|Study Title:||Multiple sclerosis and medical assistance in dying: A qualitative exploration of patient and family-centered care|
|Rationale:||To better understand the perspectives, knowledge, knowledge-seeking behaviours, experiences, and needs of individuals who are living with multiple sclerosis, their family members, friends or supporters, and care providers regarding end-of-life planning/goals of care and/or, palliation and/or medical assistance in dying (MAID)|
Our goals are to positively inform person-centered end-of-life care and to support access to end-of-life person-centered care options, which may help reduce fear, anxiety, and suffering among those impacted by MS and their care partners. The research questions are:
• What are the perspectives and experiences of participants concerning MAID?
• Are there any suggestions from participants for improving MAID information and services?
Objectives are to:
• Outline how, where and when participants obtain information regarding MAID and describe their information preferences
• Reveal the interactions, communication, and experiences of participants when discussing MAID with others
• Explore the reasons for which ILMS may or may not consider MAID
• Identify potential improvements in how MAID is accessed and explored
• Explore any gender or socioeconomic differences in participants' needs, information preferences, and experiences.
Agreeable participants would be invited to participate in an interview and answer some survey based questions. Information will be shared back individually to participants via email or mail with an invitation to add any additional information. Our results will be shared back with the MS Society of Canada, MS and other physicians, nurses, therapists and care providers. Information will be shared with the Saskatchewan Health Authority. All student results will also be made available on https://ourspace.uregina.ca/handle/10294/14928
|Recruitment Dates:||2023-06-19 to 2023-12-22|
|Who can participate:||This study will occur in Saskatchewan (the main cities of Regina and Saskatoon, and outreach to rural and remote regions). You can participate if, you are an inidividual living with MS who lives in Saskatchewan, is 18 years and older and has been diagnosed with MS for at least a year. Care partners/supports can participate if they are Saskatchewan residents, 18 years or older and are a care partner/support of an individual living with MS|
|Trial Investigator:||Janine Brown
|Trial Institution:||University of Regina|
|Trial Funding:||Saskatchewan Health Research Foundation|