How well does the Developmental Journal work for children, parents and practitioners?
Research details
- Type of funding: Project Grant
- Grant Holder: Dr Naomi Dale
- Institute: Great Ormond Street Hospital
- Region: London
- Start date: May 2011
- End Date: December 2015
- Priority:
- Eye Category:
Overview
Each year, 4 in every 10,000 infants born in the UK will be diagnosed with severe visual impairment or blindness by their first birthday. It can mean life-long disability and there may not be any treatment available. So there is a clear need for clinical support to help this vulnerable group of people make the best of life.
A new tool, called the Developmental Journal (known as DJ), is being rolled out to clinics across the UK as part of the government’s Early Support programme. DJ is a ‘how to’ guide to monitoring child development, together with specific guidance to help parents care for their child. It was put together based on extended clinical and research work from a team at Great Ormond Street Hospital and on knowledge in developmental psychology.
The UK roll-out gives Dr Dale and team an opportunity to find out how well DJ works for children, parents and healthcare practitioners. So in this project the team will test 100 infants with severe visual impairment over a period of 2 years. Half the children will have the DJ and half will have standard care. The team will measure the children’s progress in several ways, including questionnaires and measuring brain electrical activity at the start and after 1 and 2 years.
Results from the study should tell us whether DJ works and why, and how much of any benefits are down to the practitioner, the DJ materials or both. The team hopes to use the evidence to improve the DJ content and support materials.
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Scientific summary
Evaluation of the Early Support Developmental Journal: early intervention for infants and young children with severe visual impairment
Infants with severe visual impairment (VI) are at risk of serious developmental difficulties, including developmental setback/autistic regression, yet there are few existing tools to appropriately monitor or intervene in their development. This proposal aims to evaluate the effectiveness of a specific monitoring and intervention programme, the Developmental Journal (DJ), in optimising outcomes for this vulnerable group of children. Specifically, we will establish (a) whether DJ is superior to standard care; and (b) whether any benefits are due to the materials alone, the influence of the materials on practitioner style, or practitioner style independent of DJ materials. The DJ is being rolled out across the UK as part of the governmental Early Support programme and a national study is required for sampling.
One hundred children (0-15 months at outset) with severe VI will receive the DJ or standard support for 24 months, and, within the DJ group, given one of two different forms of practitioner involvement. Standardised neurocognitive assessments, detailed analysis of parent-child interactions, brain event-related potentials and practitioner and parent expectations and styles will be assessed in a 2-year longitudinal controlled trial with baseline and follow-up at 1 and 2 years of intervention. Cross-sectional and longitudinal measures, including developmental setback, will be collected. Multi-variate statistical analyses are being undertaken to identify the differing influences of the materials and practitioner style on parent-child interactions and child outcome and to identify those aspects of practitioner involvement and use of the materials which lead to the greatest effectiveness in practice and child outcome.