University of Edinburgh
 

Using the Early Support developmental journal for babies and children with visual impairment

Presented on Friday 27 February 2009

Developmental Vision Team (DVT)
Great Ormond Street Hospital NHS Trust (GOSH),
UCL Institute of Child Health, London

Multidisciplinary team
Focus on development and vision of children with visual impairment especially 0-5 years

Funded by Department for Education and Skills (DfES, UK)

Notes: (The Developmental Vision team at Great Ormond Street Hospital for Children (GOSH) under the leadership of Patricia Sonksen until 2001 and Naomi and Alison since then, has been at the forefront of developing materials, guidance and service delivery for babies and infants with visual impairment over a period of 30 years.
 
The population of the Developmental Vision Clinic (DVC) is infants and young children with severe visual disorders, referred for specialist management of their development. A database recording findings at each clinic visit was established in 1977. This database supports our research initiatives and currently contains data on more than 1300 young children with information on most children spanning their early years. Our clinic serves a national population which, in light of the rarity of congenital visual impairment in the UK (3-4 per 10,000), gives us unique access and insight into the needs of young children with visual impairment and their families.
 
The team is multidisciplinary with staffing from neurodevelopmental paediatrics, psychology, nursing, occupational therapy, speech and language therapy and optometry. The team has had national and international recognition for its clinical and academic work and has published extensively.)

Findings from practice and research – DVT GOSH

  • Visual impairment can lead to developmental challenges in all areas of development:
  • Early movement and mobility, eg; motivation to explore and move, using hands, learning to walk independently
  • Learning about the world, eg; understanding sound, object concepts, relationships and properties.
  • Social understanding, eg; learning about others, joint attention/shared understandings, relationships
  • Communication and language, eg; learning about daily activities, becoming verbally expressive, making links between words and objects/actions
  • Independent self care, eg; feeding, toileting.

Vulnerable processes:

  • Integrating senses in the first year of life
  • Becoming social and communicative
  • Becoming aware of their movement potential
  • Sharing attention (joint attention)
  • Making their world meaningful
  • Linking language to meaning.

Aims of the developmental journal

  • To support parental understanding of their child's development and progress
  • To identify the small steps underpinning learning
    • stages of readiness
    • appropriate goals
    • sequential learning
  • To develop a shared language and understanding of development (parents and professionals)
  • To provide a common framework for understanding the early development of children with a visual impairment
  • To help professionals gain a more complete picture of what a child is doing, using the observations of parents/carers
  • To highlight vulnerable areas that may need further support
  • To support sharing developmental information with other professionals.

Notes: This slide makes it clear that the brief given to the development team focused on
Supporting families' understanding of and
Ability to provide for their children's needs.
It was not focused on developing something that would be used as a clinical assessment tool for practitioners.

The scientific underpinning of the materials gives professionals, services and multi-agency groups a standard format for monitoring and tracking children’s development and progress.

Core project team
Alison Salt – paediatrician – project lead
Naomi Dale – psychologist – project lead
Jackie Osborne – education consultant/teacher for visual impairment
Patricia Sonksen – paediatrician – lead on visual impairment materials

Process of development (2)

Advisory group from health, education and voluntary sector
Eileen Boothroyd – Education officer, SENSE
Julie Jennings – Under 5s officer, RNIB
Christine Ennals – Family support specialist, Moorfields Hospital NHS Trust
Diana Wingfield – Head of VI LEA service, Essex Early Support Pathfinder
Sue Lewis – Lead Early Support monitoring protocol for deaf babies and children, Mary Hare schools
Sue Buckley – Lead Early Support developmental journal for babies and children with Down syndrome, Down syndrome Education Trust

Process of development (3)

  • Consultation with a range of professionals
  • Three specialist teacher focus groups
  • Four national consultation events involving teachers and parents
  • Professionals accompanying families in clinics
  • Professionals supporting families with materials at home
  • Other professionals.

Notes: There was a range of consultations that took place and key stakeholders , as well as parents, were involved from the beginning.
from the beginning desire that the materials directly linked in to what families and practitioners deemed as needed and helpful.
Consultations enabled common themes to be identified in relation to the materials and approaches, particularly in what they wanted the materials to achieve.

Process of development (4)
Discussion with over 50 families

  • Three parent focus groups
  • Four national consultation events involving parents
  • Use of draft materials with families.

Fitting in with assessment tools

The developmental journal complements and supports other forms of assistance by professionals, eg; formal developmental or visual assessments

NB: It is not standardised checklist or assessment tool.

Flexible use of the developmental journal

  • OK if families complete all or some of the Record – with or without support from the people who work with them
  • OK if families want to talk about the pages in the Record relevant to their child but not fill in the paperwork
  • OK if families ask (or give permission to) professionals to complete the paperwork on their behalf
  • OK if families want to use it more at some times than others
  • OK if families don’t want to use it at all.

Notes: Families can determine their own level of involvement.
It's important that we, as practitioners don’t have fixed ideas on the 'best' way.

Developmental journal – content outline

  • Developmental profile
  • Introduction: What is it and how to use it
  • Developmental journal
  • Activity cards
  • General overview of development
  • Getting stuck – more ideas.

Summary of contents

  • Glossary
  • Activity cards
  • Developing vision activity cards
  • Visual environment and visual materials cards.

Age guide and expectations
Developmental 'stages'

Stages Approx age ('average' child with VI)
1a 0–6 months
1b 4–12 months
2 8–18 months
3 15–24 months
4 21–30 months
5 27–36 months +

Notes: The development of a child is divided roughly into 5 stages.
Each stage is a grouping together of the skills and behaviours that can be expected to emerge at a roughly similar dev. Age.
Not a separate stage in the sense that is used by some dev. Scientists.
Purpose – to make it easier for parents to track dev. In their child.

Lots of discussion re inclusion of this in journal, all the way through the consultations
Mixed views –majority view was that it was useful to have a yardstick to compare progress.
At the same time, parents did not want specific age expectations against each dev. goal.
The overlap of age bands takes into account that chd of different levels of vision tend to learn or acquire skills at a slightly different rate. Chd with most profound levels of visual loss acquiring skills at a slower rate, especially in the early years.

'Approximate' age ranges

he developmental journal is not:
A professional assessment tool, standardised, psychometric norms
A standardised checklist.

The age ranges are only to give a very approximate 'yardstick'.

Notes: Because not standardised – age expectations are very approximate, and should be used very cautiously.

Stages, themes and goals

Each stage is divided into five developmental areas (each with different colour and different picture icon)

  • Themes
  • Developmental goals.

Developmental areas

  • Social and emotional development
  • Communication, language and meaning
  • Play and learning (including using hands)
  • Movement and Mobility
  • Self-care.

Notes: Much debate before it was decided how development was divided up –it may not be how you would have done it! 5 areas cover all dev.
All areas related and all important for early growth
Obviously as all areas can be affected by visual loss –important to monitor all areas of dev.

Themes

  • Each theme is divided into 'developmental goals'
  • It shows what the child has achieved
  • It shows what the child is currently learning
  • It helps to identify new goals to aspire to.

Notes: Topics are then divided into goals.

It is stressed that these are goals and not targets.

Using the activity cards – activities and ideas

  • Provide suggestions for how to support and encourage achieving developmental goals
  • Outline potentially useful activities and strategies
  • Organised and colour coded in line with the stages of the developmental record.

Notes: Parents said that they wanted these to help with ideas to support development.
Also said they wanted in a format such as this –stick it to fridge –prop it up on the nappy changing table

Which activity card to use

Each stage has 2 cards, the second a little more advanced than the first.
At each stage there are 2 cards for each dev area.

Developmental profile

Opportunity to summarise progress and see how child is progressing across different areas of dev.
Summary sheets can be downloaded – keep your own record

Developmental profile – what it is and who it's for

  • Record where a child is up to in all areas of development on one sheet
  • Makes it easier to compare development across more than one area
  • Family completes, with the support of their key worker/teacher of the child with visual impairment
  • Intervals for completion are recommended in the Introduction 'how to use'.

Notes: Ask for examples from those already using journal.

General overview of development – contents

  • Introduction to key areas of development
  • Approaches and strategies to support learning
  • Advice about toys and materials
  • Development of young children with visual impairment
  • References and sources
  • Further reading.

Notes: This is a source of further information for practitioners or families.
It includes information on vulnerable processes which is not mentioned there.

Vision section – what's in it?

  • Record of developing vision
  • Developing vision activity cards – visual promotion
  • The visual environment and visual materials for development and learning – including description of vision levels (I–IV).

Notes: Included because babies and young chd with very limited vision may not achieve their full potential without the promotion of vision.
Such babies need to be helped to develop and achieve their vision a early as possible so that they gain maximum developmental benefit from vision.

Vision materials are designed to support the development of vision and also
the use of vision to befit general development and learning.

Vision Levels

  • V1 : No perception of light
  • V2 : Aware of light and large reflecting objects (of 12 cm in size and more) within 30cm, but not of V3 or V4 objects
  • V3 : Aware of objects (of 12cm or less) within 30cm, but not V4 items.
  • V4 : Aware of objects (1.2cm in size or less) on a well contrasted table top within 30cm.

Level 4 is not demonstrable even in fully sighted babies until 5-6 months of age, as before this age such small objects do not
catch their interest.

Record of developing vision

  • Is adapted for structured observation by parents and teachers
  • Is not a substitute for formal assessment
  • Practical activities are linked to observations.

Developing vision activity cards – visual promotion

  • Although vision is impaired it can improve over time
  • Vision development can be promoted
  • But this is independent of age for child with visual impairment.

The visual environment and visual materials cards – what are they?

  • Vision provides a child with information they need for every aspect of early development
  • Need to use child's current vision to best advantage to support every aspect of their development
  • The visual environment and visual materials cards help to ensure that developmental activities are carried out in the best visual surroundings for your child, using toys or objects that best suit their current level of vision.
  • This first card introduces four categories or levels of functional vision.

The aims of the Getting Stuck? materials

  • Explore areas at most risk in children with visual impairment
  • Provide some ideas and suggestions about common problem areas
  • Highlight where to go for more help with an aspect of development.

Notes: This is a very important section of the journal.

I can imagine that some parents may well turn to this section after ignoring the journal for a while as they were happy with their child's progress.

‘Sticky areas’ covered in the Getting Stuck? booklet

  • Touch sensitivity
  • Sound sensitivity
  • Practical everyday activities
    • Movement and mobility
    • Eating and feeding
    • Sleeping
  • Language concerns – ‘Echolalia’ or echoing
  • Resistance to adult direction/tantrums
  • Resistance to change
  • Repetitive behaviours
  • Learning, social and communication.

Notes: Any that you would not have included?
Any glaring omissions in your opinion?

Flexible use of the developmental journal

  • OK if families complete all or some of the Record – with or without support from the people who work with them
  • OK if families want to talk about the pages in the Record relevant to their child but not fill in the paperwork
  • OK if families ask (or give permission to) professionals to complete the paperwork on their behalf
  • OK if families want to use it more at some times than others
  • OK if families don't want to use it at all.

Notes: Families can determine their own level of involvement.
It's important that we, as practitioners don't have fixed ideas on the 'best' way.

How does it work in practice? Feedback from piloting

  • Records progress – focuses on achievement; demonstrates a child's ability to learn
  • Provides information about development – in 'bite sized chunks' leading to greater parental understanding of developmental steps
  • Reduces anxiety and restores parent confidence – shows ordinary parenting skills are all they need
  • Gives practical ideas, eg; clearly linked or signposted from developmental goals.
  • Forms the basis for discussion and sharing – parents say they feel a greater sense of control and that their views are valued
  • Supports parental contributions to assessments in both clinics and homes
  • Encourages a shared language with professionals
  • Helps develop new skills in interacting/playing with their child and strengthens emotional bonding
  • Promotes understanding of play as a tool for learning.

Messages from parents using the developmental journal

The journal is a fantastic idea - it is a great tool that has boosted my confidence in my sons ability to learn as well as my ability do the best for him as a mother

The 'Fridge' cards are particularly useful and can be copied and shared with grandparents, other people involved like health visitors and therapists, and child minders so every one is doing the same thing.

As a distillation of good practice, the developmental journal provides us with experience on tap whenever we need it.
Just knowing it is there is reassuring