‘They're getting a taste of our world’: A qualitative study of people with multiple sclerosis' experiences of accessing health care during the COVID‐19 pandemic in the Australian Capital Territory
Open Access
- 6 July 2021
- journal article
- research article
- Published by Wiley in Health Expectations
- Vol. 24 (5), 1607-1617
- https://doi.org/10.1111/hex.13284
Abstract
Background People with multiple sclerosis (MS), who are often immunocompromised, require complex care and engage with a variety of health-care providers to manage their health. Objective To elucidate people with MS' experiences of accessing health care during the COVID-19 pandemic in Australia. Design A qualitative study involving semi-structured interviews and thematic analysis. Settings and participants Eight adults with a clinical diagnosis of MS participated in telephone or video call interviews between June and July 2020. Results Participants were aware that having MS made them more vulnerable to contracting COVID-19. In some cases, usual care was postponed or not sought. Some circumstances warranted the risk of a face-to-face consultation. Benefits of telehealth consultations included improved access, convenience and being contact-free. In comparison with video consultations, those via telephone were considered less personal and limited capacity to read body language, and for physical examination. Most participants hoped to incorporate telehealth into their future health-care routines. Discussion and conclusion Personal risk assessment and trust in health-care professionals are determinants of the mode through which people with MS accessed health care during the COVID-19 pandemic. Telehealth has been a valuable tool to mitigate COVID-19 transmission through enabling contact-free consultations. People with MS may find specific value in video consultations, which enable visualization of physical function. There is a need for training and support for all clinicians to conduct remote consultations. Patient or public contribution This study was conducted by a team comprised of four people with MS, a neurologist and four health services researchers.Keywords
Funding Information
- Australian National University
This publication has 38 references indexed in Scilit:
- Continuity and the Costs of Care for Chronic DiseaseJAMA Internal Medicine, 2014
- Patient engagement in research: a systematic reviewBMC Health Services Research, 2014
- Secondary Surge Capacity: A Framework for Understanding Long-Term Access to Primary Care for Medically Vulnerable Populations in Disaster RecoveryAmerican Journal of Public Health, 2012
- Collaborating with consumer and community representatives in health and medical research in Australia: results from an evaluationHealth Research Policy and Systems, 2011
- Disability Progression in a Clinical Trial of Relapsing-Remitting Multiple SclerosisArchives of Neurology, 2010
- [Responsiveness of the Expanded Disability Status Scale (EDSS) to disease progression and therapeutic intervention in progressive forms of multiple sclerosis].2010
- Qualitative description – the poor cousin of health research?BMC Medical Research Methodology, 2009
- Participatory action researchJournal of Epidemiology and Community Health, 2006
- Using thematic analysis in psychologyQualitative Research in Psychology, 2006
- Naturalistic inquiry: Beverly Hills, CA: Sage Publications, 1985, 416 pp., $25.00 (Cloth)International Journal of Intercultural Relations, 1985