Motor neurone disease study uncovers gaps in support for carers

The need for greater emotional support at end of life was one of the issues identified in a recently published national study on family carers of people with motor neurone disease.

The vulnerability and loneliness experienced by grieving caregivers and perceived need for more compassion and continuity of contact in coping with bereavement were among other key findings.

In looking for opportunities and gaps in services, the project focused on carer perceptions of Australia’s motor neurone disease associations, their role and capability within the broader sectors of health and disability.

The study, published in the journal Palliative Care and Social Practice, was supported by a MND Research Australia-MSWA grant.

Professor Samar Aoun (Perron Institute and La Trobe University) is the lead author.

“People with motor neurone disease are one of the most vulnerable patient groups because from diagnosis, they face the rapid progression of profound disability and death,” Professor Aoun said.

“Likewise, their family caregivers are one of the most challenged caregiver groups facing physical, psychological and social strain, before and during bereavement.

“Barriers to providing and receiving high-quality end of life care are multiple and complex. At a system level, for example, there is a disconnect between health, disability and aged care services,” Professor Aoun said.

As well as heading the Palliative Care Research group at the Perron Institute, Professor Aoun is President of the Motor Neurone Disease Association of WA.

Outcomes of a national bereavement survey facilitated in 2019 by all motor neurone disease associations in Australia provided the basis for this study and its recommendations.

“The MND associations are reported to be doing fairly well when it comes to the provision of equipment, informational and practical support, making home visits, liaison with other services on behalf of the clients and helping clients navigate the various systems of health and disability.

“Emotional support is important. Depression and anxiety increase the risk of carers going on to suffer from prolonged grief disorder, but this study showed that the emotional support received by carers of people with MND was not perceived as optimal.

“This finding was closely linked to a lack of training for MND associations staff in this aspect of their role, with insufficient funding for such training a contributing factor.

“Based on our research, a more standardised practice by MND associations is required, basing the frequency and nature of client visits on assessment of the disease trajectory and the distress felt by the family.

“This also requires a more standard national approach to training MND Advisors and to service delivery,” Professor Aoun said.

A public health approach to motor neurone disease end-of-life care is proposed to address the needs and preferences of motor neurone disease consumers, while supporting the capability of motor neurone disease associations within a multidisciplinary workforce to deliver that care.