Contribute to Caregiver-Focused Research
The Ontario Caregiver Organization is frequently asked to connect researchers and other stakeholder organizations with caregivers. Where appropriate, we will share these invitations and connect interested members with relevant parties.
In the past, we have supported focus groups with the Ontario Ombudsman office, research initiatives with various academic institutions and research to practice initiatives with various health care providers. We will continue to share these opportunities and thank caregivers who have engaged and contributed in this way.
There are external opportunity for caregivers in French only. For these opportunities, please visit Perspectives Aidance Naturelle in French: https://www.perspectivesaidancenaturelle.ca/occasions-externes
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Research Study: Insights from Informal Caregivers of Lung Transplant Recipients
About the Opportunity
Researchers at the University of Windsor are looking for informal caregivers supporting someone after a lung transplant—a family member, friend, or loved one- to complete a survey. A study titled Through the Lens of Those Who Care: Insights from Informal Caregivers of Lung Transplant Recipients explores caregivers’ experiences—challenges they face, the supports available, and the factors that help or hinder ability to cope.
They are looking for participants based in Ontario who have cared for someone following a lung transplant.
What will be expected of me?
You will be asked to complete an online questionnaire.
The survey includes questions about transplant-related caregiving experiences. It is expected to take approximately 20 minutes to complete.
Participants will be entered into a draw for a gift card ($25 Everything Gift Card)
How do I participate?
Please email JSResearch@uwindsor.ca or complete the pre-screening survey to see if you are eligible to participate.
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You cannot leave comment in this blogpost unless you are a part of the project panel.
Experiences of Immigrant or Racialized Caregivers Supporting a Person Living with Dementia in Canada
About the Opportunity
Make your voice heard and help improve services for caregivers from diverse cultural backgrounds. The objective of this study is to better understand the challenges, strengths, coping strategies, and support needs of caregivers to inform improvements to services and policies in a more inclusive manner. The researchers are looking for participants who are:
- Are 18 years of age or older
- Currently support or have recently supported a loved one who has memory problems, neurocognitive issues, or Alzheimer's disease, for example
- Identify as an immigrant and/or a racialized person
- Reside in Canada
What will be expected of me?
- Taking part in an individual online interview (via Zoom)
- Lasting 90 to 120 minutes
- In French, English, or in your mother tongue, when possible, with an interpreter
- Conducted by a trained member of the research team
- Audio/video recorded (with your authorization)
- Preceded by a sociodemographic questionnaire (5 min)
- You are free to decline to answer any question and to end the interview at any time.
As a token of appreciation, a compensation of $50 (gift card) will be offered for your time.
How do I participate?
Email Berline Awoume, Project Coordinator at Saint Paul University, to express your interest.
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You cannot leave comment in this blogpost unless you are a part of the project panel.
Share Your Experience with Dementia Care
About the Opportunity
Do you or a loved one have experience accessing health or social services after a dementia diagnosis? The Algoma Ontario Health Team (OHT) is inviting residents to share their dementia journeys. They are seeking individuals living with dementia, as well as caregivers, to share their experiences and insights to help inform local services and initiatives.
How do I participate?
You can express your interest by calling (705) 989-4732 or emailing info@algomaoht.ca. You can learn more by visiting the Algoma OHT website.
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You cannot leave comment in this blogpost unless you are a part of the project panel.
Research Study for Black Caregivers
About the Opportunity
York University is conducting a study to understand how technology can support care and social connection for Black older adults and their families in Canada. They are looking for caregivers of Black older adults aged 60+ who are homebound and living with mild cognitive impairment to participate in their research.
What will be expected of me?
- Online or in-person one-on-one interviews
- Compensation will be provided to participants
How can I participate?
If interested, please email Dr. Michael Kalu at mkalu@yorku.ca or Dr. Chigozie Ezulike at cezulike@yorku.ca or get in touch by telephone at 437-224-9891.
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You cannot leave comment in this blogpost unless you are a part of the project panel.
Volunteer Facilitator Support Opportunity with Alzheimer Society Peel
About the Opportunity
The Alzheimer Society Peel (ASP) runs monthly support groups (CarePartner Café) for their CarePartners to provide connection, shared understanding, and peer support for those caring for a loved one living with dementia. This is offered once in person and once virtually each month. These spaces are facilitated by staff with the help of volunteer CarePartners.
As their CarePartner Café continues to grow, ASP is looking for individuals with lived experience with dementia to volunteer as peer facilitators for these virtual and in-person support groups, alongside staff on a once-per-month basis. Volunteers would allow ASP to reach and support more CarePartners in a meaningful way.
What would be expected of me?
- Lived experience or knowledge of dementia as well as services and supports in the community
- Sensitivity to the cultural/ religious nature of the community that is being served
- Maturity, professionalism and an ethical perspective
- Ability to listen, to have clear and concise communication skills, to link members with others who share something in common, to confront those who are unwilling or unable to acknowledge their difficulties and make changes
- Co-facilitate sessions, provide peer connection, and support discussion in a way that complements staff facilitation
- Able to commit to every group offered (once a month)
- Arrive at least 10 minutes before the group and stay ten minutes later to debrief. This means a time commitment of approximately 2-2.5 hours depending on the group.
How do I get involved?
If interested, contact Imane Maatallah at i.maatallah@alzheimerpeel.com or by phone at 416-886-4285. A short interview will be conducted with the volunteer coordinator and the support group staff facilitators. Training will also be provided after a successful interview. Applicants will be accepted on a rolling basis.
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You cannot leave comment in this blogpost unless you are a part of the project panel.
Co-design a Caregiver Experience Survey
About the Opportunity
Trillium Health Partners invites caregivers who are 16 years of age or older and reside in Canada to take part in a research project to help co-design a new caregiver experience survey. Your insights and lived experience will play a vital role in shaping a tool that reflects what matters most to caregivers.
What will be expected of me?
- A 2-hour virtual focus group
- Willingness to share your experiences and ideas about caregiver needs and challenges
An honorarium will be provided for your time.
How do I participate?
Please contact Kristina by email or phone (647-249-3809) to express your interest or learn more.
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You cannot leave comment in this blogpost unless you are a part of the project panel.
Help Develop Education Modules for the Developmental Disabilities Alternate Level of Care Collaborative
About the Opportunity
The Specialized Clinical DS Network (SCDSN) is looking for subject matter experts (SMEs) and persons with lived experience to help develop education modules for the Developmental Disabilities Alternate Level of Care (DD ALC) collaborative project to build capacity within the DS sector to better support people with intellectual and developmental disabilities (IDD) who are currently designated as Alternate Level of Care (ALC) in hospital settings. The goal is to facilitate their safe and sustainable transition into community-based living environments.
What will be expected of me?
- Selected SMEs (4) will be responsible for researching, creating and presenting materials related to a module for the 4-module staff learning video package in an interactive and inclusive fashion in collaboration with a person with lived experience as well as facilitating 5 bi-monthly Communities of Practice (CoPs) for support staff who have taken the training and applying the skills learned into practice.
- Selected people with lived experience (4) will work with the SMEs to provide input based on their lived experience to ensure the modules include real-life experience and ideas.
- Participants will receive financial compensation for their time.
How do I participate?
Please email admin@scdsn.org and reference this study for more information.
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You cannot leave comment in this blogpost unless you are a part of the project panel.
Research Study for Young Carers
About the Opportunity
Researchers at the University of Manitoba are looking for young carers between the age of 12-30 who are providing care for a family member or friend and currently reside in Canada to participate in their study, "Partnering for Young Carers’ Health and Well-Being: Co-Designing Policy Recommendations and Research Priorities for Young Carers Across Canada."
What will be expected of me?
- Participate in a virtual interview, including on evenings and weekends
- Create artwork of your choice: video, photo, music, painting, etc. (optional)
- All participation is voluntary, and your identity will be kept confidential.
Participants will receive a gift card in appreciation of their participation.
How do I participate?
Please contact ingauge@umanitoba.ca to express interest.
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You cannot leave comment in this blogpost unless you are a part of the project panel.
Survey: Understanding Food Insecurity on Young Organ Transplant Patients
About the Opportunity
The University of Alberta is looking for parents or caregivers of children and youth (0–19 yrs) who live in Canada and have received a liver, kidney, or multi-organ transplant to participate in a brief survey.
This survey will help understand the impact of food insecurity (limited access to safe and nutritious food) on children's health. All organ transplant caregivers are welcome to participate, whether or not you experience issues of food insecurity. By joining this study, you will help us build evidence to advocate for effective policies and interventions that address food insecurity in this population.
What will be expected of me?
- Fill out a brief online survey (5-10 minutes)
- You must be located in Canada to participate
- If interested, there is an optional second phase following the survey which involves an online interview and a diet record, allowing for a more in-depth investigation of mental health, quality of life, diet quality, and the facilitators and barriers to food security.
How do I participate?
You can access the survey using this link. For any questions, please email Dr. Diana Mager at mager@ualberta.ca. -
You cannot leave comment in this blogpost unless you are a part of the project panel.
Research Study: Exploring the Driving and Dementia Roadmap
About the Opportunity
This study explores how people living with dementia and their family/friend caregivers use an online resource called the Driving and Dementia Roadmap to support them through the process of making the decision to stop driving and the transition to no longer driving.
Baycrest Health Sciences is looking for caregivers who provide support to a person living with dementia (any type) who are currently driving or have stopped driving within the past two years and who speaks English.
They are also looking for insights from those living with dementia (any type) who are still driving or have stopped driving within the past two years and who speak English.
What will be expected of me?
You will be asked to use the Driving and Dementia Roadmap for 2-6 weeks, write your thoughts about it in a diary, and take part in a virtual interview via Zoom.
How can I participate?
Contact estasiulis@baycrest.org
