Multiple Sclerosis and COVID-19: Health and healthcare access, health information and consumer co-created strategies for future access at times of crisis.

Autor: Learmonth YC; Discipline of Exercise Science, Murdoch University, Perth, WA, Australia; Centre for Molecular Medicine and Innovative Therapeutics, and Centre for Healthy Ageing, Murdoch University, WA, Australia; Perron Institute for Neurological and Translational Science, University of Western Australia, Perth, WA, Australia. Electronic address: y.learmonth@murdoch.ed.au., Bhoyroo R; Discipline of Exercise Science, Murdoch University, Perth, WA, Australia; Centre for Molecular Medicine and Innovative Therapeutics, and Centre for Healthy Ageing, Murdoch University, WA, Australia., Gibbs L; Disaster, Climate and Adversity Unit, Melbourne School of Population & Global Health, University of Melbourne, Victoria, Australia., Kermode A; Centre for Molecular Medicine and Innovative Therapeutics, and Centre for Healthy Ageing, Murdoch University, WA, Australia; Centre for Neuromuscular and Neurological Disorders, Perron Institute for Neurological and Translational Science, University of Western Australia, Perth, WA, Australia., Walker D; School of Plant Biology, University of Western Australia, Crawley, WA, Australia., Marck CH; Disability and Health Unit, Centre for Health Equity, Melbourne School of Population & Global Health, University of Melbourne, Victoria, Australia.
Jazyk: angličtina
Zdroj: Multiple sclerosis and related disorders [Mult Scler Relat Disord] 2024 Jul; Vol. 87, pp. 105691. Date of Electronic Publication: 2024 May 20.
DOI: 10.1016/j.msard.2024.105691
Abstrakt: Background: Persons with multiple sclerosis (MS) need regular access to medical services for optimal health outcomes. During the COVID-19 crisis, evidence indicated some detrimental health changes in persons with MS. Maintaining access to healthcare providers and healthcare information may minimise detrimental health changes during times of crisis. In Australia, there is limited evidence of consultation with people who have chronic health conditions or disabilities regarding government decisions to restrict healthcare access and in the provision of health guidance during the COVID-19 crisis. Yet, there are good examples of government consultation with other minority populations in Australia, leading to beneficial outcomes.
Objective: To identify MS community members' (persons with MS carers, advocates, healthcare providers) concerns about the health and healthcare access of persons with MS, during the second year of the COVID-19 pandemic and to collaborate with consumers in the MS community to co-create strategies to improve future access and health information provision at times of crisis.
Method: We undertook a consumer-co-created mixed-method study in the second year of the COVID-19 pandemic to identify healthcare access needs for MS. We presented results to our stakeholder group to identify support needs during crises. Persons with MS and care providers in the MS community completed an online survey and online interviews, and the stakeholder group participated in a stakeholder workshop.
Results: Forty-four people participated in surveys, 33 completed interviews, and seven stakeholders participated in the stakeholder workshops. Three themes were identified from the surveys and interviews: health concerns, accessing healthcare services and communication sources. Healthcare providers (76.9 % of persons with MS and 77.8 % of care providers) and websites specific to the pandemic (76.9 % of persons with MS and 83.3 % of care providers) were identified by most survey respondents as preferred information sources during the COVID-19 crisis. Consultation with stakeholders resulted in the co-creation of strategies directed at communication, health, and lifestyle, as well as policies and protocols to address the needs of the MS community during crises.
Conclusion: We listened to persons with MS and care providers to identify strategies to support health-communication, -access, and -lifestyle during crises. Consumer-created strategies are directed at national and local health advocacy organisations and governments. They are relevant for the coordinated healthcare planning of persons with chronic health conditions and disabilities during crises, such as those experienced by persons with MS.
Competing Interests: Declaration of competing interest The authors have no conflicts to declare
(Copyright © 2024 The Author(s). Published by Elsevier B.V. All rights reserved.)
Databáze: MEDLINE
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