Navigating The Unknown: Exploring the Lived Experiences of Persons Newly Diagnosed with Multiple Sclerosis in Canada

Studies

Study Title: Navigating The Unknown: Exploring the Lived Experiences of Persons Newly Diagnosed with Multiple Sclerosis in Canada
Rationale: This study aims to understand these initial reactions, the challenges they face, and how they cope with the diagnosis. By interviewing newly diagnosed persons, the research seeks to uncover their emotional and psychological responses, as well as the personal strengths and coping strategies they use. The goal is to provide insights that can improve support and care for newly diagnosed persons with MS. This includes informing healthcare professionals and policymakers to better address the needs of this group, ultimately enhancing their quality of life and mental health.
Study Description:

This study explores the experiences of persons in Canada who have recently been diagnosed with Multiple Sclerosis (MS). MS is a chronic disease that affects the central nervous system, causing symptoms like fatigue, muscle weakness, and balance issues.

Canada has one of the highest rates of MS in the world, making this research particularly relevant.

When persons are first diagnosed with MS, they often feel overwhelmed and uncertain about their future. This study aims to understand these initial reactions, the challenges they face, and how they cope with the diagnosis. By interviewing newly diagnosed persons, the research seeks to uncover their emotional and psychological responses, as well as the personal strengths and coping strategies they use. The goal is to provide insights that can improve support and care for newly diagnosed persons with MS. This includes informing healthcare professionals and policymakers to better address the needs of this group, ultimately enhancing their quality of life and mental health.

Procedures Involved in the Study:
Your active participation in this research is expected to be approximately 2 hours, considering all study procedures.

Interviews:
Conducting Interviews: Semi-structured interviews will be conducted with eligible participants either in person at the clinic or via video conferencing (Microsoft Teams), based on the participant's preference. Each interview will last approximately 60 to 90 minutes. This duration does not include additional sessions.

Completing the Interview:
Debriefing Session: Following the interviews, a debriefing session will be scheduled with participants. This session will take place either immediately after the interview or at another time, depending on the participant's preference and availability. The debriefing session, which lasts approximately 30 minutes, is separate from the interview duration. During this session, participants will have the opportunity to ask any final questions, clarify aspects of their experience shared during the interview, and add any additional information that may have been missed during the initial interview. This ensures their perspectives have been accurately captured and provides them with a chance to contribute further insights.

Optional Information Session:
Duration: Participants may also attend an optional information session lasting between 15 to 30 minutes. This session is designed to provide additional details about the study and answer any preliminary questions. Location and Timing: Optional information sessions will be held either in person at the clinic or via Microsoft Teams, based on the participant’s preference. These sessions will be scheduled at times convenient for the participants.

Recruitment Dates: Starting Date: 2024-09-12
Ending Date: 2025-09-12
Who can participate: Aged 18-59 - Diagnosed with MS within the last two years, with a minimum of six months since diagnosis to ensure participants have had sufficient time to begin establishing coping mechanisms and coming to terms with their diagnosis. - Proficient in English - Able to comprehend and follow study protocols
Trial Institution: Western University
Trial Investigator: Victoria Smye, and Co- investigator: Saba Hyarat
Contact Information: shyarat@uwo.ca
Trial Funding: self- funded, There is no grant or official proof of funding letter