Partnering with Disabled Youth: A participatory study of youth engagement in health research and governance
This research is about exploring youth with disabilities’ views on patient engagement in research and/or in advisory roles within healthcare governance activities such as participation on committees that oversee patient safety or staff hiring. Patient engagement means that healthcare institutions partner with patients and their families in order to learn about their priorities for improving services and to involve them as part of the team in doing research. This project is focused on engaging youth with disabilities as collaborators in conducting research and/or their advisory roles in governance activities. This is important because there are almost no studies that are focused on youths’ own views on being involved in these roles. This study will help us learn directly from youth with disabilities about how to best support their involvement as research partners and/or in governance roles in ways that are meaningful, fair and important to them.
To help us learn how youth with disabilities would like to collaborate with research teams and in governance roles, we will work together with young people in this study to co-develop training modules for healthcare professionals to address the human aspects of care. By human, we are referring to the social, emotional and moral dimensions of disability experiences and care. Training for healthcare professionals often focuses on the biomedical aspects of care and does not address the human aspects of care. The training modules will be designed to help address this gap.
Gail Teachman, Barbara E. Gibson, Yani Hamdani and Franco Carnevale
Who can participate?
- Youth aged between 13 and 28 years
- Live in Ontario
- Current/past recipient of children’s rehabilitation services (at least one of PT, OT, SLP)
- Provide independent consent to participate in the study
- Able to understand and converse in English (youth who use AAC will be included provided they can compose a message using their AAC system)
- Comfortable/consent to interacting in virtual individual and/ or group dialogues with researchers and other participant-collaborators
- Youth must be able to use the video function in Zoom
The study involves two parts. Participants can take part in all parts of the study:
- Dialogues: Study participants will attend six dialogue sessions over the course of six months virtually using Zoom or at Holland Bloorview, when pandemic restrictions are lifted and participants feel comfortable attending in person. Each dialogue will last no more than two hours. There will be a maximum of 4 individual and 2 group dialogues. Participants can also choose to participate in the individual session only. During the dialogues, participants will engage in discussions to help us understand youth perspectives on their involvement in the research and governance processes and to help develop training resources for healthcare practitioners. (max 12 hours total)
- Journals: After the group dialogues, each participant will be asked to fill in a journal template about their experiences in the dialogues. (1 hour each – 2 hours in total)
Participants will receive $25/hour of their participation in the dialogues to thank them for their time.
Deadline to Apply
Recruitment for the study will continue to the end of December 2020, or when we have reached 10 participants.
Interested in participating?
If you are interested in participating in this study or have additional questions, please contact Bhavnita Mistry, Research Coordinator at email@example.com or (416) 425- 6220 ex 3403 with your interest, and they will get back to you shortly. Contacting us does not obligate you or your child to participate in the study.
This study is funded by a Training Innovation Grant through the CHILD-BRIGHT Network, a SPOR-funded CIHR initiative; Western University Catalyst Grant; SSHRC (in association with VOICE Research, McGill University)