- MS Australia-supported researchers asked AMSLS participants about planning for a crisis and what help they would like when preparing a crisis plan.
- Only 17.4% of people said they had a crisis plan that met their needs.
- When preparing a crisis plan, most people preferred assistance from MS healthcare providers, MS nurses, support workers, neurologists and MS advocacy groups.
- Helping people living with MS to prepare for crises should consider the disability they may experience.
What types of crises do people living with MS face in Australia?
Crises such as fires, floods and pandemics can lead to interruptions in service access, damage to infrastructure, displacement or isolation. People living with MS who have disability or high healthcare needs may be especially vulnerable to crises. This is because they may be less mobile, have fatigue, have problems with communication or cognition or have sensory impairments.
What did the researchers do?
In a study led by MS Australia-supported researchers Dr Claudia Marck, Professor Ingrid van Der Mei and Dr Yvonne Learmonth, the research team used the Australian Multiple Sclerosis Longitudinal Study (AMSLS) to ask people living with MS about crisis preparation planning. These included:
- Perceived usefulness of a crisis response plan
- Assistance required in developing a crisis plan
- The usefulness of information about health behaviours during a crisis
- Contact preferences to receive information at times of crisis.
What did the researchers find?
Published in the International Journal of Disaster Risk Reduction, the research team analysed the answers from 1,479 people living with MS to understand their needs for a crisis preparation plan.
The study found that 17.4% of respondents already had a crisis response plan that suited their needs, 6.5% had a plan that needed updating, 31.0% said creating plan would be useful, 31.0% said they would not find a crisis response plan useful and 14.1% said they were unsure. People living in metropolitan areas were less likely to want a crisis plan compared to people living in rural and regional areas. People said a general emergency plan would be the most helpful.
For the 763 people who said creating or updating a crisis plan would be useful or were unsure whether a plan would be useful, 32.6% said they needed professional assistance to create or update a plan. Assistance was preferred from MS healthcare providers (60.4%), MS nurses (46.9%), support workers (41.5%), neurologists (36.9%) and MS advocacy groups (28.8%)
About a third of all 1,479 respondents (30.4%) said they would like support with health behaviours during a crisis. This included support for managing stress (65.9%), exercise (57.4%), sleep (56.3%) and diet (46.9%).
When asked about their preferred methods for receiving information at a time of crisis, email was the most popular with respondents (62.2%), followed by websites (54.5%), hotlines (42.8%), text messages (39.1%) and telephone (30.7%).
Why is this important?
This study is the first to look at crisis planning needs in a large group of Australians living with MS. It showed that while more than half of the respondents valued having a crisis plan, only 17.4% had a plan that met their needs. A large proportion were unprepared for a crisis, saying they were unsure of whether they needed a crisis plan or that they had no need for one.
More knowledge is required on crisis preparation for people living with MS. It is also important to provide help with health behaviours such as stress, exercise and sleep. Development of resources to support this should be co-designed with people living with MS and their carers, to also consider the disability they may experience.
