Informed Choice, families and deaf children

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Informed Choice, families and deaf children

• Gwen Carr
• (Alys Young, Wendy McCracken, Ros Hunt
• Anne-Marie Hall, Amy Skipp, Helen Tattersall)

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Choice

• Everyone makes choices
• Making choices can be a process not a one-off
  occasion
• What makes a good choice?

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What is Informed Choice?

• Information?
• Choice?
• Knowledge?
• A much more complex
• concept

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Context

• Universal Newborn Hearing Screening fully
  implemented in England
• Growing government focus on rights and choice
• Wide regional variation in service provision and
  quality
• Concerns over bias and incomplete information
  given to families
• Early Support initiative

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Aims of the project

• To undertake research which deepens understanding
  in the context of deaf children and families
• To produce guidance for professionals theory
  and practical support
• To produce empowering guidance for parents to
  help them make the best choices for them

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Process

• Literature review
• Consultation
• Product development
• Trialling

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Literature review

• Very little in deaf education
• Wider scope, for example
• Smoking
• Cancer
• Childbirth
• Metasynthesis conceptual not data driven

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Evidence from sites

• 3 Areas
• Different geography (urban and rural),
  structures, demographics
• Multiagency partnership consultations
• Parent consultations
• Exploring issues and areas of concern
• Identifying Drivers and Barriers
• Strategic consultations

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What is Informed Choice?

• Information?
• Choice?
• Knowledge?
• A much more complex
• concept

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Eating Out . . . . (Ros Hunt)

• Deciding on the venue
• Whats on the menu?
• How do you make your choices?
• Do you have restrictions?
• Information, Choice, Knowledge

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Eating Out . . . . (Ros Hunt)

• Can you have what you want?
• Does it matter what others want?
• Are you choosing for someone else?
• Can your choices be met?
• Information, Choice, Knowledge

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Back to the research . . . .

• 8 themes
• 15 underpinning issues

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Themes

• Audiology
• Health
• Early education
• Social care
• Multi-agency working
• Family support (e.g. parent to parent)
• Communication
• Information provision

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Underpinning Issues

• Information, knowledge
• and understanding
• Availability
• Access to availability

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Underpinning Issues

• Parents vary in their ability to make informed
  choices
• Informed choice in families terms
• Does Informed Choice mean we offer the same to
  everyone?

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Underpinning Issues

• Are all issues open to Informed Choice?
• Individual choices and the effects on others
  choices
• Parents as experts

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Underpinning Issues

• Informed Choice is an active process
• Equality of resourcing
• Operational constraints

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Underpinning Issues

• Resources strategy / philosophy
• Training
• Attitudes and values

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Parents vary in their ability to make informed
choices

• What parents have to have,
• to have informed choice

c
d
a
b
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Informed Choice in Families terms

• Informed choice for me must take into account my
  familys priorities, culture, interests and
  values

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Attitudes and values

• Its not what you say, its the way that you say
  it

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Products

• Professional handbook
• How to use
• Underpinning issues
• What parents and
• professionals told us
• Practical examples
• Resources
• Principles

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Products

• Parent handbook
• Case study based
• Exploring issues
• Questions to ask

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Definition

• Informed Choice means that families can make
  knowledgeable decisions, which reflect their own
  cultures, values and views. This should be based
  on full access to comprehensive, unbiased and
  evidence based information, about the full range
  of options

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Definition

• An Informed Choice approach to service provision
  is one in which
• Service providers adopt open and flexible
  policies that effectively endorse a range of
  possibilities
• Services and professionals make no value
  judgements about one option over another and this
  stance is reflected in their strategic decision
  making and resourcing
• Families are supported to reach decisions in ways
  that are sensitive to their individual strengths,
  resources, needs and experience
• An informed choice is not seen as a one off
  decision but as an ongoing process.

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Further information

• Informed choice, deaf children and families
  underpinning ideas and project development
• www.investigacion-psicopedagogica.org/revista/
• Informed choice and deaf children Underpinning
  concepts and enduring challenges 
• Journal of Deaf Studies and Deaf Education
• www.earlysupport.org.uk
• www.ndcs.org.uk

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• Thank you . . .
• Questions ?
• Email gwen.carr_at_manchester.ac.uk
• MRC Hearing Communication Group
• Humanities Building
• 3rd Floor, A Block
• Oxford Road
• University of Manchester
• Manchester M13 9PL
• United Kingdom