Partnering for Young Carers’ Health and Well-Being: Co-Designing Policy Recommendations and Research Priorities for Young Carers Across Canada

Summary:

Through this study, we will gather evidence from young carers, their family members, and others who work with or provide support to young carers. This research will inform the development of policies and research priorities meant to enhance the health and well-being of young carers across Canada.

Researchers:

Principal Investigator (PI): Dr. Roberta Woodgate, Distinguished Professor

Helen Glass Centre for Nursing, University of Manitoba

204.474.8338

Co-Investigators: Dr. Donna Martin, Professor, University of Manitoba

Dr. Aynslie Hinds, Adjunct Professor, University of Winnipeg

Dr. Marlyn Bennett, Associate Professor, University of Calgary

Dr. Miriam Gonzalez, Post-Doc Student, University of Manitoba

Dr. Javier Mignone, Associate Professor, University of Manitoba

Dr. Pauline Tennent, Manager, Centre for Human Rights Research, U of M

Dr. Susan Kirk, Professor, University of Manchester

Dr. Julia Witt, Associate Professor, University of Manitoba

Fitsum Areguy, Student, Wilfrid Laurier University

Yalinee Barendra, Toronto General Hospital

Oliver Fitzpatrick, AMI-Quebec Action on Mental Illness

Nicholas Goberdha, Student, Concordia University

Melodie LePage, Student, University of Manitoba

Angelo Luu, Student, Toronto Metropolitan University

Liv Mendelsohn, Executive Director, Canadian Centre for Caregiving

Excellence

Enya Provido, Student, Murdoch MacKay Collegiate

Lucksini Raveendran, Researcher, Ontario Ministry of Health

Who can participate?

You are being asked to participate in this study because of your experiences as a young person who regularly provides/provided informal (unpaid) care to a family member, loved one, or friend.

Ages 12 - 30 (and former young carers also welcome). Ages 12-14 will be asked for parental consent.

What's involved?

If you take part in this study, you will have a choice of completing/participating in any or all of the following activities which will all take place virtually (secure University of Manitoba Zoom/ Teams line):

1) Demographic Form: We ask that you complete a short demographic form. We expect that this would take 5-10 minutes to complete.

2) Journey Map Activity and Interview: You will be asked to create or draw a journey map of your caregiving journey and then to take part in an individual interview. A journey map, composed of words and drawings/symbols, portrays a picture of a story line timeline of a particular experience. During the interview you will be asked about your experiences with caregiving and how it has affected your life, as well as your ideas for important priorities for young carers’ health and well-being. The journey map is expected to take 15-20 minutes and the interview is expected to take 1 to 2 hours. The interview will be digitally audio-recorded using a Sony digital recorder for telephone interviews or by using the Zoom/Teams recording function for online interviews. You will be required to turn on the video camera of your computer/phone at the beginning of the virtual interview. Interviews will be transcribed manually by the transcriber who has signed a form stating that they will not discuss any item on the recording with anyone other than the researchers. After the interview, the study staff member will record field notes, which include information about the interview that might not have been captured in the audio recording.

3) Photovoice Activity

a) Using your phone camera or photo camera (which we can provide) over a 4 – week period you will be asked to take 10 photographs that tell your story, that reflect, from your perspectives, your caregiving history and experiences, and itsinfluence on you and your daily life. We expect this activity to take approximately 1 hour. Your photos will be used to create a visual story about your lived experiences, to develop infographics and a photovoice Zine about the project, and to create GIFs - a series of moving images and miniature animations that are easy to share online. If there are photos of anyone other than you in the photos, you will need to make sure you have their permission to be part of the study by signing another form (please ask the research staff).

b) Then, you will be asked to participate in a photovoice interview. In this interview, you will be asked questions about your photos, including why the photos were taken, what can be explained from the photos, how they relate to your life, and how they relate to your experiences of caregiving. This interview is expected to take between 1 to 2 hours to complete. The photovoice interview will be digitally audio-recorded using a Sony ditigal recorder. You will be required to turn on the video camera of your computer/ phone at the beginning of the virtual interview. Interviews will be transcribed manually by the transcriber who has signed a form stating that they will not discuss any item on the recording with anyone other than the researchers. After the interview, the study staff member will record field notes, which include information about the interview that might not have been captured in the audio recording.

How will participants be compensated?

$35 gift card per interview

Deadline to participate:

December 2028

Contact information:

If any questions come up during or after the study, contact the principal investigator, Dr. Roberta Woodgate at 204.474.8338 or by email at Roberta.Woodgate@umanitoba.ca.