Encountering the downward phase: biographical work in people with multiple sclerosis living at home

Abstract

This qualitative study examines how individuals in an advanced stage of multiple sclerosis (MS) who live at home, accommodate to their illness. The downward phase in the illness trajectory of MS often consists of a lengthy period of gradual decline. According to Corbin and Strauss's framework, accommodation is conceptualized as biographical work that refers to the actions taken to retain control over the life course and to give life meaning again. For our purpose semi-structured interviews with 22 people with MS were conducted and compared with 21 interviews with their family caregivers. The analysis consisted of fragmenting and connecting the data and involved close reading and constant comparison. The continuity of biography is at risk since body and performance failures lead to the loss of salient aspects of self. Participants interpret MS as an all-encompassing illness and emphasize the process of having to give up everything. Four case stories are described to demonstrate the complex intertwining of the biographical processes and to show the range in biographical accommodation. Some patients are capable of putting their lives back together again, while others retreat or do not consider MS a part of their lives. The unpredictable course of MS makes it impossible to give new direction to the life course.Multiple sclerosis Chronic illness Biography Illness trajectory The Netherlands Belgium