Electronic Thesis and Dissertation Repository

Thesis Format

Integrated Article

Degree

Doctor of Philosophy

Program

Nursing

Supervisor

Dr. Yolanda Babenko-Mould

Abstract

The prevalence of Multiple Sclerosis (MS) is increasing globally with 2.8 million cases worldwide as of 2021, with Canada experiencing the highest incidence for this disease (Multiple Sclerosis International Foundation [MSIF], 2021; Multiple Sclerosis Society of Canada [MSSC], 2021). MS is an autoimmune disease that damages the myelin sheath in the central nervous system (spinal cord and brain) which may result in problematic symptoms such as cognitive dysfunction and lead to physical disability (MSSC, 2021). There are over 90,000 Canadians with MS, impacting women on a ratio of 3:1 compared to men (MSSC, 2021; Statistics Canada, 2013). Current literature suggests that women may experience health, social determinants of health, and disability differently and therefore may benefit from researchers considering gender as a focus for investigation of phenomena (Tobiasz-Adamczyk et al., 2017; Nyberg et al, 2016). The World Health Organization [WHO] (2014) describes health as physical, mental and social well-being, and the WHO definition is the most common conceptualization of health in nursing scholarship (Simmons, 1989; Tariq-Alslman et al., 2015). There is a gap in the literature that currently examines gender from a women’s perspective as to how health is experienced (Phillips & Hamberg, 2016). Additionally, there is a lack of qualitative evidence about the lived experience of women with MS to help guide health care practice and future research (VanRuymbeke & Sneider, 2013). Therefore, the study sought to better understand the essence of women’s experience of health through the exploration of their well-being as they live with MS. van Manen’s (1990, 1997) hermeneutic phenomenology was used as a guiding methodological perspective in this study. Keywords: Interpretive phenomenology, Multiple Sclerosis, Women’s Health, Women with Disability, Nursing, Nursing Practice.

Summary for Lay Audience

This study explored the lived experience of the health and well-being of women affected by Multiple Sclerosis (MS). Health was defined using the World Health Organization definition to include physical, mental, and social well-being. This research is important as it shows how MS impacts being a woman and vice versa. The study participants were living within Southwestern Ontario exclusively, as this area is the most diverse and densely populated area in Canada. Furthermore, having participants in the same area allowed for an understanding of what health care resources were accessed in a specific geographical area. Key themes that emerged during this study were “foundations of vitality for women with MS”, “enhancing wholeness for with women MS”, “obstacles and roadblocks for women with MS”, with subthemes of “barriers to mental well-being”, “barriers to physical well-being”, and “barriers to social well-being” and “caring to enhance wholeness for women with MS”. This study revealed that women with MS who can make their own choices freely, without institutional or financial barriers, were more likely to experience health and well-being while living with MS. This included the ability to make choices surrounding medical decision such as medications, treatment and accessible devices and personal choices such as housing, employment, transportation, and education. The findings from this study may help develop more informed health care practices, policies and education that ultimately impact the health and well-being of women with MS. Furthermore, this study may lead to the development of future research in this area.

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