Title: Talking about life with Multiple Sclerosis : a qualitative study of patient experiences
Authors : Glässel, Andrea
Streeck, Nina
Mouton Dorey, Corine
Briegel, Dana
Spitale, Giovanni
Kesselring, Jürg
Biller-Andorno, Nikola
Proceedings: Abstract Book : 21st State of the Art Symposium
Pages : 23
Conference details: 21st State of the Art Symposium, "Challenges in MS Treatment and Research", Lucerne, 26 January 2019
Publisher / Ed. Institution : Swiss Multiple Sclerosis Society
Issue Date: 2019
License (according to publishing contract) : Not specified
Type of review: Peer review (Abstract)
Language : English
Subjects : DIPEx.ch; Qualitative Research; Multiple Sclerosis; Health experiences
Subject (DDC) : 616.8: Neurology, diseases of nervous system
Abstract: Introduction: Listening to patients’ voices is increasingly being recognized as an important factor for continuous improvement in health care. Integrating patients’ stories about their experiences with multiple sclerosis (MS) seems paramount considering the relatively high prevalence of MS and its life-changing consequences for those affected and their families. The Swiss database of patient narratives provides a systematic and methodologically rigorous collection of interviews about the real-life experiences with health issues and presents them as video- and/or audio-sequences on a website. Objectives: The primary objective of this study is to describe a wide range of people’s indi-vidual experiences of health and disease, to understand what matters to them and to provide a rich information resource for people affected by these diseases and for those who look after them. It will furthermore include the perspective of health care professionals. A secondary study objective is examining the contexts in which illness and health behaviours take place, and seeks to understand how society, self and physical bodies, shape experience of illness. Relevance of the study: This is the first introduction of the project of patients’ experiences in Switzerland. Results will be presented at a later stage. In this phase, we want to show learn-ing about patients’ perspectives based on qualitative research can be beneficial in a variety of ways: A) Improving health care: Narratives provide a valuable source of information on patients’ perspectives that can help improve health care. Based on qualitative interview data, the pro-ject generates scientific information on what matters to patients with MS through the course of their disease and about what strengths and deficiencies they perceive in the health care system. Understanding what is important for patients when they are ill is a crucial prerequi-site for the development of patient-relevant outcomes, quality measures, and for identifying opportunities for improvement and best-practice models. Including qualitative data into health services research can complement the use of empirical data as they are gathered, for example, through the MS registry by exploring patients’ experiences in greater depth and by pointing out underexplored themes that wait to be addressed. Concrete suggestions on poten-tial advances of health care services can be expected. B) Self-help and patient engagement: People facing similar issues benefit from consulting the website by gaining information and support which may help them to live and cope with MS and use their social healthcare resources more effectively. Not only will they find information on scientific facts about their disease but primarily gain insight into the personal experiences of others affected by MS. They may, for example, get to know how other patients get along with their illness in their daily activities, why they made certain choices about their medical treatment, or where to find proper support. That way, patients get the chance and might be motivated to increasingly become engaged in their own health. C) Education: The database not only strengthens patients’ voices in policy discourses but can also be used as a resource in teaching and continued medical education as it can help health professionals to better understand MS patients’ needs and priorities and close the gap between what really matters to the individual patient and what the physician perceives and treats. A better knowledge of patients’ preferences may affect a patient-oriented care. D) Research: The project contributes to health-related narrative research and offers junior researchers from medicine and health care professions the opportunity to get involved in this growing field of research. The data can be a valuable basis either for subsequent quantitative studies or for further (secondary) qualitative analyses to address emerging themes in greater detail. Methodology: The project participates in the international DIPEx network, currently repre-senting twelve countries, among them the UK (www.healthtalk.com) and Germany (www.krankheitserfahrungen.de). DIPEx works with a well-established and rigorous qualita-tive research methodology developed by the University of Oxford in 2000. Interviews with 40 to 50 people for each health condition, e.g. multiple sclerosis, are conducted, concerning personal experiences of health and illness. The project aims at continuously broadening the spectrum of issues being researched and presented on the Swiss DIPEx website.
Departement: Health Professions
Organisational Unit: Institute of Health Sciences (IGW)
Publication type: Conference Poster
URI: https://digitalcollection.zhaw.ch/handle/11475/14867
Appears in Collections:Publikationen Gesundheit

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