetti, C., & Bianchi, P. (2009). Cognitive visual dysfunctions in preterm children with periventricular leukomalacia. Developmental Medicine and Child Neurology, 51(12), 974–981. https://doi.org/10.1111/j.1469-8749.2009.03272.x
   PubMed Web of Science ®Google Scholar
• Giorgi, A. (2009). The descriptive phenomenological method in psychology: A modified husserlian approach. Duquesne University Press.
   Google Scholar
• Good, W. V., Jan, J. E., Burden, S. K., Skoczenski, A., & Candy, R. (2001). Recent advances in cortical visual impairment. Developmental Medicine & Child Neurology, 43(01), 56–60. https://doi.org/10.1111/j.1469-8749.2001.tb00387.x
   PubMedGoogle Scholar
• Goodenough, T., Pease, A., & Williams, C. (2021). Bridging the gap: Parent and child perspectives of living with cerebral visual impairments. Frontiers in Human Neuroscience, 15, 689683. https://doi.org/10.3389/fnhum.2021.689683
   PubMed Web of Science ®Google Scholar
• Guzzetta, A., D'Acunto, G., Rose, S., Tinelli, F., Boyd, R., & Cioni, G. (2010). Plasticity of the visual system after early brain damage. Developmental Medicine and Child Neurology, 52(10), 891–900. https://doi.org/10.1111/j.1469-8749.2010.03710.x
   PubMed Web of Science ®Google Scholar
• Huo, R., Burden, S., Hoyt, C., & Good, W. (1999). Chronic cortical visual impairment in children: Aetiology, prognosis, and associated neurological deficits. The British Journal of Ophthalmology, 83(6), 670–675. https://doi.org/10.1136/bjo.83.6.670
   PubMed Web of Science ®Google Scholar
• Jackel, B. (2019). A survey of parents of children with cortical or cerebral visual impairment: 2018 follow-up. Seminars in Pediatric Neurology, 31, 3–4. https://doi.org/10.1016/j.spen.2019.05.002
   PubMed Web of Science ®Google Scholar
• Jackel, B., Wilson, M., & Hartmann, E. (2010). A survey of parents of children with cortical or cerebral visual impairment. Journal of Visual Impairment & Blindness, 104(10), 613–623. https://doi.org/10.1177/0145482X1010401007
   Web of Science ®Google Scholar
• Kvale, S., & Brinkmann, S. (2009). InterViews: Learning the craft of qualitative research interviewing (2nd ed.). Sage Publishing.
   Google Scholar
• Light, J., & McNaughton, D. (2015). Designing AAC research and intervention to improve outcomes for individuals with complex communication needs. Augmentative and Alternative Communication (Baltimore, Md. : 1985), 31(2), 85–96. https://doi.org/10.3109/07434618.2015.1036458
   PubMed Web of Science ®Google Scholar
• Light, J. (1997). “Communication is the essence of human life”: Reflections on communicative competence. Augmentative and Alternative Communication, 13(2), 61–70. https://doi.org/10.1080/07434619712331277848
   Google Scholar
• Light, J., Wilkinson, K., Thiessen, A., Beukelman, D., & Fager, S. (2019). Designing effective AAC displays for individuals with developmental or acquired disabilities: State of the science and future research directions. Augmentative and Alternative Communication (Baltimore, Md. : 1985), 35(1), 42–55. https://doi.org/10.1080/07434618.2018.1558283
   PubMed Web of Science ®Google Scholar
• Mandak, K., & Light, J. (2018). Family-centered services for children with ASD and limited speech: The experiences of parents and speech language pathologists. Journal of Autism and Developmental Disorders, 48(4), 1311–1324. https://doi.org/10.1007/s10803-017-3241-y
   PubMed Web of Science ®Google Scholar
• Mandak, K., Light, J., & McNaughton, D. (2020). The effects of an online training on preservice speech-language pathologists’ use of family-centered skills. American Journal of Speech-Language Pathology, 29(3), 1489–1504. https://doi.org/10.1044/2020_AJSLP-19-00057
   PubMed Web of Science ®Google Scholar
• Mandak, K., O’Neill, T., Light, J., & Fosco, G. M. (2017). Bridging the gap from values to actions: A family systems framework for family-centered AAC services. Augmentative and Alternative Communication (Baltimore, Md. : 1985), 33(1), 32–41. https://doi.org/10.1080/07434618.2016.1271453
   PubMed Web of Science ®Google Scholar
• Marshall, J., & Goldbart, J. (2008). ‘Communication is everything I think.’ Parenting a child who needs augmentative and alternative communication (AAC). International Journal of Language & Communication Disorders, 43(1), 77–98. https://doi.org/10.1080/13682820701267444
   PubMed Web of Science ®Google Scholar
• McCarty, T. V., Sowers, D. J., Wolf, S. J., & Wilkinson, K. M. (2021). A preliminary study of the relation of visual attention to stimulus complexity and functional vision in individuals with cortical visual impairment: Implications for augmentative and alternative communication. Perspectives of the ASHA Special Interest Groups, 6(6), 1603–1617. https://doi.org/10.1044/2021_PERSP-21-00112
   Google Scholar
• McDowell, N. (2021). Power is knowledge: Empowering parents of children with cerebral visual impairment. Disability & Society, 36(4), 596–617. https://doi.org/10.1080/09687599.2020.1751586
   Web of Science ®Google Scholar
• McKillop, E., Bennett, D., McDaid, G., Holland, B., Smith, G., Spowart, K., & Dutton, G. (2006). Problems experienced by children with cognitive visual dysfunction due to cerebral visual impairment – and the approaches which parents have adopted to deal with these problems. British Journal of Visual Impairment, 24(3), 121–127. https://doi.org/10.1177/0264619606066186
   Google Scholar
• McNaughton, D., Rackensperger, T., Benedek-Wood, E., Krezman, C., Williams, M. B., & Light, J. (2008). “A child needs to be given a chance to succeed”: Parents of individuals who use AAC describe the benefits and challenges of learning AAC technologies. Augmentative and Alternative Communication (Baltimore, Md. : 1985), 24(1), 43–55. https://doi.org/10.1080/07434610701421007
   PubMed Web of Science ®Google Scholar
• Mei, C., Reilly, S., Reddihough, D., Mensah, F., Green, J., Pennington, L., & Morgan, A. T. (2015). Activities and participation of children with cerebral palsy: Parent perspectives. Disability and Rehabilitation, 37(23), 2164–2173. https://doi.org/10.3109/09638288.2014.999164
   PubMed Web of Science ®Google Scholar
• Merabet, L. B., Mayer, D. L., Bauer, C. M., Wright, D., & Kran, B. S. (2017). Disentangling how the brain is “wired” in cortical (cerebral) visual impairment. Seminars in Pediatric Neurology, 24(2), 83–91. https://doi.org/10.1016/j.spen.2017.04.005
   PubMed Web of Science ®Google Scholar
• Morse, J. M. (2015). Critical analysis of strategies for determining rigor in qualitative inquiry. Qualitative Health Research, 25(9), 1212–1222. https://doi.org/10.1177/1049732315588501
   PubMed Web of Science ®Google Scholar
• O’Neill, T., & Wilkinson, K. M. (2020). Preliminary investigation of the perspectives of parents of children with cerebral palsy on the supports, challenges, and realities of integrating augmentative and alternative communication into everyday life. American Journal of Speech-Language Pathology, 29(1), 238–254. https://doi.org/10.1044/2019_AJSLP-19-00103
   PubMed Web of Science ®Google Scholar
• Perkins School for the Blind (2023). CVI now: CVI is the leading cause of childhood blindness. https://www.perkins.org/cvi-now/
   Google Scholar
• Roman-Lantzy, C. (2018). Cortical visual impairment: An approach to assessment and intervention (Second). American Foundation for the Blind.
   Google Scholar
• Saldaña, J. (2013). The coding manual for qualitative researchers (2nd ed.). Sage Publishing.
   Google Scholar
• Smith, A. L., & Hustad, K. C. (2015). AAC and early intervention for children with cerebral palsy: Parent perceptions and child risk factors. Augmentative and Alternative Communication (Baltimore, Md. : 1985), 31(4), 336–350. https://doi.org/10.3109/07434618.2015.1084373
   PubMed Web of Science ®Google Scholar
• Walker, C., & Wegner, J. (2021). Eye-gaze access and cortical visual impairment: A case study. Assistive Technology Outcomes and Benefits, 15, 76–99.
   Google Scholar
• West, M. R., Borchert, M. S., & Chang, M. Y. (2021). Ophthalmologic characteristics and outcomes of children with cortical visual impairment and cerebral palsy. Journal of AAPOS : The Official Publication of the American Association for Pediatric Ophthalmology and Strabismus, 25(4), 223.e1-6–223.e6. https://doi.org/10.1016/j.jaapos.2021.03.011
   Web of Science ®Google Scholar
• Wilkinson, K. M., & Jagaroo, V. (2004). Contributions of principles of visual cognitive science to AAC system display design. Augmentative and Alternative Communication, 20(3), 123–136. https://doi.org/10.1080/07434610410001699717
   Google Scholar
• Wilkinson, K. M., & Wolf, S. J. (2021). An in-depth case description of gaze patterns of an individual with cortical visual impairment to stimuli of varying complexity: Implications for augmentative and alternative communication design. Perspectives of the ASHA Special Interest Groups, 6(6), 1591–1602. https://doi.org/10.1044/2021_PERSP-21-00111
   Google Scholar
• Williams, M. B., Krezman, C., & McNaughton, D. (2008). Reach for the stars”: Five principles for the next 25 years of AAC. Augmentative and Alternative Communication, 24(3), 194–206. https://doi.org/10.1080/08990220802387851
   Web of Science ®Google Scholar