Why is this research needed?
If you've had a stroke in the last few years, you've probably used telerehabilitation of some kind.
Telerehabilitation is any rehabilitation done at a distance using communication technology. This covers a wide range of services and activities, such as:
- A phone call with an occupational therapist to talk through your needs and goals.
- Your physiotherapist sending you videos of exercises to try out.
- Even going to a virtual reality aphasia support group!
Telerehabilitation complements face-to-face care and could help community stroke services provide more therapy to more people, regardless of where they live. It can be easier to access as a service user, especially if you have mobility difficulties, and it's often more time-efficient for both users and providers.
However, telerehabilitation may not be suitable for everyone. In 2020, we surveyed 2000 stroke survivors and their loved ones and learned that about 1 in 5 people had had a negative experience of telerehabilitation. Further research is needed to understand why.
Telerehabilitation removes some barriers, such as making it possible to access rehabilitation without having to leave home. However, it also creates other barriers. Communicating at a distance may be difficult for people with aphasia or thinking and memory difficulties. There is also a lot of variation in whether telerehabilitation is available to stroke survivors and who gets offered it in different places around the UK.
Together, these things mean that not everyone who could benefit from telerehabilitation can access it, and not everyone who is offered telerehabilitation actually finds it helpful.
To solve these problems, the TELSTAR team want to understand more about what's causing them.
What are the aims of this research?
The overall aim of TELSTAR is to develop guidelines for telerehabilitation so that it works better for both service users and service providers.
To do this, the team will first review existing research to understand what different people think about how telerehabilitation is supposed to work. They expect to find lots of different opinions, so they will also talk to people affected by stroke and stroke professionals to understand their views and needs. They will ensure they capture the opinions of people who may have been left out by previous research including those with communication and cognitive difficulties, from diverse ethnic and socioeconomic backgrounds.
They will learn about who may benefit from telerehabilitation and what support and training should be available to service users and service providers. Then, they will work with stroke survivors and clinicians to co-design recommendations for stroke telerehabilitation and understand the best ways to get them into clinical practice.
What is the benefit of this research?
TELSTAR will give us a much better understanding of what stroke telerehabilitation is like now, including what is and isn't working. This will allow the team to develop evidence-based recommendations for how, when and to whom telerehabilitation could be offered in clinical practice and when it should not be the preferred way to provide rehabilitation.
By working with the stroke community, they also hope to find the best ways to make sure these recommendations make it into practice. In the longer term, this should mean that stroke survivors who are offered telerehabilitation are those who are most likely to benefit from it, and that there’s more consistency in availability and quality of telerehabilitation across different providers and regions. TELSTAR will also help identify which groups might be disadvantaged in accessing or benefitting from telerehabilitation.
Finally, the team want to develop a network of people with a specialist interest in stroke telerehabilitation and rehabilitation technologies. The network will continue to work together to research telerehabilitation and inform improvements in clinical practice – for example, finding ways to assess and meet the needs of groups who are currently excluded from telerehabilitation.
What PSP priorities does this research link to?
From 2019 to 2021, we worked with the James Lind Alliance on the Stroke Priority Setting Partnership (PSP). During the PSP process, we collaborated with people with lived experience of stroke and stroke professionals to find out what they thought were the top priorities in stroke research. From this, we identified the top ten priorities in two areas: prevention, diagnosis and short-term care, and rehabilitation and long-term care.
Now, when researchers apply to us for funding, we require that their work addresses at least one of these priorities, or a priority from the Childhood Neurological Disabilities PSP Top 10 as it relates to childhood stroke.
TELSTAR addresses the following priorities from the Stroke PSP:
- Rehabilitation and long-term care 5: Resourcing and organising community stroke services
- Rehabilitation and long-term care 10: Improving stroke survivor and carer experience of the stroke pathway
Meet the team
TELSTAR is co-led by Dr Niki Chouliara and Professor Adam Gordon at the University of Nottingham.
Niki is a Research Fellow and an expert in stroke rehabilitation research, focusing on how stroke rehabilitation services are provided in the community so that they offer real benefits for stroke survivors and their families. Niki will lead on the day-to-day work of the project. She is also a member of the Stroke Association-funded WAterS-2 team, who are working on making mental health support after stroke more accessible and inclusive.
Niki says, “We need to ensure telerehabilitation is delivered in line with existing evidence and that the needs and preferences of people with stroke are considered and respected.”
Adam is Professor of the Care of Older People, as well as a Consultant Geriatrician and Nottingham University Hospitals. His research is about how we can improve health and social care offered to older people.
Adam says, “This is an exciting study and an important step towards developing recommendations to support the provision of high quality and equitable community stroke rehabilitation services. We often see telerehabilitation and other technological fixes touted as possible solutions to the current workforce crises in health and social care, and the pressures we see on the system as a consequence. It’s important, though, that we only use these technologies where the can make a difference to improve the quality of care.”
The other members of the team are:
- Dr Trudi Cameron, Research Fellow at the University of Nottingham and a nurse, with over 34 years’ experience of working in the NHS as a clinician and senior manager. Trudi contributes to the day-to-day work of the project, including supporting stroke survivors and loved ones to take part in the research.
- Lisa Kidd, Professor of Nursing at Glasgow Caledonian University. Lisa is an expert in supported self-management, especially in the context of community rehabilitation services in Scotland. She uses this expertise to shape the design and methods of TELSTAR.
- Scott Ballard-Ridley, communications and engagement manager at Bridges Self-Management. Scott is a physiotherapist and stroke survivor and an expert in co-design approaches He advises on developing accessible research materials, assessing the relevance of findings to stroke survivors and co-producing recommendations for practice.
- Dr Shirley Thomas, Associate Professor in Rehabilitation Psychology at the University of Nottingham. Shirley advises on how to make participation in TELSTAR accessible to people with communication difficulties like aphasia. Like Niki, she is also a member of the WAterS-2 team.
- Leanna Luxton, Community Stroke Team Lead at Northampton General Hospital NHS Trust. Leanna is the clinical lead for TELSTAR and advises on including the views of people who are unable to access telerehabilitation, as well as whether recommendations are likely to work in clinical practice.
- Dr Rebecca Fisher, Stroke Programme Manager at NHS England, Rehabilitation and Life after stroke workstream lead and Associate Director of the Sentinel Stroke National Audit Programme. Rebecca advises on developing recommendations which can influence national policy and become adopted in clinical practice.
- Dr Rachel Stockley, Senior Research Fellow at the University of Central Lancashire. Rachel is a physiotherapist and expert in rehabilitation technologies. She advises on what needs to be considered when developing and embedding technologies in healthcare.
- Valerie Pomeroy, Professor of Neurorehabilitation at the University of East Anglia. Valerie advises on working with different groups of people when developing healthcare technologies, as well as how to change healthcare policy. She also advises on interpreting the findings of TELSTAR, especially how they might be relevant to rehab for other types of brain injury.
- Dr Jade Kettlewell, Senior Research Fellow at the University of Nottingham. Jade is an expert in in adapting rehabilitation interventions for remote delivery. She advises the team on ways to ensure findings reach a wide audience, both in the UK and internationally.