Exploring the views and experiences of under-represented groups in using digital health to self-manage Parkinson’s disease, from the perspective of the patient and family carer; to inform the development of a digital support tool
- Principal Investigator: Danielle Nimmons
- 31 March 2020 to 31 March 2021
- Project No: 490
- Funding round: FR19
Caring for older people with complex health needs is an increasingly important challenge for the NHS. Parkinson’s is an example of a complex health condition in later life and can cause a variety of hard to manage symptoms. ‘Digital health’ includes websites and mobile phone technology. It has been suggested that it can improve care of people with complex health needs. However, some people find it difficult to use technology for a variety of reasons. This in turn can lead to inequality in healthcare.
Little is known about how older people from under-represented groups (e.g. an ethnic minority or has memory difficulties) with complex health needs experience digital health services. Therefore, our aim is to explore the experiences of people with Parkinson’s and their family carers who might have difficulties accessing digital health support, and how this could be improved.
This study builds on another larger programme of work, which is developing and testing a digital support tool (PD-Care) that aims to support people to manage their Parkinson’s and general health and wellbeing. For example, it will provide information on Parkinson’s, allow them to keep a diary of troublesome features of the condition and advise when to seek help from a healthcare professional. We will talk to people who have Parkinson’s or are a family carer from under-represented groups who may have difficulty using technology. We will ask people about their experience of using digital healthcare to help manage their condition, and what helps this or makes this more difficult. We will also observe how they use the PD-Care digital support tool, what the difficulties are and how these can be overcome. This will help identify factors so digital health services are more inclusive for older people from under-represented groups and to help them manage their own condition.
Nathan Davies, Kate Walters, Megan Barnett, Emma Dunphy, Wesley Dowridge, Kara Lee
Amount awarded: £16 473.86