Progressive ataxia is a hereditary or acquired neurological condition that affects the coordination of motor movements, resulting in difficulties with walking, hand movements, communication, cognition as well as many other symptoms such as visual, hearing, digestive or cardiac problems. As the disease progresses, people with ataxia (PwA) become increasingly dependent on carers. This responsibility largely falls to family members. The presence of family carers is known to significantly improve the quality of life (QoL) of PwA. At the same time, we know from other progressive conditions such as dementia that carer burden can impact considerably on the QoL of family carers. It is therefore essential to provide support to family carers, to enhance their personal wellbeing and at the same time improve the QoL of the PwA they care for. There is no research to date that has explored the challenges faced by carers of PwA or how best to support them. This poses a significant research gap as the demographic and disease specific factors associated with ataxia are likely to cause challenges issues to other conditions that have been studied in greater detail.
This project therefore aims to capture the lived experience of family carers of PwA and co-develop a support package – aiming to enhance their QoL and well-being – together with them. The project will consist of a literature review surrounding carer experiences in other progressive conditions and available support structures. This will be followed by a qualitative phase that seeks to characterise the specifics of the lived experience of carers of PwA. This information will be integrated to form the basis of the final phase during which a support package specific to ataxia will be co-developed together with carers, health professionals and charity representatives.
Supervisory Team:
- First Supervisor: Professor Anja Lowit, a.lowit@strath.ac.uk
- Second Supervisor: Professor Christopher Graham, christopher.graham@strath.ac.uk