Academic paper on Motor Neurone Disease gives patients a voice

18-November-2002

Academics from the University of Wollongong are presenting a paper at a conference in Melbourne tomorrow on the difficulties associated with managing Motor Neurone Disease, based on the experiences of a former colleague.

The paper, mostly written by Dr Karin Garrety from the School of Management, Marketing and Employment Relations, is being presented at the Annual Meeting of the International Alliance of Motor Neurone Disease by Professor Richard Badham, Christine Dimmer and Russell Gluck, on behalf of the UOW group of academics.

The paper, titled 'Traversing the Maze: Finding a Way In and Through the Health System', is based around the experiences of Dr Cecily Boas, a social scientist at UOW who recently died from Motor Neurone Disease.

Dr Boas recorded more than 18,400 words about her experiences and reflected difficulties faced by her and her partner, Russel Gluck, during her rapid deterioration from the disease. She had several aims in conducting the research, according to Dr Garrety.

"Firstly, it was a way of maintaining some power and control in her life by having her voice acknowledged and heard. It was a way of making sense of what was happening. Most importantly, however, Dr Boas hoped that her research would be used for education", Dr Garrety said.

The focus of the paper is on the work that patients and their carers must do to manage the disease, given the variety of different health services that need to be involved, and the rapidly changing nature of the patients' requirements.

The aim of paper and forthcoming educational materials (a CD ROM and film), according to the UOW researchers, is to give a patients' perspective of Motor Neurone Disease that can be used to inform and educate those people who are involved with the management of the disease.

For more information, or to arrange an interview with the project team: contact Terri Mylett at the School of Management, Marketing and Employment Relations at the University of Wollongong on 4221 4080 or Karin Garrety on 4221 3565 (w) or 4229 2161 (h).