A Qualitative Study to Explore the Employment Experiences and Perspectives of Women Living with Multiple Sclerosis in the UK

一项旨在探索英国多发性硬化症女性就业经历和观点的定性研究

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Abstract

Employment is a key determinant of health, yet up to 80% of individuals with multiple sclerosis stop work within 15 years of diagnosis. The unpredictable nature of MS, both on a daily basis, and longer term means that maintaining employment can be difficult. Multiple sclerosis affects women disproportionately (> 60% of cases) and they often experience greater workplace challenges, yet few studies explore this. This study aimed to deepen understanding of the employment experiences and perspectives of women with multiple sclerosis to help inform future policy developments and care. A descriptive phenomenological approach was used involving thematic analysis from fourteen in-depth semi-structured interviews (data collected 2020). The inclusion criteria were adult women diagnosed with multiple sclerosis living in the UK who have current or previous experiences of employment. Seven themes were identified: Multiple sclerosis symptoms, workplace support, adjustments in the workplace, prioritisation of employment, making compromises, time and informal networks. These themes offer a descriptive account of the participant's experiences of work, how they experience their multiple sclerosis in relation to employment and some of the constraints and enablers to work. The findings highlight the importance of both individual and broader socio-environmental factors to successful employment outcomes. Tailored community support for these women, such as that provided by nurses, was considered central. There is a need for better collaboration at a policy level between government departments and for more research into women with chronic conditions, to further explore the relationship between different variables.

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