TY - JOUR
T1 - Healthcare complexities during community crises
T2 - Recommendation for access to healthcare for Australians with multiple sclerosis
AU - Learmonth, Yvonne C.
AU - Assunta, Hunter
AU - Skeffington, Petra
AU - Diana, Walker
AU - Kermode, Allan G.
AU - Marck, Claudia H.
N1 - Funding Information:
This work was supported by The School of Population and Global Health at The University of Melbourne, The Melbourne Disability Institute, and MS Research Australia (Grant Nos. 20-00007, 21-30053 and 20-216 ).
Funding Information:
This work was supported by The School of Population and Global Health at The University of Melbourne, The Melbourne Disability Institute, and MS Research Australia (Grant Nos. 20-00007, 21-30053 and 20-216).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, for his assistance in survey design and initial design of the study. We thank Lydia Frampton, Dr Brody Heritage, Prof Lisa Gibbs and Prof Ingrid van der Mei for their contribution to the stakeholder workshop.
Publisher Copyright:
© 2023
PY - 2023/3
Y1 - 2023/3
N2 - Background: In 2019 and 2020, over 17 million hectares of Australia burned, and half of the Australian population was affected by toxic bushfire smoke. Then in 2020, restrictions designed to curtail the spread of COVID-19 resulted in significant changes to healthcare access. There is no Australian emergency management standard for persons with disabilities, including those with multiple sclerosis (MS). Persons with MS often require multidisciplinary and complex care, with continuity of treatment essential to prevent disease progression. Objective: To identify limitations in access to healthcare from the perspective of persons with MS as well as MS care providers during recent crises and make recommendations for policy to improve MS healthcare access during a crisis. Method: In mid-2020, we undertook online surveys and interviews with persons with MS, their carers, healthcare professionals and staff of MS service providers (i.e., care providers). We used descriptive analysis for quantitative, and a general inductive approach for qualitative data. Results: One-hundred and thirteen persons with MS and a total of 63 MS care providers, who were close carers, healthcare professionals and service providers provided survey responses. For participants with MS, limited access to general practitioners and medical tests were of the most significant concern during the bushfires and the pandemic. In contrast, during the pandemic accessing physiotherapy was another top concern. Twenty-nine people participated in in-depth interviews, revealing that reduced healthcare access during the bushfire and the pandemic caused concern. The use of telehealth received both positive and negative reviews. All participants indicated a need for preparation and planning for healthcare access before a crisis. Persons with MS recommended centralised information sources, prioritised access to healthcare and increased levels of MS nurses and other allied healthcare. Care providers recommended centralised information sources, more nursing and mental health care access, and increased opportunities for multidisciplinary telehealth delivery. Conclusions: We recommend the involvement of the MS community in creating and designing disaster preparation plans, which should cater to a range of disaster types, to improve disaster preparedness in a community that is vulnerable to increasingly common community crises.
AB - Background: In 2019 and 2020, over 17 million hectares of Australia burned, and half of the Australian population was affected by toxic bushfire smoke. Then in 2020, restrictions designed to curtail the spread of COVID-19 resulted in significant changes to healthcare access. There is no Australian emergency management standard for persons with disabilities, including those with multiple sclerosis (MS). Persons with MS often require multidisciplinary and complex care, with continuity of treatment essential to prevent disease progression. Objective: To identify limitations in access to healthcare from the perspective of persons with MS as well as MS care providers during recent crises and make recommendations for policy to improve MS healthcare access during a crisis. Method: In mid-2020, we undertook online surveys and interviews with persons with MS, their carers, healthcare professionals and staff of MS service providers (i.e., care providers). We used descriptive analysis for quantitative, and a general inductive approach for qualitative data. Results: One-hundred and thirteen persons with MS and a total of 63 MS care providers, who were close carers, healthcare professionals and service providers provided survey responses. For participants with MS, limited access to general practitioners and medical tests were of the most significant concern during the bushfires and the pandemic. In contrast, during the pandemic accessing physiotherapy was another top concern. Twenty-nine people participated in in-depth interviews, revealing that reduced healthcare access during the bushfire and the pandemic caused concern. The use of telehealth received both positive and negative reviews. All participants indicated a need for preparation and planning for healthcare access before a crisis. Persons with MS recommended centralised information sources, prioritised access to healthcare and increased levels of MS nurses and other allied healthcare. Care providers recommended centralised information sources, more nursing and mental health care access, and increased opportunities for multidisciplinary telehealth delivery. Conclusions: We recommend the involvement of the MS community in creating and designing disaster preparation plans, which should cater to a range of disaster types, to improve disaster preparedness in a community that is vulnerable to increasingly common community crises.
KW - Bushfire
KW - COVID-19 pandemic
KW - Healthcare access
KW - Multiple sclerosis
KW - Public health
KW - Qualitative research (mixed-methods)
UR - http://www.scopus.com/inward/record.url?scp=85147310444&partnerID=8YFLogxK
U2 - 10.1016/j.msard.2023.104531
DO - 10.1016/j.msard.2023.104531
M3 - Article
C2 - 36709575
AN - SCOPUS:85147310444
VL - 71
JO - Multiple Sclerosis and Related Disorders
JF - Multiple Sclerosis and Related Disorders
SN - 2211-0348
M1 - 104531
ER -
