Transcript Disabled children and participation: Messages from

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: [email protected]
Key issues
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What questions can we reasonably ask?
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Research design and methodological issues
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Project examples
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Ethical issues
What questions can we reasonably ask?
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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
Developing methods: I
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Learning from each other: across disciplines and
professions and population groups
 for example, speech and language therapists, teachers, social
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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
Developing methods: II
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The need for a multi-method tool box
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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
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The need to collect data from additional sources?
 Parents, carers, teachers
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This all takes resources - time, people, skills
Key attributes of methods
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Highly visual
Non-reliant on spoken language, reading ability,
child’s communication system but scope to extend to
this
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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
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Choice for the participant
The method will generate information revelant to the
question you are asking
A system for recording that information
Project example I: Working with children
with severe physical/learning impairments
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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?
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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
The work with children who did
not use speech to communicate
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Used existing evidence and interviews with verbal
children and young people without learning difficulties
to identify themes/issues
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Included interviews with ‘other informants’
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Communication questionnaire completed by parents
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The research tool: “Talking Mats”
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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
How do I want my doctor to
talk to me
Lucy
Lucy wants her doctor to
talk to her in a way she
understands
Julie
Julie doesn’t want
her doctor to talk to
her
Ayesha
Ayesha doesn’t mind
My communication aid
Nathan
Sam wants his
communication aid
to be faster
Adam wants his
communication aid
to be able to say
more things
Nathan wants to
be able to use his
communication
aid wherever he is
John wants to have a
communication system he
can use without help
Other considerations
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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
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
 Children’s use of BSL
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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
 Children’s view versus parent view
 Switching between languages
 Non-BSL researcher’s access to the data
Specific strategies adopted by the team
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Involving deaf researchers throughout the project
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Hearing researcher took classes in BSL
Supporting the participation of children in the research
 a significant learning experience for hearing researchers
 …development of information sheets, tools, topic guides, etc
 …fieldwork
 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
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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
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
Ethical issues
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Ensuring information provided in child’s 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
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On-going consent/assent
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Accessible research findings
 Choice/control may be an unfamiliar experience
 Rehearsing strategies
 Non-verbals