Vital Voices Using Digital Stories to increase participation for people who use AAC

Background Patient involvement, Patient Participation in our service Patient involvement, Patient Participation in our service User involvement-AAC User traditionally overlooked for inclusion in User involvement projects User involvement-AAC User traditionally overlooked for inclusion in User involvement projects Following on from User Forum-AAC Users identified Joint Training as the most preferred option Following on from User Forum-AAC Users identified Joint Training as the most preferred option

What is Digital Storytelling? Emerging use of multimedia tools Emerging use of multimedia tools To help individuals with long term conditions to tell their story To help individuals with long term conditions to tell their story Short narratives, first person Short narratives, first person Images, narration and music to tell a story about a specific topic Images, narration and music to tell a story about a specific topic Requires no literacy skills Requires no literacy skills Ideal for presenting their personal perspective on communication and the impact on their daily lives Ideal for presenting their personal perspective on communication and the impact on their daily lives

What it offers Ability to: Engage with local communities Engage with local communities Educators Educators Public health bodies Public health bodies Service Providers Service Providers Involvement in training of various professionals including students Involvement in training of various professionals including students Feeling of inclusion and empowerment Feeling of inclusion and empowerment

Vital Voices Project Recruitment- via letter to all AAC users post 16 had their own AAC system Recruitment- via letter to all AAC users post 16 had their own AAC system 3 Participants to date 3 Participants to date Availability -4 to 5 sessions, approx. 1 ½ - 2 hours long- large commitment-block Availability -4 to 5 sessions, approx. 1 ½ - 2 hours long- large commitment-block Individual sessions Individual sessions Venue flexible- at home or at centre Venue flexible- at home or at centre “Communication Really Matters” “Communication Really Matters”

How to do it? Process Set up protocol Set up protocol Pre- session information Pre- session information Symbolised topic/theme sheet to begin to think about their story Symbolised topic/theme sheet to begin to think about their story Requested to begin to gather photos that they might want to use Requested to begin to gather photos that they might want to use Permission slip consent to use story in training and presentations Permission slip consent to use story in training and presentations Ensure information was accessible Ensure information was accessible

Materials required Computer- laptop Computer- laptop Good microphone and stand Good microphone and stand Software- Photo Story 3 Windows Software- Photo Story 3 Windows Variety of clip art Variety of clip art Internet wireless access Internet wireless access DVD’s and photo paper DVD’s and photo paper Scanner Scanner Digital camera Digital camera Secure storage for stories Secure storage for stories Speakers Speakers

Session 1 Agreed personal topic Agreed personal topic Discuss procedure and commitment Discuss procedure and commitment Show example of a story Show example of a story Began compiling a story board in outline form Began compiling a story board in outline form Consider images they might need to use Consider images they might need to use Discuss title page and agree title for story Discuss title page and agree title for story Consider voice over Consider voice over

Session 2 Identify sequence of story Identify sequence of story Insert images Insert images Add text to slide Add text to slide Identify voice- person of their choosing, electronic voice Identify voice- person of their choosing, electronic voice Discuss music Discuss music

Session 3 Approve story so far and any changes Approve story so far and any changes Confirm images are appropriate to story and slide Confirm images are appropriate to story and slide Go over music and decide sequence of tracks for different scenes Go over music and decide sequence of tracks for different scenes Put in transitions between scenes Put in transitions between scenes Confirm voice/speech Confirm voice/speech

Session 4 Confirm music Confirm music Record voice over Record voice over Identify any changes Identify any changes Save as final digital story Save as final digital story Cover and DVD made and presented to individual Cover and DVD made and presented to individual

Outcomes for User Ability to participate in joint training with AAC team Ability to participate in joint training with AAC team Ability to give their personal perspective in a creative and engaging manner Ability to give their personal perspective in a creative and engaging manner Permanent record of their story to share with others Permanent record of their story to share with others Opportunity to use their communication skills in conversation and other roles Opportunity to use their communication skills in conversation and other roles Empowering individual to participate Empowering individual to participate

Outcomes for service Cohort of Adult AAC users able to take part in joint training along side AAC team Cohort of Adult AAC users able to take part in joint training along side AAC team Promoting skills for patient involvement which may be able to be further developed Promoting skills for patient involvement which may be able to be further developed Training materials in the form of a DVD(with permission) Training materials in the form of a DVD(with permission) Gave staff team opportunity to engage with adults who use AAC Gave staff team opportunity to engage with adults who use AAC

Challenges Photos-required minimum 50 images Photos-required minimum 50 images Recruitment Recruitment Gathering information-historical Gathering information-historical Sequencing-What comes next? Sequencing-What comes next? Voice over consistency Voice over consistency Need commitment from carers/family as support for AAC User Need commitment from carers/family as support for AAC User Time in a block Time in a block

How this can be used for other purposes Promote services or projects Promote services or projects Momento for participants attending a special event Momento for participants attending a special event A visual record of a special event A visual record of a special event For users to participate in improving services i.e. giving their opinion on health/education/social services For users to participate in improving services i.e. giving their opinion on health/education/social services

References The Participation Toolkit, Supporting Patient Focus and Public Involvement in NHS Scotland,Scottish Health Council The Participation Toolkit, Supporting Patient Focus and Public Involvement in NHS Scotland,Scottish Health Council Labonte,R. and Feather J. (1996) Handbook on Using Stories in Health Promotion, Ottawa:Health Canada Labonte,R. and Feather J. (1996) Handbook on Using Stories in Health Promotion, Ottawa:Health Canada Better Together-The Patient Experience Programme (2008) Better Together-The Patient Experience Programme (2008) Gaun Yersel, Self Management Strategy for Long Term Conditions in Scotland Gaun Yersel, Self Management Strategy for Long Term Conditions in Scotland Lambert, J. Digital Storytelling:Capturing Lives, Creating Communities, 3 rd edition Lambert, J. Digital Storytelling:Capturing Lives, Creating Communities, 3 rd edition A Participation Standard for the NHS in Scotland, Scottish Health Council, 2010 A Participation Standard for the NHS in Scotland, Scottish Health Council, 2010

Deborah Jans Barbara Mathieson Keycomm - Lothian Communication Technology Centre For further information