Use of social media in dialysis: establishing research priorities in partnership with people with lived or living experience

Study Lead

Isabelle Ethier

Centre Hospitalier de l'Université de Montréal

Overview

Our research team is interested in the use of social media in people currently on dialysis across Canada. Ultimately, we wish to identify the best strategies to engage with people living with chronic kidney disease (especially people on dialysis), on social media, as an opportunity for education and social support/community building, between care teams and people with lived experiences.

Our research team is doing preliminary work in this field by:
1) looking at what is already known about the use of social media in kidney care through a review of the publications on this subject (literature review)
2) evaluating the accessibility of Internet-based materials (including social media) to people on dialysis through the availability of Internet connection and/or other resources in dialysis units (e.g. electronic screens) across Canada (environmental scan)
Based on this preliminary work, we wish to set up a committee of people with lived experiences including 6 patient partners (1 research team member and 5 additional patient partners) who will be highly involved as decision-makers throughout the project. We will meet with them over teleconference 5 times over a 1-year period. Through these discussions, we will seek input from people currently on dialysis about research priorities and research questions that are relevant to them about the use of social media in the dialysis sphere.
This initiative is a partnership between people with lived experience and researchers to collaborate on future research projects.
We are looking for patient-partners to participate in a people with lived experiences committee to discuss findings from preliminary work and establish research priorities/questions for a subsequent grant proposal

Participants (patient-partners) will be invited to attend 5 online meetings (1-hour per meeting) to discuss findings from preliminary work and establish research priorities/questions and collaborate on a subsequent grant proposal. Participants will be compensated $50 CAD per meeting they attend.

Agenda of meetings is planned as follows:
Meeting 1 – Introduction meeting
Meeting 2 + 3 – Presentation of preliminary work by the research team & discussion
Meeting 4 – Discussion on research priorities/questions from people with lived or living experience & potential methodologies
Meeting 5 – Presentation of research proposal documents by the research team and discussion/feedback
Background work results will be presented to participants during the meetings for discussion and feedback. Participants may be invited to read some materials before or after meetings, on a voluntary basis only.

Eligibility

  • Adults (18+ years old) currently on dialysis in Canada (in-center hemodialysis, home hemodialysis or peritoneal dialysis)
  • Able to speak either English or French
  • Access to an Internet connection to attend the meetings using a computer or a smartphone (Zoom or Teams platform will be used)
  • Available for the online meetings (schedule for the meetings will be established with the participants according to their availabilities)

Type of Participation

Patient Partnership

Treatment

Hemodialysis

Location

All provinces and territories

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