Communication Matters Research Matters an AAC Evidence Base
Communication Matters – Research Matters: an AAC Evidence Base April 2013
ect Proj CAP SCOPE’s No Voice, No Choice campaign Scottish Govt. engages Bercow report Government’s “Better Communication Action Plan” published
“…post code lottery… “…what is the need? ” “…no funds available… “…no money…” “…post code lottery… “…we can only fund 2 devices…”
Communication Matters – our aims • Increase awareness of AAC • Enable the exchange of information & ideas • Support research into AAC • Empower people with complex communication needs
The AAC Evidence Base project £ 468 k grant from Big Lottery Fund UK-wide research High-tech & low-tech AAC Started June 2010 (ends June 2013)
Project outcomes Increase awareness of the need for AAC Increase understanding of current AAC provision • Improved access to evidence about AAC • Building research capacity • •
Project team Simon Judge Professor Pam Enderby Dr Janice Murray Katie Holmes David Morgan
Communication Matters – Research Matters: an AAC Evidence Base May 2013 David Morgan
@Comm_Matters #righttoavoice #AAC #research
Project outcomes Increase awareness of the need for AAC § Increase understanding of current AAC provision § Improved access to evidence about AAC § Building research capacity §
The research team Professor Pam Enderby Dr Sarah Creer Dr Alex John Simon Judge Dr Susan Baxter
The data mountain
Interviews Practitioners survey Health database searches Literature searches Online surveys Focus groups Scoping survey Systematic literature review involving Professionals Voluntary sector Communication partners Commissioners & policy makers People who use AAC industry
Project outcomes Increase awareness of the need for AAC § Increase understanding of current AAC provision § Improved access to evidence about AAC § Building research capacity §
Calculating need (UK) Systematic literature review + practitioners survey Conditions Literature search Prevalence of conditions Literature search + professional consultation % with speech, language and communication needs Literature search + professional consultation % who could benefit from AAC
Conditions Head/Brain Injury, 2. 3% PMLD; 1. 7% Motor Neuron Disease; 1. 0% Other; 2. 5% Cerebral Palsy; 4. 5% Stroke/CVA; 9. 9% Alzheimer's/ Dementia, 23. 2% Learning Disabilities; 13. 3% Parkinson's; 22. 7% Autistic Spectrum Disorder, 18. 9%
People who could benefit from AAC: 0. 5% of the population 529 people per 100, 000 population
Population figures % of Scotland population (5. 3 m) UK (63. 2 m) Need AAC 0. 5% 26, 274 316, 164 Need powered aids 0. 05% 26, 554 31, 616
Population figures % of Scotland population (5. 3 m) UK (63. 2 m) Need AAC 0. 5% 26, 274 316, 164 Need powered aids 0. 05% 2, 627 31, 616
How many people use powered communication aids? 0. 05% Number of people who could potentially benefit 0. 036% Potential unmet need 0. 014% Number of people who currently use powered communication aids
How many people use powered communication aids? 0. 05% Number of people who could potentially benefit 0. 036% 23, 000 (UK) Potential unmet need 0. 014% Number of people who currently use powered communication aids Scotland 0. 036% = 1, 900
A growing need § medical advances leading to better survival rates § the ageing UK population § development of new AAC strategies & aids § rising expectations
Project outcomes Increase awareness of the need for AAC § Increase understanding of current AAC provision § Improved access to evidence about AAC § Building research capacity §
Gathering service data Information about the service • Services provided • Population covered • Links to other services Geographical coverage Equipment/strategies available and in use Local population
Components of AAC service provision Assessment Positioning & mounting Funding Maintenance Support Research & Development Loans Integration Training Customisation Repair Review Custom manufacture Information/ advice/ education
Service models § Varied providers § A wide range of eligibility criteria § Little consistency in the components of service provision § Funding for services & equipment was the number one issue of concern
The experience of services § Frustration over the time taken to identify & assess § Funding difficulties § Lack of support § Lack of technical skills & knowledge amongst Speech & Language Therapists
To summarise… § Concluded the prevalence of need for AAC at 0. 5% § “Gap” for powered communication aid could be affecting 23, 000 people in UK & 1, 900 in Scotland (2/3 rd of those who could benefit) § Proved that AAC service provision is neither consistent or complete across the UK § Produced concepts of what would make up a full and satisfactory service provision THESE ARE IMPORTANT AND VALUABLE RESEARCH RESULTS THAT WILL HELP THE FIGHT FOR BETTER PRODUCT & SERVICE PROVISION
Project outcomes Increase awareness of the need for AAC § Increase understanding of current AAC provision § Improved access to evidence about AAC § Building research capacity §
Manchester Metropolitan University Dr Janice Murray Michelle Beech Alan Martin
Project outcomes Increase awareness of the need for AAC § Increase understanding of current AAC provision § Improved access to evidence about AAC § Building research capacity §
Improved access to evidence about AAC - research questions 1. What type of information is required in the AAC evidence base? 2. In what formats should information be available to support wider access?
Methodology § § Participatory Action Research Co-researcher Stakeholder involvement Reflective process
AAC Evidence Base website – Focus Groups Medical professionals Researchers Charities Personal assistants People who use AAC Family members Education professionals Companies Speech & language professionals
Key themes - content § A glossary § User experiences § Technical specifications of AAC systems & devices § Decision-making studies § Service provision, funding & policy studies § Published case stories § Fact sheets § Discussion forum
Peer-reviewed articles § A bibliography of AAC articles § Links to some articles § Working with publishers to secure more links § Plain English summaries
ww. AACknowledge. org. uk
“Wow, it is great! Love the information and accessibility. ” “A terrific new AAC resource” “A great resource for anyone interested in AAC” “Lots of good things on the Evidence Base already. Hoping our own project can contribute one day. ”
Looking forward § Visit the site & give us your feedback § Developing more content § Building links with publishers § Review at end of first year
Project outcomes Increase awareness of the need for AAC § Increase understanding of current AAC provision § Improved access to evidence about AAC § Building research capacity §
Building research capacity § The Independent Research Panel § The case study template § The Research Involvement Network
The Independent Research Panel § Stakeholder representation § Oversight of AAC Evidence Base project § Advice and guidance on research strategy and activities
The case study template - aims § To capture evidence from practice § To build a bigger picture § To support research into AAC
Levels of Evidence Systematic reviews Randomised controlled trials Cohort studies Case control studies Descriptive studies e. g. single case studies Expert opinion, textbooks ?
Case study service development § § Electronic and paper template created Database created First wave of participants recruited Finalising processes for managing the service
The Research Involvement Network
The Research Involvement Network aims § To support research into AAC by building a list of participants § To provide researchers with access to a wider range of participants § To promote the involvement of people who use AAC in all aspects of research
Research Involvement Network development § Investigated models of similar services § Consultation with Independent Research Panel, researchers and others § Developed procedures, forms, marketing § Created database
Research Involvement Network Researcher Access Standard Forms Researcher Feedback Independent Research Panel Recommendation to CM Trustees
Research Involvement Network Researcher Access Standard Forms Researcher Independent Research Panel Feedback No Recommendation to CM Trustees Yes “Advertise” to RIN members
Research Involvement Network Researcher Access Standard Forms Researcher Independent Research Panel Feedback No Recommendation to CM Trustees Yes Interested RIN members “Advertise” to RIN members
Research Involvement Network development § Launched September 2011 § 100 members to date § First research project helped
Change Evidence Knowledge A voice
Approaching the end? ? ?
THANK YOU www. communicationmatters. org. uk /research www. AACknowledge. org. uk research@communicationmatters. org. uk @Comm_Matters #righttoavoice
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