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ORIGINAL RESEARCH article

Front. Hum. Neurosci.
Sec. Brain Health and Clinical Neuroscience
Volume 18 - 2024 | doi: 10.3389/fnhum.2024.1510812
This article is part of the Research Topic Visual Perception in Children and Adolescents with Visual Impairments View all 7 articles

'We don't know nearly enough': An online survey exploring perspectives of specialists who support children with brain-based visual impairments

Provisionally accepted
Josephine Sabrina Jakubowski Josephine Sabrina Jakubowski 1Eloise May Eloise May 2Rebecca Findlay Rebecca Findlay 2,3Nicola McDowell Nicola McDowell 2,4Samantha Simkin Samantha Simkin 2,3Lisa Hamm Lisa Hamm 2*
  • 1 Queen's University, Kingston, Ontario, Canada
  • 2 The University of Auckland, Auckland, Auckland, New Zealand
  • 3 BLENNZ, Aotearoa, New Zealand
  • 4 Massey University, Wellington, Manawatu-Wanganui, New Zealand

The final, formatted version of the article will be published soon.

    Introduction: Children with brain-based visual impairments (some of whom have a diagnosis of Cerebral Visual Impairment, or 'CVI') represent a growing and underserved population within vision services. These children often have more complex needs than those with ocular visual impairments and benefit from specialist support from multiple disciplines. This study aimed to understand the perspectives of these specialists in terms of their goals, views on collaboration, and understanding of the term 'CVI'.We invited a range of specialists who work with children with brain-based visual impairments, including educators, rehabilitation staff, clinicians, and family members, to complete an online survey between April 2023 and April 2024.The analysis included 94 respondents: 51 educators, 30 rehabilitation staff, 7 clinicians, and 6 family members. Respondents shared common goals of connecting with the child (87/94, 93%) and fostering their learning and development (82/94, 93%). However, respondents also noted some specific and divergent goals, which can be at odds with each other. Professional staff frequently identified family members as the most valuable source of information about their child's vision (36/88, 41%), though family members expressed feeling under-valued. Transdisciplinary clinics were highlighted as a helpful model to provide quality child-centred care. Of the 73 professional staff who reported being familiar with the term 'CVI' (73/88, 83%), most (61/73, 84%) thought it was underdiagnosed, but respondents had different perspectives on what a diagnosis meant. Only 73% of those familiar with CVI reported receiving formal training about it.The varied goals and different perspectives on CVI create challenges to providing cohesive support for children with brain-based visual impairments. Increasing the availability of complementary formal training across disciplines and adopting transdisciplinary models of care are promising approaches to improve the quality of services.

    Keywords: brain based visual impairment, CVI, Cerebral visual impairment, Parent perspectives, Survey

    Received: 13 Oct 2024; Accepted: 24 Dec 2024.

    Copyright: © 2024 Jakubowski, May, Findlay, McDowell, Simkin and Hamm. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

    * Correspondence: Lisa Hamm, The University of Auckland, Auckland, 1142, Auckland, New Zealand

    Disclaimer: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.