Talking About Life With Multiple Sclerosis. A Qualitative Study of Patient Experiences Development of DIPEx module MS

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. The objective of this study is to describe a wide range of people’s individual experiences of health and disease, to understand what matters to them and to provide a rich information resource for people with MS and for those who look after them. The relevance of the study: this is the first introduction of the project of patients’ experiences with MS in Switzerland.

Keywords

Multiple Sclerosis, DIPEx module, narrative research, patients perspective, functioning and disability

Management

Cooperation

DIPEx international Health Experience Research Group (HERG), University Oxford, (UK) School of Health Professions, Zurich University of Applied Sciences Winterthur, Prof. Dr. med. Andreas Gerber Grote, Dachverband Schweizerischer PatientenstellenErika Ziltener, Kantonsrätin, Patientenstelle Zürich,  University Hospital Zurich, Center of Clinical Nursing Science, Prof. Dr. Heidi Petry, DIPEx Germany, Albert-Ludwigs-University Freiburg Institute of Psychology, Prof. Dr. Dr. Jürgen Bengel, DIPEx Germany, Medical University of Brandenburg, Prof. Dr. Christine Holmberg, Clinic Valens, Prof. Dr. Jürg Kesselring, SPO Patientenschutz, Zürich.

Project duration

2017 - 2019

Approach/methodology

The Swiss Database of Individual Patient Experiences provides a systematic and methodologically collection of individual interviews about real-life experiences with health issues as multiple sclerosis. The project is part of the international DIPEx network, led by UK (www.healthtalk.com). DIPEx works with a well-established and rigorous qualitative research methodology developed by the University of Oxford in 2000, and which is documented in the Health Experience Research Group (HERG) manual. This qualitative study is based on narrative and semistructured interviews. Video- and/or audio-or text sequences will be presented online.

Aims

Aims of the study and the module of Swiss DIPEx database is 
- to develop a comprehensive understanding of the lived experience of illness, functioning and disability from persons perspective living with multiple sclerosis in their daily life. 
- to explore in-depth, the perspective of patients and partly caregivers experiences regarding MS including barriers, challenges, but also resources in managing a comprehensive treatment based on a biopsychosocial perspective.
- to make these experiences accessible to other people living with MS, peers, and stakeholders by using an online platform as www.dipex.ch (fall 2019).
 

Expected Outcomes

Video-, and or audio-, and or text sequences from patients/clients perspective on topics regarding health and illness narratives.