Policy Guidelines for Engaging the
Ontario Caregiver Coalition with Research Studies

The Ontario Caregiver Coalition currently promotes research participation opportunities for studies likely to produce knowledge that benefits Ontario caregivers. We encourage researchers to consider the priorities of caregivers, and actively engage caregivers throughout all phases of the research cycle.

 

This policy outlines guidelines for researchers wishing to promote their research participation opportunities with the Ontario Caregiver Coalition. This policy is meant to promote transparency and reflect the collaborative nature of the relationships the Ontario Caregiver Coalition wishes to maintain with the research community.

 

The policy on the distribution of research surveys, letters of support, or any other support of research whether requests for in-kind contribution or participation of the Ontario Caregiver Coalition requires that the following pieces of information are sent for consideration to JBertrand@alzon.ca:

  • The specific requests for support and/or actions and participation from the  Ontario Caregiver Coalition

  • Posting/advertisement if applicable

  • Detailed research outline

  • How the outcomes of the research will affect Ontario Caregivers

  • Approved ethics review if appropriate

  • A summary of ethical issues

  • Any gains associated with research

  • A list of collaborators

  • Information on the timelines for data collection and who else is being approached to support the data collection.

 

All requests are evaluated for their alignment with the mission, vision, values and strategic priorities of the Ontario Caregiver Coalition, by the Research and Advocacy Subcommittee of the Ontario Caregiver Coalition.

 

For distribution of recruitment materials, given the high demand of requests, if approved, the distribution of the invitation message will be sent only once and potentially a second time depending on priorities for e-blast content at the time of the request.

 

We may charge a modest administrative fee to reflect the costs of providing the requested support. As a researcher, please also consider reciprocating by doing one or more of the following:

  • Offer an honorarium to the Ontario Caregiver Coalition to reflect the value of our contribution to your research

  • Support the Ontario Caregiver Coalition by becoming a member

  • Contribute a story about your research, or research in general, to our e-blasts

  • Present a webinar regarding the findings of your research which will be shared open access and can be linked

  • Volunteer your availability as an expert that the Ontario Caregiver Coalition can call on to present at a local community event

Current Research Participation

Stretching Exercise

Physical Activity Together for MS (PAT-MS): Pilot Study of a Dyadic Telerehabilitation Intervention for People with Moderate-to-Severe Multiple Sclerosis Disability and their Family Caregivers

Dr. Laura Pilutti, University of Ottawa

Study: Understanding vulnerability and resilience among young informal caregivers of persons with neurogenerative disease

Dr. Alexandra Fiocco, Ryerson University

Past Research Participation

costs of waiting for long-term care.JPG

The Cost of Waiting for Long-Term Care: Findings from a Qualitative Study

Seong-gee Um, Thrmiga Sathiyamoorthy, and Brenda Roche, Wellesley Institute