The Impact of Communication Guide Support for People who are Deafblind

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Christian Clyde Houston
8 years ago
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1 The Impact of Communication Guide Support for People who are Deafblind

2 Outline of this presentation Background why we did this pilot project Review the role of the Communication Guide How we went about the project Methodology Training developed Experiences Results, outcomes, limitations Where to from here

How we went about the project Methodology Training

3 Background to the Pilot

4 Background to the Pilot Senses Australia NFP Services for people with disabilities and a unique service for people who are deafblind To be a centre of excellence in deafblindness and dual sensory loss

5 Background to the Pilot Inspiration from Ole Mortensen Similar services exist in other countries Service / profession has not been established in Australia before Gap in the research

6 Background to the Pilot A pilot required to advocate for ongoing services Pilot funding Masters Research Project

7 Role of the Communication Guide

8 Why Communication Guides Proudly Australian (oi-oi-oi)

9 Role of the Communication Guide 1:1 communication Environmental information Sighted guide

10 Role of the Communication Guide Practical help with everyday tasks and access to community services Provide information, the best way to convey it and if it has been clearly received Not an interpreter A valuable addition to other services such as domestic help / social work

to convey it and if it has been clearly received Not an interpreter

11 Role of the Communication Guide The more successful they are, the more visual and auditory information the person with deafblindness will want. This role therefore is not to develop independence with an aim to then remove support, but to provide ongoing support.

12 Methodology

13 Research Question How does a communication guide s support impact on an individual with deafblindness?

14 Research Question In examining this question, the following sub-objectives were also analysed: How was the quality of life of the participants affected? How was the occupational performance of the participants affected? What aspects of the communication guide support did the participants value? What aspects of the communication guide support did the participants not value?

How was the occupational performance of the participants affected?

15 Methodology Exploratory research Inclusion and exclusion criteria Age Deafblind Others Curtin University s Human Research Ethics Committee

16 Methodology Intervention Communication Guide service for 6 months, up to 6 hours per week depending on support needed to achieve goals to 10 participants.

17 Methodology Mix of qualitative & quantitative measures used: 3 Assessment tools (pre-post) interrai Community Health Assessment and Deafblind Supplement SF-36 Health Survey Canadian Occupational Performance Measure Semi-structured interview post intervention analysed for common themes

Deafblind Supplement SF-36 Health Survey Canadian Occupational

18 Methodology Reducing bias Pre and post test by OT Interview by Social Worker Inter-rater reliability same person pre and post test Interpreters used where needed

19 Communication Guide Training

20 Communication Guide Training Modules included: Role, what it included and did not Deafblind Awareness Sighted Guide Person Centered Practice Legislation and ethics Task analysis & compensatory strategies e.g. backward chaining, breaking down activities Funding and Community supports Reporting/documenting and feedback requirements/regular support

21 RESULTS

22 Profile of Participants 5 males, 5 females

23 Profile of Participants Age of onset of vision loss 2 participants - either at birth or prior to the age of 2 8 participants - between the ages of years

24 Profile of Participants Diagnosis related to the vision loss

25 Profile of Participants Age of onset of hearing loss 8 participants - at birth or before the age of two years 2 participants between the ages of 3-18 years

26 Profile of Participants Diagnosis related to hearing loss 8 participants - congenital syndrome - 1 also had tinnitus 1 participant - perforated ear drums 1 participant - did not know the cause

27 Profile of Participants

28 What did services look like? Participants goal related to: Cooking skills Fishing Shopping IKEA, Bunnings Art painting water colour Music playing violin at aged care facilities, piano Setting up home environment Improve computer skills Assist transition to education setting Improve social networks Utilise public transport

29 In the Apple shop

30 Playing the violin

31 Being visited by a friendly dolphin

32 Pre and Post COPM scores Assessment 1 Assessment 2 Goal P S P S 1. To improve skills when using the itunes program on laptop computer P = Performance S = Satisfaction

33 Final Interview - Themes Theme Support Provided by Communication Guides % of total data 23% Connections and Networks 17% Quality of Life 13% Challenges 12% Participant Positive Feedback on Communication Guide Services 12% Personal Characteristics 9% Goals and Desires 7% Occupation 5% Person-Centred Approach 2%

34 Final Interview - Themes 1. Support provided by CG (23%) Practical support 55% Emotional support 22% Advocacy 14% Flexibility & availability of communication guide 6% Resources provide by communication guides 2% Expectations of communication guide service 1%

35 Final Interview - Themes [Communication Guide] was good to help me cut the paper when I can t see what I'm cutting. So that was good. yeah, and able to give me moral support when I was struggling.

36 Final Interview - Themes 2. Connections & Networks (17%) Community 56% Friends 25% Transport 7% Paid support 5% Supporting others 4% Family 3%

37 Final Interview - Themes The knitting club was good, it was really quiet, and there wasn t any other noise in the background. We went to Apple. I could stay there a bit longer and enjoy people s company a bit more.

38 Final Interview - Themes 3. Quality of Life (13%) Positive emotional experiences 59% New experiences 20% Mental health 8% Isolation 7% Physical wellbeing -6%

39 Final Interview - Themes It makes a big difference. I feel a lot more confident than I was in the previous years. normally, like, might have cleared out in half an hour but being able to persuade me to stay a bit longer and get a bit more enjoyment.

40 Final Interview - Themes 4. Challenges (12%) Difficulties communicating with others 27% Other people s attitudes or conflict 17% Issues with delivery of services 17% Poor environmental access 13% Lack of information 12% Issues with other organisations 7% Lack of finances 3% Lack of support 2% Difficulties in completing activities 2%

41 Final Interview - Themes You just miss so much information. She wasn t able to come on the weekends, only on a Saturday morning.

42 Final Interview - Themes 5. Participant positive feedback on Communication Guides (12%) Communication skills 41% General comments 28% Sighted guide skills 20% Allocation of communication guide time 11%

43 Final Interview - Themes She was good. She was quite easy to communicate with, she finger spelt and signed. That was good. She tried to make sure I can hear what someone s saying. she responded when I needed. She was very well trained. I really trust her.

44 Experiences of the Communication Guides Hugely satisfying role Training prepared them well Communication guides reported learning a lot on the job Some communication guides worked with several participants through the project adapting to the needs of different people

46 Outcomes from Assessment Tools COPM statistically significant change for all 10 participants towards their goals SF-36 no statistical change interrai Community Health Assessment & Deafblind Supplement no statistical change

47 Limitations / Challenges of the Study Number of participants Recruiting participants Running the project within budget

48 Study Conclusion There was an overall increase in participants quality of life due to communication guide support.

49 Study Conclusion Increases in emotional and physical well-being as a result of the communication guide support. Deafblind participants were able to have new experiences & participate in more activities with their communication guide support.

50 Recommendations

51 Recommendations 1. Replicate this study nationally with a larger sample.

52 Recommendations 2. Communication guide training is provided within the disability, education and aged care sectors.

53 Recommendations 3. Communication guide training is accredited and a national register of communication guides is developed.

54 Recommendations 4. Health and aged care agencies undertake training related to deafblindness.

55 Recommendations 5. National Disability Insurance Scheme to enable individuals who are deafblind to fund communication guide services in all States and Territories.

56 Acknowledgements Participants Communication Guides Disability Services Commission of WA and Ian Potter Foundation Associate Professor Angus Buchanan & Professor Errol Cocks - Curtin Clinical Supervisors Senses Australia staff - Karen Wickham, Angela Wills & Adele Calley

57 Thank you Contact details:

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