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Youth Advisory Committee: January 25, 2019

In Attendance: Karleigh, Augustina, Coulson, Jenell, Chelsi, Jasmyn, Matthew, Sara, Nadia

1) Introductions

Pronouns & Roles

  • Karleigh: supporting youth engagement on the EPI-SET Project; she/her

  • Chelsi: research coordinator for EPI-SET; she/her

  • Sara: peer support worker at the Slaight centre working with outpatient youth; she/her,

  • Nadia: research coordinator facilitating youth advisory committee for EPI-SET, she/her

  • Jasmyn: research analyst for EPI-SET; she/her

  • Coulson: currently working with CAMH on different projects; he/his

  • Jenell: she/her

  • Matthew: he/him

  • Augustina: lead youth advisory committee member and other CAMH projects; she/her

2) Introduction to Project & Purpose of the Advisory

  • This is a research study looking at the implementation of a new model of care called NAVIGATE for adolescents and young adults with newly diagnosed psychosis.

  • For the NAVIGATE program to be truly client-centered, our team needs guidance from individuals with lived experience.

  • One of the main objectives of the EPI-SET project is the authentic engagement of people with lived experience. The grant supporting this research project has an embedded strategy for patient-oriented research through the involvement of patients and family members as equal partners.

  • Members of the Youth Advisory Group can contribute in various ways, depending on their interest and availability. They may help us understand youth priorities, needs and expectations; refine our research tools (e.g. study consent form, survey or interview guide); provide insight on study findings; and eventually participate in sharing these findings with others. The extent to which you would be involved is entirely up to you.

3) Hopes & Hesitancy Activity

  • Augustina → desire to help people with mental illness and to eradicate stigma, especially as a woman of colour. She hopes for this project is to improve peoples’ lives in a coordinated and structured fashion. It is extremely important because it takes a village to raise a person. NAVIGATE involves an entire care team to assist you. Going through a first episode psychosis can be a very terrifying experience, my hope is to continue improving lives and reducing costs to the healthcare system and having awesome outcomes for individuals who are part of the project and for patients and families.

  • As a lead facilitator, she sits on the Steering Committee and will bring feedback back and forth for input with as much transparency as possible so that your thoughts and suggestions will be taken into consideration and are of critical value to this project.

  • Sara → no current hesitancy. Hopes to be a mediator between the institution, its structures, programs, services, and youth clients as a peer support worker. There isn’t a large power dynamic between her and clients because of her position as a peer. She hopes it will bring out the voices of the clients so that they are heard and met and can match with CAMH by generating shared goals and processes to better institutions.

  • Coulson → same hopes as Augustina to contribute to something that can help individuals with first episode psychosis because of the fear and confusion surrounding this diagnosis and anything to help people with a new life path; no hesitancy.

  • Jenell → hoping to contribute in a meaningful way, hesitant about the time to be involved fully in the committee.

  • Matthew → hopes to contribute to find ways to incorporate friends and families to help transition out of the state of ill mental health; not sure how much time he will be able to commit.

  • Nadia → enjoyed participation as an advisory committee member in the past; hesitancy regarding lack of experience.

  • Chelsi → advocate for patient voices, experience with youth group facilitation.

  • Karleigh → doing work along the way to support Augustina and Nadia to lead. Will be popping in and out and hopes to get to know everyone and contribute toward the advisory group for this project.

  • 4) Group Norms

  • Create a supportive environment and positive space

  • Augustina → Being given the time to say your thoughts, being heard without any condescension, allowing everyone their own time to speak, using respectful language (being aware of pronouns, condescension).

  • Karleigh → keeping confidentiality within the group, will have each other’s’ email addresses, sharing personal stories and information, respecting anything said within the group stays within the group, won’t be shared outside of the group.

  • Chelsi → communicating items with the Steering Committee will need group consensus to bring items to the Steering Committee. We can make a general statement instead of identifying individuals directly when sharing youth advisory information.

  • Coulson → to make it a comfortable group setting, if anyone has a problem with something I’m saying, please do say it.

  • Karleigh → everyone is coming with different levels of experience, knowledge and background, being respectful of the different perspective, if you want to have a conversation with someone, do not call people out but bring them into the conversation and supporting one another’s learning throughout the advisory

  • Transparency → minutes will be taken

5) Compensation/Honoraria

  • Outside of Toronto → provide visa gift card and send it out via mail; you will need photo ID and we would get confirmation that you received the package. Gift cards are another option, although we thought visa would be best as you would allow for more flexibility.

  • Matthew, Jenell, Coulson → fine with visa gift card

  • E-transfer → something we can look into, more challenging at CAMH and takes longer to process → unfortunately less simple option on our end at CAMH but this option can be revisited at a later point in time. – can be brought up at a later point in time

  • Frequency of payment to occur every 3 months (can be revised)

  • Sara and Augustina → cash

  • Record keeping for participation and compensation will be the responsibility of a member of the CAMH research team (exception → Augustina).

6) Scheduling Youth Advisory Meetings

  • A mutually convenient standing monthly meeting time will be selected via Doodle poll → Nadia to circulate

  • Coulson → unavailable first Tuesday of every month

  • Matthew → would prefer weekend meetings or lunchtime

  • Jenell → flexible, work is accommodating

  • Weekend/evening options will be discussed with the program manager.

  • Preference for lunchtime or afternoon meetings.

7) Zoom Videoconference

  • Videoconferencing software available for free

  • A meeting link and orientation guide will be circulated for the next meeting

  • Requires laptop with webcam and speakers

  • Also available for download on iOS and Android phones

  • Call-in and webcam combination options also possible

8) NAVIGATE Training Engagement Opportunity

  • In-person training for the different NAVIGATE roles from February 13-15th, 2019

  • Opportunity for family and youth advisory committee members with lived experience to speak to clinicians and family workers from the different project sties to engage additional advisory committee members.

  • Speaking with staff about your experience and how you are involved in the EPI-SET project

  • Option to join via Zoom videoconference

  • More information to be provided by Chelsi

9) Online Communication

  • Google Drive folder for documents, timesheets, minutes and record keeping → link to be circulated by Nadia

  • Email communication also ok

  • Discuss opportunity for feedback

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