Upcoming Project: Caring for people with progressive ataxia – lived experience of family carers and co-development of support mechanisms
Principal researchers: Prof Anja Lowit and Prof Christopher Graham, Strathclyde University, Scotland.
Scientific summary:
Ataxia UK has recently co-funded a PhD studentship in caring for people with progressive ataxia at Strathclyde University, Scotland, led by Prof Anja Lowit and Prof Christopher Graham. The 4.5 PhD studentship aims to address the unmet need to understand what specific challenges family carers of people with ataxia (PwA) are dealing with, and their views on how they can be supported effectively. This will help to ensure that they are able to access the right help at the right time to enable them to support PwA and maintain their own wellbeing at the same time.
It will consist of four key phases. The first will involve a literature review of family carer experiences and challenges in other progressive neurological conditions, and write a systematic review of psychological support interventions for carers of these groups. The student will establish a PPI panel, consisting of family carers, PwA, Ataxia UK representatives and relevant healthcare professionals. The purpose of the panel will be to explore the issues that need to be addressed with participants in phase 2 to support the development of the ethics application.
In phase 2, after gaining ethical approval, the student will conduct a qualitative study exploring the lived experience of family carers. Recruitment will focus on participants caring for a wide variety of PwA, reflecting a range of ataxia types and symptoms, PwA age, severity of disability, as well as controlling for carer status, e.g. age and gender, potential ataxia diagnosis, etc. The aim is to collect views from a large number of carers through a survey, and to follow this up with more detailed discussions in focus groups or individual interviews (n=20-30). Data will be analysed with thematic analysis.
In phase 3, based on the experiences explored in Phase 2, as well as information previously gathered in Phase 1 on effective interventions and resources available to family carers from other areas, the student will then organise workshops to co-develop a carer support package.
Phase 4 will involve offering the support package to carers from the interview study in Phase 2. This will involve seeking their feedback on the acceptability, practicability of resources via focus groups. Adjustments will be made based on the feedback if possible within the remaining time frame.
Lay summary:
Ataxia UK has recently co-funded a PhD studentship in caring for people with progressive ataxia at Strathclyde University, Scotland, led by Prof Anja Lowit and Prof Christopher Graham.
People with ataxia face many challenges every day, from medical to psychological. In turn, those caring for people with ataxia – many of which are family carers – also face a number of challenges to their quality of life. So far, no research has been done to identify the challenges faced by family carers of people with ataxia and how these might vary depending on the type of ataxia, stage of their life, or other possible influencing factors.
The 4.5-year PhD studentship aims to co-develop support mechanisms for carers of those with progressive ataxias, by working together with family carers and people with ataxia through surveys, interviews and focus groups to identify key issues experienced affecting family carers.
The project will develop a carer support package from the issues identified during the interviews.
The main goals of the project are to gain greater insight into the challenges faced by family carers and people with ataxia. It is hoped that the carer support package can then be distributed to the Ataxia community via Ataxia UK.
This project is due to begin on October 1st 2025. Opportunities to take part in this project through surveys and interviews will be advertised in our newsletter and magazine.
If you are interested in taking part in this project once it starts, email our research team on sparr-reid@ataxia.org.uk with your name and whether you are a carer or someone living with ataxia, to be added to the waiting list to be involved in a panel of patients and carers when recruitment to the study starts.
