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

1. 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@york.ac.uk

2. Key issues What questions can we reasonably ask? Research design and methodological issues Project examples Ethical issues

3. 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

4. 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

5. 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

6. 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

7. 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

8. 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

9. 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

10. My communication aid 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

11. 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

12. 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

13. 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

14. 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

15. 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