Co-development and end-user testing of a Mobile App to support dementia carers.

The App content was designed specifically for this study. It contains content areas that cover self-care, management of behaviours and symptoms of dementia (BPSD), financial and legal matters, respite care, community-based non-government organisations (NGOs) and government services, positive aspects of caregiving, and mobilizing social support and social connectedness. There is also information on professional support in the community and the steps to seeking support from medical, psychological, and allied health professionals as well as dementia carers’ support groups and services. Links to services in dementia and carer support services provided through Australian government departments, NGOs and charitable organisations are embedded in the App. The App uses written content, short video clips, still shots and interactive features (such as serious games) to provide general coping and wellbeing education and information for Australian carers or people with dementia (PWD) . Carers' usage of the APP: To enhance end-user engagement and satisfaction, the App design gives carers agency (free choice/control), and flexibility to self-regulate the way they use the App and content they engage with. The Carers’CARE App is fully self-directed with no instructions or specifications to carers about the minimum amount of usage, no required dose, and no predetermined prescriptive pathways through the App modules. If carers wish they can use a navigation tool that enables them to know about modules in the App that might be most relevant to their self-identified needs. This is an optional feature they can choose to use to locate modules in the App to visit or explore that might be relevant to their circumstances. Duration of participants access to the App: For the first agile cycle, carers' will have access to the App for the 3 months post-enrolment. Carers who elect to participate in both agile cycles will have access to the App across both agile cycles (i.e., for 3 months post -enrolment, and across the second 3 month cycle, which will occur 5 months post enrolment through to 8 months post enrolment) Participants access the App directly from the Google Play Store and Apple App Store, either by searching for the App on those stores, or from direct links provided to participants during the onboarding process (i.e.., online eligibility screening and informed consent process) after registration is complete. The App will be identified as a Utas App with restricted access on the Google Play and Apple App store pages. To prevent unintended downloading of the App, it is clearly outlined in the description of the App, that it is intended only for use by those who have consented and registered to use the App. If someone discovers the App on the Google Play Store or Apple App Store without having first completed the registration and consent process, they will be unable to use the App as they will not have login details for the App. The direct links provided during onboarding can be opened in a web browser on a computer or mobile device. To assist participants who initially sign up on their computers but wish to proceed on their mobile device, an option is provided to send these links via email to their mobile device. To use the App on a desktop computer, participants can simply use the link provided to them after registering from any computer. Treatment adherence is not applicable and there is no prescribed dose or required therapy content. However, App analytics will provide information about participants’ patterns of App usage and usage patterns associations with primary and secondary outcomes. Agile cycles of App testing: There are two 3-month iterative feedback cycles of App testing. Analysis, minor refinements (e.g., bug fixes), and testing will happen concurrently and iteratively within a cycle. The phase between the two cycles will take in total around 6-8 weeks. It will encompass an iterative process (taking approximately 3-4 weeks) of examining quantitative usage data and qualitative feedback from participants to collectively identify parts of the app that are frequently used, well received, and useful, as well as parts of the app that need improvement, have usability issues, or are under-used. Members of the study team will test the changes to the app prior to the second participant testing cycle and this process is expected to take 3-4 weeks. Participants from the first agile cycle can elect to participate in the second cycle. The second agile cycle of testing will also involve a second round of recruitment to get feedback and usage data from a unique cohort of participants as well, who are not aware of the changes that have been made to the app. There are three types of participant groups being recruited: Group 1: carers of PWD (minimum 50 carers). Group 2: staff representing collaborating NGO organisations (maximum 2-3 per organisations) Group 3: subset of carers from group 1, randomly selected for interview (maximum 16) Groups 2 & 3 also participate in interviews. Selection of Group 2 NGO representatives: In agile methodology a co-development approach is taken. This involves direct participatory engagement with partner or stakeholder groups (in this case the dementia and carer NGOs) to co-develop the App. This helps shape that App’s alignment with NGOs’ respective services and enhance implementation planning for App dissemination and implementation through the NGOs in the future. Each NGO will nominate the staff who are best placed to provide the NGO’s feedback about refinements to enhance the APP’s utility, alignment, and complementarity with their services. NGO’s were involved in Alpha and preliminary beta testing of the App in prior research. Group 3: subset of carers from group 1: In enrolment process carers can opt-in or opt-out of random selection for an interview at the end of an agile cycle . From the group 1 carer sample who gave consent we will stratify on the basis of relationship to care-recipients (spouse/adult offspring) and randomly select maximum of 8 participants from each of these subgroups.