co-designing with carers of people with dementia using ...€¦ · people with dementia using group...
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Co-designing with carers of people with dementia using group videoconferencing
Annie Banbury1, Lynne Parkinson1, Louise Byrne2, Sonja Pedell3, Atosha Clancy1
1 CQUniversity2 RMIT3 Swinburne University
Successes and Failures in Telehealth22nd & 24th October, Darwin
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Underpinning studies
Telehealth Literacy Project
(Banbury, 2014-2018)
1When the Care Journey Ends?
(Jameson, 2018)
2
Caring for Carers of People with Dementia
Banbury A, et al. Journal of Telemedicine and Telecare 2014; 20: 353-359Banbury A, et al. Journal of Telemedicine and Telecare 2016;22(8):483-88. Banbury A, et al. Health & Social Care in the Community 2017; 25: 938-950.Banbury A, et al. Journal of Medical Internet Research 2018; 20(2):e25Jameson S, et al. 2018 Under Review
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Research Question
How feasible, acceptable and effective is a videoconference outreach program for isolated rural carers for people with dementia?
Caring for People who Care for People with Dementia
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Co-designing with Carers of People with Dementia – a nested Study
Content Development
IT Development
Caring for Carers of People
with Dementia Intervention
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Aim
Work with a group of carers of people with dementia using co-
design principles to examine the carers role and inform the
development and content of a weekly group videoconference
program
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What is co-design?• A process which involves end users in the design of products or services.
• It supports end users to identify solutions to address problems
The Double Diamond Model (Design Council 2005)
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Participant Demographics
• 6 carers from Far North Queensland to Northern NSW
• 50% male; average age 66 years (SD 10.3), range 48-76 years
• Spouse, child, and sibling carers
• Person cared for were early, middle, late stages of dementia and deceased
• 50% private health insurance
• Mean number of chronic disease 1.3 (SD 1.5)
• Retired, home duties and part-time worker
• Only 1 had experience with group videoconferencing
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What did it look like?
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Methods• Tools adapted from co-design approach used in health and social care projects (Iriss
2014)
• Zoom software with IT support via phone; test call prior to first meeting; email link sent weekly
• 8 weekly meetings
• Carers shared their experiences, knowledge and insights through storytelling, pathway and experience mapping, problem and solution ranking
• Intentional peer support principles discussed to identify their relevance to dementia carers
• Meetings recorded, contemporaneous notes used for thematic analysis after each meeting
• Analysis shared with participants at each stage of the model for amendment
• Individual semi-structured interviews examining the experience of co-designing
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Weekly Outcomes
Week Title Outcome
1 Getting to know you Building Group dynamics
2 Journey Mapping Set of problems and solutions
3 & 4 Problem identification and required skills Problems and solutions matched to set of skills
5 Defining and understanding carers’ skills Set of wider factors informing carers skills
6 Unpacking carers’ skills Set of wider factors informing carers skills
7 Peer Support Statements Identification of relevant statements
8 Feedback on program design and sustainability of group
Set of discussion topics Method and commitment to continue meeting
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Analysis Framework
Banbury A, et al. Journal of Medical Internet Research 2018; 20(2):e25
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Feasibility• NBN, ADSL2, 4G
• Approx. 3 clicks to download software – 3 required IT support
• Average of 2 devices used per participant: tablet, laptop, phone
• Average age of devices 5 years 2 months
• Zoom interface varies with mobile device
• Pre intervention concerns were with their technology
– “I really ended up liking it quite a lot.”
• Overall good connectivity, only one severe problems
– “So it wasn’t really a problem with the technology”
• Audio most common problem
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Acceptability• High levels of acceptance of process and technology
– “It was a very thoughtful process, a very considered, a high
degree of empathy, and I think the technology supported that, [it]
didn’t detract from that’”
• VC enabled a more focused and considered discussion
• Privacy and Exposure – no concern
• 96% attendance at meetings
• Average length of meeting 84 mins (1 hour 24 mins)
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Effectiveness
“I can’t speak highly enough of what I got out of it …the journey was different for everyone, but we’re all going to get to the same place in the end, it’s just that the way we were getting there had some similarities, some differences, we could share all of that, empathise with each other, learn from each other, laugh”
• Sustainability – group self-organises to continue• Diversity a strength
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Effectiveness• Social support - feeling understood, validated
and connecting over shared experiences
“Each week I noted down something that was useful to me and my personal circumstances, and [it] helped me recognise my feelings and reactions around this situation that was kind of thrust upon me - so it’s beyond an information level”
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Summary
• Co-designing using videoconferencing enables
geographically dispersed people to participate
• The Double Diamond Model could be adapted to create
a new peer support program
• Group videoconferencing is highly acceptable and
supports learning and discussions on sensitive issues
• Most IT issues were minor and easily overcome
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Project Research TeamProfessor Lynne Parkinson, Central Queensland UniversityDr Annie Banbury, Prevention First, Central Queensland UniversityAnne Livingstone, Global Community ResourcingProfessor Denise Wood, Dr Steven Gordon, Dr Biplob Ray, Professor Margaret Mcallister, Professor Chris Doran, Central Queensland University Mrs Karen Nixon, Consumer RepresentativeDr Louise Byrne, RMIT UniversityAssociate Professor Sonja Peddell, Swinburne UniversityProfessor Susan Nancarrow, Southern Cross University Dr Carrie Peterson, World Health Organization, Regional Office for Europe
Funded by Australian Government Department of Health Dementia and Aged Care Services Fund: Research and Innovation Grants. Grant
Opportunity 1: Support for existing and emerging challenges in dementia