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First Insights into Barriers and Facilitators from the Perspective of Persons with Multiple Sclerosis: A Multiple Case Study


Ott, Joelle; Biller-Andorno, Nikola; Glässel, Andrea (2022). First Insights into Barriers and Facilitators from the Perspective of Persons with Multiple Sclerosis: A Multiple Case Study. International Journal of Environmental Research and Public Health, 19(17):10733.

Abstract

Multiple Sclerosis (MS) is a complex, lifelong disease. Its effects span across different areas of life and vary strongly. In Switzerland, there is an intense discussion on how to optimize quality of care and patient safety. Patients should be more involved in the management of health care to improve the quality of care from the patient's perspective and form a more comprehensive perspective. This multiple-case study explores the question of how persons with MS experience and describe functioning related barriers, facilitating factors, and ethically relevant conflicts. To address this from a comprehensive perspective, the MS core set of the International Classification for Functioning, Disability, and Health (ICF) is used as theoretical framework. To explore barriers, facilitators, and relevant ethical issues, different narrative sources were used for thematic analysis and ICF coding: (a) MS transcripts from DIPEx interviews and (b) an autobiographical book of persons living with MS. Insights that were meaningful for daily practice and education were identified: (a) understanding the importance of environmental circumstances based on narrative sources; (b) understanding the importance of a person's individual life situation, and the ability to switch perspectives in the medical field; (c) respect for PwMS' individuality in health care settings; (d) creating meaningful relationships for disease management and treatment, as well as building trust.

Keywords: DIPEx; ICF; ethics; multiple case study; multiple sclerosis; narration; patient experience; patient perspective; qualitative research methods; source analysis; thematic analysis

Abstract

Multiple Sclerosis (MS) is a complex, lifelong disease. Its effects span across different areas of life and vary strongly. In Switzerland, there is an intense discussion on how to optimize quality of care and patient safety. Patients should be more involved in the management of health care to improve the quality of care from the patient's perspective and form a more comprehensive perspective. This multiple-case study explores the question of how persons with MS experience and describe functioning related barriers, facilitating factors, and ethically relevant conflicts. To address this from a comprehensive perspective, the MS core set of the International Classification for Functioning, Disability, and Health (ICF) is used as theoretical framework. To explore barriers, facilitators, and relevant ethical issues, different narrative sources were used for thematic analysis and ICF coding: (a) MS transcripts from DIPEx interviews and (b) an autobiographical book of persons living with MS. Insights that were meaningful for daily practice and education were identified: (a) understanding the importance of environmental circumstances based on narrative sources; (b) understanding the importance of a person's individual life situation, and the ability to switch perspectives in the medical field; (c) respect for PwMS' individuality in health care settings; (d) creating meaningful relationships for disease management and treatment, as well as building trust.

Keywords: DIPEx; ICF; ethics; multiple case study; multiple sclerosis; narration; patient experience; patient perspective; qualitative research methods; source analysis; thematic analysis

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Additional indexing

Item Type:Journal Article, refereed, original work
Communities & Collections:04 Faculty of Medicine > Institute of Biomedical Ethics and History of Medicine
Dewey Decimal Classification:610 Medicine & health
Scopus Subject Areas:Physical Sciences > Pollution
Health Sciences > Public Health, Environmental and Occupational Health
Physical Sciences > Health, Toxicology and Mutagenesis
Uncontrolled Keywords:Health, Toxicology and Mutagenesis, Public Health, Environmental and Occupational Health
Language:English
Date:29 August 2022
Deposited On:21 Dec 2022 08:01
Last Modified:22 Jun 2024 03:37
Publisher:MDPI Publishing
ISSN:1660-4601
OA Status:Gold
Free access at:PubMed ID. An embargo period may apply.
Publisher DOI:https://doi.org/10.3390/ijerph191710733
PubMed ID:36078447
  • Content: Published Version
  • Language: English
  • Licence: Creative Commons: Attribution 4.0 International (CC BY 4.0)