The experiences of support persons of people newly diagnosed with multiple sclerosis: an interpretative phenomenological study

Aim. This study explores the experience of the diagnosis of Multiple Sclerosis for the support person and identifies the impact on their lives. Background. At the time of diagnosis, the support person may not be readily identified in a traditional caring role; however, the diagnosis itself brings with it the possibility of changes to the roles in the relationship and possible consequences for biographical construction. Design. A hermeneutic phenomenological study. Methods. A convenience sample of nine support persons was interviewed between December 2008 - March 2010. The data were analysed using interpretative phenomenological analysis. Findings. The participants in this study were often not readily identifiable as 'carers'; however, the diagnosis of Multiple Sclerosis implied a shift towards a caring role at some point in the future. The uncertainty surrounding the nature and progression of the condition left this identity hanging, incomplete and as such contributed to a liminal way of being. Conclusions. This paper reveals that biographical disruption is not limited to the person diagnosed with Multiple Sclerosis but that the support person also undergoes a transition to their sense of self to that of 'anticipatory carer'. The findings provide insight into the biographical and emotional impact of Multiple Sclerosis on the support persons early in the development of the condition.