ABSTRACT
Objectives & Aims: To investigate the health and healthcare experiences of persons with multiple sclerosis (MS) in the second year of the COVID-19 pandemic, including gathering community opinions to inform future crisis planning. Method(s): Second year data collection of a longitudinal consumer directed mixed-methods study. An online survey followed by semi structured interviews took place August-October 2021. Participants were Australian persons with MS, carers, MS-healthcare providers and MS advocates, most interviewed participants were returnees from the original 2020 interviews. The survey and interviews established health-related experiences in the second year of the pandemic and opinions on the needs of persons with MS for future crises. Qualitative data were analysed using a general inductive approach. Result(s): The study was completed by 34 persons (persons with MS:18, Carers:5, healthcare professionals:6, MS advocacy employees:5) from across Australia. Themes of healthy lifestyle, accessing healthcare and medication, accessing information, and plans of action were identified. Participants discussed and suggested helpful management strategies for the MS community during future crises including mental health services, increased accessibility to preventative measures, and healthcare and rehabilitation consistency through the crisis. Conclusion(s): The health and health-management implications of the COVID-19 pandemic are ongoing and represent one community crisis affecting Australians with MS. Consumer informed preparation models, such as those which include access to mental health services and consistency in healthcare and rehabilitation services are wanted by the MS community.