"It's wonderful becoming a mother...I don't think I am a mum with multiple sclerosis, I'm a mum". The lived experience of mothers with multiple sclerosis in Italy

Willson, Catherine Louise (2013). "It's wonderful becoming a mother...I don't think I am a mum with multiple sclerosis, I'm a mum". The lived experience of mothers with multiple sclerosis in Italy. PhD thesis The Open University.

DOI: https://doi.org/10.21954/ou.ro.0000ef09

Abstract

This qualitative study explored the experiences of mothers with multiple sclerosis in Italy, who are an underrepresented group in the academic literature. Few studies have considered the maternal experiences of women with MS, and those that have focus on pregnancy and its impact on the disease, with the wider literature on motherhood and disability concentrating more on women who became mothers when aware of their impairments. This study involved this latter group, but also included women who were diagnosed after becoming mothers. With phenomenology guiding the methodology, in-depth interviews were conducted (n=16) with women at various stages of MS, with some follow up interviews (n=7). The study explored what factors impacted on the mothering role; the relevance of the timing of diagnosis; any impact of external barriers, and the Significance of wider socio-cultural and political influences. The analysis was conducted using interpretative phenomenological analysis (IPA), from which three overarching themes emerged - self and identity, relationships with others, and challenges and support within society. Self and identity centered on how the participants viewed their role as mothers, with some adjusting their roles in light of their impairments. Relationships concerned the value of friendships and asking for and receiving help from family members. How women discussed their MS with their children, and reactions to this was also discussed, which was particularly relevant regarding the timing of when the women received their diagnosis. Many women faced barriers within society from others' attitudes, including a lack of government support, but also because of physical barriers which affected how they fulfilled their role as mothers. The study findings have implications for practice, which require further investigation. These include recognising the potential of the family in providing empowering support, and the value associated with being a mother, rather than solely focusing on doing motherhood.