| Title: |
Health, education, and social care provision after diagnosis of childhood visual disability |
| Authors: |
Solebo, Ameenat Lola; Teoh, Lucinda Jade; Sargent, Jenefer; Rahi, Jugnoo Sangeeta; British Childhood Visual Impairment and Blindness Study Interest Group |
| Contributors: |
University of St Andrews.School of Medicine; University of St Andrews.Sir James Mackenzie Institute for Early Diagnosis; University of St Andrews.Infection and Global Health Division |
| Publication Year: |
2025 |
| Collection: |
University of St Andrews: Digital Research Repository |
| Subject Terms: |
RJ101 Child Health. Child health services; Pediatrics; Perinatology; and Child Health; Developmental Neuroscience; Clinical Neurology; RR-NDAS; MCC; RJ101 |
| Description: |
Funding: A Fight for Sight grant (1525/26) and the Ulverscroft Foundation for the Ulverscroft Vision Research Group. ALS received support from the National Institute for Health Research (NIHR) Moorfields Biomedical Research Centre, an NIHR Lectureship, and an NIHR Clinician Scientist award (CS-2018-18-ST2-005). JSR is supported in part by the NIHR Moorfield Biomedical Research Centre, and an NIHR Senior Investigator award. UCL Institute of Child Health/Great Ormond Street Hospital for children received a proportion of funding from the Department of Health's NIHR Biomedical Research Centres funding scheme. ; Aim To investigate the health, education, and social care provision for children newly diagnosed with visual disability. Method This was a national prospective study, the British Childhood Visual Impairment and Blindness Study 2 (BCVIS2), ascertaining new diagnoses of visual impairment or severe visual impairment and blindness (SVIBL), or equivalent vision. Data collection was performed by managing clinicians up to 1-year follow-up, and included health and developmental needs, and health, education, and social care provision. Results BCVIS2 identified 784 children newly diagnosed with visual impairment/SVIBL (313 with visual impairment, 471 with SVIBL). Most children had associated systemic disorders (559 [71%], 167 [54%] with visual impairment, and 392 [84%] with SVIBL). Care from multidisciplinary teams was provided for 549 children (70%). Two-thirds (515) had not received an Education, Health, and Care Plan (EHCP). Fewer children with visual impairment had seen a specialist teacher (SVIBL 35%, visual impairment 28%, χ2 p < 0.001), or had an EHCP (11% vs 7%, χ2 p < 0.01). Interpretation Families need additional support from managing clinicians to access recommended complex interventions such as the use of multidisciplinary teams and educational support. This need is pressing, as the population of children with visual impairment/SVIBL is expected to grow in size and complexity. ; Peer reviewed |
| Document Type: |
article in journal/newspaper |
| File Description: |
application/pdf |
| Language: |
English |
| Relation: |
Developmental Medicine and Child Neurology; 311645264; 85143288076; https://hdl.handle.net/10023/31503; https://www.scopus.com/pages/publications/85143288076 |
| DOI: |
10.1111/dmcn.15447 |
| Availability: |
https://hdl.handle.net/10023/31503; https://doi.org/10.1111/dmcn.15447; https://www.scopus.com/pages/publications/85143288076 |
| Rights: |
© 2022 The Authors. This is an open access article under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits use, distribution and reproduction in any medium, provided the original work is properly cited. |
| Accession Number: |
edsbas.C3F6825 |
| Database: |
BASE |