The impact of the Australian Black Summer Bushfires and the COVID-19 pandemic on wellbeing in persons with multiple sclerosis; preparation for future and ongoing crises

Abstract

Purpose

The Australian multiple sclerosis (MS) community experienced two recent major crises, widespread bushfires and the COVID 19 pandemic. We aimed to understand the needs of persons with MS during times of crisis.

Materials and methods

A consumer-directed mixed-method study. We included an online survey, semi-structured interviews, and a workshop with persons with MS, carers, healthcare professionals, and disability advocates. Data were collected via: (1) 176 people completing online surveys to identify crisis concerns and communications, (2) 29 people completing online interviews on bushfire and pandemic impact, and (3) 13 people participating in a crises-priorities workshop. Descriptive data were calculated for survey response, and a general inductive analytical approach was taken with interview and workshop responses.

Results

The most significant concerns were bushfire smoke exposure and disease-modifying-medication and susceptibility to COVID-19 (66% and 63% mean concern score, respectively). Interviews indicated crises experiences from the bushfires, and the pandemic overlapped respective of changes in mood and symptom stability. For bushfires, a need for future preparations, and for the pandemic, the benefits of social restrictions, disclosing personal health information and increased care burden were important.

Conclusions

Multiple crises challenged the MS community but offered lessons for healthcare in future crises. Continued progress in centralised crisis information, with considered use of telehealth and rural healthcare support, is needed.

Implications for rehabilitation

• The MS community showed high concerns for the effect of toxic smoke from the 2019/2020 Australian bushfires and, separately, for the disease-modifying-medication and susceptibility to COVID-19.

• The MS community placed priority on a crisis management plan for individuals.

• Reduced social activity due to restrictions was beneficial for MS symptom self-awareness and may help overall fatigue management.

• Healthcare system preparation must prepare to alleviate increased carer workload at times of crisis.

Keywords:

• Multiple sclerosis
• Australia
• public health
• health services research
• COVID 19
• environmental research
• bushfire

Acknowledgements

We thank representatives from MS Research Australia, MS Limited, MS South Australia/Northern Territory, MS Queensland, MS Western Australia, the Australian Physiotherapy Association and MS Nurses Australasia Inc. We thank our participants who represented persons with MS and carers for their contribution to the study. We thank Murdoch University honours student Lydia Frampton for her assistance in the initial analysis of the interviews and we thank and commend Dr Brody Heritage, Telethon Institute, Perth for his assistance in survey design and initial design of the study. We thank Lydia Frampton, and Drs Brody Heritage and Petra Skeffington for their contribution to the stakeholder workshop.

Authors contributions

CM and YL were responsible for the initial study design and, alongside LG, DW, and AK, obtaining funding. Researchers AH and CM, female disability health researchers trained in qualitative interviewing and analysis conducted the interviews. CM and YL, a female allied health researcher, co-ordinated the stakeholder focus group. The stakeholder workshop was facilitated by CM and YL. Data analysis was conducted by AH and YL. All authors are responsible for the final presentation of the study.

Disclosure statement

The authors have no competing interests to declare.

Additional information

Funding

This work was supported by The School of Population and Global Health at The University of Melbourne and The Melbourne Disability Institute and MS Research Australia (Grant Numbers 20-00007 and 20-216).