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Information and resources important to the quality of life of people living with multiple sclerosis

Published online by Cambridge University Press:  09 November 2020

Malachy Bishop ,
Stuart Rumrill ,
Bradley McDaniels ,
Jian Li ,
Robert Fraser ,
Phillip D. Rumrill ,
Muna Bhattarai  and
Mirang Park
Malachy Bishop*
Affiliation:
Department of Rehabilitation Psychology and Special Education, University of Wisconsin-Madison, Madison, Wisconsin, USA
Stuart Rumrill
Affiliation:
Department of Rehabilitation Psychology and Special Education, University of Wisconsin-Madison, Madison, Wisconsin, USA
Bradley McDaniels
Affiliation:
Department of Rehabilitation and Health Services, University of North Texas, Denton, Texas, USA
Jian Li
Affiliation:
School of Foundations, Leadership, and Administration, Kent State University, Kent, OH, USA
Robert Fraser
Affiliation:
Department of Rehabilitation Medicine, University of Washington, Seattle, Washington, USA
Phillip D. Rumrill
Affiliation:
Department of Early Childhood, Special Education, and Counselor Education, Director of Research and Training, Human Development Institute, University of Kentucky, Lexington, Kentucky, USA
Muna Bhattarai
Affiliation:
Department of Rehabilitation Psychology and Special Education, University of Wisconsin-Madison, Madison, Wisconsin, USA
Mirang Park
Affiliation:
Department of Rehabilitation Psychology and Special Education, University of Wisconsin-Madison, Madison, Wisconsin, USA
*
*Corresponding author. Email: [email protected]
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Abstract

Multiple sclerosis (MS) is a chronic, typically progressive immune-mediated disease characterized by inflammation and demyelination in the central nervous system (CNS), and is associated with a wide range of neurological, physical, and psychosocial effects. For people living with MS, access to relevant, timely, and accessible health information and resources may contribute to effective illness management, psychosocial health, and quality of life (QOL). In this study, we sought to increase understanding of the specific types of information most wanted by people with MS, as well as the sources and effects of this information. Specifically, we surveyed 748 adults with MS about (a) the sources from which they obtain information about MS, (b) the type of information that is most important in terms of improving their QOL, and (c) specific topics about which they would like to have more information, services, or resources. Content analysis of the qualitative results demonstrated the diversity of information sources accessed by people with MS and the importance of providing information through different formats and media. The participants prioritized information related to new MS medications and treatments, physical and mental health and wellness, and local opportunities for support. Implications for practicing rehabilitation counselors are discussed.

Keywords

Multiple sclerosishealth informationquality of life
Type
Articles
Information
The Australian Journal of Rehabilitation Counselling , Volume 26 , Issue 2 , December 2020 , pp. 92 - 104
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Copyright
© The Author(s) 2020. Published by Cambridge University Press and The Australian Journal of Rehabilitation Counselling

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Footnotes

This manuscript is an original work that has not been submitted to nor published anywhere else. This manuscript is based on a large national study conducted for the National MS Society. The results of the analyses presented in this manuscript have previously been provided to the National MS Society in the context of an unpublished final project report. Publications regarding separate research questions using the same original participant sample are planned or have been produced, however not based on current research questions or topics. All authors have read and approved the paper and have met the ICMJE criteria for authorship. The authors have read the discussion provided by the ICMJE on overlapping publications.

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