Jakubowski Josephine Sabrina, May Eloise, Findlay Rebecca, McDowell Nicola, Simkin Samantha K, Hamm Lisa M
Department of Medicine, Queen's University, Kingston, ON, Canada.
School of Nursing, University of Auckland, Auckland, New Zealand.
Front Hum Neurosci. 2025 Jan 29;18:1510812. doi: 10.3389/fnhum.2024.1510812. eCollection 2024.
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-centered 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 professionals 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.
患有基于脑部的视力障碍的儿童（其中一些被诊断为脑性视力障碍，即“CVI”）在视力服务领域中是一个不断增长且未得到充分服务的群体。这些儿童的需求往往比患有眼部视力障碍的儿童更为复杂，需要多学科的专业支持。本研究旨在了解这些专家在目标、合作观点以及对“CVI”这一术语的理解方面的看法。
我们邀请了一系列与患有基于脑部的视力障碍儿童合作的专家，包括教育工作者、康复人员、临床医生和家庭成员，在2023年4月至2024年4月期间完成一项在线调查。
分析包括94名受访者：51名教育工作者、30名康复人员、7名临床医生和6名家庭成员。受访者分享了与孩子建立联系（87/94，93%）和促进其学习与发展（82/94，93%）的共同目标。然而，受访者也指出了一些具体且不同的目标，这些目标可能相互矛盾。专业人员经常将家庭成员视为有关孩子视力最有价值的信息来源（36/88，41%），尽管家庭成员表示感觉自己未得到重视。跨学科诊所被视为提供优质以儿童为中心护理的有益模式。在报告熟悉“CVI”这一术语的73名专业人员中（73/88，83%），大多数（61/73，84%）认为其诊断不足，但受访者对诊断的含义有不同看法。熟悉CVI的专业人员中只有73%报告接受过关于它的正规培训。
CVI的不同目标和不同观点给为患有基于脑部的视力障碍儿童提供连贯支持带来了挑战。增加跨学科补充正规培训的可及性并采用跨学科护理模式是提高服务质量的有前景的方法。
