Seeking the views of children who do not use speech to communicate: cumulative experiences

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Seeking the views of children who do not use
speech to communicate cumulative experiences

• Bryony Beresford
• Social Policy Research Unit
• University of York,
• York. YO10 5DD. UK
• email bab3_at_york.ac.uk

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Key issues

• What questions can we reasonably ask?
• Research design and methodological issues
• Project examples
• Ethical issues

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What questions can we reasonably ask?

• Limited life experiences
• Cognitive impairments
• concrete vs abstract concepts
• ability to self-reflect
• complexity of the task (eg. choices, anticipating
  the future)
• memory
• Language and language development
• understanding of language
• literacy
• Communication skills / access to communication
  aids
• Specific implications of the condition
• example children with autistic spectrum
  disorders

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Developing methods I

• Learning from each other across disciplines and
  professions and population groups
• for example, speech and language therapists,
  teachers, social workers, psychologists, other
  researchers
• about the condition(s)/impairments and how might
  impact on participation in research
• about how they have gone about working directly
  with children /other research participants with
  similar impairments
• The option of working with children/young people
  with unimpaired cognitive / communication
  abilities to start with
• identifying likely issues their lives, the
  context
• developing own confidence
• developing understanding of the issues

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Developing methods II

• The need for a multi-method tool box
• responsive to abilities/needs of children
  participating
• different facilitation tools available
• different methodological approaches
• tailored at the point of the individual
  interview.
• The Mosaic Approach
• The need to collect data from additional sources?
  
• Parents, carers, teachers
• This all takes resources - time, people, skills

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Key attributes of methods

• Highly visual
• Non-reliant on spoken language, reading ability,
  childs communication system but scope to extend
  to this
• Begin at a concrete level but scope to extend to
  more abstract issues
• A means by which information can be checked
  back
• Sensitive to the topic
• Choice for the participant
• The method will generate information revelant to
  the question you are asking
• A system for recording that information

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Project example I Working with children with
severe physical/learning impairments

• The research question
• What are your the desires and aspirations?
• What do you want to change about your life?
• What is good in your life that you want to keep?
• Disabled children with one of four conditions
  degenerative conditions complex health care
  needs autistic spectrum disorders do not use
  speech to communicate because of
  physical/learning impairments

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The work with children who did not use speech to
communicate

• Used existing evidence and interviews with verbal
  children and young people without learning
  difficulties to identify themes/issues
• Included interviews with other informants
• Communication questionnaire completed by parents
• The research tool Talking Mats
• Key issue How to identify preferences or desires
  as opposed to what happens at the moment
• solution generated statements representing
  opposing and ambivalent views, using different
  characters

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(No Transcript)
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Nathan
Sam wants his communication aid to be faster
Nathan wants to be able to use his communication
aid wherever he is
Adam wants his communication aid to be able to
say more things
John wants to have a communication system he can
use without help
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Other considerations

• Managing reliability and level of understanding
• Using practice questions
• Paying attention to/recording the non-verbal
  behaviour children used such as facial expression
  and eye pointing
• Recording a commentary
• Tailoring the mats to make them
  ability-appropriate and relevant for each child
• Prioritising the mats
• Questions behind the mats
• The need for more than one session

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Project example II Evaluation of specialist
mental health services for deaf children

• British Sign Language is a language in its own
  right
• A visual language as opposed to spoken and
  written language
• Low levels of English literacy
• Childrens use of BSL
• Sole language, though varying degrees of
  sophistication
• Sign-supported English
• Bi-lingual
• Oral only
• Consistency across interviews using different
  languages
• Allowing children to participate using preferred
  means of communication
• Childrens view versus parent view
• Switching between languages
• Non-BSL researchers access to the data

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Specific strategies adopted by the team

• Involving deaf researchers throughout the project
• a significant learning experience for hearing
  researchers
• development of information sheets, tools, topic
  guides, etc
• fieldwork
• Hearing researcher took classes in BSL
• Supporting the participation of children in the
  research
• Keeping in touch with young person through text,
  email, MSN
• very familiar and acceptable media for the
  children and young people
• Offering choice re language / who interviews
  interviews
• Highly visual research materials
• Information sheets, letters etc.
• Visual activities within the interview
• Ensuring right setting (lighting, listening
  conditions, background)
• Signed thank you cards
• Highly visual research summary and BSL version of
  research summary

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Working with deaf researchers

• Crucial to the success of the project
• Issues encountered
• Finding deaf researchers skilled at working with
  children
• Location (cost equipment costs)
• Known to research population
• English as a second language for the researchers
• Different views about language/meaning between
  the deaf researchers

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Ethical issues

• Ensuring information provided in childs most
  familiar communication mode/system
• Is informed consent always a realistic
  expectation?
• consent vs assent
• Gate-keeping and coercion
• Being prepared to go away without doing the
  interview
• On-going consent/assent
• Choice/control may be an unfamiliar experience
• Rehearsing strategies
• Non-verbals
• Accessible research findings