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

cumulative experiences

Bryony BeresfordSocial Policy Research Unit

University of York, York. YO10 5DD. UKemail: bab3@york.ac.uk

Key issues

What questions can we reasonably ask?

Research design and methodological issues

Project examples

Ethical issues

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

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

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

Key attributes of methods

Highly visual

Non-reliant on spoken language, reading ability, child’s 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

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

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

How do I want my doctor to talk to me

Lucy Julie Ayesha

Lucy wants her doctor to talk to her in a way she understands

Julie doesn’t want her doctor to talk to her

Ayesha doesn’t mind

My communication aid

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

Nathan

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

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 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

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

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

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 On-going consent/assent

Choice/control may be an unfamiliar experience Rehearsing strategies Non-verbals

Accessible research findings