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

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

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

Co-designing with Carers of People with Dementia – a nested Study

Content Development

IT Development

Caring for Carers of People

with Dementia Intervention

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

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)

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

What did it look like?

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

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

Analysis Framework

Banbury A, et al. Journal of Medical Internet Research 2018; 20(2):e25

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

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)

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

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”

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

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