Agile development and evaluation of the Carers’CARE App for dementia carers
Information Sheet
What is the purpose of this project?
The Carers’CARE App project is dedicated to the development and evaluation of a mobile application to support people looking after a family member or friend with dementia.
Who is invited to participate?
We are seeking feedback from people living in Australia, over the age of 18, who provide care or support for their spouse, partner, parent, other family member, or friend, with dementia. You will also need to have access to a mobile device (Android or iOS only), or you can access the App in a web browser on a computer. Participation is voluntary and there are no consequences if you decide not to participate.
What do you get out of being involved?
You will be provided with an opportunity to comment on and help shape the development and evaluation of a prototype of a new support tool (called Carers’CARE) designed to help carers of someone with dementia. A prototype is an early version of a mobile application that is under development and refinement.
What will you be asked to do?
If you agree to participate in this project, you will be asked to:
- Answer online (once only) some demographic questions about yourself, your care giving role and the person with dementia you care for. These initial questions help to personalise the Carers’CARE App to your individual circumstances (approx. 5 mins).
- You will then be given access and instructions to download the free Carers’CARE App to your chosen device (e.g., iPad, smartphone, or computer). You may use the App as much, or as little as you like, and look at the content in whatever order you like.
- Use and give us your feedback (via the App or on-line) about the App. There are two feedback cycles, each of three months duration. You may participate in just one, or both cycles, depending upon your preferences and when you join the project.
- Each cycle involves answering a set of questions (within the App), taking approx. 15-20 mins in total, about:
- your needs for support and your observations of the health of the person you are caring for (at the beginning of App use only)
- whether using the App has been helpful for your coping, and general feedback on the App’s usability, design, and content (at the end of App use only)
- how you are feeling in yourself and about your care giving role (both at the beginning and end of a cycle of App use)
- Each cycle involves answering a set of questions (within the App), taking approx. 15-20 mins in total, about:
We are also interested in conducting brief follow-up interviews with a small number of carers about additional feedback they might have. The interviews take 20-minute and are conducted either face-to-face, or via telephone/video conference, depending upon carers’ preferences, covid restrictions and geographic location. The interviews are conducted by members of the research team who have expertise in technology and interventions for dementia carers.
You can refuse to be interviewed and still participate in the in-App or online feedback part of the project. Only a small number of carers who agree to an interview will be contacted and interviewed. We will randomly select carers (like tossing a coin) so, if you agree to be interviewed, you might not be selected for this part of the project.
If you agree to participate in the interview part of the project and are randomly selected,
- you might participate in just one, or two interviews, depending upon your preferences and when you join the project.
- your interview will be recorded to allow an accurate transcript to be made. You can decline the recording and still provide feedback.
- you will be asked about your views and feedback on:
- the prototype App’s usability (look, design, feel) and content presented
- any changes you would recommend
- whether the App was a useful tool for you
- whether the App might be useful for other dementia carers
What risks are there to participating in the study?
There are some minor risks associated with your participation in this research project. Some of the topics raised in the Carers’CARE App and/or reflecting on some of the questions asked in the survey and interview may cause some participants to become upset. However, the Carers’CARE App aims to provide you with skills and strategies, and information and links to helpful support resources to help manage stress and address these issues. If you do become upset, you may contact the Dementia Australia National Dementia Helpline during business hours on 1800 100 500 for private and confidential counselling. Alternatively, you may call Lifeline 24 hours a day on 13 11 14.
How will your personal information be treated?
The information obtained in the study will be treated as confidential and used to guide improvements to the design and features of the App and for research purposes only.
If you provide feedback in an interview you can choose to review and edit a transcript of your responses prior to any data analysis or publication of research.
All data will be stored securely on the Carers’CARE web servers which are hosted by the Australian NeCTAR Research Cloud (https://nectar.org.au/faq/) in a re-identifiable format. The NeCTAR Research Cloud is the University of Tasmania’s preferred storage cloud for research data. Data is stored securely on NeCTAR and will not be accessible to anybody outside the research team.
Additionally, recordings will be kept in secure and locked storage at the University of Tasmania and will only be accessible to members of the research team. All information will be kept securely for a minimum of 5 years after the research has been published, after which it may be destroyed if it is deemed to have no further value for research. No information that could identify you will be published.
Freedom to refuse or withdraw
Participation is entirely voluntary. You are free to withdraw at any time without having to explain why. If you decide to withdraw from the research there will be no negative effect on you. You may also withdraw any information you provide at any time.
What if I have questions about participation?
If you have questions about this research or would like a summary of the findings of the research once it is completed (after August 2022), please contact the project officers by email at carers.care@utas.edu.au.
Concerns or complaints
This research has received approval from the University of Tasmania Human Research Ethics Committee [H0024583]. If you have any concerns of an ethical nature or complaints about the way the project is conducted, you may contact the Executive Officer of the Human Research Ethics Committee (Tasmania) Network on (03) 6226 6254 or email human.ethics@utas.edu.au. You will need to quote H0024583.
Who are the researchers conducting this study?
The research team is a collaboration between University of Tasmania researchers from the School of Psychological Sciences, the School of Information and Communication Technology and the Wicking Dementia Research and Education Centre. The project team are:
Associate-Professor Kristy de Salas1, Professor Jenn Scott2, Dr Ian Lewis1, Dr Lindsay Wells1, Dr Michael Quinn2, Dr Kate-Ellen Elliott3, , Dr Kathleen Doherty3
Project Officer: Ms Makrina Tsinoglou2
1School of Information and Communication Technology, University of Tasmania
2School of Psychological Sciences, University of Tasmania
3Wicking Dementia Research &Education Centre (WDREC), University of Tasmania
This project is funded by a grant from the Tasmanian Community Fund (TCF: Grant No. 109327) with support from Dementia Australia (Tas) and Carers Tasmania.
Thank you for your time.
