Improving the lives of ethnically diverse family carers and people living with dementia using digital media resources - Protocol for the Draw-Care randomised controlled trial

Antonia Thodis; Thu-Ha Dang; Josefine Antoniades; Andrew S Gilbert; Tuan Nguyen; Danijela Hlis; Mary Gurgone; Briony Dow; Claudia Cooper; Lily-Dongxia Xiao; Nilmini Wickramasinghe; Nalika Ulapane; Mathew Varghese; Santosh Loganathan; Joanne Enticott; Duncan Mortimer; Bianca Brijnath

doi:10.1177/20552076231205733

Improving the lives of ethnically diverse family carers and people living with dementia using digital media resources - Protocol for the Draw-Care randomised controlled trial

Digit Health. 2023 Oct 13:9:20552076231205733. doi: 10.1177/20552076231205733. eCollection 2023 Jan-Dec.

Authors

Antonia Thodis¹, Thu-Ha Dang^{1

2}, Josefine Antoniades^{1

3}, Andrew S Gilbert^{1

4}, Tuan Nguyen^{1

2

5

6}, Danijela Hlis^{1

7}, Mary Gurgone^{1

8

9

10}, Briony Dow¹, Claudia Cooper¹¹, Lily-Dongxia Xiao¹², Nilmini Wickramasinghe², Nalika Ulapane², Mathew Varghese¹³, Santosh Loganathan¹⁴, Joanne Enticott³, Duncan Mortimer³, Bianca Brijnath^{1

15}

Affiliations

¹ National Ageing Research Institute, Parkville, Australia.
² Swinburne University of Technology, Hawthorn, Australia.
³ Global and Women's Health, School of Public Health and Preventive Medicine, Monash University Clayton, Australia.
⁴ Department of General Practice, University of Melbourne, Australia.
⁵ University of South Australia, Adelaide, Australia.
⁶ Health Strategy and Policy Institute, Hanoi, Viet Nam.
⁷ OPAN/NOPRG & Dementia Australia Advocate, Melbourne, Australia.
⁸ Centre of Capability and Culture, Melbourne, Australia.
⁹ Association of Culturally Appropriate Services (AfCAS), Melbourne, Australia.
¹⁰ Perth Foundation for Women, Melbourne, Australia.
¹¹ Queen Mary University of London, London, UK.
¹² Flinders University, Adelaide, Australia.
¹³ St John's Medical College, Bangalore, India.
¹⁴ National Institute of Mental Health and Neurosciences, Bangalore, India.
¹⁵ University of Western Australia, Perth, Australia.

Abstract

Objectives: Ethnically diverse family carers of people living with dementia (hereafter carers and people with dementia) experience more psychological distress than other carers. To reduce this inequality, culturally adapted, multilingual, evidence-based practical assistance is needed. This paper details the Draw-Care study protocol including a randomised control trial (RCT) to test the effectiveness of a digital intervention comprising a multilingual website, virtual assistant, animated films, and information, on the lives of carers and people with dementia in Australia.

Methods: The Draw-Care intervention will be evaluated in a 12-week active waitlist parallel design RCT with 194 carers from Arabic, Cantonese, Greek, Hindi, Italian, Mandarin, Spanish, Tamil, and Vietnamese-speaking language groups. Our intervention was based on the World Health Organization's (WHO) iSupport Lite online carer support messages and was co-designed with carers, people with dementia, service providers, and clinicians. Culturally adapted multilingual digital resources were created in nine languages and English.

Results: In Phase I (2022), six co-design workshops with stakeholders and interviews with people with dementia informed the development of the intervention which will be trialled and evaluated in Phases II and III (2023 and 2024).

Conclusions: Digital media content is a novel approach to providing cost-effective access to health care information. This study protocol details the three study phases including the RCT of a co-designed, culturally adapted, multilingual, digital intervention for carers and people with dementia to advance the evidence in dementia and digital healthcare research and help meet the needs of carers and people with dementia in Australia and globally.

Keywords: Australia; animation; carer; dementia; digital health; ethnic minority; iSupport Lite.