Developing Best Practices for Consultation & Research with Deafblind People

1. Working with Deafblind People to Develop a Good Practice Approach to Consultation and Research Activities Alana Roy PhD Candidate Professor Keith McVilly Professor Beth Crisp

2. We will cover • Study 1- Elite interviews • Study 2- Deafblind World Café • Study 3- Deafblind Professional World Café • Study 4 & 5- Interpreter survey/single multiple case studies

3. Literature review • Methodological challenges • Small samples • Diverse population • Self-report measures, case studies and professional observations • Lack of co-production • Lack of Deafblind culturally valid, reliable and culturally fair research methods

4. Study 1: Elite interviews with experts in the field of Deafblindness The aim of this study is to investigate good practice approach to consultation and research activities for Deafblind people Background: As the precursor to a program of research to investigate and test good practice in this field, a group of professionals were consulted.   Method:  Data from semi-structured interviews with 8 professionals in the field of Deafblindness were analyzed using inductive thematic analysis. 

5. Study 1 Professionals contributed to the first phase of the development a Deafblind research methodology, which was trialed at an event titled “The Deafblind World Café” for participants in Melbourne. 2 x O&M 2 x Technology experts 2x Interpreters 2 x Events coordinators 1 x World Café expert USA

6. Themes from the Elite Interviews • Deafblind subculture • Deafblind World view • Awareness of power • Specialist skills to connect • Deafblind research methodology

7. World Café method • World Café Method begain in 1995 by Juanita Brown and David Isaacs USA • Three rounds of questions • After each round people will get up and move to a different table • One person will stay at the table and tell the next group of people what was said in the last round

8. Principals of World Cafe • Set the context • Create a hospitable place • Explore questions that matter • Encourage everyone's contribution • Connect diverse perspectives • Listen together for patterns and insight • Share collective discoveries

9. Appreciative Inquiry • Try not to focus on negatives • Imagine what it would look like if it worked? • In a group am I loud or quiet? • Everyone perspective is important tactile, sign, spoken

10. World Café Etiquette

11. Study 2 Deafblind World Cafe Aim: This study investigated good practice approaches to consultation and research activities involving deafblind people. Method: Appreciative inquiry and World Café was used to to generate patterns of insight and collective discoveries from N=15 Deafblind participants from Melbourne, Australia with mixed communication including Auslan, tactile sign language and spoken English. Data from The Deafblind World Café were analysed using inductive thematic analysis and the constant comparative method.

12. Deafblind World CaféHow was the method adapted? • All resources in Auslan, subtitles, plain language, youtube • 5 hour research day • Name badge with your preferred communication style(s) • Small group discussion DB mixed communication • A summary was shared at the start of each round • Notes takers, interpreters and volunteers

13. Deafblind World Café tool kit • YouTube resources (Auslan, subtitle and plain language) • Black banners • Black table cloth • Sensory gift bag • Tactile tables • Color contrast cutlery • Tables set up safely

14. Participant demographics • Inclusion adults with Deafblindness in Victoria Australia • 14 clients • 2 male & 12 female • AUSLAN 5 • ORAL 6 • TACTILE 3 • 3 volunteers, 4 note takers, 9 interpreters

15. Challenges • This method had never been trialed with this community • I have never attended a World Café • Major funding and interpreting issues • Communication break down between agencies • Not enough interpreters (some prepared others were not) • Assessable resources, videos and translating is expensive

16. Challenges • The research questions were too complex and too similar • Difficult for clients to consider appreciative inquiry e.g. positive thinking • Clients reluctant to share their options (personalities, historical context) • Client unfamiliar with research and “bigger picture” which needed to be explained in more depth

17. Personal Wellbeing Index (Cummins, et al 2013)How satisfied have you been with life over the past few weeks? On a scale of 0 to 10; where 0 = “No satisfaction at all”, and 10 = “Completely satisfied”; How satisfied have you been with your …….Item Rating (0 to 10)0. Life as a whole 1. Standard of living 2. Health 3. What you are achieving in life 4. Personal relationships 5. Feelings about how safe you are 6. Feelings about being part of your community 7. Future security 8. Spirituality or religion Total of Items 1 to 8 Mean of Items 1 to 8

18. Numbered or categorized scales • Surveys and assessments using numbers and scales are confusing and had little meaning for participants • Complex concepts needed unpacking e.g. “what is spirituality?” • Suggestions e.g. tools with large photograph scale, braille, larger text, zoom in functions • Have a few trial test items to help familiarizes DB with the scale before scored items

19. Numbered or categories scales • Design a set of key terms and concepts • Spend considerable time ’setting up concepts’ prior to scale or survey • Include opportunities for face to face discussion of the scale as the scale was perceived as limited.

20. World Café as a methodology Deafblind suggestions • Participants suggested: • Considerable time setting up Key terms and concepts set up first • Research questions with specific examples, scenarios • Trials questions to get comfortable • More interpreters and volunteers • Facilitator at each table • Potential for 3 separate rooms and rotate rooms/tables ( less noise and distraction) • More staff to help deliver food and drink “café style”

21. Aim of study 3 This study investigated good practice approaches to consultation and research activities involving professionals in the field of Deafblindness Method: Working from the perspective of appreciate inquiry, a qualitative research methodology called The World Café was used to generate patterns of insight and generate consensus from N=15 professionals in the field of Deafblindness with mixed communication including Auslan, visual frame sign language and spoken English. Data from The World Café were analysed using inductive thematic analysis

22. Deafblind Professionals World Cafe • Purpose: Working with professionals in the field of Deafblindness to develop a good practice approach to consultation and research activities • 18 years and older • professional in the deafblind service sector • N= 15, (11 female, 4 male). • Diverse range of professionals • 3 x had DB ( visual frame, English and bi-lingual) • 4 x Deaf participants who utalised Auslan • 8 x hearing and sighted but used Auslan

23. Deafblind Professionals World Cafe • Procedure: • The Deafblind participants were asked a range of questions on the times that they had been asked their opinions about policies, procedures and services • They were asked to view the Cummins Wellbeing Index (2013 ) (a 7 item standardised measure of subjective wellbeing) and consider other times that they had been asked to use scales, surveys and tools with numbers and categories. • The Deafblind professionals listened to the results of the Deafblind World Café and were given an opportunity to respond to the Deafblind community results

24. Deafblind Professionals World Caféresults

25. Specific adjustments for DB WC need to be made e.g. separate rooms, facilitators, significant time setting up research context and key terms/concepts • World café methodology may be a useful qualitative methodology for obtaining views and options of Deafblind community

26. Good Practice in Sign-language interpretation for people who are Deafblind Purpose: This study examined good practice in sign language interpretation for people who are Deafblind with a purposive sample of qualified Auslan Interpreters from Melbourne, Australia. Method: Data was collected from two separate but interrelated Auslan sign language interpreter studies. 6 Auslan interpreters participated in a Deafblind consumer research event and 4 Auslan interpreters participated at a Deafblind professional’s research event. Auslan interpreters were asked to patriciate in a Auslan interpreting preparation intervention which included video, written, and verbal preparation resources. To evaluate the intervention, a multiple single-case design was implemented with 10 Auslan interpreters.

27. Good Practice in Sign-language Interpretation for People who are DeafblindStudy 4 • Procedure • Pre-event training for interpreter’s study 1 • 6 professional interpreters watched and read a resource pack (e.g. research Q’s for the DB WC • The research questions were translated by a specialist Auslan translator. • The questions were produced in a video by a native Auslan user and an additional tactile resource by a • Deafblind tactile and haptics expert.

28. Good Practice in Sign-language Interpretation for People who are DeafblindStudy 5 • Both videos utilised a “literal translation form from English into Auslan” and refrained from providing too many examples or unpacking the consent of the research questions. • The interpreters were asked to watch these videos and practice the signing of the research questions; in preparation for a Deafblind interpreting event. • The interpreters were asked to watch these videos and practice the signing of the research questions; in preparation for the and interpreting at a Deafblind research event. • After the Deafblind research event, the interpreters participated in a semi -structured on line survey which was provided in English and Auslan versions.

29. Good Practice in Sign-language Interpretation for people who are DeafblindStudy 5 • Onsite training for interpreter’s • 4 professional interpreters were asked to watch a video together, on-site, in a 1 hour interpreting briefing session prior to the commencement of a Deafblind professional’s research event. • The Auslan video utilised a level 3hearing Auslan interpreter and included information about the format of the research day, including key terminology and all the research questions. • The interpreters attended the Deafblind professionals research event. • After this event, the interpreters participated in a semi -structured on line survey which was provided in English and Auslan versions.

30. Interpreter on line survey • Post-event on-line survey • Interpreters completed a semi- structured on line survey (in Auslan or written format) to evaluate the interventions and World Café interpreting (consumer and professionals). • In your opinion, how helpful was the video? [SCALE: 0 to 10]; How many times did you practice; and how long did this take? • In your opinion, on the day of the World Café, how similar was your signing of the set of research questions to that of the Auslan video? • In your opinion, how well do you think the Deafblind participants understood your delivery of the set of research questions? [SCALE: 0 to 10].

31. Interpreter demographics • N=9 participants • 2 female, 7 male. • 3 Deaf interpreters 6 hearing • 7 completed survey, 1 did not complete, 1 partial complete • Years of experience average 13

32. Examples of some of the questions • How helpful was the video? • How prepared did you feel to deliver the research questions? • How similar was your signing of the set of research questions to that of the Auslan video? • How well do you think the Deafblind participants understood your delivery of the research questions?

33. Interpreter results Study 1 • Each interpreter will interpreter the questions differently depending on client needs • Ask participants for their personal experiences and build on this • Too many changes to interpreting/ required flexibility • There was no facilitator which was challenging • More information about group dynamics

34. Interpreter results study 1 • Needed clarity of “bigger picture of research” • Set up context and key terms first • Provide examples or scenarios • Clear, blunt and simple language • Short questions with no a,b,c • Time and space between questions • Do not have multiple language requirements on one table

35. Interpreter results study 1 • All visual frame, all tactile and all talking on different tables is easier communication • Note takers were a positive. Provide clear instructions regarding roles and expectations e.g. one note taker tried to get interpreter to take notes. • Facilitator on each table

36. Interpreter results study 1 • “I had to change the level of registry to ensure that they understood the question. This required patience and time and be more in tuned with their capacity to express their ideas” . • “One of the participants told me that she felt that this whole process was "way over my head and it is making me feel that I am really stupid". • You can do as much preparation as there is possible but in my experience with deafblind, it rarely goes to plan. So you can have the foundation of prep but it's important to be flexible in these situations. We were given the goal, the questions and the explanation of why. That was very useful.

37. Interpreter results study 2 • Specific adaptation: • "ask participants for examples and build on that experience”. • “been able to do my job and unpack the questions”. • What might have assisted you to prepare for and deliver the research questions on the day of the World Café? • “Ready made examples for the deaf audience to identify the meaning of the questions. I had to make up examples, but I am sure standardised examples could be produced by the researcher.” • Deafblind participants to participate to the optimum, they responded with: • “Perhaps practicing the signs as a group. It's one thing to view and observe, another to practice the production of signs.”

38. Interpreter results study 2

39. Summary of interpreter studies • Researchers could consider preparation packs that include • Small working group of Deaf, Deafblind people and interpreters to design some standardized examples and scenarios (mindful of leading) • Key questions, terms, ideas, signs in tactile and Auslan visual frame with native Auslan users • Written versions • Disseminated prior to the event • Viewed and discussed prior to the event • Practiced together and critically reviewed as a group prior to the event • Full description of clients • Well matched interpreters.

40. Summary of all five studies

41. Agreement between interpreters and Deafblind • Research questions were too difficult • Needed examples, set up scenarios, terms of reference and unpacking of key concepts prior to the research questions. • More volunteers, interpreters and table facilitators.

42. Differences between interpreter and Deafblind • Deafblind participants appeared to want to participate in small multi group discussions with mixed communications. • The data suggested that they wanted to improve support and access to this methodology

43. Challenges of appreciative inquiry • Accidental paternalistic attitudes e.g. some interpreters suggested one big group facilitated by Alana would have illicit more answers and similar understanding of the questions • Multi group mixed communication discussions may be hard but should be encouraged • Many professionals may not work from an positive inquiry, positive psychological frame work • Overwhelming good feedback from clients although it was a very challenging day • Observations more negative feedback from professionals

44. The positives “It was very interesting” “I really enjoyed the day. The questions were hard, but thinking of the answers jogged my brain and I thought long and hard about things’ S “I enjoyed the groups, interesting, want more in the future”.S “Its wonderful to see work being done like this in the Deafblind community” VF “so interesting to see different people trying to communicate” S “willing to support you Alana, someone doing something new in the Deafblind community” VF

45. The positives “Sharing our communication and ideas” T ”The best thing is the participation and insightful thoughts and responses to the group as a whole” S “Being given the opportunity to share our thoughts and understandings, Given the chance of being present and included. Being part of Alana research group and seeing the academic team alongside you and hearing how Professor Keith speak highly of you for you both had shown high caliber of support and commitment in the research conducted on the deafblind community” S “Hope there will be more information in the future, really worth it, everyone should experience” VF

46. Take home message • An adapted World Café method is helpful in obtaining Deafblind perspectives • Co-produce research questions, standard examples and scenarios with DB and professionals • Preparation packs with written and multi-media for interpreters send prior to the event • Preparation debrief with interpreters just before the event, practice and discuss research • DB value face to face interactions and scales may be difficult to complete • BEFORE we research DB we need to understand the most appropriate methodologies!

47. What's next? I have completed five separate by interrelated studies. I will do a Deafblind consumer and professionals member check of the final results.

48. Thank you