University of Edinburgh

Early Diagnosis: Supporting Parents to Support their Child

Presented on Thursday 9 November 2006

Supporting Parents to Support their Child, Part 1

Mary Kean

Structure for the presentations
Introduction to what parents say they want from services
Informed Choice
Early communication

Part 2
Introduction to the DfES programme of Early Support
Examine the Monitoring Protocol for Deaf Babies and Children
Look at families and practitioners view

Newborn Hearing Screening Programme
“Universal hearing screening creates a paradigm shift in the identification process from one that is parent-driven to one that is system driven...

...This shift is a significant change from when parents had time to become suspicious of their child’s hearing status and act on it. Instead, parents are now being acted upon by the medical, professional and public health systems”
Luterman and Kurtzer-White, 1999 In Flexer, C (1994) Facilitating Hearing and Listening in Young Children

The Context...
“The family has the most direct influence on a child
during his early years”

“Being proficient in working with a child does not
necessarily give working
competently with an adult who is closely and
emotionally involved with that child”
SERSEN, “Working Positively with Parents”, 2002

Key experiences for parents

  • Finding out about a child’s disability or condition
  • Getting a full diagnosis
  • Establishing contact with services
  • Provision of childcare and early education
    Audit Commission, 2003

What do parents of deaf children say they want?

  • Early accurate confirmation of hearing loss in an appropriate setting
  • Quality time with professionals to understand the implications of the diagnosis
  • Respect for the child and the child’s family, with understanding of individual need

What do parents of deaf children say they want?

  • Provision of clear accessible and balanced information with details of self-help support groups
  • Well trained and qualified staff who are deaf aware, who have empathy and understanding of child and family and in whom they have confidence
  • A positive and encouraging attitude towards deafness

Towards making informed choices and decisions…

“ Informed Choice means that families can make knowledgeable and views. It is based on access to comprehensive, unbiased and evidence-based information, about the full range of options.”
Ref: ES Informed Choice, families and deaf children, Professionals handbook, 2006

  • Amplification
  • Habilitation
  • Investigations
  • Communication
  • Support

What do parents of deaf children say they want?

  • Inclusion and partnership in the planning for their child
  • Co-ordination between professionals to eliminate conflict and swamping
  • To be listened to – and to be heard
  • To retain ownership of their child
  • The truth, the facts, and what isn’t known as well as what is

Development in the first months of life…

  • Newborn babies have more neurones than adults
  • Bring innate “knowledge”
  • Explore actively through all their senses
  • ARE the scientist in the crib!

Very early understanding of people

  • Mimic facial expressions within hours of birth
  • Must have some understanding of what they see and what they feel as they mimic
  • Recognise that faces are like their own
    Gopnik, Meltzoff, Kuhl,1999
  • Babies are tuned to people
  • Babies spontaneously co-ordinate expressions, gestures and voices with the expressions , gestures and voices around them
  • Early understanding that humans are not simply skin covered sacks!

Research shows:

Evidence form neural imaging and brain research...

  • The haircells with the cochlea are arranged in a specific way to perceive sound, low frequency tones at the apex and high frequency at the basal turn: TONOTOPIC organisation
  • At the level of the cortex there are 21 areas that demonstrate tonotopic organisation
  • Infants can demonstrate auditory perception at birth
  • Cochlea fully functional @26 weeks gestation
  • Auditory abilities do not demonstrate adult like perception until around 13 yrs of age
  • Experience within first year is important in keeping neurons firing and stimulating auditory areas of the brain

Rhythm and temporal organisation

  • Evidence that both rhythm and temporal patterning promote development of neuronal connections
  • Speech and sign both have these qualities
  • Failure to stimulate the auditory pathways will however result in neuronal deletion

Evidence of brain research…

  • Neurons laid down, sculpted and reinforced by regular use
  • If not activated with wither or fail to develop
  • By age of 3 yrs more neural connections made than will ever be used
  • Brain at this stage is highly malleable

In the first 18 months of life

  • We used to look for a head turn response at 8-9 months
  • Co-operative hearing test by 18 months
  • Assume that we had lost a lot of time and have to somehow “ catch up”
  • Research demonstrates that early sensitive intervention is associated with typical developmental patterns.
  • Average age of identification and fitting 9 weeks
    Reference: Yoshingaga-Itano, C, Sedey, AL, Coulter, DK, and Mehl, AL (1998). Language of early-and later-identified children with hearing loss. Pediatrics 102:1161-1171.)


  • Parents like to be told that they are ‘experts’ in their own children
  • But, we can’t expect them to be experts in deafness
  • To enable parents to trust what we say – need to back it up with evidence/research and not just anecdotes
  • Conundrum – we want parents to do what they would normally do
  • But by giving a child a label – disables them in they believe in and trust
  • Choices made do not have to be set in stone
  • For families and parents they make the best choice at the time, it may change later
  • What is their ‘vision’ for their child?