Lived Experiences of People with Recently Diagnosed Multiple Sclerosis: An Analysis drawing on Phenomenology and Ethics of Care - Paperback

by Hannah Laycock (Illustrator), Archie de Ceuninck Van Capelle (Author)

These days the improvement of professional care is at the top of the agenda for every stakeholder in professional healthcare: patient organizations, physicians, employers, insurance companies, pharmaceutical companies and governments. One of the proven instruments for the transformation of professional care is the opening up of practices of care by qualitative studies that describe their meaning. This book is such a qualitative study for the case of medical care for 10 people, recently diagnosed with relapsing remitting multiple sclerosis (MS). Despite the advent of patient centred care, attention for the perspective of the patient in directives for medical care in MS is still marginal. In this book is studied how patients feel about what had happed to them during the process of MS diagnoses and how they had made decisions about using medication. Also the family and the work place are studied as important social environments wherein patients try to make sense of their lives. Attention to the "voice of experience" of patients is a native and perhaps even the defining aspect of morally significant relationships between professional providers of MS care and their patients. The results this study offer stakeholders in professional care for people with MS leads and ideas to align policies and practices more closely to how MS is really lived by the people that are affected by this illness.

Author Biography

Archie de Ceuninck van Capelle studied theology and philosophy. This book was written while he was a doctoral candidate in the Department of Ethics of Care at University of Humanistic Studies (Utrecht, the Netherlands). Since 2002 he serves as a healthcare chaplain at various healthcare institutions in the Netherlands.