Understanding the Lived Experience of Health Through the Exploration of Well-Being of Women with Multiple Sclerosis in Southwestern Ontario


Study Title: Understanding the Lived Experience of Health Through the Exploration of Well-Being of Women with Multiple Sclerosis in Southwestern Ontario
Study Description: This research study will explore the well-being of women with MS. The World Health Organization supports that our health is comprised of mental, physical and social well-being. This study is seeking to better understand how women with MS might approach their own well-being, or what issues might be present to prevent a women with MS from experiencing well-being. Additionally, how gender may impact the health of women has not historically been well accounted for in medical research. To help rectify this, there is a growing area of interest from researchers to conduct studies as to how gender may influence ones lived experience. This study will use guided discussions to explore various factors that fall under social determinants of health that may impact ones well-being; such as how MS impacts your relationships and family life, or ability to engage in meaningful work. The study is important as this may help influence clinical care and approaches for people with MS, specifically for more tailored care that takes into account how gender may influence MS. Also, the study may help develop better policies, educational resources and further research involving the influence gender may have with MS.
Participants will be recruited for a confidential 60-90 minute guided interview that will be audio recorded. Additionally, to confirm the results participants who have consented for follow up will be contacted via telephone or Zoom for a 10-15 minute discussion confirming the results. The recruitment and scheduling of interviews will take place over November and December of 2019. All identifying data pertaining to the participants will be removed from the study's results to safeguard the participant's confidentiality.
People affected by MS will be impacted from this research as this study will help collect data to their enhance overall well-being. Specifically, the data collected from the study may potentially better guide clinicians to provide effective patient-centred care that includes going beyond just treating MS as disease. Currently, there is gap in our existing knowledge that explores how gender influences the well-being of individuals with MS. This study may help improve the overall quality of life for people living with MS through helping to better inform policies and educational tools that include well-being. For example, the results from this study may have implications to improve upon existing policies for people with MS, such engaging in meaningful work, relational support, or helping to better meet financial needs. The outcomes expected from this study will include more tailored care that encompasses the well-being for women with MS and may lead to similar studies with men or non-binary individuals, as collecting this data may also provide a foundation for future research. Lastly the goal of this study is to be completed as a partial requirement for Jennifer Howard's PhD program. From this Jennifer will publish a doctoral dissertation and use the results towards future publications, conference presentations and to help guide education, research, policies and health care practices related to MS.
Recruitment Dates: 2019-11-01- 2020-03-31
Who can participate: The study inclusion/eligibility criteria includes: the ability to fluently speak and read in the English language, self-identifies as woman, over the age of 18, has been diagnosed with MS, has the ability to make decisions independently (for example signed informed consent), resides in Southwestern Ontario, and consents to being audio-recorded for the interview. Exclusion/ineligibility criteria for the study includes: not-fluent in speaking or reading the English language, less than 18 years of age, has not been formally diagnosed with MS, does not make decisions independently- for example has a substitute decision maker or legal guardian, does not reside in Southwestern Ontario, self-identifies as a gender other than a woman and does not consent to be audio-recorded for the study interview.
Location of Trial: Ontario
Contact Information: Jennifer Howard
Trial Funding: Nursing Research Interest Group