Informed Consent – Phase Three ACE Intervention: Community Members

 Title of Study: Acceptance and Commitment to Empowerment (ACE) Intervention:

Reducing HIV Stigma & Promoting Community Resilience through Capacity Building

You may choose to listen to the audio file of the consent
Primary Researchers
Calgary SiteDr Añiela M. dela Cruz ( – Faculty of Nursing, University of Calgary
Durham SiteDr. Josephine P. Wong ( –  Daphne Cockwell School of Nursing, Toronto Metropolitan University
Edmonton  Site:Dr. Josephine P. Wong ( – Daphne Cockwell School of Nursing, Toronto Metropolitan University; and Dr. Carla Hilario ( – School of Nursing, University of British Columbia
London Site:Dr. Isaac Luginaah ( and Sulemana Ansumah Saaka ( – Department of Geography and Environment, University of Western Ontario
Niagara Site:Dr. Miya Narushima ( – Faculty of Applied Health Sciences, Brock University; and Dr. Maurice Poon (, School of Social Work, York University
Ottawa Site:Dr. Yin Yuen Chen ( – Faculty of Law, University of Ottawa, and Dr. Alan Li ( – Community Alliance for Accessible Treatment.
All SitesDr. Josephine Etowa – School of Nursing, University of Ottawa
All SitesDr. Kenneth Fung – Department of Psychiatry, University of Toronto
All SitesSalima Meherali – Faculty of Nursing, University of Alberta
All SitesMaureen Owino – Faculty of Environmental and Urban Change, York University
All SitesBukola Salami, Cumming School of Medicine, University of Calgary
All SitesMandana Vahabi – Daphne Cockwell School of Nursing, Toronto Metropolitan University

Purpose of the ACE Study: The purpose of this study is to reduce stigma related to HIV and enable groups and communities to become empowered to address HIV. We also want to study whether the ACE training is effective.   

 Taking Part in ACE Training: We are seeking 48 community members in each of the 6 project sites (Calgary, Edmonton, Durham, London, Niagara, Ottawa; total 288 participants) to take part in the Phase Three ACE training. To join the ACE training, you must self-identify as: 18 years or older; living with or affected by HIV related stigma; belonging to immigrant and/or racialized diasporic communities; living in one of the 6 project sites (Calgary, Edmonton, Durham, London, Niagara, Ottawa); fluent in English; and available to join the ACE six-week training.

Joining the ACE program means that you will complete six weekly online modules (about 1-hour each) and attend six weekly online Zoom group training (approximately 1.5 to 2.0 hours each). You also agree to complete the pre-, post-, and 3-month follow-up surveys (about 30 mins each), an activity log every two weeks on how you have used the ACE learning in your everyday life after the training, and an online focus group 3 months after the training (approximately 1-hour, and you agree to be Zoom audio-recorded). 

Taking part in this study is voluntary. If you decide to take part, you are free to take back your consent and to stop taking part at any time during the study and training. If you decide to leave the project, it will not affect anything between you and the researchers or the agencies that collaborate with the project. You may also choose not to answer any of the questions. If you decide to leave the project and do not want us to use your data, please let us know as soon as possible, or within 2 weeks of ending your participation. We will remove and destroy all your data to the best we are able to. We may not be able to remove your data totally if your ideas have been mixed with the ideas of other people in the project and taking away your data may affect their ideas.

Privacy and Confidentiality: All personal information you provide to us will be treated with utmost confidentiality. Your name and location/address are required for arranging interviews and making follow ups, where necessary. Personal identifiers such as your name and contact address will be accessible only to the primary researchers and research staff, and they will be stored separately from the study data. Pseudonyms and codes will be used in place of your identifiable information and subsequently used in all written materials that may come out of this study. Your voice from the audio recording of the group discussion will be kept confidential (see section on data storage).All information provided will be kept confidential. Your name will not appear in any report or papers about the study. We will use a study code on all the data we collected. Only the researchers and authorized trained research staff will have access to the data. Data from all participants will be combined when we analyze the data so that no individual and personal information can be identified. Only group findings will be reported in papers and presentations coming out of this research. The research team will keep what you share in the study confidential, except in situations where we are required by law to release the information (e.g., if we learn that a participant may engage in self-harm or harm others, or if someone’s life and wellbeing has been threatened). Also, delegated representatives of the Research Ethics Board may require access to your study data.

Limits on Confidentiality: Since group activities involve a number of participants, absolute confidentiality cannot be guaranteed. Confidentiality is kept only when all of us agree to keep everything that is shared in this room confidential and not share any information with anyone outside of the group sharing. To protect your confidentiality, we encourage you to think through and decide what you will and will not share in a group setting.  To protect everyone’s privacy, we will ask each of you to sign the agreement to confidentiality at the bottom of this consent form. You are also encouraged to use a made-up name while taking part in group discussions to enhance your privacy. 

Please note that the weekly group meeting is hosted by Zoom, a US company, and as such, is subject to the USA Patriot Act and CLOUD Act. These laws allow government authorities to access the records of host services and internet service providers. By choosing to participate, you understand that your participation in this study may become known to US federal agencies or hackers. . To enhance security, our team will only admit registered participants into the Zoom focus group and the Zoom room will be locked to deter hackers. Only the post ACE training focus group will be audio recorded.   All recordings will be saved in our designated researcher’s computer with  password protection. To protect your identity and privacy in a focus group, we will use the Zoom “Turn on Focus” mode that switches off all participants’ cameras. In this mode, each participant can only see the researchers and not anyone else.  

Risks of Participation: There are minimal risks of taking part in this study. You may feel emotional or uncomfortable with some of the discussion topics. All sharing is voluntary. At the end of this consent form, we have provided a list of support services that you may access for additional support if needed. In addition, to reduce risks of compromises in confidentiality, and to ensure we protect your confidentiality and privacy, we will strictly enforce ground rules that emphasize respect for open discussion, confidentiality, and privacy in the sharing of opinions and insights during group activities.

Benefits of the Study: You may or may not benefit directly from taking part in the training. However, your responses will inform effective program development and implementation to support efforts in reducing HIV-related stigmas and promote community wellbeing. 

Honorarium: You will receive a $30 honorarium as a token of appreciation for your participation in the evaluation survey, i.e., each time you have started filling out the pre-survey, or the post-survey, or the 3-month follow-up survey, you will receive a $30 honorarium, including if you decide to stop filling out the survey, or withdraw from the study.   You will receive $40 if you are randomly selected and you agree to take part in the 3-month post-training focus group. Once you have started taking part in this focus group, you will receive this honorarium, including if you decide to stop participating or withdraw from the study.

Data Security, Storage and Dissemination:

This study uses the SimpleSurvey software to collect survey data. SimpleSurvey is a Canadian company in Quebec, and its software service allows the research team to own and control all information input into the software. The ACE online learning will be hosted by Doteasy, which operates from Vancouver, British Columbia. Again, our research team own and control all information input into the learning platform. All data are stored in cloud service in Canada.

Data collected and downloaded from the cloud services in the ACE Study will be stored securely via encrypted and password-protected Google Drive at Toronto Metropolitan University (TMU), and access will be restricted to only the research team members, trained staff, and approved trainees. The Zoom recording of the focus group interview will be downloaded onto a password-protected computer and be transcribed into written texts as a password protected document. Once the transcription is completed and we have checked for accuracy, we will delete the Zoom recording. All data will be used only for the purposes of informing policy, practice, and education. Since this work is important, the digital data (without any names or personal information) will be stored for 10 years to guide the development of effective programs to reduce stigma. After 10 years (around October 2035), all questionnaires, focus group transcripts and notes will be destroyed. Results of the ACE study will be shared in the Project Updates Section posted on our website:

Funding Source: Project ACEis funded by the Canadian Institute of Health Research (CIHR).

Questions about the Study: If you have any questions about this study in general or about your role in this study, please feel free to contact:

Local SitesResearch Trainee / CoordinatorsPrincipal Researchers
CalgarySipiwe Mapfumo ( 1-888-789-7730, press 6Dr Añiela M. dela Cruz (
EdmontonFolasade Olaniyan ( 1-888-789-7730, press 5Dr. Josephine P. Wong ( Dr. Carla Hilario (
DurhamPragya Mishra ( 1-888-789-7730, press 1Dr. Josephine P. Wong (
LondonSulemana Ansumah Saaka ( / Mercy Nleya ( 1-888-789-7730, press 4Dr. Isaac Luginaah (
NiagaraSara Escarraga ( 1-888-789-7730, press 3Dr. Miya Narushima (
OttawaBilla Hissein ( 1-888-789-7730, press 2Dr. Yin Yuen Chen (

Research Ethics Approvals:

This study has been reviewed and approved by the Research Ethics Board (REB) of Toronto Metropolitan University (REB# 2022-267), Health Science Research Ethics Board of Brock University (22-122 – WONG), Research Ethics Board 2 of University of Alberta (Pro00127653), Behavioural Research Ethics Board of University of British Columbia Okanagan (H23-00246), Research Ethics Board 2 of University of Calgary (Pro00127653 / pSite-23-0024), Research Ethics Board of University of Ottawa (S-01-23-8683), Health Sciences Research Ethics Board of University of Toronto (Protocol #:38217), and the Non-Medical Research Ethics Board of Western University (122170).

If you have questions regarding your rights as a participant in this study, you may contact:

Toronto Metropolitan University: 416-979-5000, or email:
Brock University: 905-688-5550, or email:;
University of Alberta: 780-492-3111, or email:;
University of British Columbia Okanagan: 250-807-8000, or email:;
University of Calgary: 403-220-5110, or email:;
University of Ottawa: 613-562-5700, or email:;
University of Toronto: 416-978-2011, or email:;
Western University: 519-661-3036, 1-844-720-9816, or email:

Community Resources:

Below is a list of community resources that you may access should you experience any distress, or if you need more support.

    • ALBERTA: 1-800-772-2437
    • ONTARIO: 1-800-668-2437
    • 1-877-470-5200
    • Text 686868
    • (opens in a new window)
    • Crisis Text Line is free, 24/7 support for those in crisis. Text 686868 from anywhere in Canada to text with a trained Crisis Counselor. Crisis Text Line trains volunteers to support people in crisis.
  4. Good2Talk
    • Phone 1-866-925-5454 (or connect through 2-1-1)
    • (opens in a new window)
    • Good2Talk is a free, confidential helpline providing professional counselling and information and referrals for mental health, addictions and well-being to post-secondary students in Ontario, 24/7/365
  5. 408-HELP LINE

Consent to Participate

Agreement: by clicking on the ‘I agree’ button below, you are agreeing that you have:

a) read the information in this agreement and
b) have had a chance to ask any questions about your participation, and
c) have been told that you can change your mind any time and withdraw without consequences.

Note: Participants who choose the ‘do not agree’ option are not eligible to participate.

  • I agree
  • I do not agree [*participants who choose the ‘do not agree’ option will not be eligible to participate; a message of ‘Thank you’ will appear and the online program will close.]

Consent to be Zoom audio-recorded during post-intervention focus group interviews

Agreement: by clicking on the ‘I agree’ button below, you are agreeing that your participation in a post intervention focus group interview via Zoom will be audio-recorded for the purpose of research. You have the option in Zoom to choose to join by audio only. The video function of all participants will be turned off during this focus group.  

Note: Participants who choose the ‘do not agree’ option are not eligible to participate.

  • I agree
  • I do not agree [*participants who choose the ‘do not agree’ option will not be eligible to participate; a message of ‘Thank you’ will appear and the online program will close.]

Consent to be contacted for taking part in post training focus group

Agreement: by clicking on the ‘I agree’ button below, you are agreeing to be contacted by the research team so that we can invite you to join a focus group after the training.

Note: Participants who choose the ‘do not agree’ option will not be contacted.

  • I agree
  • I do not agree [*participants who choose the ‘do not agree’ option will still be eligible to participate/]

Confidentiality Agreement

Agreement: I understand that during all group activities, participants and facilitators may share personal and confidential information. I agree to respect everyone’s privacy, that is, I will not record any part of the focus group discussion and I will not disclose any personal information shared by anyone during the focus group unless I have obtained direct consent from the speaker that it is okay to do so.

Note: Participants who choose the ‘do not agree’ option is not eligible to participate

  • I agree
  • I do not agree [*participants who choose the ‘do not agree’ option will not be eligible to participate; a message of ‘Thank you’ will appear and the online program will close.]

Thank you for submitting your consent.  Information on the focus group Zoom meeting will be shared with you shortly.