Practitioner-Led Research Early Support Final Report

Practitioner-led Research Early Support - Final Project Report (ref 034)

2007-2008
Celebrating success across the children’s workforce

Working with the Early Support Developmental Journal for babies and children with visual impairment

Practitioner approaches that lead to better outcomes for children and families

Julie Jennings, RNIB National Development Officer: Early Years

Introduction

When a baby is first diagnosed with a visual impairment, it is vital that the family gets support as early as possible so that they can encourage the early play, development and learning of their child.

Early Support is the central government mechanism to improve services for young disabled children from birth to five years and their families. The Early Support Developmental Journal for babies and children with visual impairment (Appendix 1), developed by members of the Developmental Vision Team at Great Ormond Street Hospital/Institute of Child Health in consultation with families and practitioners, was launched in September 2006. This provides a tool to help families track and understand the development of their young children in partnership with the professionals who work with them. It has a key part to play in raising awareness of the critical role that vision plays in early child development and in encouraging earlier referral of visual disorders so that babies and families get the kind of support that they want as soon as possible.

This research project adds to the limited body of knowledge about what works for children, families and practitioners using the Early Support Developmental Journal for babies and children with visual impairment (the Journal).

Aims of the research

In liaison with other partners, RNIB is exploring the issue of early identification, referral and support for young children with a visual impairment through the Journal.

The aim of this research was to capture

Innovative ways of working with families

Carers' views on the benefits and challenges of using the Journal, and partnership working in particular

Outcomes for children, particularly in the area of social interaction with carers

Process

RNIB has been involved in the development of the Early Support materials from the start of the programme and has been working on the Journal with local authority visual impairment (LA VI) services that support young children with a visual impairment, and their families.

The national RNIB/VIEW Early Years Focus Group (EYFG) is a unique group in that it brings together local authority qualified teachers of visually impaired children (QTVIs) and teaching assistants in England. It meets three times a year to share good practice in working with children with a visual impairment from birth to five years, and their families, with an average attendance of 40 representatives from local authorities in England. The EYFG has been involved as a consultation group in the development of the emerging Journal materials.

Many of the QTVIs in the EYFG are leading the way in using the Journal in family focussed practice. The research question was generated by members of the EYFG and a case study approach to the research was agreed using five local authorities who have embedded the Journal in their support to families.

The project was launched at the EYFG conference:

'Focus on Foundations: inclusive practice in the Early Years Foundation Stage for young children with a visual impairment' , in October 2007 in Peterborough and volunteers were enlisted.

A question framework (Appendix 2) was devised with the support of RNIB's research department. This provided a standardized format for gathering qualitative information from parents and practitioners. Each of the five LA VI services approached two families (in one case three families) that they are currently working with through the Journal to gain their views using the question framework as part of their routine home visiting.

A coding frame was constructed based on the questions. To ensure inter-coder reliability, the first stage of the analysis was carried out separately by each of the two coders and the results compared. The information gathered through the question frameworks was collated into an initial draft report. This was reviewed by the LA VI services and parents who participated. It was also shared with the group who developed the Journal for Early Support. This group continues to meet to monitor and evaluate the implementation of the Journal.

Supporting reading

Early intervention is a consistent key theme of central government policy. Several recent and current developments provide a fertile context for work in early intervention:

Validations of early intervention for specific groups of children
Government interest in and funding of early intervention and early years provision
DfES/DH (2003) Guidance Together from the Start, and Developing Early Intervention/Support Services for Deaf Children and their Families
The Early Support Programme (DfES/DH 2003) that has piloted new ways of working with young disabled children and their families
The implementation of Every Child Matters: Change for Children (DfES 2003) and the Children Act 2004 through the development of children’s trusts, children’s centres and other new ways of delivering services to children and families, including establishing a Common Assessment Framework
A ten year strategy for special educational needs outlined in Removing Barriers to Achievement (DfES 2004) which highlights early intervention as one of the key priorities
A National Service Framework for Children (DH 2004) including a section on disabled children which sets standards for early intervention and promoting development across the NHS and social care
A strategy for disabled people in Improving the Life Chances of Disabled People (Prime Minister’s Strategy Unit 2005) which reinforces the benefits of early intervention to improve life chances.

As part of the National Screening Committee Child Health Sub-Group Report on Vision Screening (Hall and Elliman 2005), recommendations were made for screening for visual disorders: all newborn and 6-8 week old babies should be examined as part of the routine review, and a specialist neonatal ophthalmic examination is recommended for babies at a known higher risk of visual disorders, such as very low birth weight and pre-term babies or babies with a known hearing impairment.

In relation to early support for babies identified with a visual impairment, and their families, research has shown the need for specialist early intervention (Cole-Hamilton, 1996 and Keil, 2005). Indeed, recommendation 11 of the RNIB Early Excellence Partnership Project evaluation report states

Blind and partially sighted children and their families to have parity with deaf and hearing impaired children in terms of the early intervention and support that is required by the neonatal hearing screening programme. (Keil, 2005)

Dale and Sonksen (2002) have argued that it may be possible to minimize the risk of developmental setback that has been identified in some young children with profound visual impairment if babies with a visual impairment are identified early and intensive health and education developmental support is provided in the first two years of life, including visual promotion (for form vision).

However, numbers of children are low: there are estimated to be only 3270 children with a visual impairment, including those with additional needs, under the age of five years in England (Keil 2003). Epidemiological research indicates that children with the most severe levels of visual impairment are more likely to:

have been premature
be of South Asian origin
have associated neurological problems
have a condition which is not treatable
have had their condition from very early life (identified in the first year)
have similarly affected siblings
be from areas of disadvantage. (Rahi and Cable, 2003)

This makes personalized support for families more complex. LA VI support services are normally best placed to support babies and young children with visual impairment, and their families, in both home and settings. However, some services have restricted resources, variable specialist knowledge of early child development, and are at different stages in their use of the Journal. In addition, taking into account the varying contexts outlined by Rahi and Cable (above), QTVIs are likely to have limited experience of a broad range of very young children with visual impairment.

Yet onset of visual impairment at an early age is associated with higher educational achievement which has been deemed to reflect the positive impact of early intervention strategies on educational outcome (Network 1000 report 2006), reinforcing the importance of this early support for families.

This small scale pilot study provides a snap shot of 'best practice' that is developing in the field of early support to young children with visual impairment, and their families.

Findings

Family context

The variability and diversity of the children and families in the study, in terms of child characteristics and family background, were evident from the information provided in the responses to the question framework. These case studies are an illustration of the very wide range of families that LA VI services are supporting and reflect the range of contexts for use of any standardized materials produced to underpin this support.

Age of child

The average age of the children, at the time of the research, was 21 months with the youngest 11 months and the oldest 2 years and 8 months.

Age of diagnosis

Four of the children were diagnosed at birth, with an average age of diagnosis of 5 months. There was no information for one child.

Gender

Four of the children were girls, six were boys, and in one case the gender was not stated.

Additional needs

Four of the children had additional needs; the other seven children had no additional needs or it was unknown.

Conditions

The children had a range of eye and other conditions:

oculo-cutaneous albinism
left homonymous hemianopia, left convergent squint, intermittent right convergent squint, right occipital lobe damage, congenital hydrocephalus with shunt
Lebers congenital amaurosis, premature at 33 weeks
bi-lateral retinal dysplasia, localized cataract in right eye, totally blind, diabetes insipidus and multiple hormone deficiencies with developmental delay, especially physical
congenital left anophthalmia and right microphthalmia
septo-optic dysplasia
congenital bilateral optic hypoplasia
bilateral cataracts, Cockaynes Syndrome
glaucoma
optic nerve hypoplasia, some unexplained behaviours
oculo-cutaneous albinism

Ethnicity

Eight of the children were described as White British, one British, one dual heritage, and one was not stated.

Siblings

Five of the children were only children, three were the youngest of three, two the youngest of two, and one was not stated. One of the children had a sibling with the same condition.

Adults involved with child

Six children were part of an extended family with both parents, two families mentioned mother and father only, one was a foster family, and two were single parents, one of whom was 18 years old.

2.Responses to key questions

1.In every case, the QTVI had introduced the Journal to the family.

2.In every case, the family held the Journal records.

3.The length of time the Journal had been used varied from 5 - 14 months, with an average of 10 months. In three cases, the Journal had been introduced before being used regularly, particularly if the referral was made before a holiday when support services would not be available.

Visits took place either fortnightly or weekly, and in one case twice a week. Seven families had no support during holidays, three had some support if not regular visits, and there was no comment in one case. Visits were mainly to the family home although one child was visited both in home and early years setting.

The long summer break in particular was seen as a problem by three families in terms of general support (although the LA VI service team leader was available for emergencies), but it did not affect the way the Journal was used. One practitioner felt that there was some catching up to be done in September, but one parent was very happy with the holiday arrangement and it was seen in a positive way for one child:

‘It sometimes helps the child to have a break and then be more interested when she comes back to things.’ (Parent)

How often the Journal was filled in varied: it was completed frequently by one family, monthly by three families, half termly by three, every three months by three and termly by one.

In nine cases, the practitioner and parent filled it in together, and two mothers filled it in alone following discussion with the QTVI.

Both QTVI and parents kept a record of the Journal: in all cases, the family kept the original record. Strategies for practitioners to keep a duplicate record varied:

photocopies of the Journal were taken by one service
a specially designed Journal record booklet was produced by one VI service
carbonised home visit sheets were filled in by one service
the Journal Profile was completed by two services (one in conjunction with the home visit sheets)
one service had tried photocopies, but felt they did not look very professional, and now held a duplicate set (downloaded from the Early Support website) of the specific sections that the family were working on.

9. Only two of the families had used the Oregon materials before

being introduced to the Journal. Of these, one parent thought that Oregon

was simpler and more straightforward, but the other preferred the Journal

because it was more comprehensive.

For further discussion about the issues raised regarding the use of the Journal, see the following section.

Implications for the Professional Practice and Development of Practitioners using the Journal with Families

What worked well…

… for the parent

'being able to just look at it and know my baby is not the only one.'

'If this hadn't been here I would have been comparing him to anyone else who could see. It's really helped to know what he should be doing.'

'It has been good to use the Journal to look back and see how much he has progressed - often in leaps!'

having targets and appropriate developmental milestones to refer to
having evidence of achievements and sharing progress
identifying areas where more help is needed
benefits of ideas and suggestions for activities
better understanding of the child’s needs and those issues common to children with a visual impairment

… for the practitioner

'Journal gives parents knowledge about what to expect about their child’s development and confidence to deal with it.'

'Seeing Mum's confidence grow as she became more and more expert in observing her child and knowing how to teach him things.'

'an excellent tool for collaborative working with the family.'

giving parent confidence and knowledge
providing a framework and focus for planning
highlighting and identifying areas where more help is needed
facilitating partnership and collaborative working with parents, agreeing priorities
providing activities for the parent when the QTVI is not there
setting the context for understanding the holistic nature of child development
providing evidence and a record of the child’s progress and achievements.

… for the child (in the parent’s view)

'It is reassuring to have the information on hand if we feel B is not benefitting from something which maybe his peers are, and we can see how to help him.'

providing a source of activities and resources to stimulate and help the child

directly assisting the child’s progress

informing and skilling mum or parents who can then help their child, independent of the QTVI

gaining involvement of another professional (physio).

… for the child (in the practitioner’s view)

'Having a capable and confident mother who understands how her child learns and who is able to interact with him and teach him.'

'Mum in greater control, more confident with her child.'

increasing confidence and skills of parent
giving a greater and wider range of activities and ideas for play
providing evidence of need, used as a means of accessing other services or to share with parents
providing a framework for observation and for planning and directing input.

What did not work well…

… for the parent

'only as good as time spent on it and quality of discussion between parents and professionals using it.'