Curtin Health Innovation Research Institute (CHIRI) PhD candidate, Brenda Bentley, is helping people diagnosed with Motor Neurone Disease (MND) to write their life stories and is researching the impact of this on their mental health.
Based within the WA Centre for Cancer and Palliative Care, the study looks at whether the process of reflecting on one’s life in a recorded interview can relieve psychological distress as a person faces the end of their life.
“This type of therapy (coined ‘dignity therapy’) was developed in Canada by Dr Harvey Max Chochinov and was originally used with cancer patients and delivered good results,” Ms Bentley said.
“So far, 24 people with MND have taken part in the study and in a few cases, interviews have taken place via email as some people with MND can lose the ability to speak.
“I’m hoping to encourage another 10 people to take part in the study before analysing the results and bringing the study to a conclusion early next year.”
According to Ms Bentley, dignity therapy could be particularly effective for not only MND sufferers, but also their carers.
“MND is a family disease, and family carers carry an exceptional burden by providing extraordinary amounts of care. Previous research in Australia indicates that family carers provide the majority of daily care for people with MND throughout the course of the illness,” she added.
“Importantly, a caregiver’s distress impacts the mental and physical status of the person with MND. A palliative care intervention that assists the family carer in increasing hope may help to reduce depression and minimise distress for both parties.”
Ms Bentley is hopeful the feasibility study will pave the way for future, larger studies of dignity therapy with MND populations.
The study has funding support from the Australian Research Council and the Motor Neurone Disease Association of WA.
To find out more about the study, or to take part, please contact Brenda Bentley, WA Centre for Cancer and Palliative Care, via Brenda.Bentley@curtin.edu.au