A major national study into the development of babies and young children with severe visual impairment has shown the efficacy of an early intervention programme for the first time, supporting them to reach important developmental milestones and experience fewer mental health issues, compared to those receiving other types of support in the community.
The study, led by Great Ormond Street Hospital (GOSH) and the UCL Great Ormond Street Institute of Child Health (ICH), found important improvements for babies and young children whose community healthcare and sensory impairment education teams used the Developmental Journal for babies and young children with visual impairment (DJVI) - UCL Business website.
The results of this research, published in Developmental Medicine and Child Neurology, demonstrate the benefits of DJVI; a set of developmental monitoring and interventionist guidance materials designed by GOSH consultants in 2005 specifically for babies and young children with visual impairment. The materials are designed to be used by local practitioners in partnership with parents to help their child through everyday interactions and tasks at home. This has the potential to support up to 450-500 babies born per year with severe visual impairment; of these at least 200 have rare eye disorders (as in this study).
The study was commissioned by the Royal National Institute of Blind People (RNIB), which jointly funded the research alongside leading medical charities Fight for Sight and Great Ormond Street Hospital Children’s Charity (GOSH Charity).
The study followed 100 babies with rare inherited eye disorders and severe visual impairment. The children receiving the DJVI made promising clinically relevant improvements in nonverbal cognition and in expressive language compared with those who received other types of support. In addition, both patients and parents using the DJVI showed significant improvements in behavior and mental health, including a reduction in stress for parents.
RNIB originally developed the project as part of its drive to support effective early years services for babies and young children with visual impairment, and build an evidence base for best practice. GOSH Charity’s funding comes as part of its ongoing commitment to improving the quality of life for children with rare and complex conditions at GOSH and across the UK, which recently included the commitment to fund the brand new GOSH Sight and Sound Centre, supported by Premier Inn, due to open in 2020. The new centre will be tailored to the specific needs of this patient group, and its clinical staff will work closely with local services to support patients with sight and hearing loss, including using the new guidelines to benefit patients. Fight for Sight provided a significant financial contribution for this study as a charity dedicated to funding impactful research with clear benefits for patients.
Dr Naomi Dale, Consultant Clinical Psychologist and lead investigator of the research at GOSH and ICH, said, “Finding out a baby has a visual impairment can have a deep impact on an entire family, and can present challenges to learning, development and mental health for the baby. Until now, we’ve lacked the research to show what kind of intervention and support for babies and parents is most useful. This study is important because it has shown that the Developmental Journal is a promising method for assisting the baby and young child across the early years and supporting their parents too. These findings will help inform how we work with families at GOSH, and their local practitioners to provide the best possible care and support at our hospital and in the patient’s local community.”
Sarah Lambert, Head of Social Change at RNIB, said: “We are delighted that this research confirms what we have long known; structured, high quality intervention - delivered with the support of trained professionals - gives babies and young children with vision impairment the highest chance of achieving their potential. RNIB believes that all children should have access to the best possible support at the earliest opportunity, and that statutory services should be adequately resourced to provide this.”
Dr Neil Ebenezer, Director of Research, Policy and Innovation at Fight for Sight, said: “We focus on funding research that will have a positive impact for patients so we’re delighted that this project could support the development of babies and young children with congenital vision disorders. We hope that this home-based early intervention can be widely adopted in the future to offer direct benefits for children and their parents.”
Home-based early intervention in infants and young children with visual impairment using the Developmental Journal: longitudinal cohort study. Dale NJ et al (2018) Developmental Medicine and Child Neurology, Nov 2018 (DOI) - 10.1111/dmcn.14081.
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Notes to Editors
About Great Ormond Street Hospital for Children NHS Foundation Trust
Great Ormond Street Hospital is one of the world’s leading children’s hospitals with the broadest range of dedicated, children’s healthcare specialists under one roof in the UK. The hospital’s pioneering research and treatment gives hope to children from across the UK with the rarest, most complex and often life-threatening conditions. Our patients and families are central to everything we do – from the moment they come through the door and for as long as they need us.
About the UCL Great Ormond Street Institute of Child Health (ICH)
The UCL Great Ormond Street Institute of Child Health (ICH) is part of the Faculty of Population Health Sciences within the School of Life and Medical Sciences at University College London. Together with its clinical partner Great Ormond Street Hospital for Children NHS Foundation Trust (GOSH), it forms the largest concentration of children's health research in Europe.
For more information visit the UCL Great Ormond Street Institute of Child Health (ICH) website
We are the Royal National Institute of Blind People (RNIB).
Every six minutes, someone in the UK begins to lose their sight. RNIB is taking a stand against exclusion, inequality and isolation to create a world without barriers where people with sight loss can lead full lives. A different world where society values blind and partially sighted people not for the disabilities they’ve overcome, but for the people they are.
RNIB. See differently.
Call the RNIB Helpline on 0303 123 9999 or visit the RNIB website.
About Fight for Sight
Fight for Sight is the leading UK charity dedicated to funding pioneering research to prevent sight loss and treat eye disease.
The charity currently invests over £8m in 160 research projects at 49 different universities and hospitals across the UK.
The organisation’s research covers both common and rare eye diseases and conditions including age-related macular degeneration, glaucoma, inherited eye diseases and those linked to other conditions like stroke and diabetes.
Visit the Fight for Sight website.