A phenomenological exploration of the biographical impact of newly diagnosed MS on the individual and their support person

Aim: The aim of this study was to provide an understanding of the biographical impact of newly diagnosed Multiple Sclerosis (MS) on the individual and their support person(s) and how this impacts on how the person manages the transition to living with MS.Background: Being diagnosed with a chronic illness is a significant life event which may result in stress for the individual and their family. Previous studies in chronic illness have identified how previously held ideas of the self and identity, which are strongly linked to social roles, are challenged as a consequence of being diagnosed.Methods: The research was underpinned by a hermeneutic phenomenological approach. A focus group with seven MS specialist nurses was conducted to identify the support needs of people newly diagnosed with MS, and their role in providing support and intervention during the period following diagnosis. The data from this focus group then informed the development of the interview guide for the interviews with the people with MS and their support person. Semi-structured interviews with ten people with MS and nine support persons were conducted. The data were analysed using interpretative phenomenological analysis. Findings: The diagnosis of MS created an acute disruption to the taken-for-granted sense of self, both among people with MS and their support persons. The lived experience involved a number of disruptions to daily life which impacted on the identities associated with the many roles individuals had. Key themes were identified which add to existing knowledge by developing the meaning of being diagnosed with MS for the self, and identifying the processes that individuals go through on their journey to living with MS as part of a new biography. The three superordinate themes: ‘Road to diagnosis’, ‘The liminal self’ and ‘Learning to live with MS: an uncertain future’ emerged from the interview data with a cross cutting theme of ‘The impact on the self’ for both the person with MS and their support person. The findings captured the lived experience of being diagnosed with MS as close to the time of diagnosis as was possible within the constraints of the study. This has led to a nuanced description of the lived experience which has highlighted the concept of a liminal self in MS. The liminal self describes the experience where the individual’s conceptualisation of their taken-for-granted self has become invalid, as the they are faced with new knowledge of their diagnosis of MS which needs to be incorporated into the new self. The uncertainty relating to this condition makes this a difficult and liminal transition.To articulate this new knowledge, I have developed a conceptual framework which builds on previous theoretical positions of chronic illness and biographical theory to further illuminate the understanding of living with MS in the initial stages following diagnosis. This thesis argues for understanding the lived experience of biographical disruption following a diagnosis of MS to be understood in the proposed conceptual framework of ‘Threshold concepts and the liminal self in MS’. The framework has four main components: the ‘preliminal self’ which conceptualises the lived experience prior to diagnosis where symptoms of MS are experienced but the cause is not yet known; the ‘threshold concept: being diagnosed’ conceptualises the experience of being diagnosed as a pivotal moment in the transition from person with symptoms to person with MS, or partner to potential carer; the ‘Liminal self in MS’: conceptualises the lived experience of biographical disruption where the person’s sense of self is in transition; the ‘Post-liminal self in MS’ conceptualises the reincorporation of the sense of self transforming the self as a person with MS or support person of someone with MS. This experience is subject to on-going uncertainty and as such is never quite stable.Conclusion: The findings from this study highlight the need for health care professionals to recognise the liminal self and consider this in the support of the person with MS and their support person. The conceptual framework, grounded in the data from this study, provides a new way of understanding the lived experience of those affected by a new diagnosis of MS. As such, this framework offers an original contribution to knowledge