Munira qualified with a bachelor’s and master’s degree in social work from India. It was during this time that while working with several organisations focusing on different social issues, that she developed a very strong interest in working on the issues of disability. She therefore decided to do an MSc in Disability Studies from the University of Bristol in 2014. Munira has experience of working in the health sector as an Associate Research Officer in a leading private hospital in India. She has also worked as a Lecturer in a central university in Delhi, India. Munira has most recently worked as a Research Assistant in the University of Bedfordshire where she was actively involved in six Department for Education (DfE) projects.
Munira’s PhD project is funded by Action for A-T and is in collaboration with a large team of parents, academics and clinicians called the ATeam. The aim of this project is to provide the foundations for therapy research into ataxia telangiectasia (A-T). Through this project we aim to produce healthcare guidance for children with A-T, including design and exploration of a home-based exercise package to help manage A-T in the longer term.
Ataxia-telangiectasia is a rare type of hereditary ataxia. Symptoms usually begin in early childhood, although they can sometimes develop later. The symptoms of A-T tend to get worse quite quickly. People with the condition usually live until the age of 19 to 25, although some may live into their 50s. It is a complex condition and nutritional problems are common. For example, problems chewing and swallowing with an associated risk of aspiration, as well as diabetes. It would appear from preliminary work that exercise and activity may be the desired intervention, although little is known about the nutritional management of this condition.
Munira will start this project by reviewing the existing research around A-T therapy management and summarise these findings, which will include nutrition. These findings will help inform guidelines for A-T therapy management for nurses and allied health professionals. The team will then develop a home-based programme of exercises with an interactive group element, that could target improvement of ataxia, or other priority problems that children experience. To test the feasibility and effectiveness of the home-based programme, a randomised controlled trial will be designed.
Tracey Parkin from the Dietetics, Human Nutrition and Health group is one of Munira’s supervisors and will assist with the design of the intervention. In particular she will focus on motivation and engagement elements of the intervention. She will also support the scoping review regarding nutritional management strategies for this condition.
The full supervisory and advisory team is:
- Dr Lisa Bunn, Director of Studies, a physiotherapist with a specialist interest in ataxia
- Dr Tracey Parkin, a dietitian with a speciality interest in diabetes, self-care management and motivation
- Dr Amanda Wallace, Senior Lecturer in Physiotherapy, UCL, with a specialism in paediatric neuromuscular conditions
- Dr Elizabeth Cassidy, a physiotherapist and expert in qualitative research and the lived experience of persons with ataxia