University of Edinburgh

Informed Choice from Theory into Practice

Presented on Tuesday 2 March 2010

Working in an Informed Choice Framework

Gwen Carr, Alys Young


  • Look at the origins of why IC became:
    - a policy issue
    - an approach for families
    - a challenge for practitioners
    - and a headache for researchers!
  • Work experientially through an informed choice framework together
  • Consider in-depth
    - a range of underpinning issues
    - and their implications for service delivery and practice
    - from a range of perspectives

Families and choice

  • Enduring experience - choice and decision-making
  • Intensified by being in unfamiliar territory
  • Imposed set of relevancies
  • Complexity of deafness

Emergence of IC agenda

  • Quality and nature of information
  • Equitable access to range of possibilities
  • Questioning of expert model (not expertise per se) - participation and rights
  • More pressing issue much earlier
  • Better choices for better outcomes?

Aims of the Project

  • To undertake research which deepends understanding in the context of deaf children and families
  • To produce guidance for prefessionals - theory and practical support
  • To produce empowering guidance for parents

Problem - what do we mean by informed choice?

  • Definitions resultant from what it is not
  • Restricted in scope (only communication)
  • Simplistic in focus (information production)
  • Treated as a 'belief' or an 'outcome' not a process
  • Over-contextualised in the context of deafness
  • Are we in danger of creating a 'problem' we did not know we had by virtue of inventing a 'solution'?


  • Literature review
  • Consultation
  • Product development
  • Trialling

Evidence from Sites

  • 3 areas - Different geography (urban and rural), structures, demographics
  • Multi-agency partnership and strategic consultations
  • Parent consultations

Focus of data collection

  • What was understood by informed choice
  • Examples of how experienced, where not experienced
  • Barriers and facilitators of informed choice as way of practice (strategic, organisational, front line)
  • Consultation on how 'guidance should be provided'

Information, knowledge and understanding

  • Key relationship is between understanding and choice
  • Risks, benefits, consequences


  • Provision that is possible versus provision actually available
  • Avoiding partiality or bias
  • If not available, could/should it be?
    And if so, how?

Access to availability

  • Diverse barriers to access
  • Supporting access to choice just as important as offering it

Parents vary in their ability to make informed choices

  • Confidence, skills, experience
  • Empowering confidence is crucial

Informed choice in Families' terms

  • Belief systems
  • Cultures
  • Social circumstances

Does informed choice mean we offer the same to everyone?

  • Not just equality in what is offered
  • Routes to informed choice require different approaches

Are all issues open to informed choice?

  • Complex considerations and ethical dilemmas
  • Rights and responsibilities
  • Preference versus need

Individual choices and the effects on others' choices

  • In the context of limited resources/skills
  • Tension - individual versus wider
  • Consequences

Parents as experts

  • Not static
  • Development and promotion

Informed choice is an active process

  • Evolving framework
  • Choices reconsidered over time

Equality of resourcing

  • Flexible response to resources
  • Resource-led versus needs-led provision
  • Equal opportunity may require unequal resource allocation

Operational constraints

  • The real world - staff, resources, training, skills
  • 'Out-of-the-box' thinking, creative partnerships

Resource strategy/philosophy

  • Strategic commitment and implications of value
  • Leadership and influence


  • Oils the weels of informed choice
  • Translating theory into practice: a 'menu' approach (Hunt, R & Carr, G)