The iSupport-PD study
A feasibility randomised control trial to explore the acceptability of SPARC: A digital intervention to support care partners of people with Parkinson’s with cognitive impairment
Background
Changes in thinking and memory can be a common part of Parkinson’s and may have a real impact on everyday life. As symptoms progress, people with Parkinson’s often need increasing support from an unpaid care partner, usually a family member or close friend, to help maintain quality of life.
While caring can be rewarding, it can also be demanding. Changes to thinking and memory (cognitive impairment) can make daily routines more complex, not just for the person with Parkinson’s but also for the person supporting them. When carers do not receive enough support, this strain can lead to burnout and, in some cases, avoidable hospital or social care costs. Despite the vital role carers play, there is currently very limited support available for those caring for people with Parkinson’s-related cognitive impairment.
A previously developed iSupport is a programme for carers of people with dementia that aims to reduce the health problems associated with caring and improve quality of life. It is available online or as a paper booklet and provides information and training to help carers look after themselves, provide everyday care, and manage complex behaviour changes. While iSupport is a valuable resource, it does not currently meet the specific needs of carers supporting people with Parkinson’s who experience cognitive changes.
That is why our team adapted iSupport to create SPARC (Supporting Parkinson’s Care Partners), an online support website for care partners of people with Parkinson’s who experience changes in thinking, memory, and behaviour, such as forgetfulness, difficulty concentrating, or finding decision-making more challenging. SPARC was developed in collaboration with care partners, people with Parkinson’s, and Parkinson’s specialists, drawing on lived experience and the latest research evidence.
What was the study about?
The aim of this study was to adapt iSupport into a digital programme for carers of people with Parkinson’s with cognitive impairment. We aimed to explore whether the intervention was relevant and useful for carers and to assess whether the study methods would be suitable for a larger evaluation in the future.
To do this, we recruited around 100 carers from across the UK via Parkinson’s UK, social media, Parkinson’s support networks, and Parkinson’s specialist NHS clinics. Participants were randomly allocated to one of two groups. One group received access to the iSupport-PD programme, including the SPARC website, while the other continued with their usual care.
We assessed how easy it was to recruit carers, who took part in the study, and how many carers remained involved over time. We also explored how participants felt about being randomly assigned to an intervention. Carers completed short questionnaires when they joined the study and again after 3, 6, and 12 months. To better understand carers’ experiences, some participants took part in interviews to share their views on being involved in the study. Carers who used SPARC were asked about any changes in how they coped with caring, and we examined website usage data to understand engagement.
Results
We successfully met our recruitment targets, participants were happy to stay in the trial and those who used SPARC found it engaging and useful. We now plan to apply for further funding to conduct a fully powered cost effectiveness study and to explore how SPARC could be embedded within health and care services across the UK.
If you have any questions about the project or are interested in finding out more, please contact: Professor Annette Hand annette.hand2@nhs.net
