Changing the caregiving landscape: A digital toolkit to enhance resilience in family caregivers of Canadians living with multiple sclerosis.

Studies

Study Title: Changing the caregiving landscape: A digital toolkit to enhance resilience in family caregivers of Canadians living with multiple sclerosis
Rationale: Family caregivers (i.e., family members or close friends who provide any type of support or assistance) for persons living with MS often require resources to support their wellbeing, and to enable them successfully perform their caregiving roles.
Study Description: The aim of this study is to explore how computer-based digital technologies can be used to support MS family caregivers in their caregiving role, and to enhance their wellbeing. Computer-based digital technologies involve the use of specific hardware, software, and micro processing features available on a computer or mobile device. Examples include websites, apps, online learning, webinars, podcasts, social media etc.

Participation: The study will be completed entirely online. If you agree to participate, you will be asked to complete a brief background survey online. After completing the survey, you will be invited to participate in one online focus group discussion with 3-4 other people. The focus group discussion will take approximately 90 minutes. The discussion will take place over Zoom. During the discussion, we will ask you to share your views about how computer-based digital technologies can be used to support MS caregivers in their caregiving role, and to enhance their wellbeing. We will identify opportunities for developing targeted resources to promote caregiver wellbeing.
Starting Date: 2022-10-03
Ending Date: 2022-12-31
Who can participate: We are looking for:
  1. Family caregivers of persons living with MS who:
    • Provide unpaid assistance (e.g., physical, emotional, or informational help) for a family member or close friend living with MS.
  2. Formal care providers who:
    • Have at least 2 years of paid/volunteer experience providing care and/or advocacy for people with MS and/or caregivers in formal care settings (e.g., MS Clinics)
  3. Community-based service providers who:
    • Have at least 2 years of paid/volunteer experience providing care and/or advocacy for people with MS and/or caregivers in community-based organizations (e.g., MS Society of Canada, Canadian Center for Caregiving Excellence) All participants must at least 18 years old, have access to an internet enabled computer, tablet, or smartphone, and be able to participate in one online focus group in English
Trial Institution: Queen's University
Trial Investigator: Dr. Afolasade Fakolade
Contact Information: careco@queensu.ca
Trial Funding: Social Sciences and Health Research Council (SSHRC)