Advocating for a palliative approach to care for MND family carers before and after bereavement

21 June 2019

MSWA is proud to fund Professor Samar Aoun’s latest neurological research into the current support systems available for those who have lost a loved one to Motor Neurone Disease (MND).

This is the first time MSWA has funded MND specific research via two grants allocated this year through the Motor Neurone Disease Research Institute of Australia (MNDRIA). A total investment of $200,000 has been made for the two WA based projects including a laboratory-based investigation into the link between proteins and the progression of MND.

The second led by Professor Aoun, is a national survey on the carer experiences with end-of-life care and bereavement support. The survey, which is a collaboration between La Trobe University, Melbourne and the Perron Institute in Perth where Professor Aoun is based, aims to inform best practice psychosocial support for family carers.

Covering a national sample of bereaved MND carers from the past three years, the survey will provide an opportunity to capture, for the first time, what matters most to people who are grieving.

Professor Aoun said there is currently limited bereavement support available, for those who need help, beyond what their family, friends, and social networks can offer them. “Some are saying after having an army of people around them looking after the patient, they are left alone with little to no support after the patient’s death.”

“A tailored approach to bereavement care is needed - the blanket approach offered by the majority of palliative care services is reported by many bereaved individuals to be unhelpful and a poor use of resources,” Professor Aoun said.

“My research indicates that 90% of people are seeking support from their family and social support networks in the first instance and are encouraged to do so. Interestingly, many bereaved individuals have reported they have been well supported by their funeral providers.

Looking after a loved one who is dying is a traumatic experience, which is why family carers’ support needs should be regularly identified, addressed and supported in all aspects of care including psychosocial, spiritual, and existential which are often neglected,” said Professor Aoun.

“Some specialist palliative care services only provide care in the last few weeks of life, which is not enough time to cover the needs for patients and their family carers. For MND, we believe palliative care services need to be offered from diagnosis.”

“This year we have started providing educational sessions (a collaboration between the Motor Neurone Disease Association of WA and the Perron Institute) to health care providers, such as allied health and nursing staff,” Professor Aoun added.

“These sessions provide the basis for providers to begin a palliative approach to care for MND patients, and their family carers, from diagnosis right through to bereavement. Feedback from 70 attendees so far has been extremely positive with better understanding how it will improve their practice.”

Through her research, Professor Aoun encourages health care providers to adopt a palliative approach to care, and help people get practical and social support in their preferred place of care and death, usually in the home. This means a better connection between the formal services and the informal community networks, as advocated by a Compassionate Communities approach to care. “Generally, people say they aren’t scared of death, they are scared of living with this disabling condition,” said Professor Aoun.

MSWA CEO Marcus Stafford AM said the decision to support MND research reflected the expanded charter of MSWA as an organisation that helps people living with a neurological condition.

“MSWA has been supporting people with MND for over 10 years with a Disability Services Commission (DSC) funded program,” said Mr Stafford AM.

“We believe medical research provides hope to the people we support and their families and thanks to the generosity of our supporters, MSWA is in a strong position to broaden our investment in research and support scientific investigations into neurological conditions,” added Mr Stafford AM.

Professor Aoun said the funding from MNDRIA enabled by MSWA, provides the foundation for the implementation of targeted supports and resources for MND family carers to improve their end of life caregiving experience, establish early intervention to prevent the complications of grief and develop best practice guidelines of national and international significance.

MSWA’s grants to MNDRIA are part of MSWA's record $3 million investment in neurological research funding for neurological conditions for 2018-19.

All next of kins/family carers bereaved because of MND in 2016, 2017 and 2018 are invited to complete a questionnaire exploring experiences of end of life care and bereavement support as part of a national survey, undertaken by La Trobe University and the Perron Institute. Your feedback on your experience will greatly assist organisations improve their services to family carers before and after bereavement.

You can complete the questionnaire online using https://is.gd/mndbereavementsupport. If you prefer a paper copy, or if you have any questions regarding the study, please contact Leanne Jiang on leanne.jiang@research.uwa.edu.au (mobile: 0420 613222). We encourage you to complete this anonymous questionnaire within two weeks of receiving it (if you requested it by post) and return it in the reply-paid envelope provided. We greatly value your contribution.