Live-in Caregivers Perspectives on the Provision of Homecare Services in Manitoba


Study Title: Live-in Caregivers Perspectives on the Provision of Homecare Services in Manitoba
Rationale: This research study is being conducted to better understand the experiences of live-in family caregivers in Manitoba. The Principle Investigator, Kaitlyn Kuryk, is studying home care and the impact that it has on live-in caregivers and the home in which they reside. As part of her Ph.D. dissertation research, she is interested in learning about your experiences of being a live-in caregiver, and how this may have shaped you, and how you think about life, family, and home. She is also interested in exploring the kinds of physical changes or adaptations that have been made to your home since starting with the home care program. Her personal experience with home care led to her sociological interest in these services, and she is interested in understanding the experience of others, and potentially making positive changes in the home care system as a result of the study.
Study Description: Participants Selection
Individuals will be asked to participate in this study because, as they are a caregiver who lives with a recipient of home care, and have a unique perspective of home care services. Academic studies often research home care recipients, and the perspectives of caregivers are not always included. Thus, it is important to understand caregivers' perspectives, particularly, how home care services may affect the home in which they currently live.
I hope to speak with about 20 live-in caregiver participants
Study procedures
• The method of data collection for this study will be individual interviews and a brief tour of the caregivers' home.
• Participation in the study will involve one interview (in-person or on Zoom) lasting approximately 1.5-2 hours, followed by a brief tour of the home (5 to 10 minutes).
• The Principle Investigator of this study, Kaitlyn Kuryk, will be conducting the interview. She will be the only researcher entering the home.
• They will be asked some questions relating to your experience with home care services in Manitoba. These questions will help us to better understand your experience of caregiving, and how home care services have impacted their home.
• With permission, the sessions will be audio-recorded and the audio-records will be transcribed by Kaitlyn Kuryk to ensure accurate reporting of the information provided.
• Names will not be asked or revealed during the interview while the recording device is on.
• Kaitlyn Kuryk will also take handwritten field notes during the interview in which she will record her general impressions of the interview and how it went. No identifying information will be included in these field notes (anonymized).
• Following the completion of the interview, Kaitlyn Kuryk will ask for a tour of the home, particularly where care is provided to a loved one, and where they take time for themselves away from caregiving responsibilities. Of course, it is up to the participants whether they would like to show me your home and if so, which parts. Only photos of objects in the home space (not people) will be taken, and permission will be asked before each photo is taken. Participants will get a chance to review the photos at the end of the interview. During this tour, Kaitlyn Kuryk will take additional field notes, and may, with permission, take pictures. No identifying information will be included in these pictures. Consent to have pictures taken will be provided.
• Participants will be given the option of receiving a non-technical, lay language summary of project results either by email or regular postal mail, as preferred (they will indicate this on the informed consent form). This summary would include a thematic presentation of general findings from the constellation subproject as well as the other components of the project. Participants will receive the summary by 05/23.

Being an interview participant may not help participants directly, but the information gained through their experiences may help other family caregivers in the future. For example, other family caregivers may resonate with their experiences. Additionally, the experiences that you share may also help to inform policy work that benefits caregivers in Manitoba.
Starting Date: 2022-05-16
Ending Date: 2023-02-17
Who can participate: Individuals with MS, 50 years of age and older, use assistive technologies/special equipment/adaptive equipment/devices to assist with daily activities, live in the community, and live in Ontario.
Trial Institution: University of Manitoba
Trial Investigator: Kaitlyn Kuryk
Contact Information:
Trial Funding: N/A