Dementia is a progressive disorder characterised by deficits in cognition, behavioural changes, and loss of function (Harrison, 2019). Family carers (and close friends) are often the main providers of care for people living with dementia (WHO, 2021). Carers may manage increasingly complex care needs and as a result, this can impact family carers’ mental and physical health, ability to work, and general quality of life (Hazzan et al., 2022; Puga et al., 2022). Family carers have indicated that they require more access to reliable information about caring strategies and skills that could help develop their knowledge and strike a balance between their caring responsibilities and their own needs (Bressan et al., 2020).
Previous research demonstrated that people use online health forums to seek support from others who share similar health conditions and experiences (Farnood et al, 2021) and reported that that people typically use online forums to address knowledge deficits not addressed in health appointments (Farnood et al, 2021). However, many forums can be unmoderated by healthcare professionals, which can lead to inaccurate or misleading information being used to inform healthcare-related decision-making. Other research has demonstrated that family carers for people living with dementia report difficulties in making decisions for the person they care for and may benefit from having extra support in caring for them (Bressan et al., 2020; Geddis-Regan et al., 2021). Therefore, this study aims to address the support and information needs of family carers for people with dementia by co-designing a virtual platform to enable social inclusion, supported by a moderator function, to enhance accuracy and accessibility of the health information shared. The virtual platform aims to provide a safe space and community for carers to speak to each other and share experiences in a moderated forum, thereby facilitating the exchange of knowledge beyond a traditional healthcare appointment.
This virtual platform has been developed using co-design methods. Co-design is increasingly used in healthcare and is a valuable method to enable collaboration between researchers, practitioners, and the public (Sanz et al., 2021). This approach empowers participants to share their knowledge, insights and experiences to create more user-centred and effective outcomes. To build the platform, four sequential co-design workshops were conducted, along with a final upcoming user-testing workshop to test a prototype version of the platform. Two in-person workshops, one in London and one outside of London were conducted to maximise diversity. Two more workshops were held online to ensure inclusivity, as much of our target population was unable to travel to attend workshops due to caring responsibilities. The final workshop will be a user-testing workshop, during which participants will provide feedback on a prototype of the platform. The workshops included family carers, healthcare professionals and people working in dementia facing roles, to encourage discussion from multiple stakeholder perspectives.
The co-design workshops provided valuable insights into the needs of family carers and how these can be served through our virtual platform. Carers cited the need for the information that would be included on the platform to be reliable and trustworthy. Any comments on the forum page that contain inaccurate information are to be flagged or deleted by the moderator. There was a strong preference for the platform to function as a repository for practical guidance, with a regularly updated ‘top tips’ section containing recommendations for care that had worked well for other people in similar situations to platform users. Carers also thought it would be useful to include a guide to local and online resources such as dementia cafes and community groups on the platform. Analysis from the user-testing workshop will be completed and results will help create a final version of the online platform. The research outcomes will then be disseminated in various formats such as academic publications, presentations and social media platforms.
After all feedback has been integrated into the final version of the online platform, we will aim to understand if the platform is user acceptable. This will help us achieve our goal of creating a supportive and reliable virtual community, that can serve as a resource for healthcare professionals to signpost family carers to for extra support outside of the constraints of a healthcare appointment.
The research team is nurse-led and interdisciplinary in nature. It includes Dr Annabel Farnood, Professor Catherine Evans as co-leads of the project, along with Professor Nathan Davies, Dr Charles Reilly, Professor Bridget Johnston who are co-applicants on the project. Miss Ankita Bhojwani is a researcher on the project. The study is also shaped by a panel of 6 lived experience experts who meet every six weeks to discuss how their experiences can inform project delivery.
This project is funded by the National Institute for Health and Care Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number NIHR206362). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.
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Farnood, A. (2021). The effects of online self-diagnosis and health information seeking on the patient-healthcare professional relationship (Doctoral dissertation, University of Glasgow).
Geddis‐Regan, A., Errington, L., Abley, C., Wassall, R., Exley, C., & Thomson, R. (2021). Enhancing shared and surrogate decision making for people living with dementia: a systematic review of the effectiveness of interventions. Health Expectations, 24(1), 19-32. https://doi.org/10.1111/hex.13167
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