15/09/2023
You are invited to participate in the research of “e-DiVA (empowering Dementia Carers with an iSupport Virtual Assistant)”. This study is being conducted in Australia, Indonesia, New Zealand and Vietnam by local researchers under the supervision of chief investigator A/Prof. Dr Tuan Anh Nguyen (National Ageing Research Institute, t.nguyen@nari.edu.au). The study aims to improve the mental health and well-being of informal carers of people with dementia by: (1) developing and evaluating an iSupport Virtual Assistant to support dementia carers through a partnership of Australia, Indonesia, New Zealand, and Vietnam and (2) building capacity of researchers and non-government organisation partners to support this development and evaluation. There are three main research activities: Focus group discussions, member-checking and a pilot trial.
In the pilot trial, each version of the iSupport VA will be evaluated through local pilot tests with 20 dementia carers. Participants will be invited to access the iSupport VA on their smart devices. Their evaluation and feedback (at baseline, 3 months and 6 months) on using the virtual assistant will be reviewed to determine necessary changes for further adaptation.
You are invited as a possible participant in this research because you are identified as a carer of people with dementia. If you agree to participate, you will be asked to join in a exit interview. This interview will be recorded on a tape recorder for later transcription by the researchers. The audiotape will be transcribed verbatim into transcripts and translated to English but efforts will be made to remove identifiable information. These data will be stored in a server at National Ageing Research Institute (NARI) for fifteen years after the completion of the study. Only A/Prof Dr Tuan Anh Nguyen, the CIA of the project, has access to the server. After fifteen years, the electronic files will be destroyed under the supervision of the Director of Division of Social Gerontology, NARI.
Any information obtained in connection with the pilot trial feedback that can be identified with you will remain confidential and will be disclosed only with your permission, except as required by law. If you give us your permission by signing the attached consent form, we plan to publish the results in scientific journals and share these results with you or your institution. In any publication, information will be provided in such a way that you cannot be identified. We cannot and do not guarantee or promise that you will receive any benefits from this research. Participation in this research may cause you mild stress as you will be reminded of the dementia care pathway from diagnosis to treatment, care and supports. Participants will receive a giftcard ($100) for their time and involvement.
Participation in this study is entirely voluntary: you are not obliged to participate and - if you do participate - you can withdraw at any time. Whatever your decision, it will not affect your relationship with World Health Organisation, Alzheimer International, NARI, University of South Australia, Vietnam National Geriatric Hospital, University of New South Wales, South Australian Health and Medical Research Institute, University of Sydney, Swinburne University, University of California-Davis, The University of Auckland, and Atma Jaya University. If you decide to participate, you are free to withdraw your consent and discontinue participation without prejudice. If you do not wish to continue, the audio recording will be erased and the information provided will not be included in the study.
When you have read this information, the local researcher will discuss it with you further and answer any questions you may have. If you would like to know more at any stage, please feel free to contact A/Prof.Dr. Tuan Anh Nguyen, email: t.nguyen@nari.edu.au. All complaints will be forwarded to the Ethics Secretariat at their institutions and the Ethics Secretariat, University of South Australia, Adelaide SA 5000, Australia (Tel: +61 8 8302 3118, fax +61 8 8302 3921, email humanethics@unisa.edu.au). Any complaint you make will be investigated promptly and you will be informed of the outcome.
